04 October, 2012

Pale Yellow

presented by
Mystic Metals Body Jewelry

Pale Yellow

I hope you all watched the first presidential debate last night on your news network of choice. I did and enjoyed every minute of it. Politics has become a hobby of mine, much to the chagrin of my beautiful and wonderful girlfriend whose views tend to be dissimilar to mine. But that's part of a great America. Different views. Whomever you vote for this November, do yourself a favor and learn and be educated on the issues, and allow yourself to make an informed decision as an exercise in nonpartisan participation in the rights set forth by the nation's founders. It feels better than it sounds, trust me. Elections aren't all about attack ads and what a candidate did ten years ago. On either side of the aisle, elephant or donkey. Be smart, kids. These things are important.

You may not know this, but October is spina bifida awareness month. Yeah, I know. I'm not a huge fan of awareness bullshit. We're all aware. Maybe it's a semantic thing for me, but when you see a bumper sticker that asks you to be aware of something like cancer, I think it kind of insults the intelligence of the population. It's like saying, 'Have you heard of this thing called cancer?' No shit, I've heard of it. Now what are we doing about it. Yeah, it's probably a semantic thing. The ribbons and things are kind of irritating too to me. I think the chief goal of wearing ribbons and colors is to make the ribbon and color wearer feel as if he's doing something for the person he knows to whom the ribbon or color pertains. But that's my cynicism and bitterness. I'm like a taller, more crippled, hairy Sour Patch Kid. I'm also a hypocrite. I am a hypocrite because during the month of October, I become one of those people that irritate and abrade my sensibilities. I become one of those one issue assholes that comes out of the cracks only when shit pertains to him. I should do something about that at some point. Not now, though. Now I'm going to have a cigarette. I'll be right back.

I'm back. So October is spina bifida awareness month. Yes, I wear a pale yellow ribbon to celebrate. Yes, I tell people. No, I don't get too irritated when people ignore spina bifida because it's also breast cancer month. No, I don't get too irritated when people think my ribbon is for soldier support. The spina bifida people really picked two things that'll sure get them noticed, didn't they. I do feel like a douche because I only get caused up when it affects me, which I think is a general problem in this country. I also think that causes mostly prey on insecurities and guilt of people in order to get them to listen, which I think is the wrong way to go about it; but that's our game so we play ball. So I'm going to share some of my thoughts in this blog about living with spina bifida. In case you're a new reader, I have spina bifida. I suppose I should have mentioned that earlier. I'm as good of a writer as Kris Jenner is a mother. (I won't go into much detail of the birth defect, but please visit www.sbaa.org for information and resources. See if there's something you can do too. I know people like to do those dumb ass mud runs and color jog bullshit things. Maybe do one for spina bifida.)

I went to a wedding last Saturday for a great friend. His name is Mike, and though he has three brothers, he makes me feel as one and makes me feel as if we share the last name. All the brothers (and one sister; love you Kelly!) do, and it is well welcomed and enjoyed. The wedding was a blast as most Kulisek weddings have been. I was the only wheelchair bound person there. A fact that I've gotten used to in most places I've been. Thankfully, the majority of people in the majority of places I go are able. That's a good thing. The venue was gorgeous, a golf course country club near Philly somewhere, and they were prepared for my 'special needs' (a phrase that makes my skin crawl) with a lift and moveable ramps. When the lift was unmanned, which was rare, I was a bit stranded in the ballroom.

Lifts are weird things and are probably a something you haven't nor will have to experience. It's like being cargo in a loading bay. It moves slowly, slightly loudly, and it's reminiscent to me of that scene in Aliens where Ripley asks if she can do anything and then impresses Apone and Hicks with her loadlifter piloting. ("Can I do anything? I feel like a fifth wheel." "Well, I don't know, can you?") It's actually nothing like that. ("Bay twelve, please.") But it brings focus to your chairness and your inability to wheel up stairs. It was also my only path to the balcony on which I could smoke. And you kids know I love to smoke. The portals to the balcony were another issue. The thresholds all had a step up of about six to eight inches over which my chair had to roll. Small thresholds aren't much of a problem for me in the chair. I've gotten pretty proficient at popping my front wheels up and muscling over most door jams. This was too high for me to do on my own. I had to enlist the help of my friend Chris each time I wanted a cigarette.

