Sharon's Shoebox Meaningful Messages from the MD Community

From Tom:

Hello Dan,

Thank you for so eloquently relating this episode (Loss of Confidence). It illustrates a rite of passage that everyone with a retinal degenerative disease goes through. We all come to witness ourselves struggle and lose the ability to continue doing tasks which were once just taken for granted. At first we do start to question our whole self, to lose a little nerve, and sometimes to feel ashamed or lose self-worth. Then we get rational and accept that we are going to work more slowly, get a little help, prioritize and focus our efforts, and surrender certain high risk activities like driving. Some things go, some stay. Some stay, but are done more slowly. We start to parse our sense of loss, and remember that at our core we are still who we always were, perhaps better. The disease takes certain activities from us, but it comes down to the individual to decide whether the disease takes our dignity. I have no doubt at all in your case that it will never do that.

There is wisdom is Sharon's words. The losses are insidious, they have a way of permeating much of life silently because they take ability away in tiny increments over time. There is no one definitive loss to accept and adjust to, but a just a slow, steady erosion with no way to know what will be next, where it will end, and what will be left. I saw an instance of that this weekend when I filled out tax returns for our household and for my mother. It took me a couple hours longer than the same task took a year ago, and I kept having to double back to make sure I was reading from and writing to the correct places. And where did I put that W-2? I had it just a minute ago? Something that was easy last year was a real effort this year, and despite all I've been through I hadn't expected

It gets very frustrating. I try to compartmentalize, saying I can still do these things well, others things but not as well, and finally some things I just can't do anymore. Unfortunately, activities keep sliding downhill from one compartment to the next one below it. I'm 46 and I fought an elaborate campaign against this for 16 years before losing my job last summer. Now I look ahead and realize I have a long time to live, sliding down hill all the way, and I ask myself what can I hold onto, what can I build my new life on. I am struggling to accept that I am something other, and something more, than my abilities. That is very, very hard for veteran "can do" types like you or me. I know I can hold onto my faith, my courage, the love I share with others, my principles, and my determination to give whatever I can. You seem to make use of all these things very well. Nothing can take that away, and nothing that can be taken away is as valuable as these cornerstones of our lives.

This has been a week in my life whose central theme has been frustration. Your sharing let me feel that I was not alone. Thanks.

From Jim:

Thank you everyone. Your heart felt support and kindness have touched me deeply. I have always heard that no man is an island. Well, I have always been an island. Until meeting y'all I have been happily alone on my island. I have always had what it took to overcome whatever obstacle lay in my path. I just never had someone to share with, someone that understands.

I was thinking this morning, my life has been like a glorious cave dive. Caressed by the loving embrace of mother earth. I have hidden myself from the sun, enjoying the warm earth tones of the underground passageway. Secure in my abilities, comforted by my life sustaining equipment. To live, I must leave this beautiful, but unreal place. Just as I must decompress after a long dive, I must decompress after so long alone. I must wait, allow nature to take its course. While I wait, here at my ten foot stop, I must stay the course, the alligators are circling. The water is so cold. I want to go home, back to my little island. I cannot. I see the sun, and it is more beautiful than I remembered. I must forge ahead. Thank you all for being here for and with me. Also, a special thank you to Laura, who brought me here. I wonder, Laura, with all your intuition, did you know this would happen to me? Did you know this secret about me? That I had coped with the mechanical aspect of dealing with my vision, but not the emotional?

Thank you. I love you all.

From Cathie:

Tabby and Friends,

Crying equated to shame for me, and I did not want to have that! So I hid it: both my vision loss and my shame. I made great efforts to hide my vision and appear sighted. Image was everything! I gritted my teeth, dug in my heels, and refused to let a little thing like Stargardt's hold me back. But the tears came once in a while. When I thought I had it all under control and I was blind sided, smacked it the face with the reality of having a visual impairment.

