Welcome to reality. This is the rest of your life. The doctor isn't going to give you an antibiotic and cure you. There is no magic pill. There is no miracle cure.
Kick, scream, throw things, curse the world...
Now take a deep breath. I said this is the "rest of your life", not the "end of your life." Yes, things have changed. Yes, it sucks. Yes, its unfair. Mourn if you need to.
Then, when you are ready, start living your new life.
If you are here, I am guessing you have reached that point. You are researching. You are looking for support.
Welcome.
Saturday, May 7, 2016
Thursday, May 5, 2016
Wednesday, May 4, 2016
Living with Muscular Dystrophy
When I was born in 1962, neuro-muscular disorders were relatively unknown in the medical world. Jerry Lewis had yet to make Muscular Dystrophy a household name either. It took the entire first year of my life before I could turn or hold my own head up, and walking...my sibling two years younger than me was walking first.
I eventually learned to compensate for most of the weakness and could pass as "normal" unless spotted attempting to get up off a floor or climbing stairs. I was taught early that I could do anything anyone else could, I would just learn to do those things differently.
Life moved along relatively smoothly for a long time. I knew there might come a day when I would find myself resigned to living out the rest of my life in a wheelchair so I lived life to the fullest. I had a bucket list before the phrase came to the public awareness. My list was set by the time I graduated high school and I embarked on a journey of travels and experiences just so I wouldn't miss out by waiting too late.
Four years ago the worst thing that could happen did. I had to give in and accept a wheelchair. I had seen this coming for almost a decade but now the falls were resulting in broken bones. The moment I accepted that chair no amount of assisted-walking around my home or exercise could sustain the little strength I had left.
Today I am completely dependent on this chair and it sucks.
I almost completed my bucket list before I lost my ability to safely maneuver through the world, but getting used to this life is hard. I spend most of my time at home trying to keep busy and feel a sense of accomplishment when all I want to do is go out for a hike.
Our communities are more accessible than they were even twenty years ago but that doesn't mean they are accessible. I can't visit friends in their homes because they have stairs instead of a ramp to enter the home. I can't enter the local banks to do my own banking because they don't have ramps either. My community doesn't have many sidewalks and where they do the walks are crumbling and unsafe to travel over. This leaves me with having to ride in the streets. It's not a problem during the day, although I still get strange looks, but it means I have to plan to be home before it gets dark because cars might not see me.
This is where I am, Often feeling like a prisoner in my own home while seeking a purpose for the rest of my life.
I eventually learned to compensate for most of the weakness and could pass as "normal" unless spotted attempting to get up off a floor or climbing stairs. I was taught early that I could do anything anyone else could, I would just learn to do those things differently.
Life moved along relatively smoothly for a long time. I knew there might come a day when I would find myself resigned to living out the rest of my life in a wheelchair so I lived life to the fullest. I had a bucket list before the phrase came to the public awareness. My list was set by the time I graduated high school and I embarked on a journey of travels and experiences just so I wouldn't miss out by waiting too late.
Four years ago the worst thing that could happen did. I had to give in and accept a wheelchair. I had seen this coming for almost a decade but now the falls were resulting in broken bones. The moment I accepted that chair no amount of assisted-walking around my home or exercise could sustain the little strength I had left.
Today I am completely dependent on this chair and it sucks.
I almost completed my bucket list before I lost my ability to safely maneuver through the world, but getting used to this life is hard. I spend most of my time at home trying to keep busy and feel a sense of accomplishment when all I want to do is go out for a hike.
Our communities are more accessible than they were even twenty years ago but that doesn't mean they are accessible. I can't visit friends in their homes because they have stairs instead of a ramp to enter the home. I can't enter the local banks to do my own banking because they don't have ramps either. My community doesn't have many sidewalks and where they do the walks are crumbling and unsafe to travel over. This leaves me with having to ride in the streets. It's not a problem during the day, although I still get strange looks, but it means I have to plan to be home before it gets dark because cars might not see me.
This is where I am, Often feeling like a prisoner in my own home while seeking a purpose for the rest of my life.
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