Jul 26, 2015

Wheelchairs and Stroke Survivors, aka Talk to Me When You're Talking to Me

China had the first-recorded wheelchair in the 6th century, made of plant reeds and iron wheels, and then Spain, Germany, and England later, ably transported, mostly through wars, the disabled by other wheelchair materials. Many centuries later in the 1700s, in Bath, England, the most popular wheelchair, albeit cumbersome, looked like this: 

Now we have this


Look how far we've come. But I'm here to talk about wheelchairs in a different capacity.


There are two Mark Zupan's. There is Mark Zupan, the famous dean of the University of Rochester's Simon School of Business, but I'm talking about the other Mark Zupan, who earned a soccer scholarship to Florida Atlantic University


Mark Zupan

A football and soccer star in high school, and after a soccer game in '93, when he was 18 years young, Zupan got buzzed at a bar along with some of his soccer team and fell asleep in the back of his friend's truck. His friend, driving drunk, went off the road and Zupan landed in the canal, clinging to a branch for almost 15 hours, resulting in hypothermia and, ultimately, to quadriplegia.  


Even though he stands and walks short distances, Zupan ended up in a wheelchair for life and became a quad rugby champion twice. Zupan went on to become a TV and movie personality, appearing many times as "the guy in the wheelchair."  


Zupan's autobiography, "GIMP: When Life Deals You a Crappy Hand, You Can Fold---or You Can Play" and his notable championships make him famous.

But to me, he is most famous for his words: "We're normal people," says Zupan. "Don't be scared because we are in a chair. People don't understand that. They think, 'Oh, a wheelchair, something's wrong with their heads, something's just not right.' Well yeah, we may be a little twisted, but no more than anyone else." And there it is: "no more than anyone else." 

Maybe it's only me, feeling diminished by the wheelchair. I can stand and walk with a quad cane so sometimes, when I'm in the wheelchair, I raise the leg rests and stand so I'm on the same plain as everybody else. I'll explain.

When I go to a doctor or a store and I have a lot of walking to do, I'll go in the wheelchair, of course with a friend because I can't drive (seizures in the first year, and this is my 6th, but still...). The doctor or the salesperson always addresses my friend, like, as Zupan says, they think "something's wrong" with my head.

I was almost to the point, many times, of telling them "to look the fuck at me." But I didn't. Except one time. I was, to use on old expression, at my wit's end.

Kristin C, working with the elderly, says in an email, when looking at somebody in a wheelchair: "I think we can only learn this from exposure to [the wheelchair]. If we all realize that it is the person in the wheelchair who counts, and not the wheelchair, and actually look at the person, we will get better at it from practicing it."

But how many people do that? 10 percent? Less? Fuck. Not many at all.

Now I have a new line, much more genteel, to redirect attention back to me: "Talk to me when you're talking to me." You can use it for the doctor or salesperson. If asked, say you just thought of it. Don't say you read it somewhere. Don't give me credit. Just use it. And it works every time.

Jul 10, 2015

For Immediate Attention: An Email Just Received

I just received an email from Douglas Lowell, President of Find a Cure Panel for debilitating diseases including stroke. Here is what he said:

Subject line: Cryptogenic stroke (which is known as a stroke of unknown cause) qualitative research

Find a Cure Panel specializes in patient research for rare and serious diseases and conditions including strokes.

Douglas Lowell says, "Patients who have no idea what caused the stroke and the doctor lists 15 reasons but can’t settle on one, and nobody agrees…that’s cryptogenic and as long as they do not have AFIB, then they qualify."

In the next few weeks, FACP has some patient and caregiver research for people who have suffered a cryptogenic stroke (which is also known as a stroke of unknown cause) but have NOT been diagnosed with AFIB.

It’s very easy to participate. It’s one confidential and anonymous call with one moderator talking about your experience. FACP gives you a 1800 number to call in and schedule the call at your convenience.

To qualify:
1) You must live in the US;

2) You must have suffered a cryptogenic stroke (stroke of unknown cause)

3) You must be over the age of 50

4) You must NOT have an implanted cardiac device (ie. Monitor or pacemaker)

5) You must NOT have been diagnosed with AFIB

6) Must NOT be using Veteran’s insurance.

If you do the call, FACP will donate $100 to a non profit of respondent choice.

If you are interested in participating, please email us at info@findacurepanel.com and reference cryptogenic stroke.

As my grandmother used to say in her broken English, "Oy. It couldn't hurt."

Jul 8, 2015

10 Things I Learned About Living as a Stroke Survivor

I live a life of peacefulness. I'm not rich and don't want to be. I am a Goodwill addict. And I've never accepted the stroke fully, but I'm close, getting to recognize that I am competing with myself--one more step to climb, yet another minute on the bike, an additional hour standing.

I have solitude now, but I'm not lonely. When it's quiet in my apartment, I am thinking all the time--of this blog, another book to read, another book to write. And the ten things I learned about living as a stroke survivor. Here they are:

1.  I find people staring at me, like an oddity of sorts among the "normals." I used to return their stare, angry and maniacal, but now, I like myself enough to not care.

2.  I'm worthwhile, making a contribution, albeit small, to society at large, by giving my knowledge about strokes to anybody who affords me the opportunity to speak. There is always a stroke group who loves to hear the stories behind a stroke survivorship.

3.  I pursue my love of reading to keep my brain at optimum level. If my eyes tire and can't read the words on the page, I use audiotapes.

4.  I always use the computer since I am a writer. But you don't have to be a writer to stay in touch with the world via the computer, with CNN or Google news, for example. My iPhone and my iPad do the same thing. 

5.  The last cry for help was the last. Having Life Alert, a direct connection to the emergency crew by pushing a button on a necklace that's always around my neck, makes me and my sons more comfortable. The cell phone, if it's charged, works the same by calling "911." (The operative word is "charged"!)

6.  Most of my falls were in my kitchen. But now, I bought a used wheelchair and a new cushion that I keep in my kitchen to prevent falling--sit, retrieve, and stand.

7.  I speak from the gut now to medical professionals, telling them, for example, if they missed a question on the "new patient" form or if they don't let me finish my thought, always preceded by, "With all due respect...."

8.  I like to be organized to simplify my life and to accommodate all my OCD (which many stroke survivors have) tendencies. So I have a file cabinet and a desk which I bought at Goodwill for $15.

9.  I set the alarm on my iPhone when I have to take medication by speaking to Siri, the intelligent personal assistant that comes with Apple products. It takes the guesswork out of remembering. I also set the alarm to keep from napping longer to avoid insomnia at night.

10. I live each day with appreciation for the love of my sons, their respective significant others, and the friends I have obtained coast-to-coast in America and around the world.

As I say in the intro to the blog, "I don't embrace the stroke -- not now, not ever -- but I accept it because I have two options: live with the stroke or... well, you know the alternative." 

I am here, alive, and trying my damnedest to keep it that way for a long time.