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My Five Anns

*Note: My goal here is to put a more human face to several psychiatric disorders. I hope you will read and learn. All names have been changed and identities concealed.

As part of my undergraduate experience I wanted to do some volunteer work in the community. The university I attended had a program running that enabled me to do just that. I was privileged to work in three different settings. One was a care facility that dealt with geriatric patients. The other larger facility I worked in was a halfway house for women who had been discharged from the state psychiatric hospital. I also worked with someone in a private home. I will be talking about the two latter experiences in this post.

When the LCSW (licensed clinical social worker) interviewed me for the job and match me up with patients, I had not given working with schizophrenics much thought. I was excited to learn and my fear factor was low. I must have said something that made them think of matching me with Ann.

My first assignment was to work with a woman who had been out of the hospital for four years. (Remember that I’m a young, enthusiastic, university student who still thought of herself as indestructible. I didn’t give a second thought to being in a private home with a schizophrenic. I didn’t even think that something terrible could happen to me. Ann was just someone who needed some help. I was someone who wanted to not only offer what help I could—I wanted to learn. More later.)

Ann had an adolescent onset with her schizophrenia. Her intelligence had been affected, and I found that I was working with a woman who had the equivalent intelligence of a fourth-grade education. The social worker explained this to me before I had met Ann, but seeing it in action changes the hearing of the information. My job with Ann was to get her out of the house so that she could eventually learn to take the bus to the day treatment center in a larger town. They had also hoped that I could find a way to teach Ann about taking better care of her diet. This was to be in preparation for a weight-loss program they hoped to enroll her in.

It began with tiny things. First, I spent time with Ann. I had to let Ann feel safe with me if I ever hoped to get her away from her home. When she finally made her first attempts to leave the house, they were small. First we walked outside for five minutes. Eventually we went to the nearby park. Then mini health lessons sandwiched between talking about being away from her house. If she began to panic, we returned to the house. She learned safety and I encouraged her in her confidence.

I learned a great deal in working with Ann. I never asked her about what being schizophrenic was like. I did ask her why she was willing to take medication that caused her to have terrible side effects. I admit to being curious, and when we had built up a good relationship, I queried her as to why she was willing to swallow pills that others would take for a brief period of time, go off, and then wind up back in the hospital because of not taking the drugs. “Why would you do that?” I asked. She replied: “I don’t want to go back to the hospital. EVER. I’d rather take these pills because that is a terrible place to be and it is scary in there.” Scary? The reality of being in the hospital was worse than what she’d go through to be there? That is a powerful reason to take your medication.

Several years later I found myself waiting for a bus to get to school and I heard Ann yell hello as she passed by in a car. I did a double take: That is a thinner Ann!!! I found out that the work I had done with her paid off in big ways. She was able to get to the cooking classes and into the weight-loss program. She was still taking the medication. Her success impacted me in ways that helped me in my future work as a mental health professional.

I’ve thought about the statement Ann made about taking medication. I’ve thought of it from understanding the terrors of what a person with schizophrenia can endure. My understanding is not complete because I can’t feel or see as they do. I’ve come to respect that statement made so many years ago and I take that with me in my work. Ann impacted me in powerful ways that I continue to discover.

Ann is part of the one percent in the US that suffer from schizophrenia. Most of this one percent desire some form of treatment so that they can live as best they can. Some don’t understand the need to swallow the pills. Some can’t see beyond the side effects of the medication, and others think that having a symptom-free life for a short time means that they don’t need the pills any longer. Because of those thoughts, the cycle of hospitalization and illness continues. This is the talked-about “revolving door” that leads to nowhere.

After working with Ann, I was asked to go to a halfway house and run a fun music group for the residents there. “Get them to sing, talk, and create something,” I was told. I could do that because I like to sing and create things.

The group I ran had eight members. Four of the women were named Ann. (I wondered to myself if there was some kind of strange coincidence that so many of the women I was working with were named Ann.) The women were wonderful to get to know.

The group was a short-term project that managed to get the women to interact more on a light-hearted level. During my time running the group, one of the Anns—and my favorite group member—went off of her medication and was rehospitalized. 

When Ann went back to the hospital, it affected the other seven women deeply. They cared about each other and were working to integrate back into the community. That following group session was a somber one in which we just sat and sang some sad songs. Each woman had her fears and knew that the same thing could happen to her. They had lost a friend to a relapse.

Seeing the impact of what had happened to this Ann sobered me to the realities of the population I was working with. I was told what had happened: A hallucination had caused her to think that she could fly. She tried, failed, and cracked three of her ribs.

While schizophrenia can wreak havoc on the mind, it does not mean that the person with schizophrenia will ever become violent with others. It would be better to state that this population need support and love because they are at greater risk for self-harm and suicide. 

I think of my five Anns every once in a blue moon. I wonder what has happened to them. I wonder how they have been treated or mistreated; understood or misunderstood. I hope that they have found a supportive place. The fact is that my hopes for them are just hopes. The truth is that I know dealing with schizophrenia is never easy.

This population may not affect you personally. But they are someone’s mother, father, brother, or sister. Would you come to comfort someone you knew who was in need of help? Those who are schizophrenic are in need of so much love and help! They might not be able to return that love and caring, but they need it all the same.

These are people who are alone, living under bridges, because there aren’t funds for treatment. These are men, women, and children who deserve our help. Those with mental illness have no voice. We, who are not burdened with schizophrenia, or any other mental illness, are the voice. Where is your voice?

Now, I should also mention the successful and more well-known schizophrenics: John Nash, Peter Green, Syd Barrett, and others. People who are schizophrenic do work, live peaceful lives, and contribute to society in productive ways that have enriched our lives. I chose these members of society because I know of their work. There are others. Will you raise your voice to help these other people? They are part of the group society judges.

If my words have caused you to think, that is good. If my words on this cyber page are causing you to want to know more, I’ve done my humble job. I’ll leave you with a teaser: What did John Nash do that won him a Nobel Prize? What did John and the King of Sweden talk about when he won the prize?

The Meaning of Enough

How many of us think about what we could do with more money? How many of us understand its true value? Whether we squander, or spend lavishly, everyone gives thought to having more stuff that makes it possible to live.

The fact is that having a sufficient amount of funds for meeting life’s needs can provide each of us with the feeling of being safe and secure. Having a surplus of funds can provide us with more options. The more wise options each of us has, the more choices we can make to free us up to pursue better solutions for the challenges we face in life.

I’ve come to rethink how I feel about the paper we call money. I now think in terms of options rather than wealth. What options do I need to provide a good life? What are the consequences of having any of these particular options? What is the meaning of having enough? It wasn’t always this way. My thoughts and feelings about money have been an ongoing journey.

I’ve learned a lot from living and working. The process of returning to work as a self-employed therapist has caused me to ask myself about money, what I need to provide for my family, and what I would like to do with the money I earn. So, what are my needs, the needs of my family, and the needs of my business?

One of the most important values I have is that of being able to assist others less fortunate than myself. This can only happen when the needs of my family are sufficiently met. It means having enough for not only our family’s needs, but having enough to fulfill a dream, or two. Having enough is about being realistic and feeling good about the things you have. So for me, it means being able to give back.

So, in practical terms, what is enough? Being able to buy what I want at the grocery store. Providing new clothing for my family when they need new things to wear is also important to me. Saving for retirement and taking a vacation to relax, and then returning to work refreshed. After that, it means being able to save and give assistance by offering to buy groceries or replace someone’s worn shoes. It means doing good things for others. It means giving someone who is starting out in business my support. It means that I want to do nice things for my husband without him knowing about them.

Having enough also means that you don’t waste what you have. There is something about meeting your needs and not overconsuming; that is just good for the world we live in. When you live within your means and use only what you need, you have less trash, less stuff to store, and less cleaning to do. I’m not professing to be a minimalist because I’m not such a person. But, since our family has cut back on consumables, our trash isn’t as full and our house is less burdened with excess.

I will confess to wanting more kitchen space so that I can buy some cool kitchen gadgets. We like cool gadgets and we like to cook. So, it also follows that we like to eat good food. It is all about determining what “enough” is, and living that way in a realistic and calm manner.

One of the things I’ve learned from living here in Europe is that Europeans like nice stuff. They have less stuff, but what they own is nice. Most people here don’t go into debt; they pay cash for what they own. Most will have enough to retire on and are satisfied. Being here in the Netherlands has taught me to rethink my thinking. It has been a lesson worth experiencing and learning.

As I think about who I am now, versus who I was when I came to Europe to live, I can see how being here has affected me in a positive manner. It has changed me for the better and it has taught me valuable lessons that I could not have learned by remaining in the US.

Insight is a great gift that each of us can provide to ourselves. Insight comes when you look in the mirror and notice that the face staring back at you has taught you a valuable lesson, and one that you would not trade because you are better off for knowing it. Insight can heal the pain that comes from making lousy decisions. Insight is like a plate of your favorite comfort food. When you have it, you want to enjoy it and you want more of it.

As I move on with life, having enough for our family’s needs is good enough. Evaluating what enough is was a challenge that has brought me inner peace. Understanding what enough is frees me to do what I need to do in my life. Having enough means that you can live your life and not chase a false dream.

No Regrets—Just Lessons Learned

*Note: This is another post from the vault that was written when my husband was still living. Enjoy!  

I found this in a mass mail that a friend sent out. It made me giggle. I giggled and thought, RIGHT. This kid gets it. Do I?

“A little boy was overheard praying: ‘Lord, if you can’t make me a better boy, don’t worry about it. I’m having a real good time like I am.’”

My thought: this kid is comfortable in himself. He is having a good time with life. The good and the bad are all a part of it.

I hope that the fictional boy will keep this attitude in life. I hope he will love himself and others and bring joy to everyone he meets. I hope he’ll pull pranks, tease, and get teased. I hope he’ll love his pet tortoise. As he learns to be kind and compassionate to others, he’ll earn friends. He will grow into a healthy adult who will pass these same traits on to others.

Being able to know that you are fine just the way you are is a gift. It is a gift provided by loving parents who care enough about a child to foster a proper self-image from the beginning. This child is not indulged, but rather encouraged to do his or her best in everything. She is praised for accomplishing things, and supported to get back up and try again when she fails at something. Like our fictional boy, she knows that “I am having a real good time like I am.”

A healthy child learns to earn the privileges he or she deserves. She learns to wait for the toy that she wants, and earns the prize honestly. And along the way, she comes to understand that she is unique, but not “special” within her world. She learns that success is won and failure is a lesson to be learned from.

Recently, a friend sent me one of those captioned pictures. You know, the kind that floats around the Internet. This one had an interesting caption and I took the time to respond to it.

The subject matter of the photo was having regrets. Throughout my life I have made mistakes and felt sorrow over decisions that could have carried me down a different path. I am “me” because I’ve made the choices I’ve made. I’ve learned the good and the bad lessons from those choices. I own my choices. Ownership of the outcome means that I try to live by not asking “WHAT IF?” or thinking “IF ONLY.” Once it’s done, you can’t take it back.

My first lesson from life in these matters came when I was 18 and headed off to school in another state. My mother and I were present when my younger sister died of a heart attack. There was a part of me that wanted to cancel my life and stay home. That wasn’t to be, and I moved on to the next phase of my life: learning on a larger scale.

Because of the choice I made to move forward, I made friends that I would have never made. I grew up and discovered that my heart could get broken, heal, and, yes—I could even fall in love again. I learned not only to love, but to give, in new ways. Had I stayed home and attended school locally, the lessons would have been different. Leaving home caused me to want different things from life. That is what should happen because growth requires change.

As I write this from the vantage point of age, and hopefully, more wisdom, I am thankful for the roads I have walked. Sometimes I speculate about the roads that weren’t traveled. And I think back to that fictional little boy—you know, the one that is just fine the way he is—and I think that I’m fine having walked down the paths I’ve taken. I’m glad I’ve learned, hurt, healed, and grown. No real regrets—just lots of lessons to learn from.

Radical Compassion

In 1958 there was a pandemic, and my mother happened to be pregnant with me. It was only a slight case; she didn’t even know she’d had rubella until after the fact. It was during an era when medical abortions were done if the parents and the doctors were willing to do so. My mother told me that they didn’t ask, so the docs didn’t offer. Nature took over and produced a child who had been conceived to be healthy, but who became injured while still in the womb. That is what nature does.

In talking with my mother about this issue, she once told me that she could understand both sides of the argument and why a woman would choose one or the other. From her I learned that the issue around the health of an unborn child, or the termination of that pregnancy, is not an easy, cut-and-dried process. The choice to raise a disabled child came with a great deal of pain and learning, as well as tears and sorrows on all sides. Society blames and doesn’t help. My mother learned radical acceptance and radical compassion. I watched, I listened, and I learned from her.

In the past month, I have sat and watched as so many have blamed gun owners, children, the shooter, the NRA lobby, and Congress for the travesty of yet more dead kids. I hurt for the families and friends who have lost children. I am angry that people are using an act of violence to force a political solution, as well as a mental health solution, to this situation. There is enough greed and corruption to go around! There is more than enough blame that is being spread to the innocent. I want to scream “NO! STOP IT!”

I do support change. I’d like to see assault rifles, code red drills, bullying, blaming, and greed to be taken off the streets. I’d like to see respect and support become common. I’d like to see corporations become responsible for what they are putting on the streets. I‘d like to see violence in video games and films done away with. I’d like to see everyone have access to good mental health care and not just a set number of visits per year. I’d like to see education and understanding for all.

I’d like to see scientists search for effective medication that could reach into the abyss of a shooter’s mind and allow that person to be healed with both medication and talk therapy. It is dark in that mind. It is lonely in that mind. To be able to befriend such a person would be rare. Why? Because what such a person thinks is so black, so far from the norm, so chaotic that most professionals can’t—or won’t—even go there. I’ll venture to speculate that the person owning the thoughts is just as terrified of going there. What I’m talking about is a radical compassion for others.

Few have been able to show such compassion because few are the Buddha, Mother Teresa, Jesus Christ, or others. To be part of that universalizing place takes a lifetime of journeying. However, each of us is capable of listening with love and compassion. You do it as a child when you show sorrow for your friend’s pet that passed on. You do it when you spend time listening to a friend sharing grief. You do it in a darkened theater when you let out the buried pain that you can’t show for yourself or someone else, but can show for the character in a film. You do it when your best friend tells you that they are coming out, and your love for them takes you to new places of joy and acceptance for who they are. You do it when you ask “Why?” and come away with only more questions, but a determination to find one solution and you join a cause. In joining, you move to radical compassion, when you sit down in a room and listen to the others who believe differently than you do. You do it when you realize that “they” care just as much as you do. You do it when you take a hand and find a way to work together for peaceful solutions.

