Sharon’s Shoebox
Meaningful Messages from the MD Community
Throughout the years, the people of MDList have shared many important messages about coping with vision loss. Sharon Chism, a veteran MDList subscriber, has been saving those messages that speak to the many emotional challenges. Like a shoebox full of treasured letters, her collection is now on this site for the inspiration of others.
If you have been with us for a while, we hope you will enjoy revisiting these words. If you are new to our community, we hope you will benefit from reading them for the first time. Sharon will continue adding to the collection, so we encourage you to return from time to time.
CONTENTS
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Messages About Anxiety & Depression
Messages About Grief
From Elaine:
Of all the things that MD has stolen from my husband, Colen, the hardest for him to handle is his loss of self-confidence and self-worth. To me he is the same wonderful person he has always been even if he can’t DO all the things he did before MD. But he cannot separate the two. The man as a person and his ability to accomplish are one package. He’s a tough cookie, and will come to terms with this just as he has come to terms with having MD. But I fear that inside his soul, where no one goes but him, he will never be the same and for this I grieve.
Thanks so much for the open and honest sharing of your feelings. I read each post to Colen and sometimes he just nods, sometimes he discusses it, sometimes he laughs, but this time he just cried. He knows he’s not alone.
From Sharon:
Donna, I know that you will rise above this but I feel your fear and tears. I have been working on a sort of poem. It isn’t exactly the way I want it yet, but I felt compelled to share it with you! I am startled by the many brave and shaken lives that this list has welcomed in the past few weeks alone. I hope some of you can relate to this.
I wonder, out loud even
the sense of it all.
Shuddering as the gray closes in
on bright, unsuspecting lives.
Their voices cry out
in a haunting harmony…
I can’t, I can, I can’t
Oh God I want to!
Little by little the Master
seems only to deny
as each face and star surrender
from our longing eyes.
Can you hear me?
What did I do? Why?
Crying for answers,
groping at faith.
Alas, gentle flickers
whispering hints of hope.
“You are wonderfully and fearfully made-
that body is not you!”
New vision seeps through the mist
recreated, deeper.
Love replaces smiles
while courage lights the stars.
Oh unobscured view
can there be sight so worthy?
To Focus not on what we do
but sets our gaze on who…
From Sharon:
Alice,
You wrote, “…and I’m able to deal with it somewhat, then there is more vision loss, and I go through the whole grieving process. I suppose that is why I’m depressed.”
This phenomena is one of the most difficult aspects of this kind of degeneration. Loss becomes our companion and if we are not careful it becomes our focus. I have battled this for 30 years and have not gotten used to the feelings of helplessness. Though, I have gotten used to grabbing the remnants of hope that are always dangling in front of me, tattered as they are at times. Not the hope that I will be able to see like I used to see ( although that door is not closed to me either ) but hope that I am not doomed to a life without joy and pleasure. It is harder to extract it sometimes but it truly is a choice to insist on trying! I can honestly say that I struggled with depression and will probably do it again, so don’t feel bad. I just want to encourage you to focus on what you can do and love yourself enough to allow your worth to be based on something other than your ability to see or produce or DO! I believe that God has a purpose for you, otherwise you wouldn’t be here, even with less than perfect vision. So your job is to recognized it and fulfill it.
Hope this doesn’t sound preachy, I just want you to know that you are not alone and that there is hope in the midst of the heavy losses.
Praying for you.
From Cliff M.:
Amy,
The distress you are feeling is not abnormal.
The nature of Stargardt’s is that it will eventually destroy central vision. Most folks I’ve talked to with advanced cases tell me that it tends to go in pieces, much like removing pieces at random from a jigsaw puzzle, in the central vision area. These same people have gone on to be very successful in family, jobs, and life in general.
Change is often frightening. And being brave about facing it doesn’t mean you aren’t scared to death at the same time. You can learn to adjust to this curve in life. Just think of all you’ve adjusted to so far. You became an adult (big adjustment), a wife (bigger adjustment), a Mom (huge adjustment) and have adapted to each. You were able to adapt because you knew you could be successful, and you’d seen others be successful in doing the same things.
I’m here to tell you that others have been successful at adapting to this (look around on this board), and you will be too. Let go of the anger and frustration, and quit worrying about what you can’t do. Look at what you can do. Are you musically inclined? Your ears will become more attuned because of this. Are you a good listener? You’ll start picking up on things others will miss because they are distracted by what they see.
You already know that when God closes one door, he opens another. Here on this board, much of our frustration is over how much it really stinks being in the hallway! And since I’m here too, I have to tell you I don’t like it either. But one day I sat down and made a list of what things I thought were really important that I wanted to be able to do. I was amazed at how much of the list wasn’t affected even by an extremely bad case of Stargardt’s. I can still be a dad, a husband, a favorite uncle to my nieces and nephews, a friend, a programmer, and a network engineer. I can read, ride a bike (and if I get to where I can’t see, I’ve already got folks who have promised to ride a tandem with me. I can walk, and Tabby even showed me that I can still snow ski (I’m passionate about that one). What do I lose? Well, I’m a pilot, and I’m probably not going to be able to pass a medical check, even with a waiver, for a lot longer. I may lose my driver’s license. Do I lose my independence? No. But I do have to take control of it in different ways.
Learning to deal with Stargardt’s is more a lesson in learning to adapt than anything else. You are grieving a very real loss, and fearing what’s to come. I’m reminded of a line in a movie I saw where a girl was talking to her brother. She was looking at the sky and remarked how in the evening that the first star came out as one little light in the eastern sky. And then another came out, and then another, until a whole universe becomes visible in the night sky, with millions and billions more that you can’t even see. She looked at her brother and said “Wouldn’t it be tragic to throw all of this away, just because you can’t see it all right now?”
While you grieve the loss, it will be hard. But just remember that there is a whole universe to live for after you deal with it. You may not be able to see it all…or even see much of it at all. But it will be there, and it holds many wonderful things for you. It isn’t your fault you have this, so don’t blame yourself.
If your vision has holes in the dark, you have two really good options. Turn on the lights, or close your eyes and go to sleep. It doesn’t make the problem go away, but dwelling on it doesn’t help either.
If you haven’t seen it on this board yet, depression is something that folks with MD have to deal with. Based on much of what you’ve posted lately, I think you are probably struggling with this right now. Different people handle it different ways. No one way is necessarily right or wrong. Some folks adjust by themselves, others need help from a professional counselor. As someone who went to a counselor after fighting the idea for a long time, I can tell you that (1) it was far different from what I expected, and (2) I could have saved myself a lot of emotional pain by going a lot sooner. If you see yourself in this, do yourself a favor and learn from my mistake. Go see the professional sooner. They won’t have the answers, but they will teach you how to ask the right questions (if they are any good, that is). I think I went for 9 sessions total. Some take more, some take less. That was the amount that was right for me. But no one can help anyone who doesn’t want to be helped. You have to decide you want help in order for anyone to be able to help you.
