(Part 5 in the series Choosing More Surgery)
I spoke to a psychic two weeks before my recent operations. The psychic is a friend, an ebullient Cuban immigrant, who regularly conveys messages from my dead relatives. My friend Victor said that my surgeries would go well but advised me to be careful about falls. He also warned that the recovery would take longer than I thought.
Indeed.
I have finally recuperated from both surgeries, and a follow up laser treatment. All fall, I wore bandages, wrapped in cloth, or plastic, or new 21st century materials of wound care. Ten weeks later, those bandages are gone. I can exercise and move around again. Contrary to my dead relatives’ concerns, I never did fall, although I came close a few times, tripping over my wound vac cord, catching myself breathlessly. I was extra vigilant on the stairs, clutching the handrail, whispering to my deceased grandparents that I was being cautious like they wanted me to be.
My surgeries started in September, and I was not fully healed until the end of November. It was not a good Fall, in other senses of the word. Maybe that’s what my relatives meant? Watch out for the Fall?
The hardest part turned out to be the old, dreaded donor site. If you have had a donor site, you know what I mean, and if you haven’t, then good for you.
There was one hospital visit when Michelle, the nurse, was picking off bits of crust from my still open donor site. She was gentle, her brown eyes shining with care and concentration. But the pain, that one searing pain, sent me straight back to being four years old.
“Stop!”
She stopped immediately. “I’m so sorry that I hurt you.” We sat together for a minute, very still.
In that moment of peace, I could think. The pain was ancient, a deep intense searing, an open-mouthed shock. The sting of Michelle’s careful cleaning was not actually that bad, but it caught the tail of my ancient pain, and spun into the sky like a kite flying in a tornado. The current abrading evoked all those years of bandage changes, writhing without pain medication, screaming “Mommy Mommy Mommy” until the dressing changes were done. (See Flashback Girl for more on my early story).
My body carries those memories. I guess it always will.
“It’s not really you. It’s body memories. I’m OK,” I clarified, through my tears. (For more on “body memories” please see Bessel Van Der Kolk’s book The Body Keeps the Score).
This donor site was stubborn; it did not wish to heal. All donor sites heal within four weeks, or at least mine always have. But not this one. Five weeks; still not healed. On another checkup at the hospital, Dr. Eberwein inspected it and said words you really don’t want to hear from your extraordinarily gifted plastic surgeon: “I don’t know why this is happening to you.”
Various theories emerged. Was I eating enough protein? (I was). Could I be Zinc or Selenium deficient? (I guess. What is Selenium anyway?). I was sent home with instructions to mega-load on these minerals for a week.
I was dubious about the mineral plan, but it may have been the ticket. Within days of taking them, my donor site healed over, bright purple, with no open flesh. Curious, I asked “Alexa” what foods contain zinc and selenium. It turns out that they are rich in red meat.
Guess who doesn’t eat red meat? That would be me. Dr. Eberwein was right as usual.
My body has changed. None of the changes are necessarily attractive, but rather highly functional. First, there is the purple patch of skin on my right thigh, climbing up into my hip. That is my donor site, recently healed through the miracle of zinc and selenium. Don’t touch it. It is still tender and itchy. But the donor site served its purpose. It provided skin for my grafts, for the places my body needed to stretch and grow.
The formerly-on-my-thigh skin now spreads in two vast rainbows, from my waist up into my chest and down again. (Sometimes I wonder what it is like for thigh skin to suddenly become torso skin. Imagine if you will, all those years of being sat on, covered with pants, ignored. Now suddenly the skin is up on a waist. What is that like? To have always been on a thigh and now to be upright on an abdomen. Does it feel like a promotion? Does my thigh-now-abdomen skin now dream of being bared in a crop top? A bikini? Fat chance there.)
Anyway, I digress. My new rainbow grafts are not pretty. I will say they look…interesting. They are two large red semicircles, patched into my torso wall. Most importantly, they work. I have inches more new skin all over my torso, enabling me to breathe.
OK, I could always breathe. But now, I can breathe deeply. My lungs expand evenly all the way down my chest into my back. Suddenly I have an entirely different concept of taking a “deep breath.” This is what I was supposed to be doing? I was breathing so shallowly, filling perhaps 65% of my lungs. (I am amazed I have been as calm as I have been for the past 50 years. I should really have been a maniac.) My lungs feel like a vintage car that has been garage-kept for decades, finally out on a spin, racing down a peaceful country road.
Moving on. I also have skin. My waist is no longer an angry red line, tight and taut, biting into my flesh. Now my waist gently expands, allow me to eat without pain. It used to be that my waist ached after every large meal, the skin below stretched out. Imagine one of those balloon party animals, twisted. The twisted area was like my waist, the ballooned-out area was like my abdomen. Life was constantly uncomfortable that way. Now, post grafting, I can eat and remain at ease. My hips fall gently out of my waist area, instead of the bulging explosion they used to be.
I am the only woman I know who rejoices to have a larger waistline.
It challenged me to have these operations. Going back for skin grafting felt like returning to a battlefield as a former child soldier. The searing pain, the smell of rubbing alcohol, the IV needles biting in my forearm, all of it. I did all this alone at the age of four and it was brutal. But I had a lot going for me this time, fifty years later.
I had friends who stayed overnight near the hospital, arriving cheerfully every morning in their yellow scrubs, ready to scratch every itch, watching over me.
I had a husband who nursed me as diligently and capably as any nurse could, fretting over possible infections and making sure I ate my protein.
I had a brain that, although traumatized, had healed with decades with skillful care from seven different therapists.
I had neighbors who dropped off food, daughters who loved me, friends who sent flowers and cards and texts, letting me know that I was in their thoughts, even though I felt isolated.
I had health insurance that paid for me to get the most skillful care from the best surgeon, and a burn team of experienced kind nurses.
I even had a community of interested readers, like you, who wanted to learn about this land of burn care. Writing my experiences helped me stop, think, and reflect along the way. I might be going through an hour of despair or self-pity. I might be unable to sleep, tossing in my discomfort. But in those moments of shadow, I might think, “I could write about this. This experience would be interesting to people.” Knowing that my suffering could prove useful to others helped me bear those moments. It helped me so much.
I am glad to finally report that this journey is all done. Thank you for coming along for the autumn ride.
Lise Deguire's multiple award-winning memoir, Flashback Girl: Lessons on Resilience from a Burn Survivor, is available for purchase on Amazon, Barnes & Noble, Newtown Book Shop and The Commonplace Reader
Dr. Deguire ~ the passion & description you write about brings back memories from my 1960-70 surgeries & then my chest release ( 67% lung function ) in 2017. Glad to read that you have the renewed freedom of full chest breathing. During my 1970-2017 no burn surgeries life segment we lived in Vernal, UT. 1993-1995. Yes it was 5,000' elevation and we did a lot of snow skiing & other activities with our kids. I definitely remember the struggle of trying to move around & attempt to get the oxygen my body require for the activity. Calling it internally "Grin & Bear it".
Just like you so eloquently capture "My body carries those memories. I guess it always will."…