I saw it in my mother as she was faced with how society treated her two disabled daughters. I saw it in her heart when she wept and yet didn’t lash out at others for the treatment that came to her children because other parents didn’t teach the same values of love and acceptance.

I want to see more kids step up and take responsibility for the things they can do. I want to see those of us who are older applaud the courage that we are witnessing and show love and compassion for the process they are initiating. I’d like to see each of us stop and think about the words we speak and the actions we take in our daily lives, and how they might affect others. I want to be on the path of radical compassion with my fellow human beings. Right now it feels sparsely traveled. I think back to my mother, and if I can do what she was able to do, I’ll be doing well. Join me on the journey. It isn’t an easy journey, but my mom thought it was worth doing, and so do I.

Sneakiness Is Happiness

Today has been very hot. I like the heat because it means that the sun is out and the sky is blue. The only bad thing about the heat is that sticky, humid feeling. Today I had to be out in the heat and it was wonderful!!!!

Why? Well, it was because of all the nice things that happened while I was out and about and doing the many things that I had to get done. I was out alone with Myrtle Mae. Myrtle Mae is a good sidekick. “She” keeps me safe from others. I’ve also noticed that people are really nice to me when I’m buzzing around with my stick. (Myrtle Mae is featured in stick magic.)

There are so many things that are different about being a person with low vision. Some things are just more complicated and time consuming than they are for a fully sighted soul. People being nice to me made me feel OK about walking around in the heat. So to balance my happiness, I find myself listening to one of the most pessimistic guys of rock: Don Henley. I like Don.

There were things to do, like the veggie run and the bank. I like getting this stuff done—but there was also laundry to do before I could do the veggie run.

I tell you all of this because the man did something wonderful for me. He can be sneaky in phases because my sight just isn’t good enough to see what is going on in my tiny room that I use as an office. I didn’t see the first phase at all.

My office is filled with very “Gail”-type things, two of which are parasols that are mounted into the corners of the ceiling. Once they were up I thought, Wouldn’t it be cool to backlight them? I haven’t thought about it for some time. He has.

While I was out and about, he got to work and gave me a very beautiful surprise to come home to. Yup, he backlit my parasols!!! So, even though it is hot out there and in here, I’ve got the tiny lights on. I couldn’t resist as it is so pretty to have the soft light around me.

Being nice pays off not because it has to—it just does. There is something about generosity that is contagious. So, when I’m out and about, I smile, and others say hello to me. Why?

I think that is because we, as humans, crave positivity in ways that will never be fully understood. I, for one, have no desire to study this, as it takes some of the magic out of the process. I will studiously avoid the research on the topic. Some things are better enjoyed and left alone.

I think I’ll go find someplace cool to enjoy the evening. I also must switch to something other than Don Henley. Before I do—remember to smile and see what you get in return.

Thanks, but Not This Gift

Late Wednesday I asked Jon: “If you could give me a gift, any gift, what would it be?” I wasn’t ready for the reply.

He told me he’d give me a healthy body. He told me he would want to take away all my discomfort and give me health, and I was stunned silent. Two days later and I’m still stunned.

I’ve had this petite, not-quite-a-gem of a body for 56 years now, and while I don’t appreciate its lack of functionality at times, I still love being petite. It is who I am. I love my blue eyes and my once-curly hair. I don’t like the PXE (Pseudoxanthoma Elasticum) that has made life hard. No, I don’t like that at all.

I’ve made the comment before that if I could see normally, I’d want to play tennis. That would be first on my list of items to do. That is just a thought and a desire, but when I think of things in terms of my entire life changing, I have cause to rethink. Doesn’t everyone want health?

About two weeks ago, my family found out my younger brother might be facing some serious heart surgery. He, like me this past year, had to come to terms with his own mortality. It changes you and causes you to rethink who you are and what you do with your life. Things that didn’t seem needful take on a new view. In this past year, the things that really matter to me have changed.

As much as I would like health, I’m going to decline the gift. It isn’t that I’m not moved by the thought; it is that it would change some things. It makes me think of one of the most powerful “Generation” episodes of Star Trek, and the lesson that it teaches.

In the episode, Jean-Luc has yet another encounter with Q. He comes to understand that the lives we live are due to the choices we make. We walk the paths we walk because of what we either do, or fail to do. I may not like the hassles that my lack of a healthy, functioning body brings to my life, but without it I lack the knowledge and power that its lessons have taught me.

Instead of pontificating on all the lessons I’ve learned (and I could do just that ), I’d like to ask you each some questions: Would you change your life? Would you alter it so radically that the lessons you have learned now would change? Who would you be if you weren’t this current “you?” How does thinking about this alternative “you” change who you are going forward? Why would you make the changes? What would your reasoning be?

The offer of Jon’s gift has made me look at myself and accept that I’m OK with the mess of my disability. I’m more accepting of it than I thought I was. I like me. I may not always be happy with life, but I like my life lessons and am glad I’ve had them to shape who I am.

I will return to the gift of health. It is a good thing to ponder and revisit because it has made me think about my life in new and better ways.

In asking myself the question, I found another gift. This gift is that I like being Gail. I like some things about being who I am with my own disabilities that I didn’t think I was happy with. Thanks, Jon.

Faces in the Light

This post is a project to see if I can describe what it is I see (and can’t see) clearly. Would you please let me know with a comment if I was successful?

Thank you,

Gail

P.S: Please scroll down to see a diagram of the eye.


When you look at a face, you most likely see the entire face. The details are clear: eye and hair color, nose, and ears all stand out as a part of the person. You can tell who they are by how they appear to you. You magically memorize things about this person’s face so that the next time you see them you may recognize them. That tiny computer in your head does the job it is meant to do. You bring up their name, and with it many other things regarding this person. You can say that you know this person. But, what if it doesn’t work in this manner? What if your brain, or more specifically, your eyes, can’t process this information normally?

What if when you see someone, you can’t recall or even memorize the face? What if your software is not in working order? What do you do then? You are in the dark with this face, even though there is plenty of light around the person.

When we are babies we begin developing facial recognition. Our brains slowly discard the skills we will not need. For instance, humans need to see human faces vs. monkey faces. As a baby you are capable of viewing and distinguishing all faces, and you learn that because you don’t see monkeys every day, the brain can now discard higher levels of monkey software because it won’t be using it much. Knowing what monkeys look like is good enough. The brain has learned that it does need to focus on humans, so that is where the brain will focus development.

Now, the brain needs to understand many things about human faces, so the brain develops these skills. By the time the person is a bouncy one-year-old, the brain has a doctorate in facial recognition. BUT, what if in the process of developing the brain there is damage and critical steps are not completed properly? This is what happens when there is a lack of visual development.

What Doesn’t Work?

From this blog you know that I was born with cataracts (I had no light perception due to the clouded lenses), and that on my first birthday I was operated on and given sight in my right eye. Six weeks later the left eye was also operated on. The surgeon did a beautiful job!!!! So, I was then a happy, sighted one-year-old who was simply a bit behind developmentally.

After the surgery I was given glasses. At age 14, I began to wear contact lenses. At the present, I wear only one lens due to the fact that my right eye is not able to be helped by the lens. (The cornea is no longer the proper shape.) While they could do some surgery, it is a risk I am not willing to take. Surgery would put me at risk for bleeds in my retina, which could lead to blindness in that eye. So, back to childhood…

Because there was no vision during the first year of my life, several critical phases of development could not complete properly. Muscles in my eyes failed to learn to strengthen themselves, and nystagmus (rapid eye movement) came about. I also did not develop full facial recognition during this time. In later years the PXE (Pseudoxanthoma Elasticum) decided to contribute a bleed in the retina and reduce what vision I had. This is why I have only 12% of my vision left. The percentage is a far better description of what I really see. It isn’t about distance but rather about what I can really see in a comprehensive manner. So if you have 100% of your vision and can see something easily, chances are that I’ll have to blow it up and make it BIG, or stand closer to the object in order to see it.

What Works? How Do I See Things and How Do I Function Best?

When a visually impaired person enters a room, they don’t really survey the room as you do. They look for seating. They do this because this is of great urgency for them. This doesn’t mean that they will get the best seat; they get a seat. After they have a seat, they will then proceed to check the room out. There is a problem with this process and that is that it might not yield the best seat for their needs. The best seat for me is a seat facing away from the window. With my back to the window there is no glare for me to deal with. This means that I can see lit faces instead of dark faces. The best room is also well-lit with both ceiling lighting and lights that shine upwards. The room should have no shadows. The number I use is a combined total of 1500 lux. The equation works out to 1250 from the ceiling and 250 upwards. Warm light is better than cool lighting. Those are the basics.

Seeing your face is important to me. I wish I could recognize you easily, but for me the process is just that: a process. For me to recognize you, I need to spend time with you; I’d say two or three hours will do. I need to have those hours over a period of time. Doing it all at once doesn’t get my brain to learn about you. As I study your face, I acquaint myself with who you are physically. After several hours, I am better able to recognize you.

If you cut your hair, change your hair color, gain or lose weight, I may not know you at first. You will need to remind me who you are. Think of it as having to do a software update. The question of who is using the voice arises, and the answer to this is that I can only depend on the voice as much as I hear. So, I use a combination of things. Because I see better than I can hear (reliably), I use my vision to learn and understand, and my hearing becomes the secondary sense involved.

I’ve shared a great deal of information with you. I suspect that many of you out there will be wondering, What do I do with this? What am I supposed to do when I’m around you? I’ll answer that with this: A simple kindness goes a long way towards true understanding. You can make sure that I recognize you. That is a great beginning.


Dear Parental Units

Dear Parental Units,

It seems that I’m the recipient of an opening in the space-time continuum, and being as I’m a very brainy baby, I’m going to take advantage of it. I don’t know how long I’ll have to say all of this, so here goes something!

I just popped out and I know you are so glad that the pregnancy is over, that you are through labor and delivery, and that I have ten fingers and ten toes. My head looks normal and I’m breathing and crying. All is well (for now). Enjoy the next six weeks because after that, you all are going to enter a world that you don’t know you are unprepared for. Good luck—we’re all going to need it.

Six weeks from now, Mom, you are going to decide to take me to the pediatrician because my eyes don’t look right. I’m not tracking stuff, and you and Daddy are concerned. On that day, you are going to get a bucket of news you are not ready for. I’d have liked for both of you to go instead of just Mom. You see, if you both hear the news together it will be better that way. So many times mommies have to hear difficult news without daddies being present, and that isn’t right. I can tell you that getting your kid diagnosed with disabilities is bad enough, but often it is the mother who hears it first, on her own. Even though the woman (yes, in 1959 you won the doctor jackpot and got a woman) is going to spend time with you, remind you that this is not your doing, that you had a very mild case of rubella and nature happens, and she’s going to try to help you deal with it all in one day, I’ll tell you now that her good intentions won’t do the trick. Don’t feel bad. Doctors still don’t get it, and in time I’ll come to have friends who are doctors and they’ll validate this fact. Talk about it and help others to go through what you have been through. Sharing will be good for you and others.

So, take me home and get that home nurse and learn and enjoy having me. Let me explore, and let me be the happy soul I am. Let me grow up in the loving secure environment you both want to provide for me.

I Can Feel That I’m Getting Older.

Now, growing up is tricky. You are going to want to shelter me from bullies, failure, and all things that go bump in the night. Unfortunately, you can’t. You are going to want to hide when I come home from school crying because of the bullies. I need you to put your arms around me and let me know that you love me, and when I shed tears, cry with me so that I know it is OK and that you hurt with me. That would be the best!!! But the era you are raising me in will teach you differently, and you will hide the pain you feel. I’ll grow up and gain insight into this, and it will be alright.

While I’m on the subject of things that hurt: Don’t trust caregivers. I know that in the 1960s you won’t think that your daughter can be harmed by any form of abuse. The disabled are hurt by angry people and sometimes well-intentioned do-gooders who should not be allowed to work anywhere near them. I’ll be hurt, but I’ll get through this as well. All three of us are victims of having had this happen to me. You didn’t know, so don’t feel guilty over not knowing. When you do find out it will be because the time is right and I will heal from past pains.

I need to tell you that you began to do some good things for me in the late ’60s and early ’70s. You need to pursue those things even more and give me the jump-start on my career planning, and help me to see that I can reach my dreams. Just because I’m disabled doesn’t mean I can’t achieve what I want. I know my limits and I don’t need society putting false limits on me.

I’m Feeling Even Older as I Write This.

Dad, you and I are going to turn out to have passions in the same areas. Social injustice is something we will both come to understand. I’m glad that you will work with, and respect, women. I’m glad that you will be open to that.

Mom, you are going to wind up raising two daughters who have health issues. It is going to change our family. I’m glad you will have Joyce because she’ll be things I’m not. She’ll be easier to raise—trust me on this one. We will both cause you and Dad to grow beyond what you ever thought you’d have to do, but in the end it will be worth it.

As I grow up, I’m going to want to do it all by myself. I’m going to want to be just like the other kids. This is going to be hard on you, Mom, especially because you and Dad decided you’d stay at home with the kids while we were growing up. He won’t be home as much as you might like for him to be, but I know that you will tell him everything and he’ll be in the loop. But, back to the being like the other kids. This is something that many disabled kids feel, so try to understand and let me do it myself unless I ask for help. Let me struggle some and then gently offer, even if I make a stink. I’ll understand when I’m older and all grown up.

You should put me into Girl Scouts. Give me outlets that will help me to make friends and to achieve goals. This would also help society learn that the disabled CAN participate. This is very important for girls!!!! This is something you won’t think of doing, but I wish you would. I can tell you this because it is something you would think of if I had been born at a later time.

Help me discover who I am as a young girl so that I can grow to be a strong woman. Putting me in dance and swimming lessons is going to help me to become more coordinated. It is also going to fill my intense need for being in and near the water. I’ll learn from these, and even though the dance will be hard, it will plant some seeds.

