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I see that people wonder about us. It’s in the eyes, the questions: What’s wrong with him? Why is she with him? Do they have sex? It didn’t surprise me, really, that people stare. Wheelchairs make people stare in that way where they try to look like they’re not staring. Plus, his forearms and hands look odd. I guess people look at that too, trying to figure out what’s going on. Multiple Sclerosis? Muscular Dystrophy? Birth defect? Sometimes people talk really loud to him, like he’s retarded. We both laugh at that. Or they’ll talk to me about him, like he’s not there. What size shoe does he wear? Would he like some parmesan cheese on his ravioli? Does he need some help with that?
I cried the other day out of anger because I couldn’t find a kitchen table that David could fit under. I’d been looking for weeks and, no matter how hard I tried, I couldn’t find a thing that worked. The frustration of it overwhelmed me and left me, sitting on his lap with my legs slung over each wheel of the chair, bawling my eyes out because we didn’t have a dinette. It wasn’t the table so much as it was the adjustment of taking on the disability of the person I love. There are places we can’t go, things we can’t do or have. David’s had twenty-three years to get used to it. I’m just now getting the hang of it.
The questions? They’re the easy ones to answer, even though most people never actually come out and ask them. What’s wrong with him? Nothing. He had a car accident when he was eighteen. He took a girl home late at night during a holiday at home from college. He was a sweet, outgoing, athletic boy who didn’t pay enough attention to a cross street and paid for it with a broken neck. He is a quadriplegic. This doesn't mean that he's Christopher Pike from Star Trek. He's not a talking head on a respirator. He pushes a chair, he works, he drives, he does all sorts of things that everyone else does. Most people with spinal cord injuries are quads, with some level of paralysis in all four limbs. David is no exception. His wrists and fingers are paralyzed (with the exception of one little pinky that he can wiggle back and forth), so his forearms have atrophied over the years. He spent months just learning how to pick things up between his fingers.
When my youngest, Jacob first met David, he looked him over with no sense of decorum at all and said, “Hey, your arms look funny.”
David replied, “Yeah, I know.”
Then my son took his hand and straightened David’s fingers in his own chubby five-year-old hand. “That’s alright,” he said, “I don’t care about stuff like that.”
Why is she with him? Another easy one for anyone who knows him or me. I love him. He loves me. The wheelchair never got in the way of my knowing the man who uses it. Someone asked me once if it mattered to me. I had never thought of it in those terms. Did it matter? That assumed that it could be changed. That’s like asking me if it matters that the wind blows or that we age…why should it matter if it is what it is? My answer was this: If I fell in love with someone and they were hurt or something happened to them to make them physically different, it wouldn’t change how I would feel about them. So why should it matter to me that David’s accident happened before I met him? Like my son said, I don’t care about stuff like that.
Do they have sex? This one cracks me up. Like it’s anyone’s fucking business, but you’d be surprised how often it comes up when someone actually gets the nerve to ask me something. The only time I’ve ever lost my temper about it is when someone implied that I must be some sort of gimp devotee to be with a guy in a wheelchair. That really caught me by surprise. I love sex. I would love for David to be able to hop up out of his chair and bend me over the kitchen table that we can’t have because his chair won’t fit under it. But that won't happen. This doesn’t mean we don’t have a happy, healthy, relatively normal (what’s normal anyway?) sexual life together. And it certainly doesn’t mean that I have a fetish for guys in wheelchairs. I have a fetish for a guy who happens to be in a wheelchair—two very different concepts, those.
There’s a lot of day-to-day tedium that goes along with having a spinal cord injury. You don’t just hop up out of bed, take a quick piss and get out the door while you pull a sweater over your head. Every day is a routine: going to the bathroom at a certain time so you don’t crap your pants, making sure your leg bag is strapped on where it doesn’t come loose, having to have someone check your ass for pressure sores. Imagine having someone helping you do all of the things for which most of us would require privacy. You tell me you wouldn’t have to have a sense of humor about things after a while. So David laughs at me when I cry about silly things like a table. By the time I met him, there’d been hundreds of tables where he couldn’t fit. He laughs and pulls me into his arms, skinny forearms and misshapen hands notwithstanding. “Look, “ he says, “We may not always fit at every table, but at least you’ll always have a place to sit.” And with that, he answers every question that anyone might ever think to ask about us.
I cried the other day out of anger because I couldn’t find a kitchen table that David could fit under. I’d been looking for weeks and, no matter how hard I tried, I couldn’t find a thing that worked. The frustration of it overwhelmed me and left me, sitting on his lap with my legs slung over each wheel of the chair, bawling my eyes out because we didn’t have a dinette. It wasn’t the table so much as it was the adjustment of taking on the disability of the person I love. There are places we can’t go, things we can’t do or have. David’s had twenty-three years to get used to it. I’m just now getting the hang of it.
The questions? They’re the easy ones to answer, even though most people never actually come out and ask them. What’s wrong with him? Nothing. He had a car accident when he was eighteen. He took a girl home late at night during a holiday at home from college. He was a sweet, outgoing, athletic boy who didn’t pay enough attention to a cross street and paid for it with a broken neck. He is a quadriplegic. This doesn't mean that he's Christopher Pike from Star Trek. He's not a talking head on a respirator. He pushes a chair, he works, he drives, he does all sorts of things that everyone else does. Most people with spinal cord injuries are quads, with some level of paralysis in all four limbs. David is no exception. His wrists and fingers are paralyzed (with the exception of one little pinky that he can wiggle back and forth), so his forearms have atrophied over the years. He spent months just learning how to pick things up between his fingers.