I particularly remember when I was 13. Our family had moved from Vancouver to Toronto over the summer, we had settled into a new home, etc. The week prior to school starting, we attended church. At some point, I started to cry. I couldn't hold it back. I think I was surprised as any of us, but I think the reason was that during summer I could act as a "normal" kid, but at school I had to read and write, and the differences and difficulties were obvious.

Sympathy or pity were not solicited or appreciated by me. I shared only with those very close to me and only as needed. It was important to me to be strong, self reliant, and all that. I shake my head now at all that energy spent on the façade. I think it built character. As the years went past, however, I grew to accept my vision loss. I probably grew weary of the game!

Now, almost 4 decades later, I celebrate my differences like a badge of courage. I'll share what I see (or not), how I might feel, and how it affects my life. I'll share with school kids, community groups, or the person next to me on the ski lift. If asked, I'll tell you, but if you say your sorry, I'll know you weren't listening to me! Being able to ask for help, accepting help when offered and realizing that I can still maintain my dignity are one of the many lessons I've learned begrudgingly.

And let's not forget the humility and patience that have been gained, as well. Perhaps this is just a big lesson in being human! Also, we do not all approach our vision the same way, nor will others, and that's still all OK. We are not all the same. There is not a right way or a wrong way. What works best for each of us comes first. What works for others that perceive us comes second. That's just how it works best for me.

From Tabby:

I was diagnosed at 17, and the last four years of losing vision and coming to terms with having a disability have been challenging, to say the least. Well, let me admit it - at times, they've been very painful. But as I've acclimated to this shattered visual world of ours, the cracks and crevices of our unique experience have offered up hidden gems - small, shiny pieces of the magical side of living. The more I've grown accustomed to looking, the more I've been able to discover with this new form of sightedness.

In Martha Beck's book, Expecting Adam, she discusses her experience as a Harvard educated mother of a child with Down Syndrome. She talks about one holiday when she bought Adam a toy machine-gun that required such large batteries she was forced to wrap them separately. On Christmas morning, Adam opened the package of batteries and mistook them for his only present. Before she was able to explain, Adam was declaring that it was the best present he'd ever received, and running around the house putting batteries in everything with an on/off switch. As the gadgets of her house came to life, Martha realized that batteries really were a good present --leave it to Adam, she writes, to see through the outer layer of something and discover the magic within.

This holiday season was particularly hard (both personally and for our nation), and so as I boarded the plane on January 3rd to fly from my hometown of Austin to my college town of Boston, I wasn't expecting to unwrap any batteries of my own. (or recognize their worth if I did)

I boarded my plane to find that someone had taken my seat, and as I fought traffic (the opposite way) to find another place, I felt hassled and impatient. There was one vacant spot three rows up, but when I reached the person sitting on the aisle, he didn't respond to my polite request for passage by him.

It took me a second to realize he was blind. (the legally blind spotting the completely blind can get tricky) As I sat next to him, I realized he could not tell if I was trying to sleep or read, so in all likelihood he would not initiate conversation. It took me a few inner-monologue pep talks (why was I so nervous?), but I finally leaned over and touched his arm, asking the first (and, okay, only) conversation starting question that came to mind. "Are you from Austin?"

We chatted the rest of the flight. As we laughed about Texans in cold weather, my chest swelled with hope. Being blind in the legal sense of it, I'm perfectly aware that blind people are just people. However, spending every waking minute trying to squeeze into a sighted world that doesn't quite fit can make one wonder if they simply don't belong. This man made no pretense of fitting into the pants of the sighted world, if you will, and seemed to be getting along perfectly fine without them.

He told me the stories of all the other people who had sat next o him on plane rides. When he got up to deplane, a careless passenger (who did not notice his blindness) hit him in the head with her carry-on luggage as she reached above him to retrieve it from the overhead bin. Suddenly, my chest deflated, and the hope I had felt turned to dread. I realized how completely dependent this man was on the kindness of strangers - to notice him, speak to him, assist him - not just for company but for his very livelihood.