I’m going to have insight into what I need. Listen to me because others won’t, and as you support me you can know that I appreciate the fact that you value who I am. I’m going to raise a wee bit of hell along the way and you two won’t understand it, but you will accept it and love me.

When I reach my teen years I’m going to struggle with who I am becoming as a woman. Part of this is normal for all teenagers, but there are special issues that are associated with disability. How I wish someone would author a book about this stuff so you both could read it! Unfortunately, there won’t be a book. Maybe in time I’ll write that book, or maybe someone will beat me to it.

Early on in life you are going to turn me on to books and I’ll devour them. I thank you now for this gift. Reading and learning will be one of my great joys. It will allow me to stand equal with anyone.

Oh, Something Is Happening

Mom and Dad, I’m going to thank you, now, for all the time you will give to me. Driving me when I can’t drive, reading to me when my eyes just can’t see straight, and staying with me when I freak out because the depth of things is hard for me to see. The times when you have held my hand and helped me navigate going down to rivers, and other hard-to-get-to places, will be appreciated. I’m going to thank you for trying to keep the family in “normal” mode and doing things that my siblings enjoy. They will need that.

Night Walk and Maira

I guess you could call today “Maira Eve,” and as I have been thinking about my life and events that have led to this very day, I thought I’d update the original posting. This post tells of how I came to understand that I needed to have a dog.

For the past four years I have referred to Maira as “Eyelette,” as all things living need a name. I’ve even had a tiny transitional object to pull out of a drawer or set upon a desktop when things seemed grim. Right now it just seems surreal. This REALLY is happening!!

It has been a long journey, and tomorrow at 0930 I will be at KNGF to begin my two-week intensive work of becoming a partner with Maira. What is in store for me? I don’t fully understand at this moment. I am packing my bag and will find out in the morning. So now for those who will walk with me and remember that night of several years past…

Night Walking

Late this last November, I found myself waiting for my husband; we were to meet at the shopping area. My iPhone went dead and I was scared. It was dark and windy, and I knew I’d have trouble walking anywhere alone. I almost left the stairs, where I was sitting in hopes that he’d look for me there, to go look for our car. I should have known that the car was there—where it always was. But fear kept me on the stairs. Had I left, I’d have found the car—and safety. I was to discover that I had been doing a dangerous dance on a rooftop with a skylight.

I finally decided to walk to get to the bus. I was scared. The thing about being half blind (or so I thought) is that bumps in the sidewalk aren’t your friends. Bumps can really hurt you. So I walked in the street, but then the streets here in Europe can be bumpy as well. The streets everywhere are bumpy. It just doesn’t pay to try to stay safe or sane when you can’t see the road. I was walking SCARED. In my mind I was dancing on a skylight and trying to calm myself and telling myself that I would be just fine. I was scared because about ten years ago some nut with night blindness hit me and I fractured my L1. I was scared for some good reasons. In feeling the fear, I realized that my vision was far worse than I had ever admitted to myself.

Normally, husband is my “Seeing Eye Hubby,” and I depend on him. But hubby was in some unknown place and I was scared. I was all alone, and there was no one to help guide me. I made it to the bus, which was a good ten minutes’ walk. Then I had to face the walk home, which in many ways was even more terrifying. You know you are severely low vision when you have a dark street with a dim light and you think that you know the road but don’t know where the bumps are. All at once I realized that I didn’t know the road at all. I had to make a decision: walk fast or walk slow? I just walked. All I wanted was a phone and a warm house. More than that, though: I didn’t want to fall on my face.

After what seemed like a horrible forever, I could see the house and then the car and the door. I crashed through the metaphorical skylight. The tears and mixed emotions exploded within a safe house. I was grateful that I had made it home. Jon, who was upset and concerned, came to me. At that moment I realized that I would never feel as safe as I once had before. That crash was just the first.

Life can be a terrifying dance routine with a choreographer gone mad. That is when you slam through the skylight. This is when your soul sinks and you discover that you are frail. Then, and only then, can you realize that you have been dancing on a rooftop with a skylight.

In the next days I began the search for the “doggie” school. After a week of looking, I knew that I needed to approach KNGF. I made the call. The darkness has served as a reminder that I am not safe. The naive woman who was dancing on a skylight is no more.

Today

Jon is downstairs cooking dinner and I am wondering what will unfold next. As I look back over the past few years, it has been quite a ride. The Loo Erf, the beginnings of a new private practice. It will be a new dawn in the morning. I can’t wait!!!!

A Sad Update

I am going to post this to my blog because it will reach more people faster.

On Monday, 23 June, I went off to the KNGF with high hopes. Maira is a great dog, but she will not be mine. On Thursday the 26th, I was admitted to the UMC-Utrecht neurology unit. The short story is that after all of the time I spent planning, I can’t have a dog.

I am totally bummed and depressed and feel like a piece of my world got yanked out of my life. It did. But, I will move on. For now, it is important that I accept and take the time to cry tears of sadness.

I am thankful for some great doctors. I am thankful that I am alive, and that with care, I can stay that way. I will say more later. For now I am just trying to enjoy my first complete day home from “the big house,” as Jon and I call it.

With much thanks for support,

Gail

Through it

*Note: The four posts in this category are posted from the firstpublished to the most recent.

The last entry I made on this blog was one of hope and gladness as I had come back from an illness that left some side effects. I was looking forward to returning to work. But that didn’t happen and the blog went silent. Why?

In August of 2016 the man that I’ve been posting about in “Being in the Room” (Part 1 and Part 2) decided to leave the room. He completed suicide. I’ve taken a year off to sort out my feelings and begin the healing process.

My husband Jon and I had many long talks about his situation. We both cried and we both knew that this could happen; it finally did happen.

I will be doing a podcast on this subject, so I won’t go into all of the details here. I may talk about the specifics in future postings. However, today I want to talk about getting through it. I don’t mean getting over it, I mean THROUGH it.

Let yourself imagine a mountain. You have some options, and they each have an outcome that can be managed. Some are better than others, and so, in making the choice of how to approach this landmark, a considerable amount of thought is needed.

In the first hours and days of Jon ending his life, I had to make some radical choices. I think I made some really good ones considering the fact that I was grieving, stunned, and without family physically present. However, I did have some friends who came and gave much-needed support. They cooked, cleaned, advised, and tried their best to show up in a nasty situation.

In the first days and weeks, that mountain loomed large, and I knew that I had to decide how to navigate it. I could go over it, around it, or through it.

Each of these thoughts caused me to think of what would happen if I had made the journey in that manner. I’ve never liked the term “get over it,” as it seemed condescending, judgmental, and uninformed. I discarded OVER right from the start. In thinking about it further, I didn’t want to track OVER the mountain. I didn’t want to miss things that I would miss by going over it. It didn’t seem like the thorough way of facing this situation. While hiking a mountain can be beautiful, this wouldn’t be that type of journey.

Going AROUND the mountain implied denial, and that wasn’t an option. I thought about how this seemed to imply that I’d view the scenery, but not touch anything, and that wasn’t appealing to me. Going around the mountain would leave the mountain intact, or untouched, and that wasn’t what I wanted to do at all. As I mentioned, suicide is messy and requires some hard work to deal with the damage and ruin that it leaves in its wake. While I knew suicide could happen, I had hoped it never would come into being.

I thought about tunnels. I like the technology that creates them and the stories of their builders. I like everything about driving through them, if they are well-lit. I watched with great interest as the Gotthard Tunnel in Switzerland was dug from inside the depths of the earth. My first visit to London was not taken on a plane, but through the Chunnel. Yup, I like tunnels and no, I haven’t gone through the Gotthard Tunnel yet.

So, in thinking about what I needed to do, the choice for me to tunnel THROUGH this mountain, and thinking of my journey in those terms, was a natural one.

As I chose to go through the mountain, I chose to be intelligent, wise, weak, vulnerable, and fearless. I realized that I could not control this situation. I could no more control it than control the crazy weather of the Netherlands. I do, however, have options even in tunneling through the mountain.

The First Option: Realism

For me, this has involved planning and visualizing, as well as allowing myself to feel the messiness of the entire situation. It also means that if I’m having a bad day, I allow myself to feel the bad day in all of its glory and pain.

When I say that I’ve planned this journey, it means that I allow myself to think through life scenarios and to imagine the outcomes. For example, the celebration of Christmas could have been really hard. But, thanks to friends, I was not alone, but rather surrounded in a house of love. Rather than letting the day simply come, I opted to take hold of the day. It wasn’t easy; it was better than waking up to not knowing what would be involved with living through the day. But, trying to maintain a certain amount of control is a good thing.

In visualizing and thinking ahead to the obstacles that come my way, I create positive scenarios. I remember the first “everything” that I’ve celebrated without Jon as being mostly happy. Yes, of course I wish he were here at times, but the reality of it is that he isn’t suffering, and for that I’m so thankful.

I’ve cried, or should I say, sobbed. I’ve questioned and wondered if I did a good enough job of supporting him. And after the crying is over the answer is a resounding yes!

I would not wish this on anyone. Going through hell is not fun, and in the past year I have faced hell more than once. The thing I’ve learned about this particular hell (and there are many such places) is that there is respect required in that place of darkness.

The Second Option: Receiving and Acceptance

My great-aunt was wonderful at giving to others, but she wasn’t very good at graciously receiving another person’s kindness. From a young age I became aware that not only did I need to be a great “giver,” but I also needed to learn to accept kindness with graciousness. This week, I had this lesson driven home to me when a friend came by to see how I was, as I’d failed to respond to her emails. During our conversation she said, “Oh, crap,” in hopes that I wouldn’t hear it. (I’m not that deaf!) Then, when I reacted to that remark, it clicked, and she, in an imaginary shaking of Gail, said, “I want to help!” She was hurt and angry, with good reason. I realized that I wasn’t receiving the service she was offering. I had been sick for two weeks with some kind of illness that had been going around, and I’d become hard to reach. We talked about it, and I admitted that having her come by was a good thing. It raised my spirit. It also forced me to realize that I need to assert my needs and let others determine whether or not it is possible to help out. Asserting one’s needs also means allowing others to think about what they are able to do for you.

I realize in talking about being a recipient of kindness that this isn’t always the case. People get confused and they don’t know what to say or do. They overreact or underreact. Sometimes, the best they can do for you is to do what they think they’d want done in your situation. They are only human. This isn’t easy to deal with, and I will admit that one of the lessons I’m still learning as I travel through the mountain is that I need to accept not only the kindness, but also the fact that the kindness might not always be there when you need it. It hurts deeply, but when I last checked, there were, and are, no perfect human beings on this planet! We are all doing our best, or so we like to think. However, sometimes our best isn’t good enough. When you are the recipient, accepting what is offered is an art that most of us need to learn to be better at. So, there are failures in this process: the hard thing is letting the failures stand on their own merit.

The Third Option: Patience

It is going to take time. It isn’t going to happen speedily.

Nobody wants to remain in grief and pain forever, and yet in order to get through the grief, it is essential to remain there until you can move forward. Forward movement is done in steps. If you try to force this forward movement, it actually sets you back. Facing the good days along with the bad, or not-so-bad but not-so-great days, is moving forward. This is not a science but rather a journey. Crossing the milestones, understanding that there will be many such milestones, and allowing them to come naturally is part of the process.

Being kind and gentle with yourself is also needed. Show yourself mercy. Come to understand that you are enough and that simply getting through the death of a loved one is enough. This has been my process. It would be accurate to say that this has been a roller-coaster ride and that I’ve been flipped, raised up, sent flying down, and jerked around. I’ve taken a couple of “Gs” and I suspect that I’ll be hit again. Smoother riding will come. (Is life ever completely smooth?) So, be merciful to your soul and it will pay off.

There is so much to be said about dealing with someone’s suicide. I have time to say it in multiple posts. But, the last thing I will say is that I’m at peace with my Jon and his death. I spent 22 years of my life loving and supporting Jon. I got to know his pain and the fact that each day he struggled to find shelter from the depression and pain that he lived with for 30+ years. There are times when loving someone means that you come to a realization that loving them entails letting go completely. Jon walked a pathway of life for years that held struggle and sorrow. Jon did not end his life impulsively, but rather with thought and an understanding that he had done all he could to heal. In his notes, he grieved that this would cause me pain. But, he also expressed his love for me. I respect that and honor his death. And in that, I have peace.

The Boring Machine

*WARNING: This gets detailed and somewhat graphic for the imagination. Please read the post “Through it” before reading this post. 

Deep into the earth I go. Deep into the darkness where hell lives. I go in deep because where I am now requires me to be there. In order to go through it, I must first face it and expel the debris. I’ve had to think about not only where his head was at the time of his completed suicide; I’ve had to think about what I was thinking before I knew he’d done, as I call it, “the deed.”  

We had a deal. At least I thought we had a deal, and for my part, it seemed like the right thing to do. (Had he kept the first part of the deal I’d now be in jail!) The deal was that he’d come and talk to me and tell me that he was going to attempt and complete suicide. The second half of the deal was that I would not be the one to find him dead. The deal wasn’t realistic.  

Had Jon told me about his plan, I would have been legally obligated to stop him. I would have needed to get him to the hospital. On August 28th, that is where my head was. I was going to have him forcibly, if needed, hospitalized. The numbers indicate that those who go into the hospital come out with more energy and, actually, in a place where they are more likely to carry out a plan. In Jon’s mind, going to the hospital wasn’t an option. Going there by force was, most assuredly, less of an option. He spent all day Saturday and Sunday morning making the final decision to leave. From his notes, it wasn’t an easy choice. In the end it wasn’t a long letter that he left on the dining room table, but rather a short note that said he loved me. The letters were his thoughts on the “Why now?” I had to read between the lines to understand it, as even in dying, he couldn’t show it all. He had, over the years, shared everything; thus, I was able to understand what he couldn’t even write. The note was two short sentences. In small print, so as not to detract from the content of the note, he told me where to find his body.   

He kept the second half of our agreement. I did not open the door to the shed where he was. The police broke the glass to open the door, which had been locked from the inside. This kept me from using a key to open the door myself. (Yes, on realizing where he was, I grabbed the key that hung by the door and went out to attempt to open the shed.) 

When the police came shortly after I had called them, I went out with them. They sternly, once the door was open, told me to go inside the house. I’m told it was messy; I didn’t look and I’m glad that I didn’t look. The shed had to be sanitized and most everything in there was lost.  

