Growing Up With A Disabled Parent | The Odyssey Online
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Growing Up With A Disabled Parent

And what you miss because of it

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Growing Up With A Disabled Parent
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TW: death, disability.

I never learned how to drive. I know it's not my mom's fault, but still.

My mother suffered from Multiple Sclerosis (MS). I didn't know a lot about it when I was younger, when she was dying, or even now (except the compulsive things my anxiety makes me look up to make sure every time I get a leg cramp that I'm not getting it). That sucks now, but when I was a kid, it wasn't a priority. In my earliest memory of her disease, I was playing Bratz with my friend (remember those?) on the landing of the stairs up to our apartment. Playing on the landing was kind of a problem, because any time anyone had to come or go, we were in the way. We would grab our clothes cases and lean forward, though. We had a system: step around us, we can't be bothered. Even the first time my mom had to come home with a cane. I don't think they told me about her disease until after that, but when you make a habit out of repression, you find that your memory fades regarding everything else, too. I do remember the cane, though: something from Walmart, probably -- basic, as in this disease was still new and my mother was still accepting it.

As I grew up, it became more clear to me what the disease meant. We moved to Arizona and the only thing that did was put my brother and I, big city kids, in a small town life, as well as make my mother's case the fastest progressing case of MS in Arizona. What a title, a true achievement. That's what I tell anyone when they ask about my mother, anyway. It's an excuse, because, hey, I wonder that, too: why isn't she around?

As a teenager, there was a certain freedom I had. I had a step-dad (which is a story for another time), but he was busy taking care of her. I took care of her, too: gained some life nursing experience. But mostly, I just watched porn without worrying about my mom walking in and had a free pass to nullify anyone's "your mom" jokes.

It went from cane, to walker, to wheelchair. From walker to wheelchair is the transition I remember the most because it was the last time I called the ambulance for her. By then, I was a pro: pack her medications in a plastic bag and bring anything she might need for an overnight trip, call my step-dad and let him know there was a fun sleepover at the hospital tonight, remember to breathe. I'm good in situations of life-or-death stress, usually. But I don't remember this transition because of the ambulance trip I didn't ride in with her, I remember it because I ignored her screams of pain for the first minute or two. She was in the kitchen, I was sixteen (or something) and sleeping at noon. She yelled for me, screamed in pain, and thinking about it now makes my skin crawl. I just let her. But despite my rightfully guilty conscience, I wasn't a monster, and when it seemed more serious than usual, I helped.

It was hard, but my mom was sort of okay. "I have serious guns now," she told me on the phone the day before she came home from a two-week hospice visit. They had to teach her how to use her arms as legs, arrange a helper to come to our house every day and show me how to use the belt to lift her, help her shower, use the bathroom, and all those other things that I started to resent her for. It wasn't my mother's fault, but it always felt like it. I chalk some of that up to teenage "I hate my mother" phases, but mostly I chalk it up to having to be thirty when I was sixteen, to an abusive step-father, an absent biological father, and a brother too busy with anything else to help teach me how to drive.

Eventually, my mom died and I realized I never hated her. I blamed myself, I blamed caretakers, I blamed the hospice that let an infection go to her bone -- and I haven't really let go of any of this blame, not fully. But it's not their fault, not anyone's fault. It's just embarrassing telling someone that I can't drive, especially when they don't know why.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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