Redefining Disability Project: Post #27

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

What barriers do you encounter in your daily life when it comes to disability?

 As you can imagine only having one side of your body totally undependable and not having the ability of clear speech is definitely limiting.

Until just recently, I could not stand and walk for any great length of time or distance. The spasticity in my lower leg from my stroke made it too painful. I couldn't push a grocery cart around a store for more than fifteen minutes. Try shopping in Wal-Mart like that. Since the dry needling has shut down the spasticity to a dull roar, it's considerably easier getting around on foot power alone.

With my shoulder regaining most of it's mobility, thanks to the needling to my bicep, I'm able to carry things positioned between my elbow and body, and under the arm better. It's almost like being normal again. Well sort of. The headache of how I was going to carry a drink while walking with a cane in my functioning hand is remedied. But still not being able to use my right hand and wrist is very limiting.

My speech though improved is still halting with the aphasia. I'd rather do emails than talk on the phone. Staying on topic is still problematic. 

The chronic fatigue is better but still a long way from being ideal. I still us the twelve spoons to measure my activity and energy level. I often fall short by the end of the day even with naps. This past week I had to do the grocery shopping over a three-day period just to get it done. That in itself was exhausting. Add my therapy sessions at two times a week and it had me going and going.

Now that I'm basically out of pain from the spasticity, (hip hip hooray!) my Fibromyalgia decided it was its turn to override its medication for about 48 hours. My spine from previous surgeries ached to the point of me yelping when I moved it. My one functioning hand refused to close it a tight fist. I ended up prying my fingers loose on my nonfunctioning hand in order to hold onto something tight enough.

The temperature has been reaching the mid 80's and I have yet to turn on my air conditioning because of my hubby. He's still wearing long sleeves and has two blankets on his bed. Meanwhile, I'm pouring sweat like a nervous bridegroom, and my heart is not behaving because of it. I've had to double my arrhythmia medicines to keep my heart rate below 120 BPM.

I'm just disabled in too many ways! There are just too many hurdles to juggle and jump.

Most times, I can do what I need to do and still finding alternative ways of making forward progress. Very little blocks me totally. I'm adaptable that way. But if anything takes two hands to operate, I have to wait on others to assist me. That becomes a royal pain like the yard work. I still can't operate the chain saw, hedge clippers or lawn mower safely. So with the warmer temperatures and the rain, my yard has become an eyesore while I wait.

Redefining Disability Project: Post #26

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

Time for another question...


What things are most important to you when it comes to media representation for people with disabilities or your disability in particular?

I absolutely hate when the media plays the "poor pitiful thing" ploy. I've been involved with many fund raisers for the Arthritis Foundation. When they play the sympathy card, I tend to bow out. 

My daughter, who was afflicted with Juvenile Rheumatoid Arthritis, did her part for as long as she could remember back with fund raising also. She was diagnosed at 18 months old and is now almost 40. That's a pretty long time. She didn't like to appear on camera so we taped her doing ordinary kid stuff with concessions and various braces. She always portrayed an normal kid just having fun except with the physical therapist. That brought tears to her eyes usually. She did appear, at 10 years old, once on a live telethon and described what an ordinary day for her was like, but that was it. That was okay with her. It was her paying the Foundation back for umpteen dozen braces and splints they partially funded for her over the years. It was told in a matter-of-fact matter, not don't you pity me. Even today, she doesn't mention the fact that she has Rheumatoid Arthritis unless she has to.
 
What was astounding to me was all the "give $$ emails" I've gotten from the National Stroke Association since I first contacted them almost three years ago. I figured they were run like the Arthritis Foundation with resources available for stroke survivors. Very little in resources available that would really help but once you get on their list every week there is something in my email about donating money. 

I'm like "Doh! I haven't got any money to donate. I had a stroke! Isn't that what you are supposed to do is help me?"