The police were required to check for criminal activity but there was none. They came into the house and there I sat on the sofa, stunned, and wondering how he could have done this. As I mentioned before, this was a shock, trauma, and a bunch of other stuff all rolled into an afternoon that I had never wanted to have to live through. The police were respectful, kind, and that is all I felt while dealing with them. I was actually able, and I don’t know how, to ask what he’d done. Jon had told me years earlier that he’d decided on a method that would be decisive, swift, and not too painful. The officer told me that at the most, he had one second of pain and three seconds till death would have come. He did not use a gun.  

To give you some idea of where my head was during all of this, I asked a really stupid question: “Did he hang himself?” OK, I knew that there was no way to hang himself in that shed, and we didn’t have the type of rope that would have held for hanging. My head was pretty discombobulated by that time. His body was whole, and for that I’m thankful.  

I share all of this because I had to begin from this point and go forward. I’m grateful that I had been spared the trauma of finding him. I was lucky that way. 

What is the Boring Machine now sending out on the conveyor belt to be dumped into the earth? Pain, deep pain, loss, sadness, questions of whether I did my best and enough. Could I have done things better? And, in typing these words, the tears return. The answer is YES! But it was, and is, enough. Maybe that is what haunts so many people in this situation. This might be the hardest of all the questions to resolve. I was lucky because Jon and I had spoken about our relationship and he recognized, and told me, that I’d done enough. Yet doubts still come because that is the nature of this beast. 

Why didn’t I see it coming? Sometimes you just don’t see it because the person is extremely skilled at hiding it from you. Sometimes the words are too scary for the person to utter. In so many ways, what a person who is seriously planning suicide is going to have to speak is the truth that says “I’m going to take my life. I’m going to go to a place that is so unthinkable, that speaking the words is a hard act to contemplate. I’m taking so much control that when I complete this act, I can’t reverse it.”

Personally, I don’t think that you can remain sane and complete the act of suicide. I say that because I do know what it required for Jon to go to the place where he could complete suicide. It wasn’t a calm place. He had once told me that if he could ever bring himself to complete the act, he’d have to take himself to a place of hate for me. That is what he did. For less than four minutes, he took himself to a place of hate that enabled him to separate from all that was good, kind, dear, and loving to him. Having committed such an act towards me, he could no longer live, because it went against his value system. If you are reading this and saying to yourself that this is crazy-making, you are correct; it was, and it is. BUT, for him, it worked. In those four minutes, he managed to alienate me in a way that I couldn’t imagine. It worked; I wanted nothing to do with him.  

This does not mean that everyone who completes suicide takes themselves to a place of hate for those who they love. I don’t think most souls who complete or attempt suicide would think in this manner. There is some evidence that points to those who attempt and complete suicide having tears in their eyes. That tells me that they don’t go where Jon went.  

Suicide leaves a legacy of damage. Your spouse, partner, parents, siblings, children, extended family, and friends are left to sort out the mess and damage.  

I am left holding a life that is shattered by an act that, when you pause to think about, causes an existential crisis for everyone involved. How could he go to that ultimate place and contemplate such an act? How do I deal with all the crap that gets pushed out by coping with this issue? Maybe the hardest of all is this: What can a friend or family member say to make it better?  

Let me start off with the “what to say” response. Firstly, this is the unthinkable act. The reality is that people do consider the existential ultimate power. People who hurt badly enough, perceive the solution of suicide as a fix-it for a life with too much pain of whatever type it is they are dealing with; these souls do go to the ultimate place. They do consider suicide, and for some, they act.  

So what do you say to someone who is faced with processing their loved-one’s completed suicide?  

In writing this, I wrote a list of the do’s and don’ts. The problem is, the list is of MY do and don’t items. So I’ll keep it simple. Do show empathy. That means do what THEY need, not what you think you’d want. 

Be honest and tell them that you don’t understand, but that you will listen and try to learn and be in the moment with them.  

If you offer support, make certain that it is support you can follow through with. 

My one huge DON’T is this: Don’t abandon them because you don’t know what to say. Say you love them, say you care, SAY SOMETHING! 

Secondly, I’ve been through one traumatic death before, and having survived that, I can tell you that this is different—which leads me to explain what I call “the death bubble.”  

All death sends you into some kind of bubble. I don’t mean this in a negative way, but rather the bubble has to exist in order to give you time to process the event. For some there is time to say goodbye, and for others the death is sudden and unexpected. Still, others must process some form of trauma along with death. Then there is completed suicide, which is very different to process.

Each of these deaths causes us to go to a place of time standing still, or ‘the bubble.” While the rest of the universe continues on with life, we are stopped midtrack in whatever place it is we are. We do what must be done to either bury or cremate, we plan a funeral, memorial service, or wake. Most importantly, we gather as family, friends, and colleagues, and we grieve, celebrate, eat, drink, laugh, and cry. After the service and immediate mourning period, we exit the bubble to play catch-up, and realize that life moves on. We might be in slow motion for a while, but we do move forward. 

We go home to an empty home, someone missing at the table, someone we can no longer speak to, or in some cases we go home relieved that person is no longer there. But still we leave the bubble. 

With the death of an older relative or parent, you know it’s coming. With younger deaths we may or may not know that they will die, but we may have time to prepare for it, making it somewhat easier. Traumatic deaths are an entirely different thing altogether.  

Heaped on top of the normal grief and pain, you have trauma, loss, anger, rage, questioning, disbelief, and guilt, and this can go on for months. I must also say that I haven’t exhausted the list of what someone who deals with traumatic death deals with. The bubble either explodes, implodes, or it remains forever.  

There is no right or wrong way to experience and process death. People grieve differently. People think differently, and their learned experience combines with all of this to create an individual experience. 

Having said all of that, it takes time to get over the death of anyone.  

My greatest plea in all of this is to have others recognize that grief takes time. Show compassion, and please do not shame someone for their process. They will get through it when they get through it. Their time, their rules, are what matter here. 

There are some helpful “do’s” that you can engage in IF you are committed to supporting someone who is grieving the death of a loved one.

There are times when you may need to offer feedback. Take your time and be gentle. By this I mean create a conversation and ask questions and listen to the responses. Don’t offer feedback until you have learned more from someone. It might be great feedback, but if you listen, you may learn something that makes it altogether wrong for that particular time and individual. 

For instance, I realized about six months into my journey within the deep earth that I might benefit from working with a psychologist who specializes in grief. What I was going through was hell, and you should avoid going through that place alone. Friends have been supportive, but sometimes you need to talk it out with an objective third party. I was clued into myself and what was happening well enough to grasp what I needed. It took me another month or two to follow through on it, but it was on my radar and I eventually acted. In some cases, someone might not know what they need. Had someone told me that I needed to talk with someone, I may, or may not, have been receptive to the idea. I could have said “I’m fine on my own,” and pushed the person away. Timing and understanding are everything. 

So, deep inside the mountain I go. Deep into a place that I wish I could have avoided. Deep, and in some cases, very alone, because I’m the only one who can do this work. When the tears come, I let them, knowing that tears lift pain in ways that I can’t do without.  

At some point in time there will be light at the end of the tunnel. Logic tells me this, and hope lights the candle that I hold in this space. Each turn of the Boring (but necessary) Machine brings me closer to the other side. For now, that is enough. 

Raw


***in the spirit of this post I’ve left it unedited. 

I’ve been thinking about this death, grief, life and recovery-from-it-all-thing. After 22 days of being in a snarky and angry state I will speak. 

December sucks. December sucks worse than raw lemons.  December has been my undoing this year. Why? I have first lived through our anniversary day. Now I must face Christmas alone for the first time in my life.  This must be faced alone because that is how growth intends for it to be: I can’t run from it. Growth isn’t easy. Deep growth requires that we look at painful stuff head on and go through it alone. Some things just ARE.  

In my closet, the Christmas decorations are in a large box. The tree is packed away in a box and secured to the pipes that run through the house.  It could be reached but I have no desire to inflict pain on myself. I do have a smaller tree that sits atop a cabinet. This I’ve decorated with the few things that Jon and I have purchased or been given.  Amsterdam, Salzburg, a wedding present…these items represent the sacred. It isn’t that the sacred is not on the large tree it is rather, that I know that putting up that larger tree is not a place I can take myself emotionally.  Maybe next year.   

I just want this to go away.  I want it over with. The season to me is dead. It hurts to be alone with this and there is no fix for it.  People don’t try to fix it. This fix that I have to wade through is only for me, myself and I. I’m not afraid of doing the wading as I’ve done lots of wading through awful stuff in the past year plus several months.

In talking with others who are making the journey to someplace else after being left by a loved one who completed suicide I’m finding that at least I’m not alone: this is common. Some of us know what we want or need and some of us don’t have a clue.  We all want it gone.

I’m finding that family and friends distance themselves because, for the most part, they don’t really understand what to say.  SAY ANYTHING. Say that you love me, that you care! Say it with cookies and chocolate. Say it with an Audible gift card. Say it with a phone call or an email. JUST SAY SOMETHING and don’t run from me.  Don’t run from us. We don’t have the plague! We’re surviving the worst death that can be had. We’re sorting out a mess of trauma and conflicted thought. We’re doing it while the world is getting happy.  We’re doing it as many of you are busy wrapping gifts to place under trees that for some of us will not be decorated. We just want to get through it. We don’t want to think about the missing gifts, the person who should be present, but that is no longer at the table.  And yet, we remember. We can’t stop remembering and the tears that are bitter, come.

For us our landscapes have changed: permanently.  We can’t get it back, and in my case I wouldn’t want it back because of what Jon suffered. 

I miss the sneakiness of the plans. I miss the thoughtfulness of finding his gift.  I miss his joy of opening it up. I miss him torturing me with the suspense of hiding something delightful from me until Christmas morning…he was so good at that.  It is no more.

In time December will take a new form in my mind and my heart.  For right now it is bleak, empty and frozen. RAW seems to be the theme for now.  It is raw at its worst and soft at its best. It has to stand in this manner right now.

In the future I will create a new landscape that is uniquely mine but for this year, I must get through the hell that is: RAW.

From The Netherlands Peace to all and to all a good 2018

Gail

He Let Go Too

What I’m about to share with you is personal. This is a complicated post to write precisely because this is the hardest thing I’ve ever done, or ever expect to do, in my life. While I’m sharing the experience, I’m not going to dissect what I did. It would take away from what happened. It has been a 3K-plus word project, and as I type this, I think, Why not just type three words and leave it at that? While that would make for rapid reading, it wouldn’t get the facts across. So, brew up your favorite drink, hot or cold, and happy reading. I don’t know what the final word count will be.  

When I first met my husband Jon, he was recovering from a single manic episode of bipolar disorder. It had been triggered by medication, and now he was working in IT and relieved to be back doing life. In the years that followed, I would learn how mental illness can traumatize the soul.  

The longer we dated, and by the time we married four years later, I was only too aware that I was involved with a man who could take his own life. It scared me. Bipolar disorder is a killer. It is estimated that 30% of those diagnosed with bipolar disorder will attempt to take their own lives. I now get why. I had become involved with someone at high risk. 

The only way to make a high-risk situation work within a relationship is to develop solid communication whereby both parties are committed to honesty. It isn’t easy work. Marriage, at best, is hard, and this only threw a wrench into the mix. We had resolved early on in our relationship to talk things out even if it took days to work it out. We both valued the hard work of making things work. 

While the first ten years of our marriage had challenges, his mental health was mostly stable. As I learned how to listen to the language of bipolarism better, I was becoming aware of how I could lower his stress levels. When I talk about this, the best way to help you, the reader, to understand is to say that it looked a great deal like “emotional violence.” He never touched me physically, but the pain and experience of seeing someone in a type of mental anguish takes a unique toll on the soul. I had to set boundaries, and when someone is in a rage, that isn’t always easy. I had to learn to get beyond the fear and hold my own. I couldn’t do everything, but I could do many things to ease his stress. With some good coaching from the psychiatrist, I learned to disengage. By doing this, he learned to calm himself, and I began to trust that he would calm himself. It was a difficult journey for both of us because I wanted to fix it and he needed me to pull back and not fix it. Fixing it can take away a person’s dignity. This way he claimed the right to know what he could do for himself.  

In 2010 the slide began and this time there was not much I could do. I watched as a severe depression crept in despite a well-constructed cocktail of drugs and a great deal of talk therapy. In November of 2011 he hit rock bottom. He was in bed and barely functioning.   

It was this episode that caused me to call his psychiatrist. It was this conversation that forced me to rethink my attitude towards holding on to the fear of “what if he does it?”

As a therapist I knew the statistics. I also knew when, and where, dangerous things could happen. When he was not functional there wasn’t an issue; it was when the energy returned that all hell could break out. As a wife, I didn’t want to hear any of it. I wanted assurance. And then the doc said, “Gail, you have to let go.” This comment, and thought, took me on a three-year journey. For three years I asked myself what this meant to me. Letting go has many meanings: which one was I looking at and struggling to unravel and understand?  

Did I need to let go of the relationship? Let go of the thoughts that he would fully recover and be able to return to work as he had previously done? Did I need to let go of the fact that there was a 30% chance he would attempt suicide and succeed? Was I looking at a higher probability that he’d do something?  

I knew that there were things I knew and understood. Mental illness, at its more intense levels, operates on the theory of “thirds.” One-third of diagnosed bipolar people will never improve no matter what. They’ll struggle with medication and hospitalization, never seeing improvement. This is called “treatment resistant” bipolar, or depression. Another third will be revolving-door patients. They’ll swallow the pills and when they are feeling great, they’ll quit the regimen and wind up back in the hospital and in crisis. For this third, if you can educate them about staying on the drugs and staying in treatment, there is hope. This is hard work and I’m not stating that there is much success with this third. The last third will seek treatment and do everything they need to do to stabilize themselves. My husband was in this last group. My nightmare was that something awful could happen. My fear was that something bigger than either of us could deal with would show its ugly head, and what would, or could, be done at that point in time? My fear was that in a reckless moment of time, he’d do something I couldn’t reason him out of.   

After sitting with the question of what letting go mean to me, and going through a three-year thought process, I came to the conclusion that “letting go” meant giving up the idea that he would never seriously consider, or act, on suicide. That he’d want to live above all else. What did this mean in terms of how I looked at him and our relationship?  

As I sat with this question and explored it deeply, I realized that if I was to fully let go, there were two things I needed to ask Jon to do for me. I had to be very clear about them because once they were out there, I couldn’t retract them. 