When my youngest, Jacob first met David, he looked him over with no sense of decorum at all and said, “Hey, your arms look funny.”
David replied, “Yeah, I know.”
Then my son took his hand and straightened David’s fingers in his own chubby five-year-old hand. “That’s alright,” he said, “I don’t care about stuff like that.”
Why is she with him? Another easy one for anyone who knows him or me. I love him. He loves me. The wheelchair never got in the way of my knowing the man who uses it. Someone asked me once if it mattered to me. I had never thought of it in those terms. Did it matter? That assumed that it could be changed. That’s like asking me if it matters that the wind blows or that we age…why should it matter if it is what it is? My answer was this: If I fell in love with someone and they were hurt or something happened to them to make them physically different, it wouldn’t change how I would feel about them. So why should it matter to me that David’s accident happened before I met him? Like my son said, I don’t care about stuff like that.
Do they have sex? This one cracks me up. Like it’s anyone’s fucking business, but you’d be surprised how often it comes up when someone actually gets the nerve to ask me something. The only time I’ve ever lost my temper about it is when someone implied that I must be some sort of gimp devotee to be with a guy in a wheelchair. That really caught me by surprise. I love sex. I would love for David to be able to hop up out of his chair and bend me over the kitchen table that we can’t have because his chair won’t fit under it. But that won't happen. This doesn’t mean we don’t have a happy, healthy, relatively normal (what’s normal anyway?) sexual life together. And it certainly doesn’t mean that I have a fetish for guys in wheelchairs. I have a fetish for a guy who happens to be in a wheelchair—two very different concepts, those.
There’s a lot of day-to-day tedium that goes along with having a spinal cord injury. You don’t just hop up out of bed, take a quick piss and get out the door while you pull a sweater over your head. Every day is a routine: going to the bathroom at a certain time so you don’t crap your pants, making sure your leg bag is strapped on where it doesn’t come loose, having to have someone check your ass for pressure sores. Imagine having someone helping you do all of the things for which most of us would require privacy. You tell me you wouldn’t have to have a sense of humor about things after a while. So David laughs at me when I cry about silly things like a table. By the time I met him, there’d been hundreds of tables where he couldn’t fit. He laughs and pulls me into his arms, skinny forearms and misshapen hands notwithstanding. “Look, “ he says, “We may not always fit at every table, but at least you’ll always have a place to sit.” And with that, he answers every question that anyone might ever think to ask about us.
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Wait.
Pardon me while I return to normal respiration.
Love is its own answer, damn their eyes.
*blows kiss*
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Re: Wait.
Damn their eyes! I love that saying just because it reminds me so much of Johnny Cash.
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Another great entry..
When I was about 14 my mother had a mild stroke, which temporarily affected her ability to speak. People she had known for years (including medical staff) treated her as though she was retarded - all the things you mentioned, speaking loudly, speaking about her in front of her, etc.
It drove her mad because she wasn't able to communicate her indignation at the treatment. She had always been an articulate and eloquent person, and to be unable speak anything but the most basic sentences was the most frustrating thing she ever faced.
Thankfully the effects were temporary, and after some months she was able to speak normally again. It certainly gave me an insight into what it must be like to be on the other side of a disability. I try to remember that and confront my own preconceptions about disabled people when I meet them, and have met some great people as a result.
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Re: Another great entry..
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I just waited around for you to comment on it.
Does that mean it's my business? hmmmmmmm.
(insert shit-eating grin *here*)
Ditto to Kenhighcountry's comment, above.
David's response to your frustration is a moment to remember, and I'm glad you wrote it down.
By the way, your topic has "This American Life" written all over it, if you cared to share it with a wider audience. Seriously. Submission guidelines: http://www.thislife.org/
Miss you.
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We should set up a weekly phone conference while your at work so I can waste some of Hays County's time. ; )
Thanks for the guidelines. I'll take a look.
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This American Life
This American Life: while you are checking it out, do a word search for "David Sedaris". All of the episodes wherein he was a guest will come up. The first one you'll see is a Christmas special. Play it! You WILL wet you pants, I assure you.
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Re: This American Life
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You're on this coast now - maybe a road trip is in order. I haven't been up that way in a while. I hope despite the lack of accessible furniture you are finding some joy and beauty in your new surroundings.
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the only question i have is: how did you meet? :)
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I couldn't possibly explain the situation fully, but since I'm sure you're curious, I can offer a bit of an overview. I have bipolar disorder, and while this is not a physical disability, I often feel quite disabled. I wonder sometimes, how anyone could love me, when all I seem to do is complicate things. I can see that a physical disability like David's is often complicating as well, and I can see from your post that you're in love with him anyway. It's probably not the best comparison in the world, but it's enough to inspire some hope. Thank you.
Amanda
p.s. Your son is amazing. That quote will stick in my mind for a long time.
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I just saw that you met online. My boyfriend and I met online, and we became friends, and- well, even if I'm barely 18, I think he's one of the best things that's ever happened to me. And he doesn't seem to worry at all about how my "condition" might affect us- as much as I worry, you'd think he might be a little nervous, but it doesn't even phase him.. I hate to say that I'm still weary of the whole situation, but trust is one of my biggest issues. Still, I find it hard not to believe him..
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Etc, etc ad nauseum. And I can only imagine what it's like for you. Thanks for posting this.
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