I am laying here in my nest; back supported, legs propped, butt sore, mind a constant whine to roar. I am so fricking discouraged and who wants to hear that?! The long sought and briefly attained resilience I caught like a moth in my hands has disappeared into the night while sleeping. I awake with my hands clinched and cramped and my ankles twisted and the deep ache I feel in every inch of my legs and feet and my arms and hands and my flanks erupts when I stand and I swear I feel as if the pain is mocking me. It is all too familiar, yet also such a reminder of the days where I awoke and climbed out of bed and woke the boys, made them breakfast with yes, the pain, but the manageable pain which did not haunt the day, scaring away appointments long awaited, and so much joy. The joy of being able to walk through the house without counting the steps to return to my respite recline. Praying the relief will arrive before my son’s next show I cannot miss, knowing I have already missed so many I will never get back.
I have improved managing the high wire; canceling today for the big event the day after tomorrow. I have shown up more regularly in my sons’ lives, a boon of the handful of strong days and also grace. For it must be grace which allows some nights sleep to be only that, sleep, though fitful and wakeful, but void of spastic tangling of limbs which is neither cause or effect, but proof of something wrong at the top of my spine. The sameness of the pain, searing concrete, dull, deep, breathtaking and heart palpitating, all everpresent before the last surgery.
I recall now how a pocket of return to health from the dreaded failed low back was the window when my original total body ache arrived with a vengeance. I understand how someone who wants to believe that such meanspirited timing could not in fact be a straightforward medical condition. But it was and the evidence was already collected, of a spine which had been blown by herniations and surgeries since I was barely more than a child, images and reports. The abnormal reflexes were noted and retested and still, there was just so much doubt. Why was it they, really just one doctor in cahoots with another, but why did they need to doubt the findings and look for the ghost of freud’s hysteria. I know it was because I was a woman, but still for them to discount the medical evidence in search for the invisible defect within my psych, I felt as if they saw some fundamental flaw in my person. There was a flaw, an insecurity; some part of me either believed those witch hunting quacks or simply didn’t hold enough faith in myself.
But for my faithful surgeon. The inevitable critical surgery on my upper neck exposed the severe spinal compression, though the recovery was marked in years. Still his opinion only matters when I have given up hope of untangling my own limbs in the dark of night while I sleep. In the meanwhile I endure voodoo smoke and pins and mirrors from my own pain doctor who still speaks only of yin and yang and fear and trauma of a kind which is invisible; surprised when the visible proof was found and corrected. Surprised yet still somehow, someway unacknowledged. So when I see him each month and I describe what I know, WHAT I KNOW! he looks at me with compassion and truly sees me as brave, yet he never ever allows for the possibility that the injury is of real physical consequence. He speaks of ghosts.
Why does his insistence on ghosts in spite of evidence haunt how I feel myself, and worse how I envision and fear the next doctor I should make an appointment with will view me. Two plus years of doubt before the last surgery only made the real cord lesions so life altering, scrambling relays inevitably passing through broken circuits. Why do I cower before doctors, apologizing for my pain, my disability?
And here is where I sit again. There is something wrong with my neck and it makes my body hurt to a degree that feels simply more than I can bare most of the day, too many days, and I am so afraid. I am terrrified to put myself out there to the derision and doubt which did in fact cause psychic trauma; to be treated when most vulnerable with misogynistic diagnostic derision, spoken about but not to. Those experiences left me with such a fear to seek better treatment, any treatment. And yet I know many more days of this awful spastic pain is not something I can simply wait out. Or not much longer.
I feel especially vulnerable even chronicling this, yet I know it has been good and right and true. It is part of the process to trust myself. It is also because I do not believe my experience is terribly unique when it comes to women with severe pain. The doctor who labeled and shamed me self reported he was the foremost expert on psychogenic conditions, diagnosed more of them than any specialist in the entire country. I wonder if that doesn’t say more about him than it does of me?
I think I also want to be thought of as I was just re-emerging from such a long quiet where I was not seen, not heard, not known. I once was a vibrant human engaged in humanity. This act becomes so much harder when I most often cannot, do not leave my bed. And who am I if I am most often not seen? Thank god for my Tim and my boys. They have refused to see me as anything other than wife, mother, Susan. They see me as grumpy or goofy, fan or fanatic, helicopter even while broken. Somehow they do not make me feel less than; they always help me feel known and loved.
This ^ was the sentence the rest was written to arrive at. Know matter how hard a day of pain might be, know matter how I long for a life more active and involved, I have three of the most generous hearts in my home offering me unconditional love and unconditional forgiveness every day of my life. They also allow me to love them, unconditionally, which is always the most direct remedy for pain of any kind. I think I used to believe unconditional love was a love so full it would rise above daily stress, bickering, anger, disappointment. Maybe that is the way it becomes when we keep working at it. But for now I will be happy, no overjoyed, that I each day have the opportunity to love.