The time finally came for me to broach the subject of letting go fully and completely. He cried, I cried, and an understanding was reached between the two of us. He promised to honor my request. It was liberating for the relationship and it caused deeper healing to occur for both of us. While it took me until 2014 to say the words, the deeper work of healing had begun previous to this disclosure. During 2011–2012 he made some connections that enabled us to trust more deeply, and because of that, things smoothed out for us and peace set in. During June of 2016, I reminded him that I meant what I had said in 2014. I think it was a deep knowledge that he needed to hear the words again that caused me to repeat them to him. On the 28th of August, 2016, the pain proved too great and he did end it after a weekend of planning. (I was unaware that this planning was happening. That was not part of what I’d asked for, and therefore he felt he could withhold this from me.)

What I discovered was that my value system would not allow me to hold on to someone that was suffering so much pain, and that to hold him here would have been selfish on my part. As I spent time thinking about my needs and his needs, I came to understand that I had to turn this over to someone far wiser than myself. You can call it your higher power, or God, or whatever you will. I let go of holding on to him. I had to trust that he’d act in a way that would be good for him and for me, even if it was the hard thing to do. 

What I came to understand in hindsight was that I had done everything in my power to love and honor my husband. I had cared for him in the good times and the hard times. Despite the trials of the bipolarism, I had done well. Letting go of him has made my recovery a wee bit easier, as I’ve not felt the guilt that I might have felt otherwise.  

Having said the above, let me also say this: My husband was in his mid 50s when this happened. This was not something he did on a whim. He spent a good 31 years of his existence trying to make life work. He did his best at living. Sometimes the only way to end the suffering is to stop it completely. As I understood all of this, the ability to let go, while hard, became clear to me. He deserved someone who would let go.  

I’ve spent a great deal of time thinking about all of this. It is complex and hopeful, and a plea that we do as much as we can to understand why suicide happens, and come to an understanding that not every suicide can be stopped. Stopping suicide is beyond our ability. Putting resources in place to enlighten others IS within our capability.     

Did my husband do the right thing? Yes, I believe he did. He spent years living, and when the relapse hit, he made a choice to end the suffering. He had lived a good, but hard, life. THAT being said…

I’m aware that so many people are working to prevent suicide among one group or another—LGBTQ youth in particular. This has made me stop and think. I would not wish what I’ve been through on anyone. I didn’t want this to happen, but I can accept that it did, and that is OK. It has made me think about others who find the note, the body, or hear of the death, and wonder why it happened.  

I’ve asked myself what I would say to a parent with a child between 12–25 who expressed a desire to leave this life. I don’t think there is an easy answer, but there are things that can help along the way.  

I’d take into account that there is so much going on in their young lives and that they aren’t fully developed mentally or physically. I’d try to remember that for most kids, this time of life can be a real hell, and that life is lived intensely from minute to minute and day to day. I’d offer a safe place to fall. Sometimes Mom and Dad are too close and not the option they are looking for. Sometimes parents are the right option. I’d try to remember my own explorations and struggles. I’d try to shovel up every resource possible. Mostly, what I’d want to do is create safe havens for these kids and their parents. It really is all about the resources!  

I think what helps the most is to listen when it scares you, and to accept when it challenges you. Questioning for understanding and motivation will then be open to you. Be willing to learn the pain of their reality. Never assume that you know what that pain is, because most likely it is what we least expect.  

By opening the door, you open up the options! YOU might need to be the one to do the research. You might be the one that needs to take the lead. Keep in mind that you are raising an adult who is in a child’s body.     

Rather than shutting them down, I would want to hear their stories, and in hearing and then understanding, offer alternatives. I’d go down the suicide rabbit hole with the understanding that sometimes talking about it can do amazing things for everyone involved. I’d set some huge ground rules to let them know how keeping themself safe works. I think there is a huge misunderstanding that if the person talks about it, they’ll do it. Talking about it helps someone to explore their fears and the reality of what is in their head. We’ve gotten away from serious conversations about death, and by not speaking about death, we also fail to speak fully about life and what it means to become engaged with it.  

I’d tell them that they are valued for who they are and, even more so, for who they can become. Telling someone they’d be missed might sound good, but telling them why they’d be missed provides reasons for remaining around and engaging in life.  

One of the huge things I learned in my 20-plus years with my husband is that suicide takes only three seconds and happens when the person can’t see any resources to bring to the situation. In my husband’s case, the time for the resources to become effective this time around were too long of a wait. He wasn’t willing to remain in the pain.   

I offer all of this up for consumption in hopes that you, the reader, will not face the experience of walking downstairs to get lunch, only to find the note on the table telling you where the body is located.  

I offer this up in an attempt to bring some understanding that the pain survivors live with is real. This is traumatic. But, you can recover and move on. I believe my recovery has been smooth in many ways, but rocky in others.  

I offer this up to bring comfort to those who struggle to let go in life and death. There is hope and a pathway to peace. It takes time and the companionship of those who understand and can walk with you. Letting go leads to self-exploration. There is no schedule. There are no stages. In facing grief, remember that grief just IS.  

I offer this up because in my letting go, I was able to understand that I had no control over another human being, as much as I wanted to hold on to someone I dearly loved. But, this is the contract of life. We all are born into others’ hopes for us. We hope for a long life, a safe life, a healthy life, or many things in life. We come to believe in all of these things. We hope for them, and even plan on them. We learn all of this, and in our learning we become deluded! It is our delusions that cause things to come crashing down on us when the ultimate, whatever it may be, happens.  

I offer this to the reader because I understand that letting go is complicated and not something any of us can do easily. I admit that in sorting this out, I found myself in some scary and dark places. I wish that I’d had someone to talk it through with. I didn’t.   

I offer this to the reader so that those of you who have become victims of a loved one’s death by suicide will understand that you are enough. You did your best and it was good enough and nothing could have stopped your loved one from completing an unthinkable act. Give yourself credit for where you were in your thinking and understanding then, and the movement to where you are now.  

I offer this up to reinforce that the only thing we have in our control is the power to move through and beyond. I recognize that we will never get over this act of violence in our lives, but we will get through it. If you have not faced this awful situation but fear it could happen, seek a safe place to explore your feelings and fears around this subject. Get to know these particular monsters that dwell in the dark cave. Befriend them, and they will teach you in ways you least expect them to.  

I write this to honor those who have found constructive ways of celebrating those who chose to leave this life. I accept that their reasons were their own. I will not judge anyone’s decision for making the exit. I am thankful to know families who remember with courage and grace.  

I write this in the hope of informing people that peace can be found.  

I write this believing that while we may not be able to stop suicide from happening, we can offer up solid solutions for others so that they can live long and productive lives.  

I type these words knowing that I had to let go. I don’t regret having done so. He also let go, and it was the right choice.  

Please Do! Suicide and Trauma

When someone takes their own life, what do you say to those left behind who must rebuild, pick up the pieces, and move forward?  

If natural death is difficult for people to deal with, traumatic death and death by suicide are far more complex. This post is about what I call “the death bubble” bursting and making a mess. Oh, what a mess a traumatic death can be! And a death by suicide is far more complex than any other type of death. Why? Maybe it has to do with the unthinkable, and that the person taking their own life, in a sense, is “playing God,” or choosing to control a process that society says, and believes, should come at a natural end-of-life sequence. To so many, it is “taboo.” 

Maybe this taboo is what makes others pull back and not say anything to those affected by the death. In so many ways, those who are faced with a death caused by trauma or suicide need different support than others. I’ll try to say some helpful things here.

This Grief Is on Steroids 

The grief that surrounds suicide is intense and feels like a volcano erupting. The catch here is that it erupts in stages, each of them violent. It quakes, it steams, and at some point in time it will explode, and then all that lava slowly runs down the sides, burning everything it touches. Everything about the event and its aftermath will alter how most people who survive those they love will alter their world view. This subject matter can be addressed in another post. For now, the reader can choose to accept that the above-stated fact is fact. 

As I’ve stated in other posts, grief does not have stages—it never has. Grief, at its best, is messy, and grief that surrounds suicide is best likened to a catastrophic eruption in slow motion.  

During the first days, people might have to deal with a biohazard team cleaning up a very unpleasant mess. There might be a loss of possessions. These possessions could be meaningful to family and friends. The biohazard team takes it all away. If authorities in the area the person resided in still place crime tape at the scene of a suicide, there is that added burden on loved ones.  

There may or may not be a viewing. There may or may not even be a funeral or memorial service. The closure that these events offer to those who mourn can be shadowed by the difficulty of these events.   

During the first few years, those who mourn are forced to come to terms with their own lives, deal with the contents of a note, or the lack of a note, ask the “Why,” say over and over “I should have,” process guilt, come to terms with the death on a spiritual (not religious) level, as well as process any religious beliefs around suicide and possibly confront them. Simply stated, many survivors of a loved one’s suicide face an existential crisis. Supporting such a crisis is challenging.  

What Can You Do?  

Everything I stated about death still applies here. There is more, and here it is:

The First 24 Hours 

If the death has occurred in the family home, please, if possible, provide another place for the survivors to sleep. Try to keep everyone together. Ideally, a hotel should not be on the list of places to gather together. 

If sleeping somewhere else will not work, the next best thing is to move in with them for the first two nights, make sure the family is fed, cared for, and assured that for right now, they aren’t required to show up for life. They are going to need to deal with arrangements for the service if there is to be such an event. They will need help on so many levels.  

If there are young children involved, and if schools are in session, ask the children what they would prefer to do and arrange for it. YOU be the one to make school calls. Empathetic staff will understand the gravity of the situation and support the children in their needs. 

Assistance with meals and errands can be helpful. With meals, consider the fact that clean-up needs to be kept to a minimum.  

The Death Bubble 

If you’ve been through a death, you know what I’m talking about: that place where the world stops for you, and the focus isn’t about getting it done. And for however long it takes, you are in this place, or state, of surreal being. The world has stopped. Then the memorial or funeral happens, and society tells you that you have to get back to the races. You step outside, see the cars and people whizzing by, and you think, I have to get back on this grand people mover that is whizzing by me a million miles an hour! How? So you jump for it, and maybe you make it, but most likely you fall off again and wonder, Why? What is wrong with me? Then you stop and you think, I forced myself to move, and I tried to leave the bubble, but I’m still really in the bubble, and HELP! With suicide, it is as if you jump into the people mover, but you are hanging in the air and you miss the people-mover, and you get all banged up. Re-entry into the bustling world happens at a slower pace.  

When someone finally reaches a place of resolution and forward movement, it is because the hard work of grief has been journeyed. And while all might not be as it once was, a new normal is emerging.  

I tell you all of this so that you, the reader, who have not been in this place, can be aware of how to help in the beginning, the middle, and the continuing future. You get through it, but you don’t get over it. For those of us who have faced this in our personal lives, there will be differences in our process, but the understanding is there.  

Please Do! 

1. Look with your eyes. Act with those eyes and be proactive about bringing in meals, coming to clean the house, take the children for playdates, or whatever else is needed. In other words don’t ASK when; TELL your family, or friends, when you will show up! Then show up.  

2. Listen to, and provide a place for, someone to talk—if and when they want to do so. 

3. This is about them, not you. If someone is behaving in a self-centered manner, they are doing so because the pain they are facing is raw. Gentleness is needed. 

4. Keep in mind that no two suicides are alike. Once again, make no assumptions that what your friend or family member is now dealing with is anything like what you dealt with. Ask what the experience is like for them. 

5. Never ask about how the suicide happened. It isn’t any of your business. If the person wants you to know, they’ll share it. The fact is that you might not really want to hear the details that would be shared. This is not violence on a screen—this is real.  

6. What was in the note? Once again, this is private. Some people leave a note, and others don’t. Some notes give detailed reasons, and others don’t. To share a personal example, my husband worked on several versions of a note which I have. In the end, the note I found was only for me, and it was short and signed in a way only I understood. The note doesn’t get shared with others for that reason.  

7. Please stay near your friend and family member. Now, more than anything, they will need you to be present. They won’t need “fixing,” just lots of love and support.  

8. Please support them and remind them that while they may have the urge to make major life decisions, now might not be a good time to do so. If a major life change has to happen before the first year is completed, be present to support it.  

Why is #8 important? If you are in a place of dealing with trauma, the chances of making a good decision in your life is slim. Staying in a routine can help to calm the eruption that is occurring during the first part of the process. When a volcanic eruption happens, you are in “fight or flight” and survival modes. This means that cognitive functions might not be functioning as they need to in the realm of competent life choices. Offer to be a sounding board and sit with them to help them flesh out the “why” of the process.  

9. While there are no set stages to this process, there might be some feelings that are common to suicide. Some of the most common feelings and emotions that arise are anger, guilt, shock, hurt, “If only I’d known,” and being stunned into inaction by what has happened. This is normal. You don’t fix it; you listen to the survivor. In understanding this, you might also be better placed to listen as someone works through #8.  

10. Could this suicide have been stopped? This might seem strange, or out of place, on a tips list. It isn’t. I’ll share some things I learned from living with a man who was bipolar, and who discussed his ideas about why some people decide that suicide is an option.

People in emotional crisis need resources that work. They need psychiatric and other mental health people to be fully present and fully willing to serve as holding containers for their pain. The family and friends that surround them need to be open to serious listening. For instance, I had to go to some very dark places with my husband. It was going into these places that enabled me to understand the magnitude of the pain he was in. He had a workable cocktail and a great psychiatrist, and psychologist, who were extremely supportive. It wasn’t enough. For this post, it doesn’t need to be explained.  

One of the things he shared is that when the urge comes, it could be just that: an urge. I would remove what he asked me to remove from the house and get him calmed down. Those three seconds of non-access to tools made all the difference for years. He knew that I understood.  

I’m glad that places like NAMI (National Alliance on Mental Illness) and Suicide Prevention are around. They do good work. I’m especially glad that they are present for children, adolescents, and those in early adulthood. When the brain isn’t fully developed, understanding the consequences can be challenging at best.  

I’ve said it often: no one should have to find the note or the body.  

