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No Regrets: Just Lessons Learned

No Regrets: Just Lessons Learned

This is another post from the vault and was writen 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. They are praised for accomplishing things and supported to get back up and try again when they fail at something. Like our fictional boy, they know that “I am having a real good time like I am”

A healthy child learns to earn the privileges he, or she deserves. They learn to wait for the toy that they want, and earn the prize honestly. And along the way, they come to understand that they are unique, but not “special” within their world. They learn 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 float 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 “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 into 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 little fictional 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 become 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 such 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, and 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 theatre 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 side-kick. “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-quit-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 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. ***** The diagram for the eyeball is at the bottom.
Gail
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 now a happy sighted one year old who is 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 decided to contribute a bleed in the retina and lessen what vision I have. 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 most likely 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 the person 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 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, you are through labor and delivery, and that I have 10 fingers and 10 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 and she is going to remind you that this is not your doing and that you had a very mild case of rubella and nature happens. 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 you 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 care givers. I know that in the 1960’s 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. We are all three 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 ’60’s and early 70’s. 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 and 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 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/Maira

Night Walk and Maira

I guess you could call today “Maira Eve” and as I have been thinking about my life and events that lead 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 sit 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 10 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 upon 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 roof top 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 post in this category are posted from the first published 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) (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 Goddard 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 Goddard 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 Netherland’s weather. 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 that 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 “G’s” 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 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 and 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 be 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 did I do my best and did I do 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 himself.  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:  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 powder.  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-ones completed suicide?  

In writing this I wrote a list of the do’s and don’ts.  The problem is the list is MY of 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 mid-track 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, 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 thus 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, 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, crashes in, 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 support 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