Yes, Amy, you will wake up. And like every other day, what the day will be will be what you choose to make of it. What will you choose?
Messages About Fear
From Mary:
Dear Members,
I just want to share what I am experiencing since my vision has worsened the last year. It is so difficult to go to functions now. I went to a coffee this past Saturday. Since I can no longer see faces, I go by hair. I went up to whom I thought was one of my friends and said, “Jackie, I am so glad to see you.” My daughter immediately said that it was not Jackie, but so-and-so. The bad thing was that so-and-so was 20 years younger than Jackie, and she knew Jackie.
Then someone came in whom I thought was my neighbor, and I said, “Oh, Chris, we could have come together.” It turned out she was the grandmother of one of my daughter’s friends whom I had known all of my life. I do this all of the time. I don’t know whether to keep going out or not. It is most embarrassing, and even though everyone is nice, it seems as if I keep apologizing and apologizing. I am getting quite sick of it.
I stood and talked to someone whom I thought used to work in my husband’s office and asked her about her children, etc. We carried on a lively conversationm and I did not know at all whom I was talking to. It turned out I had the right person. I don’t want to become a recluse, but I am tired of making these mistakes and apologizing, no matter how understanding people are.
Thanks for letting me share.
From Dan:
Dear Mary,
If these people know you, then they should also know that you have a vision problem, in which case they should be doing their part to help you avoid these mistakes.
To approach you without immediately telling you who they are is no different than calling you on the phone and not first introducing themselves. Once they know of your impairment, this becomes their obligation. As such, you have every right to smile and say, “I’m sorry, but you have to tell me your name, you know.”
The faux pax is theirs, not yours. And this is only one of the “Ten Basic Courtesies For The Centrally Blind” that we would like for society to learn and follow.
You are too much of a gift to the world, Mary. Please do not stop going out and meeting people. It would be their loss.
From Dave:
I have had the same problem. I introduce myself to people I already know, because I don’t recognize them. I moved into a new neighborhood two years ago and made sure when picking up the mail to use my white cane. I still find that most people do not introduce themselves until they are asked. People forget, because our problem is not visible. I can walk by someone’s house, and, unless they say something, I don’t even know they are there. My friends know of my vision loss. It’s getting to know new people that I find to be an impediment.
From Sharon N:
Dear Dan,
I do not think what I have written is in any way inspirational. However it is something I wrote when I thought for certain I would be blind within a very short time. Perhaps it is useful to those who need to know that their reaction to fear is understood.
Fear, by Sharon Noseworthy.
From Sharon:
This is to Nan, Amy, Cassie and whoever else struggles with depression, anxiety and fear.
I have lived with this particular loss for over 30 years. I can remember, like yesterday the fear and shock. I wanted more than anything to make it not so. In fact I spent a significant part of my life trying to hide the truth, and settled for a lesser self. That lesser self allowed others to believe that I was weird, spacey, rude, and lazy. All this to avoid the truth of low vision. None of us want this to be so. We would do just about anything to make it go away. But the reality is that we have no control over it. Loss is part of life but we as human beings spend most of our lives trying to avoid it!
Friends, we can not avoid this, and I believe that in a very real way we are blessed because of that fact. We are depressed and panicked, because we can not rely totally on ourselves. The beauty of our surroundings begin to fade and eventually disappear. We are stripped of the “DO” part of our identity and forced to see, maybe for the first time, what we are really made of. For most of us, that is frightening! I totally feel the sadness and fear that walk along side of us every day. I just want to remind us all that it is courage and compassion that bind people together. It is love and acceptance that we will remember. Be gentle with yourselves, and let the honest empathy, without apology, that flows from this group of people be like salve to your hearts, and watch how your world begins to brighten.
Here is a re-post of some thoughts I had a while back and the ensuing poem:
When I consider my vision journey, I miss the stars and the smiles of those I love. What would I change if I could? I would, of course, change the connection void, but not the depth that has been gained. It is so easy to wonder if we could have had the same growth without the loss. Of course, we will never know for sure, but I like to think that the blessings are of a deeper kind and have a truer worth. Just some thoughts for the night:
For every star left dim
a universe of courage has been lit.
For every knowing glance that’s missed
a heart of insight enjoyed.
Each temptation of independence thwarted
a freedom given, uncorrupted.
And for every tear that’s shed
a well of compassion filled.
The isolation of faceless crowds
calls the deep ache of unseen smiles.
Yet the outreached hand of kindness
breaks the silence with laughter’s grin.
A thorn, to some it’s called,
a true and worthy title.
But those who overcome the wound
marvel in the flower’s glory.
From Carolyn:
Hi Maxine,
A lot of people on this list have had their eye problems for awhile now. Maxine, we are new to this. It takes time to get where they are. I think that it is natural to freak when something else happens to our eyes. I know that I will, and I am not going to kick myself over it. We can only be who we are. We have to find our own strength. I find mine with the help of God and the good people on this list. They can give us advice, because they have been where we are now, and they know how we feel. They did not get where they are without going through a lot of hard times.
I really feel for you, and I hate that this is happening to you and me and all of the others. We will get through it, though, one problem at a time.
Messages About Anxiety & Depression
From Sharon:
Dear Eric,
I understand very well what you are describing. I wouldn’t say that my anxiety is severe, but I have come up with clever plans to avoid the situations you describe. For instance, I carry cash, so as not to have to sign credit card slips. I avoid long meaningful conversations with people due to my discomfort with knowing that I am not looking directly at them (eye contact is a quality I find important in an individual. Ironic isn’t it?). I do dread having people come in to do work at the house or for instance, I am expecting the Fed Ex guy to come in a few days, which will require a signature. Once again, I will have to have a stranger show me where to sign after an explanation of how I can’t see where to sign…Ugh! It is tiring and makes me feel inadequate. I think being a man would make it more difficult. We have a pride that says we want to fit in, not be different. Dogonnit, this MD keeps reminding us that we aren’t the same as others. I watch with covetous in my heart (God forgive me) when someone casually signs a form or carries a long in depth conversation chucked with eye contact, facial expressions, maybe even a wink. How about when you ask someone for directions and they point several different directions saying “See that such and such?…Go that way”.
