“Lorenzo’s Oil” Boy Dead 20 Years Later Than Doctors Predicted

by Treadmarkz

Lorenzo Odone, the subject of the 1992 film “Lorenzo’s Oil” has died, more than two decades after his doctors said he would succumb to ALD, an “incurable nerve disease” which left Odone blind and in a vegetative state. Read the story of his life and death here, where it is better put than I could try to rewrite it.

But the most important fact of Lorenzo’s life is that he lived well beyond the point that his doctors, the supposed experts, said he would. Which just goes to show, again, and I can’t stress it enough, that you can only place so much importance on what the doctors say if you have a child with, or you yourself have a disability or a life-threatening disorder or disease. Doctors only know so much. They only know what they have seen, and what they have seen defines the odds they give their patients, and at some point or another, someone like Lorenzo is going to come along and defy the odds by leaps and bounds.
And as you will read in this story, Lorenzo had parents who did fantastic things to give him a life that was above and beyond what was expected.

The Oscar nominated film of Lorenzo’s life starred Susan Sarandon and Nick Nolte.

Make It or Break It Moment #3 – Who Decides the Fate of the Disabled When All Hell Finally Does Break Loose?

by Treadmarkz

It always strikes me as funny when a fully able-bodied person reads or hears something about the everyday trials of a disabled person and they respond with something like this:

“Wow, I complain a lot when I am tired or have a stomach ache but after hearing that, I will never complain again.”

Why is this funny? Because let’s face it. You know that within a day of saying this, that person will have a backache or a stomach ache and they will probably vocalize some form of complaint. That’s what we do. All of us. Disabled or not. Very rare is the person who never complains about anything. It is not as though by swearing off complaining, you make the life of the disabled person you just read or heard about any better. Though, it also is not as though by complaining, you make your own life any better. It just makes you feel better to vent.

Having said that:

Here is a story that, upon reading it, should make anyone who is not severely disabled or elderly, or otherwise in life-threateningly poor health, and even anyone with just a minor disability, happy with what they have. It is a story about a list that apparently does exist somewhere, defining what criteria a person would have to meet in order to be considered priority in getting care in the event of a major epidemic or other world-shaking emergency.

What gives the people who will be making these decisions the right to play God like this?, you may rightfully ask. Is one life more valuable than others? Or is it just a decision made based on logic and what’s best for the future of the human race, a situation wherein every individual human life is assigned its own value?

But let me say this. The criteria of the “saved” in this story does not cover strength of character. What I mean by this is, what if there is a major world-wide nuclear disaster and the world population is depleted because the focus is place on saving the strong bodied, healthy-hearted, young, virile, fertile people. What if, on day two after the bomb, we find that a higher than expected percentage of the saved are mentally, emotionally incapable of handling the extreme stress, whether from lack of experience (youth) or just plain lack of adversity in their lives (good health, a result of opportunity and genetics).

Let me be perfectly clear: I am not going to try to compare the every day trials of the disabled, or even our worst moments in life, to a nuclear disaster. This is just one of my what-if questions. I am just concerned about what, as a society, we have chosen to peg as desirable traits.

Make It or Break It Moment #1 – A God-Sent

by Treadmarkz

This is a follow-up to “Make It Or Break It Moment #2, but this one happened first, so it has to be #1. Confusing enough? Alright, good.

Last fall I had the good fortune to meet a woman who was a key player in the “Make it Or Break It Moment” of all “Make It or Break It Moments” for me. A God-sent, really. Her name is Fran and she was one of my mom’s nurses on the day I was born.

In a recent posting, I referred to a “doctor from Hell.” This is a doctor who, within hours of my birth, told my parents that, since I was born with spina bifida, since I was “deformed”, my life “won’t be worth living.” This is where Fran came in to help make or break my future. My parents, in a shocked state that they understandably were at the time, were in no condition to think this through logically, except for the fact that I was their son and they would love me unconditionally no matter what physical condition I was in.

Let me be clear. I don’t know what this doctor was suggesting my parents do about it if he really felt my life would not be “worth living” but I know that my parents would not have given in to any such suggestion. But Fran offered the well-grounded, outsider perspective that my parents needed to see things in the most positive light that they possibly could. She stepped in to assure that the power of the negative words that my parents were hearing from the doctor would not overcome them and affect they way they approached their new child. Though I have only met her once (not counting when I was a new-born, of course), Fran is one of the most important people my life has ever crossed paths with.

