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Posts Tagged ‘spina bifida

“Imperfect: An Improbable Life” – The Story of Jim Abbott, One of My Childhood Heroes

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by Treadmarkz

I have not read the book “Imperfect: An Improbable Life” but I am well versed in the story of Jim Abbott, the Major League Baseball pitcher who pitched for the Angels, went to the Olympic Summer Games, and later threw a no-hitter with the New York Yankees. His story is all the greater when you consider he was born with one arm. His story surely will be an inspiration to any child with a disability. Any parent who is looking for examples to give their disabled child of proof that they can do anything, please read this book and tell your child all about Jim Abbott. I admired him so much from afar as a kid growing up with spina bifida and wishing like crazy that I could have been part of the little league team.

Sometimes You Need Not Look Beyond Your (Extended) Family

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by Treadmarkz

In a recent post I made reference to “support groups” amongst people with any given disability, and how I hardly ever met anyone with my disability, spina bifida. Interestingly, I have been fortunate to make connections with some really interesting people this year already, including a cousin of mine who I did not know I had until a few years ago. Even since learning of his existence, I haven’t seen much of him because he lives in another state. I added him to my Facebook friends list and occasionally commented on his posts, but really didn’t get to know him. But then recently I was flipping through some pictures of him on his page, and I found one which showed clearly that he was in a wheelchair. I did not know him to be in a wheelchair, and nobody ever told me anything had happened to him. So I asked him. And he told me he, like me, has spina bifida at the L-2 level.

Naturally this shocked me that he had spina bifida. Why hadn’t anyone in my family told me this? It would have been nice to know that I had another person to talk to about it. Turns out he himself did not know he had spina bifida until he was 21 when he started having medical problems. He’s had his ups and downs and has had times when he could still walk with braces, but he does use a wheelchair.

We both had doctors who told us (or in my case a doctor who told my parents) that our case would be much worse than it turned out to be. It is encouraging, and horrifying at the same time when you see how wrong doctors can be. But they’re only human. One doctor said my life would not be worth living, and a doctor told my cousin that he’d be paralyzed from the waist down by now but his paralysis is really just large areas of numbness in his bottom half.

Ever since finding this out about him, it has been great exchanging war stories – how we both struggled with math just as the doctors said we would (though I think I was much more hopeless in this category than he was).  But mostly we have discussed medical problems. Songs of our scars, ghosts of operations past. And he told me that he will be having an operation in the future which will put him in his wheelchair for several months. I let him know about how I “did my time” when I was in a body cast or had a broken leg at different times as a teenager. Made some suggestions on how to make the time go by and avoid letting your spirit hit the bottom of the barrel.

As I wrote LONG ago in this blog, many people (including John Mellencamp) have spina bifida but can walk. But I never knew of a case where someone did not know they had the disorder until adulthood. It’s been nice hearing about yet another of the various experiences people have had with spina bifida, and I have been happy to be able to give my cousin advice. I look forward to continuing our correspondence because I am sure we both have something to offer each other.

Furious Male Liberal Defends Sarah Palin AND Her Baby

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by Treadmarkz

I am not a fan of Sarah Palin’s political views overall, but ever since her introduction as McCain’s running mate at the RNC, she has been taking a lot of crap because she had her baby son Trig, who has Down Syndrome, at the convention. Because of this, I can no longer remain silent on the issue. A few things are being said in the media about her little guy’s appearance on the National Stage that are really getting me steamed.

1. That having him at the convention was a political stunt to demonstrate how “pro-life” she is. Just because 80% of women who find out their unborn baby has Down Syndrome have an abortion according to this story does not mean that keeping your baby makes you any more of a saint than anyone else. After all, it is your baby we are talking about, not an everyday inconvenience that one chooses how to dispose of. I think Palin had her baby at the convention because he is a part of her family and she was introducing herself, and her family, to the country. Case closed.

