Shoebox
Meaningful Messages
from the
MD Community
| Shoebox Meaningful Messages from the MD Community |
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 Little by little the Master Can you hear me? Alas, gentle flickers New vision seeps through the mist Oh unobscured view |
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?