After I was born my parents had not had contact with Fran until last year when my mom started to exchange e-mails with her family. It turns out that Fran, now in her 80s, had a stroke a while ago and ended up in a wheelchair and living in an assisted living apartment. When Fran’s 85th birthday came up, my parents, along with my wife and I were invited to the celebration.

I met Fran, and introduced her to my wife, and told her about how I had achieved some of my goals in life. Because of the stroke she did not speak save for a short list of words and phrases. But I swear, when I engaged her in a conversation about the recent Packers/Vikings game, she said a word that her family did not know her to have been using. You must understand, the subject of football does that to folks who are either Vikings or Packers fans.

We recently received word that Fran had been experiencing a drastic improvement in her condition and was now moving out of assisted living, and in with her daughter. I look forward to going and spending some more time visiting with Fran.

Make It or Break It Moment #2 – How to Approach the Disability Issue When Love is Involved

by Treadmarkz

My wedding anniversary is coming up, so bearing that in mind, I want to share a story. It was one of those moments in my life that…well, let’s call it one of those “make it or break it moments” that we all encounter at one point or another. We’ll call this one Make It or Break It Moment #2 because I have another one that I want to write about later that took place earlier in my life so that one has to be #1. Make sense? Okay, off we go…

Our story begins in the fall of 1999, when I was a young college student with a gleam in my eye and nothing but hope for the future. But something was missing. I had not found love. I had thought I’d found it but it turned out to be a mirage. I was still recovering from that in the fall of 1999.
That fall, I found myself passing a lot of time in on-line chat rooms. At first it was to avoid homework. For a while I found nothing but profane nimrods with nothing to say. But then I met the woman who would change my life. The first time we met, she scolded me because I, having turned into one of those profane nimrods (those chat rooms were like zombie colonies if you were not careful) had just said something profane and nimrodish to someone. So she told me off. She felt bad I guess because before I left for the night, she said okay maybe that was too much, what’s your name? and all that good stuff and we had a civil chat. Then I left.

The next time I went on that same chat, I had changed my “nickname” to “The British Bulldog” or something like that. So of course when I saw her name, I asked her if she remembered speaking to me, and she said no. So I went through all the names that I could remember using and she said “no” to each one. I used to change my name all of the time, so just when I could sense that she was feeling harassed I said “White guy!…remember White Guy?!!!”…I was real creative with my name some times. But it struck a chord with her and she remembered me.
Something in that first chat of ours must have peaked the curiosity of both of us. Because this second time, we chatted for a good part of the evening and into the late night. Good thing those chats don’t have a “last call”. I mean if we had had this chat in a pub, maybe by the time last call came she would have given me her number so we could continue another time, but I did not want to stop talking with her. Still, I knew that something unavoidable was coming. It did not even occur to me that she might be in a wheelchair. (She isn’t). But I knew that I had to tell her that I was. Because I could sense something big happening between us. And with my little experience with women, I thought this was just the biggest deal ever and she had to know right away or I was being unfair to her or something.

So late that evening, after so much had passed between the two of us, and after we’d learned so much about each other, I came out with it. “I have to tell you something, and I am not sure how you are going to react” is what I said. Yeah I know, great way to make someone feel secure about what they are about to hear, right? I can only imagine what was running through her head. “He’s married? He’s a swinger? He’s bi-?, He’s one of a set of conjoined twins? What?!” At first she told me not to tell her. I don’t know why, but I know she was afraid whatever I was about to say was something that may require some clear, wide awake thought, and should wait for another time. Eventually I convinced her that I should just tell her. “I am in a wheelchair.”

I think it is best to be fairly upfront about your disability with a girl/woman or guy/man that you like. I mean one thing at a time, but be honest. Don’t lay it all out in one swoop, but if you tell the person this is how it is, this is how I live, she or he will respect you for it, and if they don’t, they might not be the one you are looking for to begin with.