A combination of literal and emotional turbulence left me feeling nauseated as I stumbled off the plane. Could I live like that? Do I already, in some ways? As I made my way through the terminal and began my ritual formulation of how to ascertain my gate number without appearing an idiot, I heard someone from behind ask, "Are you Tabby?" He was a fellow student at my college who I met at a party two years ago. He remembered me from a five minute conversation about where I lived freshman year.

He had already "checked the screen" for our terminal, and as he escorted me there we talked about his first two years at school, the classes he was taking, and the exams he had coming up. He was smiling and happy and friendly, and to this day I don't know his name. But as I sat down for the second leg of my trip back and marveled at how much better I felt, I realized how badly I had needed the kindness of a stranger at that moment. I needed it, and somehow, it just happened.

In a week, a large group of my friends from school are going to Utah to ski. When I was first invited to come along, I was hesitant. I knew I'd be sad to go and not ski, but at the same time the thought of skiing as a blind person was terrifying. Today, I called the National Ability Center and booked three afternoons of skiing with a guide.

For the first time in my life, I will be easily identifiable as a blind person. To tell you the truth, I've found this halfway house between blindness and sight can give a person a pretty bad case of low vision cabin fever. It will be nice for a few hours to take off the clothing of the sighted world and put on a bright orange vest that says, "Blind Skier."

Someone on the RPlist made a comment on Friday that he doesn't walk with sight, he walks with faith. I only hope I can live up to his example. I plan to ski, and have fun with my friends.

From Anonymous:

Ralph and friends,

I'd like to let you and others know that this fear, panic, stress, etc. may go away. For me, it came with acceptance when I no longer tried to hide my low vision: when I quit trying to pass for sighted. Really, I think it was when I decided that there was nothing wrong in having a visual impairment. If there is a stigma, it is on others part not mine. We should not feel badly for the lack of awareness or uneducated public. When new acquaintances say to me, "You don't look blind," I think "You don't sound stupid." My little joke!

Cheer up. Life is still very good.

From Mary:

Hi Maxine,

Here is one more visually impaired friend who has experienced over and over what you have. I cannot tell you the number of times I thought I had this thing beat, and I would now soar above the clouds, never to sink again. It simply isn't so.

I joined the list in the late 90's, very depressed, and certainly on the roller coaster. I did the positive things and they help, but face it, a loss is a loss and you have to grieve. If someone you love dies, and you are alone, yes, you can go on, but you will always miss them and be sad at times. Loss of independence is horrible, but walking through the pain will, in the end, make you stronger. I never thought I would get so bad as to have to give up driving. Now I realize one day I may have to get a seeing eye dog. Somehow, God comes through with friends here and on list, and family to pull me through.

Yes, I am a dependent woman now. Dependent on others to do for me what I used to do for myself. Yes, I dislike it very much, but I also see what was a proud self having to make way for a more humble self, which must please God and others. I have enjoyed getting to know my friends better, as they have to drive me around now. We often sit in the driveway and talk. My husband and I have to run errands together, and it has made us closer.

Remember, when God closes a door, He always opens one. There will be many things to take the place of your vision loss. You will be surprised. Don't beat yourself up over going down. It is all a part of this disease; bit it does get more bearable as time goes by.

From Dan:

Dear Nan,

You asked, "How do you others cope with people who seem incapable of just accepting and understanding what you are going through?"

One answer to that is to decide where your center is. Is it in other people or yourself? Mine used to be in other people, but then I decided that if I placed it properly, other folks would realize that I understood my own value and that I gave it priority. That's when they started putting forth a little more effort to get into my zone, where I am more in control.

As for people who just don't get it, I no longer rent space in my brain for them. That leaves more room for my real friends when they come to visit.

