Frame by Frame

When I talk about my daughter having a disability, I get a lot of sad faces, murmurs of morose sympathy, and sorrowful eyes averted, so as not to look directly at the reality of being disabled.

It’s the last one that I wish I could fix. I don’t care if people have pity, and I would appreciate genuine sympathy, but without taking a good hard look at what it’s like to live with a physical disability, pity and sympathy aren’t genuine, they’re hollow gestures.

In that spirit, I’m going to share a slow-motion example of what happens when my daughter, an adult with a disability, has an “incident.” In our world, it’s fracturing, since that’s what happens with brittle bones, but for other people with disabilities, it might be other incidents; wheelchair breaks down; fever spikes; onset of seizures. The details differ, but how we manage life around those details is pretty constant. If you’ll stick around for the story, and follow this space for a couple of days, you might learn to feel more than sympathy or pity; you might get a greater understanding of what it’s like to be a person with a disability. For a little while, just don’t look away.

Tonight, my daughter called from her dorm, voice frantic, a little out of breath, to tell me that she’d fractured a rib while sitting on the toilet. She gave me permission to share that publicly, and said “I need people to laugh for me, because it hurts when I laugh.”

Not my daughter

Not my daughter

She managed to get back to her room, to lie down and get some ibuprofen into her system, and to call me, but that was about all the activity she could tolerate.

My husband and I were on our way back from a day trip to the coast. We’d just enjoyed a gorgeous drive through the clouds into the sunshine, a few hours on the beach with the happiest dog alive (who almost caught a nutria! he was “this close”), and a delicious wet burrito in Manzanita. As we ascended back into the cloud, Sophia called, and we immediately went into high-alert mode. How can we solve this?

Let me back up a bit.

For a 21 year old with a disability, the state of Oregon can provide services to assist in situations of medical emergency, like this one. Sophia has been working to arrange those services since last June, when she decided where she was going to school. She couldn’t do it before then, because it had to be arranged through the county office where she resides, and we reside in Portland, but her school is in Eugene. So for several months, while she’s getting used to a new school, navigating with a loaner wheelchair, surrounded by complete strangers, she’s been scheduling meetings with the state agency that’s a 30 minute bus ride from campus.

Her next meeting, the one where they finalize the paperwork establishing her eligibility for services including a personal assistant, scheduled months ago, is planned for Tuesday.

Her fractured rib prevents her from sitting up. She needed help getting out of her chair and into bed, something she does so fast when she’s healthy she takes my breath away. She needed help lying down. Her friends brought her dinner. I suspect she will avoid liquids for the night, just so toileting won’t be an issue.

Tomorrow morning, bright and early, I will drive down to Eugene. She normally meets me at the car and lets me in the building, but I’m going to have to find a different way in this time. Once I get to her, I’ll assist her in the bathroom, then we’ll wrap her ribs, set her gently in a comfortable position on the bed, and binge-watch Gilmore Girls.

I’ll be staying the night, because she can’t miss that meeting on Tuesday. It might be several more months before she gets another appointment. And she can’t get to that appointment by herself, because she needs help just sitting up. She sure can’t ride a bus in this condition.

Oh, and she doesn’t have an orthopedic doctor right now, because as a 21 year old, she aged out of our Shriners, and will start being followed by a doctor at OHSU. But that hasn’t started yet, since she’s been a little busy down at school. So getting a prescription for her pain might be a little challenging. We’ll address that tomorrow. I hope.

I get to stay in a dorm room for the first time since I was 19. Well, have to, I guess. But maybe I’ll get more than just a peek in their library! It is a beautiful campus, so if she takes a nap, I may wander a bit. That will be fun.

This is her first serious fracture while at school. She didn’t have any issues at Iowa, and while she attended the community college, she was living at home. We haven’t gone down this road yet, and I really don’t know what to expect.

Stay tuned, intrepid Typicals. More to come tomorrow.

One thought on “Frame by Frame

  1. Oh, this whole ordeal sounds frustrating — so very frustrating. But I’m glad to hear she’s got a sense of humor about it. Because, honestly, if you don’t have that, what do you have?

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