May 1st was BADD (Blogging Against Disablism Day). Here’s my short (and late) contribution…
In the wee hours of May 1st as I was lying in the hospital bed trying to tolerate the noises of my fellow roommates (mostly really bad soap opera TV in foreign languages but also a fair share of random screaming for pain meds, IV pumps beeping, and toilet flushing), an aide came in to take my vital signs.
Let me just tell you, reader, that at this point I was not a happy camper. Though I was in terrible pain, the doc who had admitted me had only authorized small doses of ibuprofen or tylenol and I was told by my night nurse that nothing could be done about that until morning. So I was just aching, trying to just focus on my breath, to not hurt so much. I also felt scared, the kind of scared that only happens at night in the hospital where nights are exponentially long. So this aide comes in to take my vitals and I hold out my arm for the pressure cuff and open my mouth for the thermometer.
Then as she’s finishing she sees my left leg uncovered and propped up on a pillow, in all of its infected ugliness. She shakes her head and says, “I sure hope you don’t lose it.”
I’m sure she meant it as a fairly innocuous remark (and certainly I’d stressed to my doctors how important the health of my one leg is, and this fueled much of their aggressiveness with my various treatments over the past few weeks). But that remark, combined with my own discomfort just put me over the edge. I tried to call John and couldn’t figure out how to work the damn phone. I started crying into my pillow. Wondering if maybe I really was going to lose my left leg and no one had told me yet (I should note that this info was also withheld for a time from me when I lost my right leg due to cancer). I just sobbed and sobbed. When I eventually stopped and reached over for a sip of water I saw one one of my roommates from across the aisle, walking towards me, leaning on her IV pole.
“I have a cookie for you. It’s good and fresh,” she said.
Well, to tell the truth I wasn’t at all interested in a cookie right then. But she was kind and I felt I couldn’t refuse. I took the cookie and started nibbling on it. And it turned out that it was good. After she saw that I’d finished it she brought me two more cookies and chatted with me for a few minutes.
Not too long after that, my other neighbor–the one whose bed was nearly next to mine except for an IV pump and a thin curtain between us–she started singing in Vietnamese. I didn’t recognize the songs, but I found her quiet voice just tuneless enough that I could imagine my own lyrics. In between the songs she would recite some rote prayers and then start singing again. I wondered if she was singing for me, but I’m sure she was singing for herself and for her own long night. That day she’d learned that she had incurable cancer and had just a few weeks left (I’d heard this all through our shared curtain). Her numerous children had spent much of the afternoon debating various treatment options: surgeries, chemo, etc. I’d heard the doctors’ gentle suggestion that she be made as comfortable as possible, and also heard that her children were pushing for more aggressive therapies. Sigh.
So back to Blogging Against Disablism…
I know sometimes when we encounter disability, we don’t know exactly what to do or what to say. Sometimes we can’t tell whether a remark we make might be offensive (as that of my aide was for me right then), sometimes we wonder if our kindnesses will be rebuffed–if the cookies we offer can ever assuage a hurt that’s as dark and deep as the night is long. Sometimes we can only lie in bed and hum a song or say a prayer and not even know if there’s anyone out there to hear it. But somehow, one way or another, we just keep trying, keep doing, keep learning, keep connected. Because we’re all going to have those nights, those ones that seem like they will never end.
When the sun rises (and it will, eventually), what’s left is not the fear or the hurt, but the memories of the people who cared, who generously reached right outside of themselves. And whose courage seemed bigger than their fear.