 As far as regular media hype about disabilities due to stroke, the ad campaigns are pretty accurate. But more valuable information is gotten from actual stroke survivors who get tired of hearing the same things from the professionals like: 

• Every stroke is different.
• No answers about recovery or how to recover.
• Plateaus and "It's the best you're going to recover."

None of this helps no one when they are asking for information. At best, it's a cop out. At worst, it's possibly untrue.

The NSA (National Stroke Association) is more geared for scarfing up your money and offering little in return. Well, I take that back. When I was in hospital rehab, I got tons of fact, figures, etc on how to prevent and identify strokes. How much sense does that make after the fact??? That's where a majority of money is spent...on stroke awareness and prevention rather than being of assistance to us who've had a stroke. Isn't that like closing the barn door after your horse have run out? As a stroke survivor, that's my take on this organization.

I much prefer the stroke tribe (online stroke survivors) and my support group. They have more information and help than the NSA could ever hope for.

I'm not knocking the importance of prevention and public awareness, I don't. It's important to keep others from being in my boat. My question is this...only one-third of all strokes die, what about the survivors?

Yes, stroke accounts for a large percentage of people with life long lasting disabilities. The media is quick to shout when this public figure or that suffers a stroke, but it doesn't depict the whole story. I guess that's one of the reasons so many of us blog and self-publish books. We honestly do a better job than the media. If we actually had the media behind us, we could move mountains.

When the media covers strokes, it is glossed over. They show the worst case scenarios rather than functioning people in spite of their disabilities. It goes back it the "poor pitiful thing" attitude. Cases in point (I'm going to age myself now), Dwight D. Eisenhower had a stroke in 1957 and had aphasia. He remained President for four more years afterwards. Sharon Stone had a stroke and is still acting.

We are regular people. Yes, we've had a stroke, but life goes on. That's why we are called survivors. We have visible and not so visible disabilities, but we carry on.

Redefining Disability Project: Post #25

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

Time again for another question...
This time a tough love kind of answer as seen though my quirky nature. So be warned.

If you could “cure” the disabilities that affect your life, would you? Why or why not?

Could I cure it and would I? Yes,  I wouldn't wish a stroke on my best friend or worst enemy. Hold that thought. Come to think of it, my worst enemy had a stroke and died before he had to deal with the disabilities, and my best friend had a stroke too. Hmmm. I may have to rethink this statement.

But there is something to be said about the recovery process and what you learn that you might not have. Think of all the adaptions you have to make in your life after a stroke and paralysis. I mean losing function of half your body is pretty devastating. Having to live like this is pretty challenging every single day. It's not like you can take a vacation to rest from it, but you have to deal with it. But wouldn't that be great to leave the physical impairments behind and truly enjoy a vacation? Would you have enjoyed it as much if you weren't disabled. You probably wouldn't know the difference.

Humans as a whole never know what they are capable of until they are faced with it. I wouldn't have tried half the things I do now with only one working hand if I hadn't had my strokes. I mean who in their right mind would want to? I wouldn't have near the self-satisfaction then as I do now in the things I can do.

It's a growth experience. Not that I wasn't fully grown or experienced before my stroke, but it's just different now. If you are given something you don't appreciate it near as much as something you had to fight or struggle for it to gain it. Maybe that's why I've always been a fighter. I've earned everything I've gotten. Personally, I've got some of the attitude of the button here----------->
I really didn't need another growth experience, but here I am again. Well, if I must go through yet another one, I'm going to do the best I can. Others may do the same or let it beat them down. Me, I'm going to meet the challenge. I'm hard headed like that.

If there was an instantaneous cure for stroke and paralysis, would having a stroke be that great of a deal? Probably not, but we'd be cheating ourselves of a lot of victories. Would we have the opportunity of recovering? Nope. Would we have the self-satisfaction of conquering the odds? Nope. But still I wish there was a little pill that would cure it all and make it all a bad dream. There are plenty of other things to make growth experience out of.