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My Five Anns

Note: My goal here is to put a more human face on 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 where 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 latter two 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 of a 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 little 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 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 U.S. that suffers 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 half-way house and run a fun music group for the residents there. “Get them to sing, talk, and create something.” 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 re-hospitalized. 

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 with 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 it’s 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 makeup free us up to pursue better solutions for the challenges we face in life.

I’ve come to re-think 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 has been an on-going 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 do I need to provide for my family, and what would I 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 return 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 over-consuming, 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 U.S.

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. 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

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.


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

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.

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.