So it is no wonder you might be a bit anxious to repeat this ritual several times a day. The key, I think, is the self-talk. I try to remind myself over and over again that I can’t see well. There is no shame in that. It many times falls on deaf ears in this feeble mind of mine. Today, I had an appointment with a neurologist, and I called ahead to have them send me the forms ahead of time to fill out and sign. But wouldn’t you know it, there was a sign up sheet on the desk.
Dan wrote another lister some facts about depression and MD, which I will share with you:
“It is natural to feel depression as your sight diminishes, because approximately 80% of our sensory input comes through our vision. This is a large loss, but we can regain a good percentage of it through other senses (especially hearing and touch), which are fully capable of helping us “see,” but which have simply deferred to the easiest path.
“Loss of central vision is a nuisance, but you will find that your life can be full and independent without it. This email message looks for the easiest way to your machine, but–if it runs into a barrier–it searches for detours through countless connections until it finds the path. And it doesn’t give up until all possibilities are exhausted. We can do the same if we want our lives to remain productive, and I hope you will also take that positive approach.”
So to have some depression occasionally is normal. Yesterday I got in a place in the mirror where I could see my eye clearly. It was amazing how much of a sense of relief came over me. I think it is that brain thing that Dan was talking about.
My advice to you, myself, and anyone else who wants it: do what you can to minimize the anxious moments, and change the self-talk when you can’t. Most of the time you will never see that person again, so it doesn’t matter what they think or how they look at you. The silver lining to my disability is I can no longer see the looks. Ha.
I hope this helps.
From Dan:
Dear Ann,
You wrote, “I seem to be worrying about everything these days. I wonder if I’m going through some kind of delayed shock or something. I can’t seem to stop crying…day after day…and I seem to cry for no reason at all.”
Unfortunately, depression is part and parcel with this disease. You are experiencing a loss of something valuable, and feelings of loss can be overwhelming for the strongest of us.
What you are feeling is natural, but if your bouts of depression are growing more prolonged and difficult to shake off, you need to find someone with whom you can talk it through. This is not something you can do alone.
If you haven’t already done so, please read Dr. Lylas Mogk’s article on our web site titled “Depression and Macular Degeneration.” This will confirm what I have said, and if you recognize yourself in Dr. Mogk’s description, I hope you will take steps to find support. The people here on MDList are wonderful at that kind of thing, but sometimes what a person needs is face-to-face human contact with someone who understands.
A professional counselor will be able to help, either through behavioral therapy, medication, a combination of both, or simply by acting as a sounding board. Of course, family members and close friends can work wonders, too.
You might also consider that the holidays are approaching, and that can be a source of depression for many people. It sounds strange, but it’s true.
Don’t let this thing beat you, Ann. Tenacity, acceptance, support, and knowledge (T.A.S.K.) are the elements of success in living with MD, and I have seen all of those things in your letters. Just don’t try to live with it alone. There are many people who want to help, so take advantage of those hands that are ready to reach out to you. Our mailboxes are ready for anything you have to say.
From Ollie:
Hi Everyone,
About morning depression, or anytime depression. The best part is you know why you are depressed. It is because of you eye conditions. I have been there, and I know all about it, but I do not permit it to make a return visit.
There is no one on a picnic with MD. You want to cry, go ahead, It is O.K. THEN get out of that bed and get on with the day. YOU do NOT need a stinkin’ pill to get you through. Once you start them, you will find you might get relief from a pill, BUT down the road you will find you will have two monkeys on your back. Sooooo you will find you have two things to get rid of, and that is not easy. I have been there, also. For those who do not know, I am 74 years young.
The depression pills will not help your EYES, Darlin’. What did I do? Done away with the pills and made plans for every tomorrow for weeks ahead, and it worked fine. AND I can no longer drive. I just tell Hubby he is going to drive Miss Daisey so I can get out. If it is not possible to go out, due to Hubby having some thing to do, I put on music, grab the feather duster, and see if I can still dance. I got my self a karaoke machine and I sing my heart out. Sounds horrible, but I love it.
My point is get OUT of that bed and lean on your self and not pills. You can do it.
Gonna hush up now, and wish all you depressed ones lots of luck. And remember, I have been there.
From Cathie:
Hi Melanie,
My vision changed at age 10 (42 years ago). In my teens I was diagnosed with Stargardt’s. I’ve never driven a car: will not with a license. But I ride a bike (tandem now), ski, live in one of the top resorts in North America, run a family business, have two girls ages 27 and 17, and am still laughing.
Have been married twice. The second one was a keeper for the past twenty years. I attended university when I was 27, single parent when my oldest was two, and graduated four years later with a B.ED.
I don’t want to imply that there’s nothing to it. Life sure can be difficult. But one has to get out there and be a part of what’s going on. Grab hold and go for it! I prefer to view how things can be done rather than review what cannot be done. It’s a matter of attitude, and there is a path through the grieving process.
I do suggest that she open her eyes and marvel at what she can see: in joy, not with sorrow. There is time for sadness. It’s the perceived loss of independence that threatens. But now is the time to get educated for employment to be self sufficient and learn about the eye disease. Knowledge about Stargardt’s will arm her for a more successful and happy future. Computer literacy is crucial, in my opinion. I started with large print, but now I have one that talks. What I could have done in school with one of these! Hope she can join the list or at least read up on Stargardt’s. There is a lot of info, and it helps to know you’re not alone.
Wish you success.
From Carol:
It’s a beautiful autumn day and I can’t see the leaves.
Ohhhhh, but I can feel the sun on my face.
And a warm wind ruffles my hair,
rustles the leaves.
What is that smell that simply SHOUTS, “Fall!”
reminds me of hay that has been in the sun for days
or recently pitched into the horse’s winter stall?
Children laugh in the park.
A little girl next door sings to her dolls.
Can you hear them?
The mug in my hand gives off an aroma
as good as the coffee tastes.
All these sounds, these smells
fill me with joy.
I could cry.
From Gordon:
Hello everyone,
Some one of you wonderful people made a statement very recently, which I am sorry I can not recall, however, it made me a much happier and relaxed person. Why? Now after two years of straining every day to see in the distance, I find myself not straining my eyes to see our back yard landscape, patio furniture etc from our den or any part of our home for that manner! I see what ever and if it is fuzzy, so what. I thank God that I can see what I see fuzzy or not. Am I making any sense?
I thank whoever said what this old timer can not recall. It sure helped me. Please all have a beautiful day in our beautiful country and world. Thank you for listening and for those of you that love music, play it often.
From Anonymous:
Just a thought, if we can’t see it quite right, what stops us from experiencing it?
If we can’t see our backyard from afar, then why not go out into our backyard?
If we cannot see our patio furniture from afar, then why not go out and sit in it.