These seem like simple observations, but they have a resonant effect on the day. They are, in a way, freedom robbing. Freedom of movement and freedom of independent control of where I wanted to go and when I wanted to go be there. That can be a great weight on the mind. Also, though most staffs of places like this are prepared and accommodating (as on the whole this joint was), there are always instances where people don't know what to do. I'll give an example; a 'for instance' if you will. Moving from the cocktail hour to the reception involved a change of venue, going from the beautiful balcony area to the ballroom. After the announcement of the ballroom's opening, there's was, as always is for a thing like that, a bit of a log jam at the door adjoining. Now, this is where my systems and my rules interfere with how real life works. When you're in a chair, there's a delicate game of how much help to accept from a hero stranger. They always want to help, which is awesome and fantastic. The generosity of strangers is a rarer resource than...umm...something rare. Dragon teeth? I'll edit that out in the second draft. The problem is that people like myself in wheelchairs are prepared to manipulate our surroundings to accommodate for movement when no one is around. We have tricks and systems. Here's a 'for instance' within a 'for instance.' Manual doors. Not every place you go has power opening doors. So there's a way to open doors, push or pull, when you're in a wheelchair. Try and find a wheelchair and go open a door on your own. You'll see how strange and intimidating it can be. It's a strangely alien yet deceptively familiar problem solving exercise. So we have techniques to do things. Back to the cocktail hour to ballroom change. My plan is to wait for the crowd to dissipate and be the last to go through the door as to not cause a bigger jam and also to not draw undue attention to myself. Unfortunately, the inclination of people to allow the 'special needs' people go first interferes with my plan. I guess it's a relic from the Titanic. We see how well that went. So I am escorted to the middle of the pack of well dressed people. The step is too high, like the balcony thresholds. I had planned to have Chris help me. It's easy. I pop my front wheels, Chris grabs the handles and lifts and sets my rear wheels over the door jam. Simple. Cargo. Easy. Instead, more people want to get involved, and suddenly I'm high sided in the door jam with Chris on the handles, a stranger pushing my seat back with one hand (with a beer bottle in the other) and not one, but two older women in front of me grabbing onto the chassis and the armrests of the chair trying to pull it forward. Meanwhile I have a crowd of people behind me waiting to get through the door, and five different voices offering advice as to how to get me into the room; mine being the one of least apparent value.

Now, these sound like complaints, and that's not the point. The point is that there is a different set of concerns for those of us in wheelchairs. Since it's spina bifida awareness month, it's a good time to help able people be aware of these concerns. Yes, helping those in chairs is a good and right thing to do, but there is an awkwardly fine line that able people must try to see. It is a line defined by a simple question. Am I helping because he needs help, or am I helping because it makes me feel better? A slippery slope. But on a lighter note, two things were chair featured at the wedding reception that added to the great time we all had.

The first was 'dancing' with Dan and Steve. I'm siting at my table when Steve sidles behind me, grabs my chair handles and says, "Let's go." I unlock my brakes, and Steve spins me out to the dance floor, whirling me around for a song and pushing me around while I hand danced in the most absurd manner I could think of. When he returned me to the table, not ten seconds pass when Dan does the exact same thing. It brought smiles and laughter and was a good time. It felt good to be a part.

The second was my favorite part of the wedding. After the meal the music began in earnest. I pull my chair away from the table to face the dancing and my beautiful and wonderful girlfriend sat on my lap, arms around my neck. Immediately, one of the wedding photographers sprinted over and said, "I've been waiting for you guys to stop talking so I could get this photo," and shot a number of photos of us together. It was fantastic and beautiful and one of the rare times that I was proud to be photographed in the chair. A beautiful moment.

So wear some yellow, tell people about spina bifida, and tell them you know someone who lives a full and normal life with the birth defect. Don't pity, celebrate. Stay beautiful, kids.

- Posted using BlogPress from my iPad


  1. That was awesome! JB

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