The above is complex. No, not all suicides can be prevented. There are several reasons why this is so. I’ll list them in no particular order: 

  • Lack of accessible resources
  • Lack of support, or ability to get to the resources
  • Undiagnosed mental issues that could have been treated had the person sought help
  • Family structures that are too rigid and do not tolerate outside assistance
  • Religious beliefs that prohibit mental health consumerism 
  • Lack of understanding by others of what the person is really dealing with 
  • The person masking the severity of the symptoms
  • Secrets that are thought to be so terrible that they can’t be shared with another person
  • Intense mental health issues that are so painful and untreatable that the only way out for that person is to end it
  • Uncontrollable impulsivity
  • Isolation that has gone on for decades

I’ve listed just a few of the reasons the person who completes their suicide chooses this route.  

I’d like to make a plea to the Western world: Please do take the time to know your family and embrace them for who they are. Please recognize that while we can’t save everyone, we can support and help those within our reach. A smile, a hug, sincere concern, and understanding go a long way to stopping the flood that causes so many to cross over and reach for whatever they have that will end it forever.

Please Do!

Please Do! Death

As I was out walking today, I got to thinking about how many times I’ve been asked “What do I say? What do I do for someone who is experiencing grief?” Those are great questions, and as the words hit the screen, I found this post one of the hardest I’ve ever written. Why? Read on and I’ll try to lay it all out for you. 

So, here goes! I’ll write from the first-person perspective and you can consider my words as if they were also coming from others. The catch? It isn’t so easy because pain is universally messy and anyone who says or thinks otherwise needs to rethink that view. However, I’m not trying to make this any more challenging than it is. 

Consider Grief and Loss as a Complex Process

We aren’t limited in our grief to the death of someone. A move, a change in schools, a friendship that goes bad, a failed relationship, an act of God that destroys everything you owned, a shift in belief, growing up and moving on: it is all part of the cycle of grief and loss. For this post, we’ll journey with death.  

Please consider your feelings as you think of others who face the unthinkable in their lives. Please credit them for facing what they are dealing with in their own way, just as you do the same. Please consider their minds, hearts, souls, their physical needs, and the relationship you have with this person. 

You never know what will happen to you to set you on the path into grief and loss. You never know how your life may suddenly transition along paths you thought you would never be walking.  

We as humans tend to think of ourselves as indestructible until we are well into adulthood, and we still avoid the thoughts that it—whatever “it” may be—can, and will, at some point, happen to us. When it does happen, we are caught ill prepared. Few people think about the “what will I do if” scenario seriously. True, you might let your mind wander, but most people don’t really go there because they don’t want to think in those terms until it blows up in their face.  

I’ll admit that I was rare. I was forced to think about it at age 14 and again at 16 when my younger sister underwent heart surgery. I thought about her possible death, and when it actually happened shortly after my high school graduation, I still wasn’t prepared for what actually happened. But, having thought about it earlier helped. Living through it was another thing entirely.  

Some Handy Things to Know 

The catch is that what might work for one person may not be the right thing for another person. So, with that in mind, I’m going to lay down some general guidelines and a few specific things you can say and do for people in emotional pain after a death. 

The first rule is that we all miss those we care about. To say that we will never think about them is an untruth. We get through the process, but we don’t, if we’re honest, ever get over it completely. No matter what you believe about death and an afterlife, we miss those we care about being with us! Yes, at some point in time we move forward, but that movement is a process. It is normal and OK to miss and hold on to the memories. Someone just got removed from our life, and whether it has been a lifelong relationship, or a shorter one, that person is irreplaceable. This is why the “at least you can” comments, or “God must have needed an angel,” hurt so much. Regardless, these people can’t be retrieved.  

Who we are is formed by our relationships: our memories, the love, the pain, what we’ve gained, or lost, by having them. Death happens, and we can’t replace that person. I won’t delve into the negative side of a loss. I know it exists.  

The next rule is there are no other rules, because everyone’s grief and pain and journey look different. So, the first big “to do” is to remember that there is no such thing as “fixing” someone’s grief. There is nothing wrong with anyone who is grieving that a good cry and lots of caring won’t help.  

Another thing you need to understand is that humans can react like injured animals to grief, loss, and pain. We might feel the need to defend our territory aggressively. Like an injured cat or dog, it might be important to secure the wound/person in safety, and let them know you are aware of the loss they have experienced. They still might snap and react. Stay calm, keep a cool head, and give them a wee bit of space. Don’t abandon them: tell them you are still with them.  

I know, now you might be saying “Snap?” (Any label might fit this behavior, but I’ll use “snapping” here.) I don’t think I want to deal with a snapping person. Why should I have to deal with snappy behavior? You need to deal with it because at the core of pain, depression and uncontrollable reactions camp out like an ugly monster. This monster is in attack mode until it understands that it can let down the defenses it has erected. Many times this is when people turn and leave, abandoning their family member or friend. Knowing why a person is reacting violently by displaying intense emotions toward you is helpful. Hopefully they are also letting you see them in this state because they trust you enough to let you into their space. Reserve judgement because you don’t know enough to have an opinion yet. When they calm down, ask gentle questions. They’ve just let you into a dark and scary place and sympathy is needed here. Remember that empathy can allow reflection in a gentle manner. What both of you have just witnessed was powerful. You may both be sitting with strong emotions. Your reactions, both verbal and nonverbal, can be crucial here.     

Keep in mind that they might be triggered by something that they don’t understand yet. Helping them by listening as they talk it out will bring both of you closer to an understanding. Remember, this is one of the things that friendship is all about. Remember, you aren’t there to fix anyone. You are there to support and listen.   

Setting healthy boundaries is also helpful. For instance: “I think that this is pretty scary for you and I can tell that you are showing it by snapping at me. But, please don’t snap at me. I’m willing to sit here with you. I know you need someone to sit and hear the ______ that you are feeling, and when you snap it causes me to want to back off.” I actually had a friend remind me of this after I told him not to interrupt me. It was, for our relationship, the right thing to say, and I was relieved that he could keep a cool head when my emotions and pain were tumbling out in ways that I would have rather not hurt him with. At the time, things were raw, but I recognized that I did need what he offered me.  

Boundaries, set in a gentle manner, tell the person being heard that you will be patient with them, but that you are also needing to protect yourself so that the urge to leave when the hard stuff hits the fan is safe for both of you.  

This next part is tricky. In setting boundaries, you may have to go to some places and hear some stuff you don’t want to hear. If someone has to let a string of words fly that you don’t like to hear, sit with it. Sometimes the use of multiletter words is shorthand for the stuff that, in the moment, the person can’t verbalize. It buys some time to be able to return to the thought and rephrase it. Sometimes it is all someone has. Don’t set too rigid a boundary in this. Be tolerant.  

During the first days or weeks, people are in hypersensitive mode. Everything is a trigger. Relationships and boundaries get tested in new and horrible ways. This test can go on for weeks or months. I’m not excusing awful behavior. I’m saying that you can gently set some healthy boundaries so you don’t feel like running away. You can do this by acknowledging the pain you may both be feeling. The two of you are feeling it differently, and there is no correct way to manage pain. It just is.   

For some people, the depression around their grief and pain hits them hard, and for others, it is a gentle, oncoming cloud. They may or may not see it or feel it coming on. They might get defensive about it. Part of the defensive behavior is that they might not fully understand what they are dealing with. This might be a huge first for them. Don’t try to fix it. Sit with it. Our feelings and thoughts with grief aren’t always worked out quietly and gently. Trying to fix something disrupts the natural process of things.  

There Are Some Helpful Things to Know in This Process   

Please…

Tell me you respect me for getting up every day and facing the nightmare I’m living. 

Tell me that you don’t understand, but you want to understand, and mean it. Tell me this even if you’ve been through something similar. I’ll tell you what it feels like for me. Most likely it will not feel, or be the same version of grief, loss or pain. 

Tell me that you will listen to my stories, no matter how many times I need to talk about whatever it is I’m dealing with, and follow through with this promise. I’ll move forward in my own way and in my own time. Don’t expect to see me on a schedule, because it doesn’t work that way.  

If it is OK with you, tell me I can call you when I’m in a bad place, and then be there for me when I do get courageous and risk calling you. I’m not going to be in a good place, so you will need to drop what you are doing and create a safe place for me to let it all out. 

Tell me I can fall apart if I need to, and mean it.  

Tell me you will sit with me until… (This might mean different things to different people. This sitting business is hard.)  

Get Curious

Sometimes what ails the soul needs exploring and understanding. So ask if you can question me about what it is I’m struggling with. Your healthy curiosity will cheer me on. I may, or may not, be desirous to share my experience with you. Ask open-ended questions that require a sentence, paragraph, or even a page to answer; be patient. Grief, loss, and pain aren’t contagious, so feel free to learn about what I’m willing to share. The things I’m not willing to share might change over time, so be open to a changing landscape.  

This means that you might ask some very basic questions. Tell me in advance that you are wanting to understand me, the pain I’m in, and you, just like me, are summoning up the courage and bravery to explore and learn. Turn towards the unknown. As you face the pain with me, I’ll still struggle, but I won’t be as alone.  

Understand that when I’m alone, I may still dissolve into a ball on my bed. I might shed tears that I can only cry in privacy. This is normal and part of the healing process.  

Consider that the “first” of everything will be hard. I don’t know how I’m going to feel, so ask if I want company on a holiday, birthday or anniversary. If I say that I need to be alone, ask if there is anything that you can do to help ease the day. A simple phone call might do the trick. I might not be ready to do lunch, or anything, in public. Respect my wishes. On the flip side of this, keep me in the loop. I might be one of those people that needs to know what’s going on in the world despite not being able to pull it together enough to get out. However, I might want to get out, and then when I’m there, I find it was the wrong choice, so allow me to exit stage left gracefully.  

Sometimes someone’s struggles might require a meal six or twelve months after the grief has set in. (The grief might not set in for over a year.) Bad days come at different times. They are not predictable. This is also true for being able to provide self-care for oneself. While the thought might be appealing, the energy needed to actually pull off the self-care might be lacking. Making the coffee or tea and cleaning up the mess is a huge help. Running the bathwater for the much-needed soak and cleaning up the mess might be necessary.

Sometimes the person can tolerate reading, or being read to, and other times, the sensory overload is way too much for them. It is the same with music. This is not abnormal. The brain can get messed up during this process, so be gentle and sensitive.  

Fixing Me and Fixing “it” Doesn’t Work 

Fixing me or fixing it—whatever the “it” is—can’t be done, so instead, learn to sit with the uncertainty that the ugly pain brings to our doorsteps. I think it is the idea and desire to fix the pain that someone is feeling that leads to all those “don’t say this” articles, as those comments, no matter how well meaning, cut like sharp knives and cause deep wounds to be opened. If you want to offer reassurance, offer the reassurance that you will walk with someone through their grief and pain for however long it takes. Saying something like “Get over it,” and other comments like it, tells the hearer of the comment that you are wanting to fix it and rush them through a process that can’t, and shouldn’t, be rushed. “Fixing it” is more about your needs. I think this is also one of the reasons why “at least” and “they are in a better place” comments are so unwanted. While it might reassure the person who says it, such things are insensitive to the loss that is on the surface. It feels like a fix and a “I need you to exit your grief and get back to the way things were” kind of thing. Things won’t ever be the way they were. 

What Do I Say? 

Start with “I don’t know what to say, but I’m really sorry that this has happened in your life. I can’t imagine what this is like for you. I’m bringing dinner over tonight/tomorrow.” (Then show up—no excuses!)

Make this about the grieving person. Ask about sharing memories of the deceased. Many times people hold back with this. Sometimes when people lose someone, they want to know about the things that others remember, and reminisce. There is a desire to share what we loved about them. “Gone” doesn’t mean it’s a taboo subject. “Gone” can mean that the need to remember is vital, and it should be present in our relationships.  

Sometimes it’s actually the “doing” of something. One of the hardest things for widows or widowers to do is to grocery shop. There is something about roaming the aisles that sets the mind, the memories, and the grief flowing in ways that nothing else does. Maybe it’s all the stuff they loved to eat, or the fact that you won’t be fixing it for them anymore. Maybe it is all the stimuli going by that causes people to abandon grocery carts and head for their cars without having purchased anything. The cupboards may remain bare. So, offering to help with the shopping might be useful. Offering support for this task might be just what is needed, but then again, it might not be easy for the person to tell you what they want and need. It might be helpful to go with them and have a list, so if they need to leave, they can, and you can finish the job for them.  

Keep in mind that it is embarrassing to have laundry pile up and not take out the trash. Offering to help with this, if you know them well, might really hit the spot. Brew up the tea or coffee, or whatever it is they are drinking, and let them relax. The fact is, a cleaned-up space can help them relax. Actions count!  

There is so much, but I think I’ll leave the reader with these parting words: you can’t fix it, replace it, or rush it. Speak words of gentleness and care. If the words don’t contain your own need for fixing, replacing, or rushing of the process, you are on the right track. 

Being in the Room: Part 1

I’m posting this as an update. I realize this is a long post, but read and learn. My friend George is on new medication and is doing great. It isn’t a perfect fix, but it really works for him. I’m also posting this as a 1 of 2. I’ll be adding to this blog.

Today I discovered something about my kitty Princess Penelope: she needs me to hang around while she eats. The reason for this is that when ’Roo and Bob (my other cats) were alive, I supervised the eating process so that they did not mooch off each others’ food. I guess she got to like the secure feeling my “anti-mooch” presence provided her.

After Bob died, I took to placing Princess’s food down and letting her eat. I’d go about my business and I thought everything was fine. It wasn’t.

This morning when I fed her, I stayed in the room and sat at the table. She’d eat and come over to see me, and then return to her eating. Just like a two-year-old!! I thought about this and realized that her time of adjustment by my being in the room while she eats is part of her process of building a new life without Bob. For 15 months I was in, and out, of her daily life. I’d better remain present now: she still needs me to be in the room.

Lately I’ve been thinking about being in the room for those who need us. It isn’t always easy, and sometimes it can be frightening to watch someone you know and love suffer either physically or emotionally. So, how often do we remain in the room for those that need us? How often are there enough people in the room? Rarely. Sometimes people run from friends and family because they don’t know what to do, or are just scared. They run from perceived rejection, which can be very real. People turn from the room because of the anger and resistance that are present there. In all honesty, who needs any of that anger, rejection and resistance-to-help stuff? However, the person in the room needs you.