If we cannot see a flower, then why not go out to it and smell it.
If we cannot see the sun, when it is shining, then why not go out and feel the warms rays touch our bodies.
We can still see but in different ways. Our vision may be lost through our eyes, but not through the rest of us and our senses.
From Dan:
Jim, those tears of ours are for the loss we feel, and they are quite natural. It is neither self-pity nor fear, but more likely the realization that we will never regain what we once had. It is the same as grief over the loss of a loved one, our unrecoverable youth, or the loss of our innocent children as they mature into adults.
Such realization is not ever-present in our consciousness, because many other things demand our attention. Times will come, however, when something reminds us of our loss, and we feel it almost as strongly as the first day of our diagnosis. Time has also allowed us to gain the knowledge and experiences necessary to deal with such emotions, so those periods of grief, fortunately, do not last as long as they once did.
Tears are an effective release, and they are also a reminder that we are human. No other species is capable of crying, because we are the only one that understands our vulnerability. It’s a gift, and one which we often don’t even remember we have until something is taken away.
Thank you for your openness, because you have spoken for many here. You do fit in, my friend, and we’re glad to have you with us.
Messages About Denial
From Denise:
I have had Stargardt’s for 11 years now, but I am just now trying not to hang my head in shame of being disabled. My onset was when I was 15 and I went to drivers education classes just to be turned down at the eye test for the actual license, which the eye doc had said I would pass. My vision went from 20/70 to 20/100 in a matter of months and progressed to 20/200 before high school graduation. I was ridiculed when I let people see my disability, so I got into the bad habit of hiding it, i.e. not reading in public, pretending I could see what people were looking at, stopped doing my school work in school, and not asking to be put in front of the chalkboard. Even my high school guidance counselor said I couldn’t do much having my disability. I am trying to break my bad habit of hiding this, so I apologize if I sound like I am complaining. My grades fell, and I never learned to be me with low vision. It is still a work in progress getting out of that frame of mind. I understand not wanting to look like a freak, I still wrestle with that one. But, we have to try to think of ourselves and NOT what other people might think of us. Vision loss is a very frustrating thing to go through. Lean on me WHENEVER you need it. Getting it out of your system can help you start to deal with this. It seems that some people out there without this problem think that if you aren’t completely blind, you should have no problem. I hope that this whole experience is making me a stronger person.
From Tom:
The blurred-out faces are difficult to look at, but I find it uncomfortable for me to look at someone off-center. Instead I just look directly at their face and pretend I can see them. I’m pretty much living a lie. I think one other reason I don’t want to look at people off-center is because I don’t want them to think there is something wrong with me. It’s like admitting I have a handicap and I’m not ready to do that just yet. Even in my classes, when the professor has the class sit there and read a certain section in the text, I pop open my text and pretend to be reading, like everyone else. Of course I’m probably on the wrong page, but it’s fun to do. Am I the only one who has done this sort of thing? Or is everyone on this list “out of the closet” so to speak? I’m interested in hearing what everyone has to say.
From Dr. Jen:
Hi Tom,
I am a huge advocate of people standing up and educating those around them about their vision, but my husband also chooses not to do this. Not a soul at work knows he has a vision problem, and he has come up with a million ways to hide it. It frustrates me no end.
How can any one understand low vision if no one explains it to them? People imagine vision loss as the blind beggar on the street, how will they ever learn otherwise unless they know someone with a vision impairment who discusses it with them? How can you ever network with others with vision loss if both you and they are hiding it…likely you are crossing paths with others just like you every day and just don’t know it.
Vision loss is the invisible change. No one can tell that anything has happened to you unless you tell them. Just think of the number of misunderstandings that could be avoided.
By assuming that those around you cannot possibly understand you or your vision, you make the same mistake as doctors who assume you cannot understand what is going on with your eyes, so they fail to give sufficient information to you.
From Sharon:
Dear Tom,
You describe my first 25 years with low vision. I began this journey at age 15. I experienced the pain of others looking over their shoulders and the strange looks I got once they knew why. It didn’t take long to learn to do what you described: deny myself the connection so that I could appear “normal.” I also opened the books in college and in other places–yes–to the wrong page. Imagine how much more foolish I looked to those who noticed,
I realized after many, many years of faking it, that I was becoming just that: a fake. And for what? Did it bring me closer to others? No! Did it allow me to feel better about myself? No! Did I gain anything good? Again, No! Instead I became nervous about facing situations that I couldn’t have planned out exactly. For example, I would call a restaurant ahead of time to find out what was on the menu, so as to order something when out on a date. Little did I know that I was missing the winks from my date or the other visual cues that left them puzzled and often leery.
Lack of eye contact, as mentioned by Linda, is such a difficult blow. This society is based on eye contact and what that says about a person. I have been thought of as shifty or untrustworthy, because I don’t make that eye contact. Even when I try to appear to look at their eyes I am not truly doing so.
I don’t want to appear to criticize you or others. Please don’t misunderstand. I have been where you are, and am slowly crawling out of the closet, wounded and lonely! I have found that the initial discomfort is easier than the self denial.
Most people make judgments either way. It depends on whether it is better to be thought of as visually impaired or weird. Most of those who know me would say I am both. Ha! By the way, I am the only one in worship team at my church that doesn’t hold a book or paper. It is my personal statement to speak the truth about me. I do not condemn doing it the other way. I just warn you that it is you that is being hurt in the long run. It is said that it is not what we do that makes us who we are, but it is who we are that makes us do what we do.
From Sharon:
My Dear Tom,
I DO know your dilemma! I really do! The answer is both yes and no. There is always discomfort, sometimes even terror in the beginning, even after 29 years. That is because I still want to fit in and be like everyone else. That is because others sometimes are threatened by my disability. The only true freedom I have found is to suffer through the discomfort initially, and then enjoy the hours of freedom from fear of being found out or from pretense. I believe, though, that the work must begin with yourself.
You need to struggle down the path of acceptance. I hated that word! I felt that it meant that I would come to like it–NEVER! I changed the goal to coping and that helped slightly. Being young and in collage I was still trying to get a handle on who I was. This unpleasant secret wasn’t in keeping with the person I wanted to be. This is why coming to a place of acceptance is crucial!
I ache at the thought of you or anyone else taking as long as I did to get there. Please let us, as a group and/or me as an individual, help you through this! I am so willing to talk and listen privately or publicly with you as you stumble down this road. You are absolutely normal for feeling and reacting the way you are! Don’t add shame upon shame. You need to remind yourself, though, that you are just like anyone else inside. This is not just a platitude. It is the truth. Remember my theory that we are probably only as accepted as we are willing to accept ourselves. We can not be responsible for everything others will think about us. We can only be responsible to be the best “us” that we can be.