2. By making the above into such a big time news story, the media made it seem as though not having an abortion in a similar situation would be noteworthy, somehow. Following through with a pregnancy which you know will result in a child with a disability is not a pro-life thing, it’s not a Christian thing, it’s not a Republican or Conservative thing. It is about love, and we all have that in us somewhere. Even us God damned baby killer pagan liberal Democrats!

3. One doctor went so far as to express concern that Palin’s example will lead other expectant mothers NOT to abort when the expected child is found to have a disability! What the Hell? Look, I have spina bifida, I know what a handful my disability was as a child, but there is always HELP one can gain through doctors (if they know what they are talking about), family members, the community, etcetera. And this is not even an issue of taking away people’s CHOICE. It is an issue of giving a baby with a disadvantage a CHANCE.

This doctor is worried that the mothers of fetuses with Down Syndrome will not be prepared to take care of the child. Well, I doubt very much that my own mother grew up training all her life to have a baby with spina bifida. Mothers who have children with disabilities find ways to cope with the circumstances they are given, and they do so out of love, the greatest power in the world. The greatest human quality. And Sarah Palin is a human being.

All of the negative attitudes toward Palin having this baby will reinforce the misconception that having a child with a disability is beyond the average human being. It encourages abortion of “imperfect” children. I am not going to get into the pro-life/choice argument because it’s a dead end as far as I can see. I am just using my own life experience here. I am pro-chance, my friends. Making her out to be either a saint or simply irresponsible will only serve the point of view that the chance to life should not be given so freely.

And quite frankly these attitudes have me really concerned coming from fellow liberals. Do they realize they are reinforcing every stereotype that conservatives have toward them and hold to be so repugnant? No wonder Barack Obama is losing so many supporters, even though he has absolutely nothing to do with this.

Hell On Wheels: A Wheelchair Anthem

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by Treadmarkz

I have spent a lot of time lately listening to Paul McCartney’s post-Beatles music, and I realized that the song “Helen Wheels” is not only one of the greatest pieces of block-rocking boogie that Macca ever recorded, but because of the title, with a complete overhaul of the lyrics, the song would make a great anthem for people in wheelchairs such as myself. Then I realized that no song can really cover the wide range of experiences that all people in wheelchairs will relate to.
However, this is my attempt. Take it for what it is worth:

——————–

I said farewell to a doctor from Hell who said I’d never have much of a life

That kind of clown never gets me down when I go home to my sweet wife

My early days now seem like a haze, spent a summer in a body cast

But life is good, and though I’ve never stood, I wanna make this journey last

Hell on, Hell on wheels

Everybody else thinks I got the raw end of the deal

Hell on, Hell on wheels

But I’d never have it no other way

L2 level para, full of metal but I never did think twice

To imagine me as I wished to be and singin’ wouldn’t it be nice

Doin’ fine and I never pine away on what I can not do

“Life ain’t fair” never goes nowhere, and you know it’s up to you

Hell on, Hell on wheels

Everybody else thinks I got the raw end of the deal

Hell on, Hell on wheels

But I’d never have it no other way

I can’t make sense of those who take offense when people say I’m “wheelchair bound”

That’s okay, man, I do it my way and they’ll never hold me down

Been a casualty of all that “woe is me”, I’ve seen fire and I’ve seen rain

Life is good, though I’ve never stood I think I’d do it all over again

Hell on, Hell on wheels

Everybody else thinks I got the raw end of the deal

Hell on, Hell on wheels

But I’d never have it no other way

How Baseball Became Wheelchair Accessible To Me

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by Treadmarkz

Today, April 20, 2008, marks the 100th anniversary of the death of Henry Chadwick, sportswriter, statistician, and often called “The Father of Baseball”.

