Just a bit late…

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.

14 thoughts on “Just a bit late…

  1. Penny L. Richards

    This is really lovely, Jana. It’s not about following a list of steps and a script, it’s about making genuine human connections. That goes for medical folks, school staff, friends and family…

    I hope you’re doing better now.

  2. Alisa

    Your narrative is both a good story and an important one. The dearest person in my life suffers from a disability, and I cringe whenever it is brought up because I might take on some unintended emotional baggage. Thanks for showing a resolution and reminding me to show the same kindness to others.

    Even though we don’t really know each other, I have been keeping you in my thoughts and prayers through all of this.

  3. saraarts

    Oh, how this brought back memories. I’ll only tell you one, though.

    A couple of years ago, I slashed open the back of my pinky finger while working at Whole Foods when I was cleaning up some broken glass in about as idiotic a manner as can be imagined. I bled and bled, and it was 9:00 p.m. when my shift ended, so my true love insisted I go to the ER for stitches and a tetanus shot.

    The last time I had been to this ER had been a few years before, a week after I had injured my right leg, the beginning of the chain of events that led to its amputation.

    This particular night, it was cold enough that I was wearing long pants, so my artificial leg wasn’t obvious. And you know what the first jokey little thing the ER doctor said to me upon examining my finger was?

    Oh, yes. “Well, I don’t think we’re going to have to cut it off.” And then he kind of chortled.

    “Oh good,” I replied quite seriously. And then I watched him blanch while I lifted my pant leg to silently show him my prosthetic ankle.

    I am so sorry for your night of fear, but I am so grateful to Cookie Woman for her kindness to you.

    And I’m really, really glad you’re home now.

  4. C. L. Hanson

    I hope you’re doing okay. I’d just like to say that you’re clearly a brilliant person, which is not something to sneeze at. I don’t know if this is helpful or not, but I’ve contemplated having various disabilities (mostly trying to determine how hard it would be to contintue reading blogs — there’s my priorities for you… ;^) ), and I conclude that just being alive and able to take in information about the world and contemplate it is such a fantastic and priceless thing…

  5. Caroline

    So glad you’re home from the hospital, Jana. Do let me know if I can do something for you! Are you up for visitors?

  6. Sue Cannon, PhD, RN

    The cookie lady story is one of the sweetest I’ve heard in a while.

    As for the nurse who refused to call the MD just because it was night, she was wrong. It’s your right to have your pain treated. Sorry you went through that. Next time be assured you have the right to tell her she needs to call the doctor and ask for something for your pain. If the doc refuses, well that’s different.

    Wassail! Sue, RN

  7. amelia

    i’m so sorry you were alone and in pain and afraid in a hospital jana. reading this, i cried, wishing you didn’t have to experience that. but i’m glad there were kind people near you. and that you have such a wonderful family to care for you and love you–that you’re home with them now, being loved. and of course there’s your darling kitties (elly made my acquaintance by sniffing my nose on friday; made me smile).

    please let me know if there’s anything more i can do to help.

  8. Quin

    It’s no fun being in hospitals. Even a well intentioned health care worker can’t remember to have a decent bedside manner all the time. Get well soon and keep up with the cookie therapy.

  9. Kay Olson

    In addition to being scary and awful and all, I’ve found hospitals often house surprisingly touching encounters like yours with the cookie woman and the singer. I suppose that’s to be expected when life dramas play out all around, but it’s still surprising.

    A lovely story, Jana. And an important point, I think, that in the end so me attempts at connection or kindness are a hit and others a miss.

    I hope the leg heals and heals well.

  10. Patry Francis

    Beautifully written, Jana. Thanks for leading me here. I, too, had many incredible encounters with kindness and courage in the hospital, but your story of the Vietnamese singer is particularly poignant.

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