I wrote a poem that I am going to share with you. It is titled “A Secret Place,” and I wrote it after meeting a lady at the park while I was playing with my son. I didn’t tell her right away, and it became increasingly evident that this wasn’t going to be a one-time meeting. I agonized over how to tell her now after I avoided it originally, I worried about running into her and not recognizing her, and what she would think. It all worked out, I told her, and we are friends now.
Please write to me anytime you want to vent or scream or whatever. I am not judging you. I did the same thing for two decades!
From Donna:
I laughed and laughed, because people think I am rude or not paying attention. I have a friend that told me some time later that she had told another person not to trust me, because I wouldn’t make eye contact! It took me many years to just let it all hang out and tell people when I first meet them I am blind. If I don’t, my friends make sure everyone knows I am as blind as a bat. I guess at my age I don’t really give a rat’s tail. Let the whole world know and they’ll feel better, believe me!
From Sharon:
Hi Sharon,
I know what you mean about the changing nature of this stuff and the confusion that causes for others. The truth is, I have become more interested in what is best for me than them. I say this because, as you very clearly pointed out, this is not something you can explain easily, if at all!
I have a rule of thumb these days. If I am going to be tempted to pretend or deny myself the fullness of the situation, then I will tell those involved. If these aren’t an issue, then who cares! I only care what others think if it leaves me feeling fake or misunderstood. An example: I was at a conference a few weeks ago. We came in late and sat at a round table with four other people. We were to be underlining things in the workbook and taking notes. I was not. We were also to introduce ourselves and say some personal things to one another. I, at that time, explained that I had a visual disability and may not appear to be looking at them. I also told them this was the reason that I wasn’t taking notes or even opening the book. My brother (who also has this problem) was in a similar situation and did not give this information. It was communicated to the Pastor of the church (which his conference was at) that this individual would not be a good candidate for leadership because he did not make eye contact and was generally uninterested, as he didn’t even open the book! I hope this is making sense.
We have to protect our dignity, and that can only truly happen when we are honest about who we are. Going around introducing yourself as Sharon, the visually impaired person, is not the truth either. We need to use tact and care, but if we are going to be left with the isolation of pretense so as not to face the discomfort of exposure, then we are in essence agreeing with the false stigma that there is shame and weakness in our lack of vision.
Forgive me if this sounds dramatic, but after a lifetime of the pounding I have taken around these decisions, I can’t afford to spend time creating a false image. I have had to, and still have to come to some sort of peace with my reality and make visible the invisible.
You are correct, no matter what we do or say people are going to talk and judge. I try hard not to feel any responsibility to correct that. Instead I try to let the thoughts stop at the truth. There is nothing to hide, and there is no shame. I am valuable–not despite my disability– just valuable!
It’s not easy, and I haven’t yet arrived. All we can do is encourage each other, laugh at ourselves whenever possible, and try to cope with integrity.
From Irving:
I am also a great fan of Winnie, the Pooh. Don’t you think he would say, “Oh, bother. I can’t see so well today. I guess I’ll go over and talk to Piglet. I can’t go to Eeyore. He would just think it was something awful. Tigger is too bouncy for me right now. He would jump out of nowhere and scare. Yes, Piglet is the person to talk to.”
On the way to Piglet’s house Pooh would have to stop and get something to eat from one of his honey jars, get it stuck on his head, and first thing you knew this would be the reason he could not see.
Messages About Courage
From Tabby:
I used to think courage was synonymous with stoicism. For me, bravery was fighting — sometimes angrily — through loss and grief in a desperate attempt to escape suffering. It was building walls against pain and while they shielded me from anguish they also hid me from everything and everyone else.
Two and a half years after being diagnosed with Stargardt’s, I have finally redefined “courage.” Thursday night as I played soccer in the rain, I felt lighter than I have since my last year of high school. I felt free. Courage isn’t about hiding pain, but about hurting. It’s about allowing yourself to feel the indignation, humiliation, and anger of losing a part of you. It’s about being afraid and being vulnerable – because the only way to heal is to hurt.
And after going through all of that loss and all of that pain, courage is about starting everything over again. It’s about finding that same optimism, that same faith in life that you had lost, and once again embracing it.
As Anne Lindbergh said, “To grow, to be reborn, one must remain vulnerable – open to love [and life] but also hideously open to the possibility of more suffering.”
Courage is daring to be happy again.
Thank you Dan, Donna, Sharon, Tom, and all of you regulars on the Mdlist for providing a safe and productive place for people to hurt – to be courageous.
To everyone who is new, I beseech you – let yourself feel. As Shakespeare urges in Macbeth, “Give sorrow words: the grief that does not speak/Whispers the o’er-fraught heart and bids it break.”
From Sharon:
The amazing strength found in each one of us as our limits have been tested must be shared to encourage those who are still paralyzed by the news. I have found myself in situations that made me reach down to the depths of my courage…to which I am still not able to share…but I have emerged much stronger. Maggie and others, please refuse to be robbed by fear. You will make it no matter what happens.
When I was 19, I had a rehab counselor connect me with a woman who was completely blind. This woman was 60, and she was amazing. She lived alone. Her husband had died, and her daughter lived several hours away. She taught me how to crochet, she baked cakes from scratch, she spoke to the city counsel to improve the bus system, and she volunteered her time at the senior center. I had the greatest admiration for her, even though at the time I had a fear and embarrassment of those who were blind (she being the exception). I will never forget her and what she taught me.
Control over our lives is truly an illusion. Those who have all of their senses and good physical health are lulled into believing that they are in control. If that were so, then we wouldn’t be in this predicament, would we? Some are mature enough to figure out the truth by virtue of old age. Some never figure it out. We who have had our sight damaged know the truth. It isn’t our bodies that make us us. It is what is inside, what we are made of. No amount of vision loss can take that away. Diminished sight doesn’t mean diminished self!
Fight the good fight my friends,
From Sharon:
I am back from camp and want to share some of my experiences. I took my 6-year-old for the first three days, and then my husband joined us for the remaining days. I have never been to this camp and had some reservations about my ability to navigate. Of course, I had many good friends there with me, but all but one had not really spent time with me outside of my familiar surroundings (in which I am very functional). Everyone knows that I am visually impaired.
The lodge was the worst possible combination of light and dark inside, surrounded by large windows, which let the outside light in. The cabins and bathhouse were up some uneven log stairs. I did pretty well the first day and even surprised myself at night (due to a full moon).