You know what though? I don’t even remember her reaction. She had a few questions, certainly and I told her a little more about it as she asked, but her initial reaction was something like “Oh…alright…so, chat tomorrow night with me?” What I mean is it did not cause one of those abrupt “maybe we should take it slow” kind of exchanges. That only came up when we realized the distance between us (about 800 miles). Of course that was overcome as well but that is a different story. She told me later that something in the way I described my surroundings or the way I worded things when I told her stories made her wonder if I was not on two legs. I don’t know how I did that but at least it prepared her.
Not that I feel like it would have affected my chances with her much had she not been “prepared” for it. Not knowing what I know now. She’s the kind of woman who has to ability to cut through the materialistic nonsense and look for deeper meaning and value in things and in people. And somehow she found it in me. I have had the good fortune to know her for almost nine years and be married to her for almost four. And it all came down to that one moment, which made or broke our future, whether she was going to accept what most would see as a major challenge ahead. She took it, and didn’t see it first and foremost as a challenge. If you don’t see things as an obstacle, they are not obstacles. And that is part of what we will be celebrating when our anniversary comes.

Double-Amputee Oscar Pistorius Eligible to Compete In Olympics…AND the Paralympics

by Treadmarkz

I have been quietly following this story, about Oscar Pistorius, a double amputee who wishes to compete in the Olympics for his country South Africa alongside fully able-bodied competitors. If you’ve been reading my work, you’d probably guess that this is exactly what I have wanted: Pistorius is now eligible to attempt to qualify as an Olympic athlete, not a Paralympian.

What do you all think of this? Do the carbon-fiber “legs” that he wears give him an unfair advantage or give his body and unnatural performance contrary to what the spirit of the Olympics is all about in the first place? The experts at MIT who have tested his “legs” say that they do not. They are made to mimic the performance of a biological leg and foot as naturally as possible. In this age of performance-enhancing drugs, though, this is bound to raise some eyebrows.

Underneath the story I have linked to above, there is a series of reader comments and one of the readers made a great point (which I myself responded to). He basically said that Pistorius should be required to either compete as an “able-bodied” athlete or a “disabled” athlete. He should not be able to have it both ways, even though it looks as though for now at least Pistorius will be doing just that. If Pistorius is claiming to be “able bodied” enough to compete in the regular Olympics, then is it unfair for him to compete in the Paralympics against “disabled” athletes?

But hey, let’s not get ahead of ourselves here! Pistorius still has to qualify for the Olympics (or be selected as an alternate if he does not make a “qualifying time”). If he can’t do it, then we’ll know the “legs” gave him no unfair advantage and he will go back to being a “disabled athlete” again. Let’s let this one play out.

Hell On Wheels: A Wheelchair Anthem

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

Why I Like Injured Professional Athletes

by Treadmarkz

I’ve written a bit about my love for the game of baseball. But I just thought of another reason I love baseball season. Because between April and October (football and basketball pick up the slack from November to March) if you watch the news you can be sure to here stories about players who are on the “disabled list” or the DL.
I love the DL stories. Because it is one good example of a news story where the primary focus is, and should be, the person’s disability. As I have said before, I don’t like stories where the headline is “disabled man performs such and such a feat”. I like to see disabled people in the news, but on their own merits, not on the fact that they are disabled and “look what they were able to pull off!”

So the disabled list for Major League Baseball and other sports, takes the heat off us truly disabled people who are just trying to live our lives and accomplish our goals without being held up as heroes for it, and shows other journalists just when it is appropriate to point out disabilities.

One Example of When It’s Okay To Help a Disabled Person

by Treadmarkz

Here is a perfect example of when it is “acceptable” to assist a “disabled” person, albeit in this example, a temporarily disabled person.

Sara Tucholsky, a Western Oregon University softball player, hit a game-winning home run for her team, but injured her knee after passing first base. If you haven’t heard the story already, click here, because what happened next was not only a gesture of consummate sportsmanship, but like I said, an example of a situation where a disabled person would probably happily accept help.

NOTE: This is not to say that offering to pick up a disabled person and carry them will always be greeted with gratitude. But you get the idea, based on the circumstances described here. When it’s just the right, humane and neighborly thing to do to offer help is when a disabled person such as myself appreciates it the most. Not when a person jumps to the conclusion that I must need it because I am disabled.