prime time Blog

Well, I was posting a comment on the DMRF bulletin board when I realized it might make a good subject for a blog post.

Here's what the post said:

"It takes a lot to organize life with a disability. :)

• Overcoming social constructs
• Deciphering legitimate needs
• Quieting negative self-talk
• Mobility, social, emotional and self-care

It should be noted that the growth potential is limitless! LOL :)"

Of course, you readers know this is true, but recognizing a truth doesn't always mean one knows how to manage it. I mean, I'm not sure I know how to manage it. It is mostly trial and error with me, but after creating a long list of errors, at least now I can be comfortable in many things.

For instance, I have learned to stand firm on decisions regarding my treatment whether or not anyone agrees with me. If there is a new medication suggested, I study the medication, ask for experiences from others with Dystonia and then decide whether or not taking it would help me meet my life goals or not. Depending on the answer I make a decision. More than once I've had to turn down new meds because of the possible side-effects and/or its incompatibility with my desires.

I've learned that I would rather have dystonic movements and be awake during the day, than sleep through the rest of my life, whether my eyes are open or not. This may seem like a reasonable assertion, but there are many who are extremely uncomfortable with 'storms' and other movements and would prefer that I take the meds, even if it reduces my quality of life.

That's a major decision the person with dystonia should be allowed to make.

I have learned that I cannot go out without my wheelchair, no matter how little space will remain in the vehicle after the chair is packed and no matter how much I or someone else would prefer I didn't need to use the wheelchair. It is better to have the wheels and not need them, than to get into a situation when my legs cease to function and be stranded. No matter how that makes people feel.

See it isn't a question of emotion. It is a question of practicality. It is a question of freedom through AT.

There are certain things people with acquired disabilities will never be able to do-- if they are not willing to shift the paradigm from the popular view to the realistic one. If we are determined to do this, we'll discover the pain of change is fleeting.

I can't wait to hear the feedback on this one.

Take care and be well...