I Wish Every Patient in the World Could Hear These Words
“This is not something you did”…. My doctor said:
“This could have happened if you stayed in bed. Or if you got right into physical therapy and movement. Sometimes, healing is just not meant to be.”
I was stressing to my spine and pain doctor about how sad I’ve been, feeling as if this surgery has failed; the pain as bad as ever. Every cough or sneeze (or show) feels like a gentle breeze away from when it Goes Out. I end bent sideways, red-hot with prednisone and knowing nothing can fix it but time.
Two weeks ago, I was “starving” my pancreas - dancing on days of broth. Nothing could fix it but time. Now, an extra long conversation on my feet or sitting too long to type feels one misuse towards shifting back to “nothing can fix it but time” again. And when you don’t have time - you have schedules, and soubresauts, and sets to strike, and then CT scans and clinics between- you realize that every day is a misused minute from the type of minutes you can’t control. The type of pain you can’t go back on, push through. (I used to think pancreas pain was that and then I danced with it so… maybe I’m wrong?)
How often has a doctor told you: “This is not something you did”… ?
Something weird happens when someone we love is harmed by something we conceptually feel familiar with; an assault on a formally healthy body. If chemo fails and an immune system attacks, we do not blame the person. Perhaps we shake hands at the heavens. Fault the medicine. Hope another trial or round will do the fix.
But when a patient’s body always has the harm within it, we fault the patient. Even when some surgeries succeed and some fail (in a body that’s full of more genetic fails than wins), we count the failures … rarely the effort had to try at all.
Sometimes, the surgeries that have succeeded in me feel useless because they’re stacked against those that didn’t. I fault myself. Hate myself. Hate the medicine. Believe the narrative. Create it.
“This is not something you did”…. My doctor said…
And I wish every patient in the world could hear those words.
I wish we’d all believe it.
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We live in a very ableist society where if something can't be "fixed" society views it as the patients fault. "Oh they didn't try hard enough", "They continued to do damaging things.", "They didn't exhaust all options.", "They didn't rest appropriately.", or the worst "They're broken, and you can't FIX broken." These statements simply aren't true, but we internalize them through years of hearing it over and over (btw hearing doesn't mean only with the ears or possibly not with the ears at all. Hearing is with the eyes [maybe the ears], body language, context, one's own heart and soul, and the understanding of what's being communicated) we start to truly believe what is being said and continue the and build on the narrative in our own minds and souls. We aren't any of these things told to us, but we believe we are because society says so. I know this systematic "brain washing", and self hatred "harshness?", myself all too well and I wish you could see yourself as I see you. You are a true success on so many levels. You have the guts to try things at all with many of these things being things (Items? Subjects? Attempts? Activities? Occurrences? None of these words seem the right descriptors so we'll leave it at things) that no one else would even begin to have the guts to attempt. You are a mother who cares and would lay your own life down for your children and loved ones. You are a chronically ill woman who still goes out and does activities even when your body is screaming at you "STOP!". You are a chronically ill woman who refuses to give up despite the odds against you. You choose to be a wonderful friend when society tells you you should be a shut-in. You are not broken (even though your body may be), but rather a vibrant boon to society. You continue to dance despite the pain, and worsening spine (and pancreatitis) which is something 99% of people wouldn't even attempt. Most importantly you are an absolutely wonderful and delightful person which is something people SHOULD be jealous of. All of these, if people broke down the actual pluses one by one, are things that would be successes in society, but all they see is the broken body and medical devices. That mentality of society is what's broken not you. That being said, yes some things will never and are not meant to heal. These are our challenges that we can choose to just lay down and (figuratively and LITERALLY) die, or we can choose to fight, so what we are passionate about, and truly live. You and I do not have the same quantity of years left on this planet as others do, and we know this, but we choose to replace that quantity with quality and that alone is a success. So once again Bailey I really really wish you could see yourself as I do as a huge success and not damaged or a failure. I'm guilty of being like this too, and not being able to see, or rather internalize the truth of, my own successes, and I hope some day I'll come across a person too who can see those successes and make me believe in them. You have grabbed my heart and soul with your personality, compassion, advocacy, way with words, and even your physical and emotional pain. I only hope that I can be that person to help you believe that you are not what society says, but rather the success you actually are. I wish I could shield you from the emotional pain society causes and the physical symptoms your genetics cause, but I truthfully can't. All I can do is help you believe your successes, and most importantly believe in yourself.