Sickness Does Not Equal a Deficient Human
It is not secret that I have some major health problems. Anyone who sees me even attempt to walk across a crowed room can tell. Talk to me on a phone for to long and you’ll hear it. It has a tangible affect on most people, especially those you may have called friends.
Long talks turn into short greetings. Good times turn into palatable awkward segments of time. And to some degree respect turns to pity. Some freeze up and won’t even chat through email. Others make attempts that are fleeting and far in-between. Even those close to you stop looking at you and remembering what you can do, they look and see only that you can’t. In talking with some that have similar problems as me, I’ve heard the same stories repeated.
Church going people can sometimes be the worst. Somehow on some level its your fault your sick. You lack faith, you sinned, or some other factor unseen caused your problems. It can leave to a solitary walk. A walk down a path of life that others views are forever altered by what they see and think. There lack of comfort drives them from sanity. They forget your human. Not only that you are human, but that you are exactly the same person you were before you got sick.
I think its one of the most inhumane things to do to someone. I cannot walk far on my feet, my legs falter and tire quickly. I cannot always speak with clarity, my mind lacks memory and focus many days. The pain clouds my thinking and it becomes hard to do even simplest of tasks. Things people take for granted are things I long to be able to do, and are things that require serious consideration before trying.
But in all this, I am still me. Through the pain and discomfort, through the weary legs that can barely take me across the room, my faith is still strong. In the midst of the cloudy thoughts and confusion my love for God still stands as strong as it ever has. And my desire to live life to the fullest of my ability still is strong.
Next time you see someone with an illness or disability, try thinking of them as just human. No more, no less.
Learning what it is to live again.
So having health problems that limit your ability to do everything from walk to read really proposes some interesting quandaries. Learning my limitations has been a painful process of going to far and making note where that is, rinse and repeat. There is also a unique psychological element involved as well.
Having to come to terms with a disability that changes my lifestyle at the age of 34 is difficult. I still feel the rest of my life is before me except now I am not sure what I can do with it. I have the desire to work and be normal as I was once, but I know that cannot come easily if ever. It will take time and the progression of this disease must halt or slow at the very least first.
I left the house the other day to perform some much needed tasks outside that I had put off for months. Bills, replacing things, stuff that people take for granted. The trip was very enlightening because in the end I pushed myself way to far and spent the next 2 days paying for it. Though seeing the light of day for the first time in months, and being outside for the first time in months as well was so nice. The simple joy of feeling sun on your face and breathing fresh air is something many people take for granted.
After this trip I’ve found myself hating being stuck in my home again. Its hard to get out of my sub basement apartment. The stairs are few but they take much out of me. Just to have an apartment with a porch to sit on outside would do so many wonders for me. I long for something as that. To be able to sit outside and just take in the beauty of simply being outside. Simply feeling the sun on your face and the wind flowing through your hair carrying on it the scent of freedom.
One thing I’ve struggled with now is knowing how to think of myself. Am I disabled, am I less then human? Am I allowed to enjoy life or somehow because I have this disease am I supposed to be locked up in my home away from people? I can’t work like I used to pride myself on, supporting my family, paying my debts, not needed others help. This in itself produces a conflict within myself that tells me somehow I’m less then human and must pity myself. Though Who I am hasn’t changed. I am Tim, the Same Tim I’ve been for years, but do others see me as that? Or am I just a disability to them now. Has this disease changed the way people see me? I desire no special concern in this from anyone. I’m the same person but more and more I see pity in the eyes of those who know me. Not that I want it or even deserve it.
Diagnosis – Mitochondrial Myopathy
So after more then just a few doctor visits, a battery of various tests, the doctors came up with a diagnosis of Mitochondrial Myopathy. I’m not entirely sure what it means yet and I will undergo a muscle biopsy to confirm the diagnosis on December 4th. Apparently its progressive, and I can see that in my father who has this as well. He is to the point it has become difficult to walk.
I’m nervous, a bit scared, and unsure what the future holds. It would help if I know more about what this will mean for me but the doctor didn’t want to talk about that till after the results from the muscle biopsy.
My parents will be moving out of Michigan, where I live as well, and be moving to a warmer climate for health reasons (my mother has a number of health problems as well). This is great, I’m very happy for them I know they’ve desired a change for some time and this will increase their quality of life. Yet I find myself having to concentrate on the things that God has taught me over the last year. I find it very hard, it feels like I’m all alone.
My friends haven’t been around much, and the prospect of loosing my family a bit daunting. I can’t get to church as it is too painful and I wouldn’t be able to sit through a whole service anyway. And my family has been my support to a large degree. But I’m optimistic this is a great time trust God and rely on Him. I can see this will grow my relationship with God a great deal. That brings me a degree of Joy. I’m anxious to know what this disease is going to mean for me and how it will affect me long term and how it may progress.
