My primary care physician and I are having our usual conversation when she says, “If you didn’t do what you are doing, you would not be living on your own. Others would be caring for you.”
“Thank you” is all I manage to reply. There are so many facets to what she said. Later, I tell a friend who responds, “that’s so powerful.” It is indeed.
My mind’s memory reels spin, searching for July 2015, days before the surgery to decompress my spinal cord and prevent quadriplegia–this time. I’m told to stay at home and “whatever I do, don’t fall.” So, I don’t.
My stagger resembles a drunken Frankenstein’s monster and more than once, my scrambled eggs end up on the floor, as signals short-circuit. My limbs are less and less.
I meditate a lot and dream, vividly.
I am in a surgery where all the instruments, table, and equipment are white light in a brown paneled room. Dressed in a hospital gown I sit on the surgery table, legs dangling over the side. I’m not alone.
Maurya sits next to me, also dressed in a hospital gown, legs dangling over the side. We talk about the surgery, as if she were still alive but she is not so our conversation is the sense of speech.
“But I will make it through, right?” I remember repeating the question as she leaves, taking some of the answer with her but not all. I will go through stuff, maybe a lot, and I will be all right, but all right will never be the same.
And it hasn’t been, knowing there is no recovering only progressing, and no one, even in dreams, knows what that may mean for spinal cord and autoimmune disease.
I “do” not waste days wondering or analyzing dreams. I immerse myself in the life I have, and the more present I am the larger my world. My days are never long enough for all I want to do.
Mindfulness is not a placebo; it is awareness, raw and unfiltered. Finding the worthwhile in the seemingly worthless, like Leonard Cohen’s cracks that let in the light, imperfect in an impermanent life, one experience after another. It’s in the unexpected that I find out who I am.
This latest round of medical visits began with my driving to Georgia with a tampon up my nose. Who knew that was a thing? This is my kind of unexpected–almost expected, now.
Every three months, I see my rheumatologist and this last Tuesday, just as I was getting ready to leave, my nose began to bleed. These nosebleeds are now chronic, a side effect of Sjogren’s syndrome.
Immediately, I pinch the bridge of my nose, deciding whether I need a light(L), regular(R), or super(S). I don’t want to change tampons while I am on the road so I settle for an R. I close the red door of my apartment, turn the key in its lock, and walk to my car.
My drive takes me through Buffy St. Marie’s “Tall Trees in Georgia,” long leaf pines, sprawling live oaks, and in spring, wildflowers in the median. In winter, a steel green blanket.
By the time I reach the Macintosh Clinic, my nosebleed has stopped. The two-story, red brick building with white pillars once had another life and usually I stop to admire its architecture but on this day I’m grateful not to walk into the clinic with a tampon up my nose, although I was perfectly fine driving through 8:00 a.m. traffic.
When I tell the nurse about the nosebleed she asks, “When you were at the light, did you turn and look at people like this?” And her brown ponytail swirls from side to side as she gives me her best tampon-up-the-nose look. “I would! I’d find a cop and look straight at him!”
It is only recently I have come to know that tampons up the nose are an actual thing, medically. And on this day, I discover that my rheumatologist (and later) my primary care physician believe staring is the preferred behavior when wearing.
I tell my 90-year-old neighbor, Grace, and she, too, wants to know if I turned and looked at people. I get it, I really get it. I’m almost looking forward to the next time, for there will be one when I least expect it.
And all will be all right and all right will never be the same.
KM Huber's Blog 
You manage to make this experience funny in a way that sort of hurts. But a lot of life experiences are like that, aren’t they? Keep progressing.
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Your posts always move me or elevate me or touch me in some fashion. This one was particularly powerful and I thank you. Reminds me of a story I love to tell (which I’ll save for another time). The essence of it is, You are OK, no matter what. That has become my mantra lately.
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Looking forward to that story, Janet. And I agree that we really are okay, no matter what. Accepting that fully seems to be the challenge–or mantra! Thanks, Janet!
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Karen, I am once again moved by the poignancy and depth of your words; thank you for sharing your journey. And thank you, too, for spurring me to unexpected path of thought.
If you will allow me to share that – I get terrible blood noses from time to time myself (an auto-immune issue is implicit in the matter). Usually I end up pinching the bridge and using a rolled-up tissue to staunch the flow. The idea of using a tampon never occurred to me, even when I was married and there was a supply in the house. And yet I have long known about the military uses for bullet wounds! There is also a historical link to the First World War, involving the technology of military wound dressings and how they led to the invention of the tampon, in part by front line nurses. For me, the importance here is just how the emotional intensity of that war – the deep human aspect, as it splashed out into wider society – made it acceptable to think and present ideas that, thanks to prior issues of social acceptability, were either un-thought or – more likely – un-admitted – prior. These are interesting questions which, to me, seem to reflect on aspects of wider human nature: notably the way society ‘normalises’ what it previously defined as ‘shocking’, often after a social trauma of some kind, a point that somehow seems to have wider application than just this context.
I think the detail of that story has to become a post over on my blog, soon(ish).
And yes, you definitely need to turn and look at people next time! 🙂
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Well put, Matthew. Thanks.
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I’m looking forward to that story on your blog, Matthew. I have been dealing with nosebleeds for the last two years but it was only in the last six months that I was told by a nurse to use a tampon (nurses are so often the source of medical improvements/changes). It was a particularly bad bleed and I was not amused, and then I realized she was not joking. My next thought was,”Why didn’t I think of that?” After all, I spent over 40 years using tampon! It is as you say, when what was shocking becomes normal. We have that ability as human beings but we seem to save it up rather than exhaust its use. Thanks so much, Matthew.
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Life is one experience after another. Love it. Your words so often help me.
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❤
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This is stunningly beautiful and poignant, KM!
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❤️🙏
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Thank you for the gentle reminder, KM – no matter how dire life’s circumstances may seem … always take time to breathe and make the best of what we’ve got. I read your post while I was in the middle of a meltdown. Prayers and Blessings to you, my friend!
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There was a time that nosebleed would have raised my blood pressure but when I realized that life is one experience after another, let’s just say I widened my life lens. Sometimes, that’s the focus I need. Take good care, Maeve.
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This was such an interesting post. Thank you for sharing it.
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