Yesterday I had a talk with my mother and she asked me about someone who I am presently “in the room” with. I’ll call him George. Her comment to me was that George is really suffering. Yes, he is, and I hurt for him. Both my mother and I have known those who have suffered in life, and it is hard not to hurt when you see this type of emotional pain in others. Seeing this type of pain isn’t a highlight of life, but it is what life is made of, and I have chosen to not run from it.

George is suffering from depression, and despite the fact that there is a treatment team in place for him, he feels very much alone within his life. He feels many things: some are rational and others not so rational. Depression is a blood-sucking alien that distorts every aspect of life. For some there is no escape from the daily ravages that depression can cause. George is one of those people who, despite medication, is not helped as much as he’d like to be helped.

Here is something I found to be very valuable in my process of remaining in the room with George (full lecture). This is a great lecture and explains depression well. It is well worth your time to listen and learn.

Staying in the room is challenging, heart-wrenching, and at times frustrating. It takes work on my part to remain supportive and present. I remain a friend to George because I am committed to our friendship. True friendship entails being there for the fun, the good, the bad, and the hard stuff. True friendship seems to be a dying art.

We each know someone who needs us. If your circle does not include such a soul, look deeper into your circle and you will find your own George, or Georgina. If you say that you have looked and there is no person with needs, then ask yourself WHY? I promise you there ARE people who need you this way in your life.

What George teaches me is to show compassion when it is hard to do so. He teaches me to remember that there is hope. I learn each time with him to search within myself for understanding. He teaches me that I can’t fix it, but that I can listen. He has taught me to be a better therapist. Knowing George has enabled me to look at the way I deal with my own struggles in a more honest manner.

What I hope George is learning is that I will not leave the room. What I hope George is learning is optimism in his daily life. He might never be completely rid of the depression, but it can be far better than it is now.

We all know a George. This is someone who struggles with something that causes you to question what you can do for them. Sometimes the feeling is that you don’t know what to do, so you do nothing. You feel embarrassed, or clueless, and feel as if you can’t relate to this person. You might not want to admit that you are truly ignorant about what to do with someone facing a particular challenge in life. But don’t walk away!!! There are many ways of dealing with those in need. There are things you can do to learn how to remain in the room.

Getting into the room may not be easy. You might find resistance at first. That is because there is going to be disbelief and shock and skepticism inside. At first you may not be welcomed with open arms. Keep your heart in the right place and things will happen.

Here are some things to start with and to keep in mind when entering the room. It isn’t a complete list; it is meant to get you to think of what you can do if someone needs you.

If you don’t know what to say at first, be loving and kind and tell them that you aren’t certain of what to say. Tell them that you will listen a great deal. The fact that you care enough to be there is a grand beginning. Once you have started to earn their trust as someone who will remain in the room with them, offer to help. Ask them what they need.

One woman I know sat for hours and did some needlework while her friend sat, slept, and then wanted to eat. Just being there opened a door so that her friend could learn that there was someone who cared.

People with depression suffer from low energy. Don’t challenge them physically. Let them set the pace. While you can see the benefit of getting out and walking, the thought of putting one foot in front of the other might be too much of a task for them. Reassure them that it can get better. Don’t expect them to move towards anything rapidly. At this point in time, my friend George manages to walk for five minutes on the treadmill. That is all he can do and it is enough for him.

Try quiet things. Keep it low energy. Sit and talk. You might try giving them a back rub (if they are comfortable with your doing so) to help stimulate the body. Music and other quiet, soothing activities can also help. You might discover other things that are easy and low energy. Don’t try to overstimulate someone; let them set the pace. Think about doing things that take little concentration. People who suffer from depression have brains that are often offline.

Make sure they eat. Meals are great. Lack of energy and lack of ability to keep nutritional things on the table is an issue for many with depression. When your brain and body aren’t working efficiently, the ability to make good choices becomes difficult. Easy, fast, and low-energy consumption is how many people with depression function. Grocery shopping takes time and energy. Everything takes energy! Thinking takes energy, so a depressed person might try to avoid activities that entail complex thought processes. Cooking and cleaning are two such activities.

Commit to being there. You might get hurt. You might get told to “get lost.” You might wonder why you bother with this person. You might want to leave—don’t leave. The more you listen and learn, the more you will know what to say to your friend when they feel as if there isn’t hope. Don’t promise them things you can’t deliver. Deliver what you say you will do, and be consistent about it. If you are honest with them, they’ll be honest in return.

Your friend may be feeling embarrassed with the situation. This isn’t easy for either of you to deal with. Your friend might not be totally honest about what they truly need. They may feel as if they are not deserving of your time. Your friend might think that the only way they are going to get through the ordeal is to go at it alone. Let them know that they aren’t alone by showing them that you are with them.

Depression sucks the life out of its victims. The depressed person may attempt to drive you away by creative means. THAT is the DEPRESSION talking. Realizing that you are actually having a dialogue with an illness will make hanging in there easier to deal with. You might not be thanked at first, but hang in there, as eventually the tide will turn.

You may see how important it is for your “George/Georgina” to get professional help. They may understand the need for help as well, but might be too worn down to help themselves. Offer to help them get the help, but make certain that they are still in charge of the situation. They might need reassurance, they might be scared, and they might not be able to understand how bad it really is. Point things out gently and don’t push. If you are kind and gentle, you will have an easier time being successful.

Switched-Off Brains

Imagine that you have a laundry pile that needs doing. You walk by hurriedly because you are running out the door and can’t get it into the machine. When you return home, you go put the laundry in the machine and simply get the wash done. That is what normally happens. Now, in the mind of someone who is really depressed, this is what happens: they see the pile of wash, walk by and think, Oh, I must do that wash and I will do it later. The next day they still see the wash and think the same thing. This goes on for some time until a crisis, or something else, triggers the wash having to be done. In simple terms, the brain is switched off. One of the plusses regarding medication is that it can switch the brain back on.

I am just scratching the surface, but my goal here is to get you to think of remaining in the room.

I want to talk briefly about suicide and medication use. Suicide happens because there aren’t enough resources to bring to the situation. Most people want to live and move on. Most people, even when they do have feelings of suicide, don’t want to act on them. This does not mean that a person won’t act, but rather they are driven to act because they feel that the resources have run out. I’ve known family friends who did act. They are now beyond my voice. For them I wish that there might have been a way to help. I wonder what went wrong. What could have been done to bring the needed help to each of them?

The most dangerous time during depression is when a person has the energy to act on the impulse to suicide. It takes energy to kill yourself. A person with a lack of energy can only think about a plan, but once their energy rises, they can carry the plan out. You might want to know what your friend is thinking as far as a plan, and to be prepared to “suicide proof” the house. Make a protection plan in your mind. Don’t be afraid to ask directly “How suicidal are you right now?” I’ve asked this at times, and been told what I needed to know. George says that my asking lets him know I’m in the room.

Medication is a tricky thing. It isn’t the answer for everyone, but for those that it works for, it can be truly helpful. Medication is a process of hit-and-miss, and it takes some time to get it working well. A good psychiatrist will work with you to find a good drug, or combination of drugs. The best results for treatment combine medication and talk therapy. But, don’t expect the problem to disappear in one to six weeks!!!! Be gentle with yourself and work with your mental health professionals for the best possible outcome. Think of those involved as part of a treatment team. Help your friend to understand this, and to be gentle, and realize that it will take some time to see results.

Penelope is now sleeping here on her blue table by the window. She seems content to sleep and enjoy life. I smile at her lovingly because she is acting better and feels my love for her. Okay, I assume she thinks all of this. Meanwhile, George continues to learn about his depression and how he can strengthen himself. Life does go on, and each day that I am in the room with him is a day that is good. Now, if it would only rain chocolate. AHA, there’s a thought.

Being In The Room: Part 2

A few of my readers have contacted me off-blog with questions. This second post is meant to address those questions and focus on the area of support and maintaining a positive outlook when you are in the room with a person that is stuck in the tube of depression. This is long, but worth it (in my humble opinion).

One of the issues with depression is that there are many who distance themselves and few who are courageous enough to enter into a support role. This can be a really dark, lonely place to be in with someone. Depending on the variety of depression that is being dealt with, there can be many dynamics occurring.

Here are some suggestions: 

Be a friend. You can’t fix it or make it better. You CAN urge them to take steps to get help. Know that this is easier said than done.

Above all else, you are a friend first. Your love and caring for this person is far more important than anything else, and they need to know that—no exceptions. However, this doesn’t mean that you fail to set boundaries with them.

There are several reasons this is hard to do; the depressive brain is not thinking logically.

The person with depression might behave in an aggressive manner that shuts you out because they are fighting to protect their dignity, their space, their denial, or their uncertainty about what they are witnessing within themselves. (And this is just a fraction of what might be going on in their head!)

YOU have to decide if you care enough to push through the facade. Sometimes you act out of love, and you find that it is more than you bargained for. Once you are in that room, leaving can do a great deal of damage, so hang in and learn how to be a good friend.

Recognize that the depression will most likely speak louder than your family member or friend.

Remember the laundry pile? You are dealing with somebody who has switched-off logic. While their brain might tell them on some level that something is not right, they may not be in a position to make the connection.

Something called “psychomotor retardation” is occurring in their body. This means that physically and mentally, processes slow down. They can’t think at a normal rate. Movement may also be impaired.

They may, or may not, know what they really need. You will have to ask questions. Ask slowly, and don’t ask them several things at once. Their ability to process answers may be impaired due to psychomotor retardation.

At first they may not have the energy to think about the answers, but as you persist, over time they will open up. They might not believe that you are taking a genuine interest in them and might push you away: Stand firm. You are doing a great thing, but remember their brain is processing inaccurate information. Reassure them that they are worth your time and that you really are there because you care about them.

Once you break through and establish some trust in this area, things will change. You’ll know this because they might call you and tell you they are having a bad day, or that they need a walking companion. It could be anything. They might admit to some of the chores that they really struggle with. Offer to help out and follow through.

Sitting in the Room

You are now with them; they know you care and they are willing to accept your support. How do you keep yourself healthy?

Reward yourself!! Dig into your movie stash and watch a favorite film. Read a book or article. Pursue your hobby. Do anything that lifts your spirits under normal circumstances.

There are times when you might need to talk and let it out. Make certain that your talking partner understands your need to process your own feelings. Just as you can’t fix the depression for your friend, you don’t need someone to fix your feelings about being a support person.

I’ve mentioned setting boundaries. Often people think that setting boundaries is about saying NO. It is also about saying YES and compromising. It is about knowing and understanding when you can say “I need to finish x, y, and z.” There are times when hearing the urgency in their voice will signal a decision that it needs to be heard right then.

You Can’t Force Anyone to Do Anything

As much as you might want to force a promise out of this person, you can’t. They’ll promise you only if it is their choice to do so. If you expect them to commit when they aren’t willing, it will cause both of you to have stress. It will strain the relationship and you will burn out.

Now that the above paragraph has been stated firmly, I’ll explain further what you can do. I’ll explain what you need to know in order to keep your head together.

Professionally, I want to keep people safe. If I have a client who has the energy to both create a plan and carry it out, that client is going to need to be in a safe place. That might mean a hospital. I set very firm boundaries with my clients.

George is my friend. George and I have a deal. George has promised me that he’ll talk to me before he would carry out a dangerous plan. The problem with the type of depression George has is that his mood swings are sudden. George knows that if he were to complete suicide, it would hurt me and others.

I’ve had to come to terms with the fact that you can’t stop someone if they are really hell-bent on doing it. That is also part of the depression dynamic. It really is a no-win situation. The thing is that by knowing and accepting what could happen, I am less stressed about it. That doesn’t mean I’ve stopped caring, but it does mean that I’ve come to a peace about how I deal with the threat of suicide. I can listen and try to understand.

I’ve known multiple people who have committed suicide. I’ve shed tears and yelled and screamed and I wished every one of them were still here. I’ve also realized that for each of them, they felt there was no other option. This has caused me to listen to people seriously, and to respect the power of depression in their lives. This is why I have the policy that I do towards my clients.

Take what your family member or friend says seriously. When they can’t move and do much, that is one thing, but when they can move and carry out a plan, that is a time for action on your end.

Support Teams

You shouldn’t support alone. The ideal would be to urge your friend or family member to seek professional help. Build a treatment team. If at all possible, find someone local. Find a professional that works with depression. Ask around because depression is common and someone you know might be aware of that professional person who helped them. Some are better than others. If medication is an option, know that there are some psychiatrists that are better than others. Here are some tips you might not find on other sites:

  • Anyone who won’t take the time to do a proper intake and evaluation is out. I once saw a psychiatrist spend two hours on an intake with a man. Because of the time he took, the doctor was able to look at this man and his depression from a completely new angle. It made a great deal of difference. It might take several visits to really understand the issues. This is also true in terms of locating a good therapist.
  • Does your friend or family member want you involved in the treatment process? Sometimes you, or others, must be contacted if the need arises. I’ve had family members contact me to report urgent psychiatric situations. When depression and suicide are involved, I can only ask for this to be in place, and we talk about it before it is put in place. This is a relationship and can be negotiated. So, as a therapist, I have signed release forms before I speak to someone of my client’s choice.
  • Does this professional work in a holistic manner, or are they only focused on their particular slice of the therapy pie? If the therapist or psychiatrist takes a more holistic view, be prepared to support this. They’ll most likely start with the diet and exercise. People with depression don’t eat well, and often they don’t have the ability to exercise because of low energy. The list goes on, but these are two basics. When the time is right, both eating and exercise should be addressed. You, as part of the team, may have an influence here. Most folks like a good meal. The exercise is a wee bit trickier. That will take time. George is into food because it is one thing he can enjoy.
  • Getting a gym membership might not be an option. How can you exercise? At first, it might be that walking or running around the house is all you can do. Then as things pick up, walking or running in front of the house, or building up to a walk around the block!! Keep it simple and low energy. George lives near a foot bridge, so we walk and feed the duckies. This activity works on multiple levels. Get creative. Walk a neighbor’s dog for them because doggies should be walked. Find something that is easy for the depressed person to do. They might have insight into this as they become stronger in dealing with the depression.

I Haven’t Mentioned it All

I’ve only scratched the surface here. This is meant to get you thinking. I hope it does do just that. Get in that room and stay there, and become a person that says yes to being a true loved-one, or friend in a time of need. You will be thankful that you did this for them, and when they finally pop out the other side of the tube, it will be a grand celebration for the both of you.