The next day was another story. The lodge had stairs, and I could not see them for the life of me. The light from the window blinded me. Later that night, I decided to take a shower and left the cabin and got sort of lost. It was drizzling, and the full moon was gone under the clouds. I sat on the stairs of the bath house, unable to find the shower or go back to the lodge to get help. I felt very foolish and childlike. I did alot of praying and finally found the stairs to the lodge. After that, I was a bit nervous and tried to have someone with me most of the time, especially at night. I needed help with the food line, as well, and needed to do alot of self talk!
By the end of the week, I had regained my sense of humor and laughed with the kids, as I bumped into a tree with my cap bill (pushing it down on my head), apologized, and looked up to discover that the tree was the recipient! I was half way up the stairs to the cabins when another camper said, “Can you go up those stairs by yourself?” I said “Oh no! I forgot! Could someone take me back downstairs so I can get help back up them?”! We all laughed, and I trotted up the rest of the stairs. At the end of the week, I asked, publicly, that all of the kids (whom I became very close with) if they would come up to me at church and say hi, since I can’t always see them. Today, most of the girls came and gave me a hug!
I struggled, and still do struggle, with the need for help with childlike things: putting toppings on food, pouring drinks, choosing condiments, etc.), and even considered not going to camp because of my disability. But I did go and had a fabulous week with new friendships. Hopefully, I helped some others to better understand the needs of one with vision problems.
There will always be those who are afraid of us: those that don’t understand and don’t want to. But I would have missed a great opportunity if I had not gone. I don’t know if I could do such things as well if I didn’t know that I had you all here with me. For that I thank you!
From Lori:
Thank you all for your nice letters about my little sons. I have been sharing with my sons some of what you say. I even told my older son that he could be an inspiration to some of you here who have much better vision then he does, as you see how he adapts and overcomes at 20/400. He even still plays football in PE, and guess what? One day, he made all the points his team had for his team. He’s always been the fastest runner in his grade. I’m not sure for middle school this year. But his vision teacher and teachers have watched him in amazement, and the determination that this little 12-year-old has.
OK, I’m starting to cry, so time to go. Love and prayers for all of you. My heart goes out to each and every one of you.
From Sharon:
(After speaking about her blindness to her church congregation.)
Hello everyone! I can not tell you how much it helped to know that you all were praying for me…all over the world! It worked! I got up there and, at first, forgot my name! I stuttered a bit, said I was scared, and then went on. It went very well. I told about my diagnosis as being similar to MD. I explained what that was and that it affected our central vision. I explained that we need that vision for reading, driving, and recognizing faces. I threw in something about wrinkles too.
I then said, “If I don’t see you, your handshake or don’t look directly at you, if you drop something or need help with a visual task and I don’t jump in to help, or if you point one direction and say to go over there, and I look the opposite direction and say where, it’s not because I am stupid, lazy, or rude. It is because I am legally blind.
I used Cathie’s statement about how secrets bind, and, while this isn’t necessarily a secret, it is an invisible disability, making it tricky to know when and how to announce it’s presence. I shared Tabby’s analogy about living in the halfway house between sight and blindness, and that sometimes we get cabin fever. I said that I had begun to get a bad case of cabin fever and needed to come out. I told them how they could help me to do that. I asked them to approach me, take my hand, and tell me who they are every time. I let them know that I eventually would know them well enough that they wouldn’t need to do that, but, until then, I would be so grateful if they would.
I suggested Cathie’s idea about the name tag with something on it to remind others. I told them my idea about the cute little eyeball with a line through it (this got a good laugh), and asked them for any ideas that would help them remember. I then asked them to greet one another, and then told them to do it with their eyes closed. “Just kidding,” I said.
The response was wonderful. The Pastor had printed Dan’s “10 Rules of Blind Etiquette” on the cover of the bulletin and I can’t tell you how many people greeted me. One man said to another friend of mine that he was going to go talk to that blind lady and tell her that he was the handsomest man in the church :). Almost all of them said that they had a relative or knew of someone who was legally blind or had MD. Unfortunately, I was not thinking ahead, as I had forgotten to bring the MD cards with me. I am calling the Pastor to print the web address on the bulletin next week and I have several coming to get a card from me next Sunday. I couldn’t have asked for a better response, and you were all right! I feel so much better!
If any of you think that you have no real purpose here, let me change your mind. I do not think I could have done this without your support and prayers. It is knowing that I am not alone that has given me the freedom to share myself this way. Hopefully it will help a few others to find their way here to receive more support than they have now. Not to mention those who were made to feel more comfortable with blindness!
I love you guys, and God Bless all of you!
From Sharon N:
Good Morning. I appreciated the exchange of thoughts with regard to acceptance of visual difficulties. I especially appreciated the words of Cindy and Sharon C with regard to being open and straightforward about vision impairment.
The following statement by Sharon C had a great impact on me. “We need to use tact and care, but if we are going to be left with the isolation of pretense so as not to face the discomfort of exposure, then we are, in essence, agreeing with the false stigma that there is shame and weakness in our lack of vision.”
I recognize that I still view this as a weakness. I wonder why, as I have learned that most people with vision impairment are stronger than those who have never faced adversity. We meet so many people on this list who have found ways to overcome so many challenges. Why then do we, who are new to vision difficulties, see ourselves as less than we were, prior to the eye condition? I will spend some time today contemplating on this matter.
You will have to excuse any errors in text, as this morning my eyes are so poor I do not clearly see the screen. Frustrating, as I had been doing so well. I think this is as much an emotional challenge as it is a physical challenge. No, I do believe the emotional challenge is greater.
We do, however, have choices. We can choose to let this condition get us down and feel like victims, or we can choose to feel empowered and get on with providing the best quality of life possible for ourselves.
I am going to the gym for strength training. I am frustrated because I have a problem setting the equipment and can’t read the computer screens on some of the machines. I don’t discuss this with my trainer. I just wait for him to set everything. He was telling me he has a client who is totally blind. She has been blind since childhood. If you could see this building, you would be impressed that she even finds her way into the bowels of the University. She not only finds her way, she sets her own machines and no longer needs assistance to find her way around the busy room full of various moving equipment. The trainer was only making conversation with me, but I felt like a whiner. On Friday, I will set my own weights, and I will use my watch or whatever means necessary to note status and progress.
Perhaps I will even tell my creative writing group I actually can’t see any of their beautiful poetry. I do enjoy listening. Telling them by writing about it seems like a good idea. This will be difficult, because people’s reactions do change. I don’t need to be singled out.
Have a good day everyone.
From Cliff:
Lori,
Sorry for not responding sooner. I’m a programmer, and I’m on a deadline right now, so I’m kind of tight on time for the next few days. I saw the pain and anguish in one of your messages and stopped what I was doing to respond. That is one positive thing this disease has taught me. I have learned to remeasure what is really important in life.
