Why ME ?!
This is a question that runs through the minds of many people affected with some sort of life-altering illness or event. The answer is "It doesn't matter".
What matters is "What are you going to do about it"? It's very easy to say "I can't", and in some cases that's true. In most cases though, that simply means "I won't", because it's easier to sit back and say "We'll see what happens".
Nothing happens unless someone makes it happen. One can't sit around and let their fate rest in the hands of others. What if everyone said they "can't", and just waited on someone else?
Even though you want things back to normal, they probably never will be - not completely. So what do you do?
First, accept that!
Second, stop feeling sorry!
Third, decide what you want to do and what you can do.
Fourth, DO IT! NO excuses. "Can't" never could do anything. Volunteer, teach, mentor. All of your experience can help someone else. Help others the way you want them to help you.
That's why I started the Chicago Ataxia support group. That's why I started putting together these fundraisers. I simply need to do something. I can't just sit around. I won't let ataxia define me as a person, and I won't blame ataxia for how I act.
Frustration is the biggest problem I have. If you think about it, it's probably your biggest problem too. Stuff just doesn't work like it used to. So what? You do what you can until you can't do it anymore, and then you figure out what else you can do.
Things take me 3 or 4 times as long to do as it used to. I'm in no hurry though, and as long as I keep at it, it will get done. Doing dishes, mowing the lawn, cleaning the garage...it's all a bigger job now, however I will not be defeated.
The fundraisers, though small potatoes in comparison to others, are fun, and rewarding. Each year gets bigger and better. If more people took the initiative, there would be more results. This is what I'm hoping for.
Make some calls. Send some emails. Post on your my space or facebook page. Twitter. Blog. Start a forum. Do what you can. Help raise awareness and stop complaining about the lack of it.