From Kristie:

Dear Sharon,

I should have know that if anyone would respond to my "maybe it's a pack animal instinct" it would be you. No, I don't really think that the pack is genetically programmed to throw the weak ones to the lions. I guess I'm still just trying to figure out why my disability affects other people. It's not like this thing is contagious. And I know that there is a lot more to being a person than just the physical body. I just don't know why other people don't know that. I think it's just the idea of disability that freaks people out. I think it might possibly be connected to the American dream/Protestant work ethic. If we are disabled and really unable to work, how is it that we can have any value in a culture that measures value through our productivity. And if the American dream is barred to us from the get-go, perhaps it causes our friends to really reconsider the whole concept.

From Anonymous:

Dear Kristie,

I have wondered the same thing about peoples reactions to disability. I wrote another lister my latest theory, and I think I will throw it out to the list.

I was at the drug store yesterday waiting for a prescription to be filled, and I overheard a conversation between the Pharmacist and a customer. The Pharmacist asked the gentleman if he had any allergies to any medications, and he replied, "I don't know, since I never have to take medicine". They laughed, and he left. I heard a tone of superiority in his voice as he said that and I got to thinking.

We tend to take credit for good health, good eyes, hearing, etc. Even when, for the most part, we have nothing to do with it. My daughter, for instance, has 20/10 vision and has gotten praised all of her life for her exceptional eyesight. One who has been healthy all of their life is considered to have a strong constitution. This is true, but I sense a pride that arises in these individuals. Short of actively trying to undermine health (drinking, smoking, drugs etc.), most of what we get is due to little or no fault of our own. Yet, we tend to take credit for good working parts, and, as most of us can attest to, we tend to feel badly about ourselves, because of less than good working parts.

We struggle with feelings of worth and usefulness, as we are a" doing" society. The truth is very different than the perception. Disability or illness is no respecter of persons. One can be thrown into the other group in a matter of seconds. Unless you are a pure believer in "the survival of the fittest," as is exhibited in much of the animal world, then you must believe that worth (or the lack thereof), cannot come from something that we have nothing to do with. In other words, it can't depend on whether we can see well, hear well, walk, or talk well. I, of course, believe that God has given us intrinsic worth and we are not what we can do!

So, there you have it: a bit of philosophy on a Saturday morning.

From Maxine:

Hi Ann in Wales:

So glad you posted today. What you are experiencing is quite natural, as your whole body is in an uproar. I went through exactly the same thing. When I found this list, I was a basket case. I was sure that life was over for me. I posted and posted, not really listening to what the people were saying, just wanting to talk. As I am here longer I see this as a pattern, just while that person is straining to find the meaning of having MD, and especially why were they chosen.

It helps to pour all this out of your body and soul. After a little while I started to "listen" to the others and that was when I started to heal. I "heard" that I was the victim of my own thoughts and that I was doing this to me. I learned that I had to just live one day at a time as this disease is so different for each person, so there is no answer as to what today will bring. I learned there would be a great many hills to climb, but that each one, with time, would be less steep, and the road would be level a lot more of the time.

My biggest fault was that I took each change in my eyes and panicked. Then one day the light went on! Instead of panicking, I just "looked" at that change and thought about how I could go around it and still be able to do what was suddenly changed for me. This has been so good for me. I have been able to stay pretty much with what I decided to do, and things have started to slow down for me. I now notice that it is making a change in other areas of my life. I would never have known to do this without all my friends here, many of whom are handling life so well against overwhelming odds in some cases. I do not know what lies ahead, but I am better equipped to take it on now.

Hang in there, Anne. Read the letters, and keep them for future reference, and maybe you will find in one of them an answer, as I did. One person said that this MD is only another event in your life and should be treated as such. I now find that profound. So many of the people here will never know how they have helped me but I will never forget what they have done.

Reach out to us, and prepare for the holidays ahead, and get in there and live girl. You are not changed, you are just going up another hill. Do what seems best for you, see a counselor, whatever, but keep pushing on. And most important, accept MD as part of your life. It is here to stay, no matter what. May as well invite it in, and offer it a cup of tea.