Chadwick did not invent baseball, and he was not known to have played the game. But he was one of the first sports journalists to focus on baseball. And it was his early reporting of games in the New York area between newly formed teams that quickly turned this playground game into a game for men which would soon be referred to as “The National Game” or “National Pastime.” Chadwick popularized the collection of baseball statistics as we know it today, and he was strongly against the spread of the myth of baseball’s beginnings, the claim that Abner Doubleday invented the game in 1839 in a field in Cooperstown, NY. Chadwick knew that the game had a longer, richer history than that.

Now, why is this important to me? What does this have to do with the general theme of treadmarkz.wordpress.com? Good question.

First because early in life I became enchanted with the game of baseball, a “baseball history and statistics wizard” as my mom has often called me. It made me feel a part of something magical. Being born with spina bifida, and unable to fully take part in baseball, reading about it gave me something to look up to. Just to know about its history, and its players, men who, to me were close to supernatural, made me feel a part of something bigger.
Then there was that moment when I was in 9th grade, but I was at home, out of school for months, in a body cast after a back surgery. There was that one flash of inspiration while I lay there completely out of commission, not doing anything.

What do I want to do with my life? I want to be a journalist!

And what do I want to write about? I want to write about baseball!

That was all I wanted from the time I was 15 until I was about 25. I lived out that dream and I tried to write about it in a way that would fill another generation with wonder over the simple game.

Anyone who has ever written about baseball or has cherished the history of the “grand olde game” is in debt to Henry Chadwick.

Good News For Those with Spinal Cord Injuries Who Hope To Walk Again

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by Treadmarkz

Many people living with paralysis due to spinal cord injuries hold out hope that one day they will walk again. For many it is a religious faith that drives them to work toward the day they will leave their chair behind.

The other most promising source of the redemption they hope for is science. I was born with spina bifida, and I personally believe that if I was intended to walk, I would not have been created the way I am to begin with. Though I believe all of the sciences are worthwhile endeavors through which humanity can do great things, I believe that the level of ability which I was born with is one thing that science cannot overpower. I understand how those who were born “able” and were injured may feel differently.

But with all respect to my disabled readers who do strongly believe they can and will walk again, the story linked to here is for you.

A Whole Lot a-Shakin’ in the Life of Treadmarkz

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by Treadmarkz

I haven’t posted anything in a while because I have had a lot happening in my life. First, I have had a friend review my first draft of a novel, called “War Is Over” and now I am planning to hit that hard to get it ready for publication. If you are unfamiliar with the phrase “War Is Over”, it was an anti-war campaign initiated by John Lennon and Yoko Ono Lennon in 1969. But this is not an anti-war book. It is a pro-understanding book.

Secondly, I have been preparing myself for a job interview. I was interviewed today for a new position at the company I work for. New position, new responsibilities. Fun stuff! If I get the job, I look forward to the challenge! But I shan’t get my hopes up prematurely.

Thirdly, I have been exchanging emails with a couple who have two children with Spina bifida. We will call the couple Tim and Jane. I heard about them through a friend of mine and I jumped at the chance to get to know them. I think it is important for all of us with disabilities to do all we can, first to educate able-bodied people about why we are their equals in every way except some superficial and physical ways.

But also, if we meet people who are raising children with the same disability as we have, to talk with them and, even though every child is different, try to help them to understand what may lie ahead with their child, and offer them advice on how to give the child the best chance they can at being the same as everyone else. I think I can safely say that all disabled people went through that at one time or another.

“I’m different. Why? I don’t want to be different. Wait a minute…sure I am different, but barely. So what? I wish people wouldn’t treat me like I am different!”

And finally, if you have a chance to mentor a child or young adult who is going through the same things you went through at that stage of life, it is important to do so. It’s a legacy thing but it is also a way to do wonders with the knowledge that you have which may be exponentially more valuable than you think. If the parents worry about bringing up a health, happy child who is equal to his peers, think of how the child himself/herself feels!

I look forward to speaking with Tim and Jane again.

Treadmarkz.WordPress.com Readership Poll

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by Treadmarkz

I have reached a point where I have a fairly decent following here at treadmarkz.wordpress.com, and I want to get to know more about who is reading.

