My Five Anns

Note: My goal here is to put a more humanistic face on several psychiatric disorders. I hope you will read and learn. Note: 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 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 work, and to make some good matches, I had not given working with schizophrenia 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 here

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 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 of 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 process 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 hear Ann yell hello as she passes by in a car. I do 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. She 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. And because of those thoughts the cycle of hospitalization 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 Ann’s, and my favorite group member, went off of her medication and was re-hospitalized. Violence to others is low

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 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 and cracked three ribs.

While schizophrenia can wreak havoc with the mind it does not mean that the person with the 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 suicide.

I think of my five Ann’s 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. 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 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?

Posted in Getting to know Mental Illness | 1 Comment

Life with PXE

As my readers know I deal with PXE

When I was diagnosed, in childhood, little was known about PXE. The dermatologist who diagnosed me and my two siblings told us not to believe the literature that said we would die from PXE. At nine years of age I did just that: I didn’t believe the serious nature of what was in my body. At 56 I believe what I read because I know I can die from this. The truth is PXE is brutal and does cause disability and death.

Recently during my weekly chat with my 86-year-old mother (who has better eyesight than three of her four children) I was informed that my younger brother was facing some form of surgery and treatment for his heart. This was and is not good news to hear. It is hard to hear this because I live in a country where PXE is something that doctors know something about. It isn’t that way in the U.S.

I called my siblings and talked to them. I sent some mails with doctors names. My siblings like that I know something about all of this and have access to better treatment for the PXE.

Then Netherlands is a small country. It is roughly the size of the greater San Francisco Bay Area. Because of this it simplifies things medically. There is a central hub in Utrecht at the UMC where treatment for PXE is being directed by a great set of doctors. UMC In the U.S. this type of treatment for PXE isn’t present. The Netherlands as a country decided to put money into the sciences. Medicine is a priority. This makes it possible for my brothers’ doctors to talk with my speak with my doctors who know in more detail about PXE. I’m confident that they’ll learn what they need to know. Maybe something good will come out of all of this.

If you took the time to read the above link on PXE then you learned some crazy and wild stuff. I grew up with complications. I began my life with blindness which turned into low vision. Faces in the Light This just added another layer on to the situation. My ophthalmologist keeps reminding me that with eyes like mine they really don’t know much. The odds of there being anyone else like me are slim. I’m fine with being unique: I just wish they knew more about my uniqueness.

If a person with healthy vision has a problem with their eyes they can tell rapidly there is a problem. I can’t do that. I’ve never had normal vision so how am I supposed to know if my vision has become abnormal? I’ll tell you two stories to illustrate my point.

This is an Amsler Grid It is a tool to check vision.

My older sister had good vision for the first part of her life. She’d test herself with the grid and things were going well. One Sunday while driving with her husband she noticed that the light poles were wavy. Something was wrong. She went to the doctor and found out she’d had a bleed in the retina. She has lost all of her central vision in both eyes.

My sister Beth knew when something had gone wrong. So did my brother. I didn’t know until it was too late.

I didn’t know something had happened until sitting in a hotel room in Nijmegen here in the Netherlands. Things just didn’t look right as I tried to read the text on the page. Print seemed smaller. It had been that way for some time and I was just noticing it at that point because of the intense reading I was doing. That was over a decade ago and the wild ride has been informative.

So yesterday when sitting with the vascular doctor he tells me that he wants to treat me for osteoporosis they just found. I’m fine with this. Then he tells me that one of the things I need to watch carefully is my vision. I only have 12% of my vision left. What vision I do have is central vision. It isn’t normal central vision. I left his office feeling like the only thing that happens there is bad news and that being put into a kind of tail spin is my new normal.

I’m telling you this because I’ve grown accustomed to being different or unique. I’ve made my peace with the fact that when I ask a doctor something the answer might be “we just don’t know.” The upside is that I know these men and women are researching on my behalf so I’m willing to help that research along in any way I can. I don’t view any of this as anything but amedical adventure that will, in time, help others.

After 56 years I’ve made a spiritual kind of peace with my body. I’m not talking about God or anything like that. I’m talking about being happy with who I am. I’m happy that I can have the health care I have. I’m thankful for the universe around me.

I will still get frustrated at times; I’ll still be not OK that some things don’t go smoothly for me: life isn’t smooth. If I have to credit a real starting process for this resolution it would have to be to thank all the good eggs at the Loo Ert It began a process of quiet resolution.

I will add that the Loo doesn’t exist in any form in the U.S.A. I’m glad I had this experience.

Does this mean I’m going to abandon the fight for the disabled? NO!!! What this means is that I’m planning on using a larger voice to plead with the universe for better understanding of not only the physically disabled but also the mentally disabled.

Get on board it’s going to be a great ride of learning that I’ll try to keep fun and informative.

Posted in Disability and Life | Leave a comment

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 it all away 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. I 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 what we either do fail to grasp and 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 a question. 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 you? How does thinking about this alter who you are going forward? Why would you make the changes? What would your reasoning be?

The offer of the gift has made me look at me and understand 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 m 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 the question I found a gift. This gift is that I like being Gail. I like somethings about being who I am with the disabilities that I had not thought I was that happy with. Thanks Jon.

Posted in Disability and Life | 3 Comments

Ushers International

A reader with ushers asked for some help in getting the ord out. I’m bummed that I couldn’t get this up sooner but I didn’t read it until late Saturday evening. Here it is for your information. Please take the time to learn about people who function with the loss of two vital abilities: vision and hearing. These people are challenged in ways that are beyond anything I can imagine.

I’ll post a link to the blog.


Posted in What it's about | Leave a comment

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 about. Good luck: we’re all going to need it.

Six weeks from now, mom, you are going to decide to take me to the pedestrian 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 like 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 this news without daddy’s being present and it 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. 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 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-gooder 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 the 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 until I’m 18. 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 all things 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. I’ll 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 later in 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 is going to help me to become more coordinated. It is also going to fill my intense need for 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 love 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 and you will give it to them. You will play a tug or war with children who have special needs but you will do pretty darned well.

I’m also going to tell you to not feel guilt over what you didn’t understand raising me. Guilt is useless: it never helps anyone in constructive ways. Guilt only slows us from progressing in the ways we desire. I won’t be the perfect daughter so please understand that you will do your best and it will be a great deal better than many parents ever do.

Eventually I’ll marry someone who sees me as a very unique person. We’ll have our ups and downs and we’ll grow together. He won’t understand my breaking out the sledge hammer in the same way you have struggled with it but I think he’ll watch in awe just as you have. By this time in my life you will have gone from life daddy. You’d like him and he would like you and call you dad.

I can’t give you a full account of what will happen in my life because I just don’t know. I can tell you that I’m a fighter and that this will blow your minds at times. I can tell you that I won’t always get it right. I can tell you that I’ll want to see the world, I’ll get to live in several different countries and learn about their cultures. I can tell you that I’ll be a good person who loves people and who wants to see good things happen in the world around me. I’ll try my hardest to live my best life. I love you already and I just know that you are in love with me, your third child and that you have chosen a nice name for me. I am Gail and I’m all yours to raise.

Pressing send before the space-time continuum closes.

Posted in Disability and Life | 4 Comments