Three Years Ago

As I sit typing this, I’m remembering. It doesn’t hurt like it did. It doesn’t cause the eruption of tears it once did. Tonight, three years ago, was our last date. We went and got ice cream and sat out talking, and when he got saturated by the surroundings we went home. We didn’t go out the next day. I have no memory of what I did that Saturday, as it has been wiped out. But, I can tell you what happened Sunday: that will never be wiped out. That was the day that he “did the deed,” as I now think of it.  

Pain like this doesn’t just disappear; it doesn’t do anything helpful. Pain like this is a pernicious tyrant of a thing, hanging around and teasing you. Just when you think there are no more tears, you start to tear up again. When you think you have the tears under control, they continue. Oh, they aren’t the same ugly tears of the beginning, but they are still ugly. This is an ugly cry on steroids. It is beyond description.  

Three years later I can tell you that grief and pain have altered who I am on some level. There are times when I have become selfish and ungiving. “I’m not that,” I scream to myself! And yet, when the pain surfaces in waves, “I am that.” Grief on steroids alters the soul.  

I’m having to be real about this. Getting through this means getting really real about what happens inside the mind as well as the soul, and how you handle it.  

Some of the things I thought I was certain about have become large uncertainties. In the beginning I thought that everyone would pull together and rally with me. Not so. What I discovered in the first six months was that people were clueless about what to say. Let’s be real here about what you do say to the widow whose husband did what he felt was, at that point in time, the only option he had left. Treatment had not failed him, but the thought of continuing on wasn’t an option for him. What does one say when the guy was in so much mental pain that the ultimate act was the only option left?  

I’d gone into things knowing the risks. We’d talked many times during our 22 years together about “What if the mental pain gets so bad that…?”  He knew how I felt about him and the suffering he was in. Three years ago it boiled over.  

I wouldn’t wish this on anyone. Knowing what I do about bipolar illness just makes it harder at times. And now, as I write this, I cry.  

It doesn’t go away and it never will. Pain like this changes in quality and quantity, but it will always be present. 

You might be wondering, well, if it’s changed, then are you over it? NO!!! You work through some things, and when you work through that stack of stuff, other stuff surfaces because that is how life is. I can say this about my process but not someone else’s: in meeting grief head-on, it has reared its ugly face to me. Grief has caused me to stand stronger than I ever thought possible. I’ve had to risk, to grow, to survive, and to learn how to thrive on my own. I’m still working on it. You know that line from The Abyss where she drowns herself and he carries her to the pool and they’re trying to revive her and she isn’t coming back? Yeah, the one where he slaps her silly and tells her to fight because she’s never walked away from a battle. That one. Well, that’s me. I’m just doing what I’ve always done. This time around it really sucks.  

Yeah, three years ago, my life took a strange turn. Three years ago it altered me in ways I’m still discovering. Only three years and I remember it like it were yesterday. 

The Rose Room

As some of my readers know, I’ve just painted and will be painting the rest of the space soon. There was one room that has gone untouched. It is a beautiful rose color, and in it there are many treasures. It is the Room of All Things Gail.

On the walls there are works of art, and each piece has a loving history.

There is a painting that my aunt Ruth did way back when that I treasure. I love it because she let me have it, knowing how much it meant to me. There is the counted cross-stitch that my friend Leann labored to create for me. It is beautiful, and I cherish it because she performed a labor of love when she stitched it.

Along with that, my older sister Beth has a place of honor with the picture that has been with me since childhood. It is a Gail version of The Princess and the Pea. She put me in a blue dress on top of many mattresses. Each mattress is a different color and design. I love this so much and someday it will go to one of her daughters.

Hanging in the Room, and moved from the bedroom, is another counted cross-stitch. My sister-in-law Peg made this for our wedding. It, too, was done with love. Shared love is the only requirement to be placed in this Room.

I also have two stained-glass pieces of art that my mother-in-law Mary made. I am so thankful to have them.

Hanging in another place of honor is the wedding bouquet that my three sisters-in-law Peg, Bev, and Rebecca created for me.

There are two parasols that Jon hung up. I’ve mentioned in “Sneakiness is Happiness” that he backlit them for me. That is a day I will remember forever. Oh, the love that filled the space that day!

The Room holds objects that span the years of my life and are sacred to me. It holds something from a friend who I came to know in the last five years of my life. That friendship has given me many gifts of thought and hope. Thank you, Betty. The Room is my place of healing and restoration. I can sit quietly, get ready for my day, and read in that room.

In some ways the Room has existed for a few years, but in other ways the Room is new. The Room in its present form emerged into its new role in my life over the late summer and early fall. It started with knowing that I wanted to place a new piece of furniture in the Room, and as I envisioned where it would go and how it would feel in the Room, The Room grew in purpose and my understanding of the space began to change. What I had used as an office during Jon’s life would be no more. My office was to move to the other side of the house where the sunlight can stream into it and I can see out into a larger world.

This Room called Gail is a place of healing and hope. This is where my heart is found, where the healing is strongest, and where, when I enter, I find the most peace.

For those of you who read “Raw” or listened to the podcast (Parts 1, 2, and 3) that I posted late in 2017, my healing journey has been both traumatic, challenging, amazing, and in some ways even peaceful. I suppose that it has been a combination of watchfulness, the love and caring of others, and the understanding that this type of pain and hurt only dissipate when faced head-on. It is my tiny sanctuary, however, that allows me to find what I most need in my heart.

It is the realization that I can say a loving goodbye to someone I have loved deeply. He is not in pain now. It is also an acceptance that I can hold on to his memory in new ways.

The creation of this space has done its secret healing and holds a place in my soul that I didn’t understand until I let go to find it.

I don’t think that there is any single or correct way to heal from something like this. I think that the best healing comes from following your heart and soul and listening to your gut. Healing involves talking and finding a supportive listener. For the listener, you need to choose wisely. Find someone who you feel a bond with, someone who respects you, and who you respect. If there is not such a person in your life, then find a good therapist who understands both grief and the loss involved with a completed suicide.

Healing is about recognizing that you will have really good days, really bad days, happy days, and days of hopelessness. Healing is about allowing the depression that will come because of the death that has entered into your life. Sit with the depression for a time, and if it doesn’t fade, seek professional help. Healing is about understanding that the pain will diminish and calm. Healing is about loving yourself. It is about seeing yourself in the mirror as “enough”: no more and no less than “enough.”

Healing takes strength and courage. It is your own unique journey.

As I spend time in this healing space, I’m discovering its complete power. It is the power of the lit candle in the darkness. It is the homing beacon that steadies me. It is that place that tells me that I’m loved, both by myself and by many others who I both know personally and who I only know because of the Internet.

To walk through the process of healing is also to be able to look out the window on a grey day and see the sun that the clouds hide. It is a knowing that you and only you can fully understand. It comes from traveling through it and stumbling along the way. It happens when you stand up once more and say “AGAIN!” You are never beyond, but you have moved on.

Forward movement takes on many forms. Sometimes it is a return to the old haunts, and other times it is the unexpected and unfamiliar that call to the soul. In many ways, the Room of All Things Gail was totally unexpected to me. It was a feeling that I had to create a place of sanctuary.

As I write this, I am in my new, blue office space surrounded by books, my sand tray collection, and hope. This space is one I’ve claimed as mine. As I look out of the window, I see the stormy skies closing in; I see the other homes in the area. Most of all, I see LIFE. It is good. It is peaceful and this is my space now. This is the room where he wrote the notes. This is the room where he spent so many hours. And yet, this is not “that room” any longer. The painter came one November day and covered the rich green walls with my beautiful blue color. The painter took nothing away but what had to go. It doesn’t hurt like it did a year ago. This is a place I come to work and to enable the healing of others. This room also holds some treasures.

While blue is the color of my soul, it has not been the color of my deepest healing. That has been rose. That Room is just a few steps away from where I now sit working on this, and I shall go there to feel the warmth of the sanctuary: the Room of All Things Gail.

As I sit here, I realize that I could not have created this lovely space without the Room of All Things Gail. It was the power of healing that let me say goodbye to what had been, and greet anew what was to be. It was the power in that Room of Rose that set me on a journey to claim the space I’m now working on. It was the realization while sitting in that space that I could, and should, listen to my heart and follow my desires to create what I wanted for myself. Thank you, Rose Room. I think I’ll go there now to pause, give thanks, and continue the journey.

Navigation

River pilots have been a mainstay of the great rivers of the world, and in the U.S. they taught many how to navigate dangerous places and waters. I’ve used this analogy in closed groups, and am now choosing to use it here in this space. I hope the message is one of hope. This is an imaginary conversation.

The master river pilot and I sit in the boat eating bread and cheese, drinking the cold water of the river we’ve been on. The pilot is silent and waiting for me, the student, to comment.

“Devastation and damage is there. That is what I see.”

“Is that all?”

I slice off more cheese and bread and drink the water.

“No, I see triumph and wisdom.” We turn back to view what was navigated, and we both sit in silence, thinking over the trip that has placed the boat in its current location.

WHOA! We both survey the damage, crazy as it is, and we embrace. I’m sobbing in joy and gratitude. I stammer an “I could not have done this alone,” and take the pilot’s hand. “You didn’t tell me how beautiful it would be, and I didn’t think I could see it this way. This river is magnificent! And so is the damage!” Yes, in my fresh realization I discover that the damage I have navigated has its own beauty.

We can see it all! The mountain and the sacred space. We can see the dark, creepy forests and the valleys that held spaces of peace. I wonder if the people that were there are still present, or if they have also left for new destinations. I notice a city and inhabitants exploring its environs; they are being told to get on the newer, more elaborate boat that has been brought to this point in time. I knew it was time for a new boat, and a new journey. I understood the pilot would not be as active this trip, but that if I asked for help and assistance, I would have it. I had grown much, and it was time to test my new strength against the currents on my own.

I remember the terror of boarding a tiny, dilapidated boat, feeling as if it would get me nowhere, and preparing to sink as I went out on the water. But I remember thinking that if I had to be on the water in this craft, I’d better do my best to save or repair it. And that is how the journey began. I remember beaching the craft and walking inland to a forest that looked dark and threatening. I sat on a rock and cried because I knew I had to go into that place and I was alone and fearful of journeying into the darkness. I wasn’t afraid of what I would find, but I was uncertain of navigating in the darkness. As I sat there, I heard the tinkle of bracelets and earrings. It was a gypsy lady! She was saucy and vibrant and said that she’d been in that particular forest in the past and would be glad to serve as a guide. Together we reached a meadow of great beauty where the gypsy helped me locate a magnificent chrysalis that was just about to hatch, and as we watched it, the most beautiful butterfly emerged. It was the soul of the woman who had gone into the forest!

“This is yours and it will be with you forever.” The memories come back and the memory of the bond between the two of us floods my mind. The butterfly has remained nearby as the journey has unfolded. It holds magnificent strength! I know now that I have been molded by this soaring creature of such beauty, and I still wonder why I have not captured its deeper essence.

In wondering about this, the butterfly responds to my heart:“You have! You have been so busy on the journey that you’ve failed to look in the mirror! All you see is the damage! You know the beauty is there, but have you really claimed it for yourself? You are aware of triumph and wisdom, but are you aware of them residing in you? Don’t you remember when I broke free? Don’t you remember how I soared? Do you think that was only the beauty of my wings? You doubted what I gave you, but I’ve been near you all of this time. I am you, in pureness! Take a fresh look at me!”

I return to the boat and realize I’m crying. I gasp for breath and try to calm myself.

The master looks at me, the student of the river, and echoes the butterfly: “Your butterfly joined you so long ago that I think you have forgotten her full power. You have held her close and soared, and at other times sunk into deep despair. She never left you, and when times required her to, she reached down and pulled you up to travel on the river another day. I sent the gypsy lady to you when you needed a primer that would serve you well and prove to you that you could do this work of Life.”

I sit speechless. What words can I use to respond to this? I don’t have words—only a realization that truth has been spoken.

“When I asked you what you saw, you spoke of the worst first. You have done this type of thinking for so long that it has become primary to your functioning, and yet when you stand tall and survey the surroundings, you also speak to the triumph, and finally, the wisdom that you have gained.”

The master teacher and navigator has me focus on the rapids that I so recently transited.

“Look! What is there?”

“Only triumph. I don’t see anything else. But you were there with me, guiding me through the rocks, and when the boat began to take on water you stood and watched as I bailed myself out.”

“I only did that to teach you to trust me as you never have trusted me before. I knew that in your heart you wanted to learn it for yourself. You have learned this part of the river well. Well enough to guide others. Look again and learn from the journey you have been on. You are not that scared, younger woman of so long ago. Look at your hands. Feel your strengths.”

Once again the truth is spoken to my heart.

In the past two years, the journey has taken me to many places on the river. It has been a transit and journey of a new type. Leaving the old and finding the new, only to discover that the old has served in ways I never felt it could.

The boat I am in now is simpler, yet sleek and modern. The guides who have served to enable me to navigate the rough stretches have come and gone. Each has taught me new things. Each guide has specialized in a very particular portion of the river. But the pilot who began the journey with me has remained.

As I think back over the journey, I’ve come to understand the lessons the river has taught me. Pain and growth, whether in childhood or adulthood, teach strong lessons. I’ve gathered them in and managed to weave something out of it all, yet I’m not quite certain what it is all about. I just know that it is there, and that someday I’ll look over it and maybe have some insight that isn’t present now.

What I have learned from all of this is that there are times when the insights we gather serve us well, and other times when our view can trap us into paths we’d rather not wander on.

So, as I pause on this river, look and observe, I can’t get too snarky or certain. I am, like each of you, a traveler on this river. I navigate it with respect. I turn to the master pilot and navigator and announce that it is time to run this new river area. I smile, get a slice of bread and cheese, and more fresh water. I wonder who the new guides will be. I wonder if I’ve learned enough to guide myself or others. I realize that it’s not my call. But the master of navigation seems to feel that I’m ready. I turn my back on the damage holding the triumph and wisdom in my heart and raise my voice to the skies in a way I have not done in two years.

“Okay, cast off!” I drop the ropes that have anchored the boat to shore and sing as I do so. The boat feels good and sturdy, and I know that on this new stretch I’ll learn, grow, and move in ways I have not done before. I wave to the navigator, who is once again on the shore but never out of contact range.

“Show me what you can do now! I’ve been waiting so long for you to run this portion of the river, and run it you will!”