I was diagnosed with Stargardt’s disease at age 39. I am now 40, with a birthday coming in a few weeks. I can tell you from experience that this is probably much harder on you than it is on your children. One very positive thing about Stargardt’s is that there is no physical pain involved. There is most definately a debilitating side of it, and I would never try and kid you about it.
A couple of thoughts here. First of all, recognize what’s going on in your own head. You are grieving for the losses your children have and will undergo. This is normal. However, recognize that this is NOT your fault. You could not have prevented this by “being a better mother”. Your husband could not have prevented this by “being a better father”. While this disease will certainly change your children’s lives (at least for now, but I’ll come back to that in a moment), it does not mean that they cannot live very full and healthy lives. I know my wife and my mother were both devistated by the news (once they understood what it meant) that I had this disease. Both have come to realize that I have no intention of letting the disease take anything important from me. What’s important? Well, I can support myself, I can be a good husband and father, I can participate in my community, and I continue to be active and have fun with my family. When I started looking at what I might have to give up, I could only come up with a list with two items on it. Can you believe it? Just two! The first thing I will likely have to give up is flying. I’m an instrument rated pilot (former military). Right now, the FAA is letting me continue, but I’m having to jump through a lot of hoops to do so. I’m sure I’ll call it quits before they make me. I fly with my family, and I have no intention of endangering my loved ones. The second thing I’d have to give up is driving. My wife is probably a better driver anyway (certainly fewer tickets/accidents over the years).
When I was diagnosed with this disease, it was really hard. I didn’t know anyone else who had it; I’d never even heard of it! The thing that probably helped me the most was a 45 minute conversation with the Executive Director of Macular Degeneration International (www.maculardegeneration.org). When I talked with Tom, I found out he was diagnosed with Stargardt’s at 27. Now many years later, he has no central vision left. But he still reads, rides a bicycle, works, helps others, has a family. I came away knowing that this guy really isn’t missing out much in life. Sure he’d like to be able to see better, but his life is rich and full. I decided mine would be too.
Most of us, once diagnosed, are very frustrated because there is literally nothing we can do. I’m not a medical researcher, and this one is in the hands of talented professionals who are just that. Nothing I can do can hurry it up. I started watching several different, but related, scientific disciplines. I monitor microbiology, nanotechnology, genetics, gene therapy, stem cell research, and a few other topics here and there. The conclusion I’ve come to is this. It is my opinon that within 5 years, Stargardt’s will be not only treatable (as far as halting the damage), but also reversable (as far as restoring the lost vision).
So, I’ll offer this. Cry if you need to, but remember that a day will come when you will take your son to the doctor, and they will do a treatment on his eyes that will probably last about 45 minutes. You’ll take him home, and over the next few days, he’ll start seeing better. And one day, he will walk with you and tell you that he’d forgotten how pretty all the leaves were on the trees, and then he will look at you and tell you he thinks you are pretty, too. THAT is what you are looking forward to, and THAT DAY IS COMING! Plan for the party now Lori, because you are going to want to scream, shout, and holler with everyone you know that your sons are CURED!
I wish you the best. We’re here if you need anything.
From Tabby:
I stood among the rows of stars and crosses, an American among 10,000 countrymen but not really home. As the wind beat the waves, and the waves crashed to the shore, I attempted to jump generational gaps to imagine this beach as it stood over fifty years ago.
This year I have walked through the slums of a 3rd world country in Africa, I have marveled at the brilliance of Michelangelo’s Sistine Chapel, and I have stood in the middle of the American Cemetery at Omaha Beach.
I cannot count the lessons I have learned or the invaluable experiences I have had.
But the sad truth is that with time, the outrage dissipates, the colors fade, and the waves stop echoing. I am not saying that the lessons I have learned will be forgotten. They will not. But they will be pushed to the side because life will go on.
That is what is so special to me about the lessons we take from MD. Being visually impaired, we have found that our problem cannot be put to the side, but must be carried with us.
It exists in the very window to our world, a constant and unchangeable testament to the power of determination and perseverance, the importance of charity and compassion, and the necessity of beauty and appreciation.
Though at times our journey may be harder, in the end we can justify our efforts: we realize that instead of a lesson in humanity, we have a link to it.
From Anne:
To all of our new folks, welcome. This group offers wonderful support, and it is made up of people just like you all over this globe. You will find people who care, who see as you see, who feel as you feel. All of us, though different in personality, at different stages of vision loss, and at many different ages, blend together to form a truly unique family.
Imagine this. You are alone in a small boat on a lake. It’s a perfectly beautiful day, calm, the water is sparkling, and you are taking it all in. Out of nowhere, clouds come in heavy and dark. You hurry toward shore, but your boat begins to sink. You slip into the deep, dark, murky water. You panic, for you can’t swim. You thrash about and cry for help.
You are about to give up when you find that you are being raised from the water and carried to shore. There, beneath you, is a net; but it is not made of rope. It is made of people, and you are being warmed and dried, comforted, and held firm.
This net covers the whole globe. It supports you until you are strong and confident. It is mostly invisible beneath the water’s surface, yet it is there to rise up when you need it. All you need to do is call out. Gently and quietly, strong and firm, beneath you lies this wonderful net of support. You are not alone.
Messages About Anger
From Sharon:
I was in Georgia for a few weeks and had a fabulous time! I found that I struggled with my vision more though. Two things happened that made it hard to cope. First, I found myself running into things more. I clipped things or cut to close while turning corners etc. So I have a few colorful reminders of my trip on my body.
Which brings me to my next difficulty. I found myself lamenting about how little I could see, like the color of the sky (except for the spots that haven’t lost color vision yet), or the stingrays that were swimming ahead of us while walking the sand bars in the ocean during low tide. I must say that God was merciful to me and allowed the sweet little critters to swim around my ankles and between my legs later that morning! Yet, I couldn’t see all of the little and big things that my family were enjoying! I found myself struggling with anger and jealousy. Also I was overwhelmed with fear at times that what I could see now would disappear, and would it be worth my family’s time to take me to things like the ocean or the top of a light house that I couldn’t see? Ugh! What a battle it was. I worked on concentrating on the things I could do and tried to not think of the things I could not. It is so difficult to have once seen and to have it disappear! The beauty of this world is so satisfying to the soul and I was struggling alone inside with its loss. I do believe that I won the battle of the mind for the most part but boy it wasn’t easy!