I’d like to start by asking if anyone reading this has spina bifida. If not, what type of disability do you have (if you have one)?

If you do have spina bifida, I am curious about a few things:
1) Can you walk?
2) Have you struggled with math and other technical languages (i.e., computer programming, reading music)

3) Are you allergic to latex/talc?
4) Are you allergic to bananas?

5) Have you ever had a seizure?

These may sound like completely random questions to someone without spina bifida, and maybe even to those who do have spina bifida. But they are all things that I have either been told I will struggle with or have indeed struggled with in my life. Just curious.

Feel free to tell me anything else about yourselves. Married? Kids? Jobs? Interests? What do you think are the most pressing issues for disabled people? Thanks! And remember you can click the link over on the right hand side of your screen to get Treadmarkz delivered to you by email.

Written by treadmarkz

April 2, 2008 at 9:41 AM

I Am Lame

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by Treadmarkz

Lame is another word that was perfectly acceptable a while back in reference to the physically handicapped. If your legs didn’t work, you were lame. This one is not as good as another word that I blogged about, “Cripple“, because the word “lame” is so universally abused at present time to refer to anything that is impotent, uncool, out of style. Music from a bygone generation is lame. A movie that does not provide the action, explosions and excitement that the preview promised is lame. And, many subcultures that you will find within the hallowed halls of many high schools…the nerds, the trekkies…etc…all lame.

Why? Because their substance foregoes aesthetics?

Maybe, but remember, it used to be that the kids that messed around with computers during the summer while all the cool people were out being cool, were lame. Now they are cutting edge. What once was lame is now the upper crust.
That is the way I see things for the disabled community. Years ago, long before my time, disabled people were cast aside without a second look. But we are the 21st Century Lame, and the world is ours. All we have to do is stake our claim in it.

Written by treadmarkz

March 7, 2008 at 5:46 AM

Scar Tissue

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by Treadmarkz

I was born with Spina Bifida. I can’t really give you a great description of what Spina Bifida is, because every case is different. For instance, my cousin has a child with Spina Bifida who can walk, while I never have. It all depends on the area of the spine that suffered pre-natal damage. As with any technical subject, I think it would be best to find information on Spina Bifida at the library as long as the book is current. I have never really read too much on the subject to be honest. I always felt like it was more important just to know myself and what my personal limits and abilities were. I would never suggest to anyone that they shouldn’t be educated about their disability. I feel that I know what I need to know. But a book can only tell you so much.

With Spina Bifida, the many operations you will likely undergo beginning in infancy, can leave you with many scars and imperfections. Anyone who has listened in on the “Kids Are Too Fat vs. Teenage Girls Are Too Skinny” debate can see we have a major image hangup in this country particularly. Any slight physical imperfection has to be covered up, removed or otherwise fixed. And I am NOT immune to this. For example, my hairline has been receding for quite some time, and after I began to notice it, I wouldn’t often go out in public without a hat. Though my attitude is improving on this, I have another “imperfection” which I never tried to conceal. It’s a slightly curved scar about three inches long just behind my right ear which I recieved when I was a baby and I had a shunt put in to regulate spinal fluid. I like to keep my hair very short, and this makes the scar very visible. Maybe it is because I am in a wheelchair and I know that people will probably look twice at me anyway, but I see no reason to cover my scar.

I have other scars that tell just as much of a story about my life, on my back and on my belly, but you won’t see me with my shirt off very often. And do you want to know why? Because I have a gut that could use some work. But all that tells you about me is that I don’t work out as much as I should and I don’t eat the things that I should, which is nothing to be happy about. A receding hairline might tell you about my genetics, and that I’ve worn a hat too much, which just shows you how brilliant it was trying to cover it up in the first place. My scar behind my right ear tells a lot more about where I’ve been. And it reminds me of what I can and have survived.