“I know that I can go anywhere and do anything I want, anytime I want to. I just need to leave my husband behind to do it.”
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I remember the moment we were told he’d never walk again.
Twenty four hours earlier, my boyfriend had been walking to work. He was in a crosswalk with the right of way when he was struck by a commuter bus whose driver failed to look before making a turn. After he was medically stabilized enough to withstand a surgery, doctors worked for eight hours on his spine.
It was after midnight when he finally came out of post-op and we’d learned that his spinal cord had been permanently severed. What I didn’t know and couldn’t even conceive of at the time, was that hearing he’d never walk again wasn’t going to be the hardest part.
The hardest part is the realization that the impact of disability keeps revealing itself. Over nine years later, we’re still not done with moments like that.
The daily reminders of what “never walking again” really means
Last week, my husband and I were simply on our way out to dinner when his front wheel got caught on an uneven piece of pavement. He didn’t fall out of his chair this time but he had to catch himself on the pavement with his hands to stay in his seat. Moments like that happen often enough and it’s like being told over and over again “He’ll never walk again.” It’s not just one moment … sometimes it’s as if that one moment is played over and over again. On repeat.
My world became smaller and less accessible, too.
I don’t pretend to compare myself to anyone who’s disabled. I know that I can go anywhere and do anything I want, anytime I want to.
I just need to leave my husband behind to do it. It’s an impossible choice.
He’d only been out of rehab a month or so when we decided to get out of the house and go to the local bookstore. There weren’t any handicapped accessible spots that were free so we never made it inside.
When you see pictures of friends doing cool things, you realize you weren’t invited because it wasn’t accessible.
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We couldn’t get him out of the car. I’m pretty sure he swore and I cried.
We once went away for a weekend only to find that the restaurant we’d spontaneously chosen wasn’t handicapped accessible. My breath caught in my throat as I walked back to the car to tell him we couldn’t get in.
There’s not a lot of room for spontaneity when you’re living with a disability.
Sure the inaccessible restaurants and travel places are hurtful. Sometimes, what hurts more is the knowledge that the homes of friends and family became inaccessible to us, too. We fireman lift him into some but only one or two has a bathroom he can get into. At some point, we’ll all have gotten older and we won’t be strong enough to lift him. When he gets older, he’ll need an electric wheelchair and won’t be able to be lifted.
Facebook is pretty good at reminding us, too. After all, when you see pictures of friends doing cool things, you realize you weren’t invited because it wasn’t accessible.
Before his injury, we were travelling New England literally chasing waterfalls … hiking to as many of them as we could find. Now our explorations are limited to the ones that are paved.
Not “getting to be the girl”
A few years ago, our friends were getting married. We were all dressed up and I was feeling especially pretty in my dress. It was raining that day…not a little drizzle … full on, pouring rain. Let me walk you through it. His chair is kept in the back of the car when we’re driving together. When we park, I have to get out and put his chair together to bring it to him. It’s a two-handed affair, leaving no free hand for an umbrella. He needs to use his two free hands to wheel himself so I need to carry the present. Yep. Still no way to carry the umbrella. To say that we arrived to this elegant affair looking like a pair of drowned rats is being kind. We were horribly embarrassed. I went from feeling like a belle to wanting to crawl out of my own skin.
Unless we’re dealing with something using words or feelings, we’re up a creek without a paddle relying on me to fix anything.
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When getting married and choosing my dress, I had to check to see if his chair would get caught on the train while we were walking. Walking anywhere while holding his hand is nearly impossible. Sometimes we’ll try walking with him rolling using just one hand while he holds mine with the other but inevitably, we’re walking crookedly and wind up feeling self-conscious.
It’s all of those things that other women, if they want to, get to have and do. Compared to hearing “he’ll never walk again”, I wouldn’t have thought they’d really matter but it’s those little heartaches that add up in ways I never could have anticipated.
Having to “be the man”
I hate using that phrase and playing into a harmful stereotype about men. While I wish I could change it, that’s really how it feels … when I am carrying luggage for two people while he wheels himself through the airport … or staring at some household maintenance task that I am suddenly supposed to know how to do simply because he isn’t physically able to do it.
In moments impossible to describe, I am reminded that if not for that damned bus, my husband and I probably would never have made it as a couple.
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Yes, I know those are just stereotypes and are not true of all men. However, my guy—before he was hurt, really was handy. He knows how to fix all kinds of things and can problem solve with the best of them. Unless we’re dealing with something using words or feelings, we’re up a creek without a paddle relying on me to fix anything. I’m the one, after all, who turned on the sink when he was fixing the garbage disposal. Now we hire people to do things for us that he could do if things were different—just more examples of times when we’re hearing “he’ll never walk again” all over again.
The pressure to know what you don’t know
His wheelchair tire popped when he was on his way home from work a year or so after his injury. It was only then that we realized no one told us what to do in the event that that happens. Turns out, bicycle shops are awesome with wheelchair wheels.
One time, a supporting rod of his chair cracked … on a Friday … at 5:00, of course. In case you need to know, it’s a welder you want to call and if you need to find a welder open on the weekends, look for ones whose area code is for cellphones. I left him stranded on the couch with food and water while I took his chair to the welder to get fixed.
It won’t be the worst thing to have happened
Sometimes, in moments impossible to describe, I am reminded that if not for that damned bus, my husband and I probably would never have made it as a couple. We wouldn’t be together. I hate admitting that but it’s probably true.
Before the bus, we’d been in a cycle of fighting, making up, and breaking up. We loved each other but we were a mess of drama and immaturity. The bus happened and there was no room for that nonsense. We needed to focus on his recovery. We developed an intimacy and a closeness that few will ever understand. Our relationship thrived when it was us against the world, even if the world was just us against Barnes and Noble on a given day.
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Photo: Daveynin/Flickr
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This is very similar to the life I embraced when I married a legally blind person. So my lessons with partially blind and totally blind persons took on a very personal note. I was an Orientation & Mobility Specialist. My first shock was realizing that we would never go to high end restaurants with “romantic” lighting. It was because in even slightly dim light my wife was totally blind. So we had a lot of romantic evenings at home because we had industrial lighting and I became a gourmet cook. Later I would become a restaurant chef without ever having… Read more »
All these things are true, and quite painful- watching another couple dash in and out on errand runs, no thought to accessible bathrooms. Managing luggage plus all the new necessary items on a trip that un- challenged people say we should just take because “there are so many people to help now” Or how crowded the restaurant will be when we finish our meal so that he cannot get out without making 10 people stand and move their chairs so we can leave ( when we came in the unthinking hostess seated us deep in the dining room). A severe… Read more »
CJBH! Yes! The restaurant thing…all the time. We have an extra luggage bag, too, just for medical supplies others don’t think about and two fewer hands to carry them. Thanks so much for relating and sharing.