I know many of you know what I mean, and for that I am both sad and grateful. Sad that you have the same battle, and grateful that I am not alone in its fight. I tell myself often that the alternative to thinking positively is very depressing, but this time I struggled more with what I could have and once did have, and I swung right back into the anger stage! It just isn’t fair, and that isn’t feeling sorry for myself. It’s just true. So I raise my glass of lemonade to you all and toast to more gratefulness, especially for knowing all of you!
From Cathie:
It’s good to vent, even good to be sad or angry. After that, we can move on with a sense of well being. I have not disappeared. Just listening in the background, as many do. I have to regroup. Not as much sad as feeling like a sore loser. I’m not fussy about being a sourpuss. I am still a bit ticked, even cynical, and right now I have to dig for my positive outlook. I know it’s there somewhere. This group helps me get over myself. Pity is not something I’ve heard in this group, so I’m sure that both Sharon & I will be bright & cheery again soon.
How does one happily wave goodbye to residual vision? I don’t really know, but often we talk about remaining active and finding different ways to do the things we’ve always done. It can be a challenge when the shutters are drawn. So I ask about the scenery or what is going on. Rob (my husband) is now offering descriptions. He used to tell people that certain holidays weren’t enjoyable for me, because I couldn’t see the scenery or activity. Recently, I told him that I look forward to going to Europe, that I might not see it all but a lot can be felt and smelled, and certain atmospheres ooze with images. Right now any holiday would be great!!
Sorry for the length. I think I should do some journal writing – clear my self induced haze. Thank goodness for the computer & speech!
From Sharon N:
I had a few days of e-mail to read. I think it was Sharon who said, “Most people make judgments either way. It depends on whether it is better to be thought of as visually impaired or weird.”
This is an issue I have been wrestling with. I will defer to your lifetime of living with vision problems. I only have about 20 months experience. I have lived in this city about 14 months, and at first I was direct and told people right up front I had some problems seeing. Do they think I am weird? I am certain they think I am something
I can just hear what they think: “She read that same menu at lunch yesterday. This evening she is acting like she can’t see a thing on it.”
“I saw her with glasses on yesterday, and today she just puts on glasses to read.” (I could tell them that I need magnifiers over my contacts to read but I did that just once.)
“Glasses over glasses? Never heard of such a thing. How come you could drive yesterday but not today?
“You could see the cards fine at Sue’s, and these are the same cards.”
“How come you can see a street sign but don’t know who is in the room this evening?”
Now I hold the book and write on a page and order the special of the day. I ended up eating rabbit the other evening. I couldn’t see the waiter’s face and didn’t hear what he was saying. I definitely believe there is a correlation between seeing the face and hearing the person. What I heard was pate. My husband did not say one word. He hoped I would never find out. I did when I offered some of my delicious pate to a lady who seemed to be looking longingly at my plate. She said, “No thank you,” and stated that she wasn’t as brave as I. I got suspicious. I also ate fish for the entree. In an Italian restaurant, I ate fish, which I don’t really care for.
I bought new glasses, which I got two weeks ago. For a couple of days I read and read and read some more. I worked for hours on the computer and did some needle work. Now I can’t see a thing with them. The low vision specialist has offered to replace them, but I declined. I will just hope these blank-blank eyes settle down. I say that, when my eyes feel better, I will be here waiting for them.
Sorry I did go on. Thanks for listening.
Messages With Humor
From Patty:
Because one eye only has peripheral vision, sometimes I have to close that eye when I’m looking at something close. I guess I just do it without realizing it. Well, the other day I had some dental work done on that side. He said he was giving me plenty of novacain (or whatever they use these days) so I wouldn’t feel a thing. When the dentist was done, still standing over me, and took all the junk out of my mouth, he suddenly had a very startled look on his face and said: “Oh, no! I put your eye to sleep, too!”. I thought I was going to die laughing and, of course, he didn’t know what was so funny until I had regained my composure enough to tell him.
From Irving:
I have frequently referred to Senior Moments and “chemo brain” to explain my lapses in attention, memory, etc. I have seen numerous posts of others on the list making similar explanations. It occurs to me that this only adds a little bit of stress to our already stressed out lives, and makes it that much more difficult for our eyes to maintain their health.
Soooo I have decided to redefine these episodes as being spontaneous creativity. That way I am turning what could be a destructive process into a positive one. For example, yesterday morning I had just showered and shampooed my two hairs. After carefully brushing them into place, I was then ready to shave. I have always used Williams Lectric Shave as a preshave conditioner. Recently, they have changed that to a gel. So I carefully measured out the prescribed amount in my hands and proceeded to briskly rub it into my scalp.
Actually, I like it better as a hair conditioner than as a preshave conditioner. So you see, I was spontaneously creative, and my eyes got a lot of relief from this, where I would otherwise been worrying about where this was all leading.
From Maxine:
The other evening I came in from watering the garden, all wet and ready for a shower. I took off my clothes and placed what I thought was my wet socks on top of my tennis shoes by the backdoor ready for the next day. Since I have had MD, I do not look really close sometimes. I tend to hazard a guess, because I get tired of not seeing. Anyway, I was very surprised when I got up the next morning and found my bra carefully put on top of my tennies.
It was certainly a good laugh. I am glad there were no early morning visitors to my house!!
From Sharon:
My sister’s little girl tells others that her Mom can’t see very well. This is instead of the term she used in the past: “My Mom is illegally blind!” Of course the laughs have driven her to a simpler description.
From Dan:
It has occured to me that by sitting on your glasses, you might have learned from hindsight. Just a thought that I couldn’t resist passing along.
From John:
There is a clinical term for this condition. It is called rectomyopia.
From John:
Time of year to count our blessings with my top ten list.
Due to low vision:
10. I can no longer look into the morning mirror and declare, “Gawd , you look awful.”
9. When solicitors approach with religious pamphlets in hand I can honestly say, “I cannot read your literature.”
8. I no longer leave the loo seat up for reasons not to be discussed here.
7. I must ride my bike on our main street (no sidewalks), and I am elated at how friendly the motorists are. They are always tooting their horns at me. Some even wave a greeting with one finger.
6. I no longer read newspapers, which has lowered my blood pressure considerably.
5. I have developed a sting, wherein I offer the clerk a $20 bill and say, “This tenner is all I have.” I am happy to report that 7 out of 10 clerks do not take advantage of the situation.
4. I now qualify for a handicapped sticker on my car.
3. I have learned there are some caring, sensitive doctors who sacrifice their precious time to aid us on MDList.
2. I met so many fine people on MDList. I believe we are all cousins, for we share some unique DNA markers.
1. I learned that Capt. Dan runs a tight ship and made my voyage to low vision much more tolerable.
Messages About Acceptance
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.