Thoughts on July 20th–A Look Back
I swore a bit after burning my hand on the toaster oven. No microwave for the children & me-especially since the cancer diagnosis. I am back on the quest for the whole-food, nutrient dense diet. But I do swear more than I used to.
“Hope” Mixed Media, By Marlane Quade Cook
The burn didn’t bother me after the initial shock of pain, but I did remind myself they always hurt worse later. Marching alongside this thought was the nagging accompaniment that I’ve been such a wimp lately, going back on my pain meds for knee strains and slight “twinges” in my abdomen–post-surgical souvenirs I make too much of. To my surprise, the burn barely registered on my pain scale, even though it began to ooze and a small piece of skin had come loose. When I accidentally stuck it in hot water I was reminded of its presence, yet it was nothing compared to the constant throb of my ribs, back, pelvis, the yanking tug-snap in my knee, and anything else that has been recently stressed. Maybe I’m not such a wimp after all, I reflected, dabbing aloe vera onto my seared skin. Maybe my doctors just don’t have a clue what I mean when I say I’m in pain.
It hasn’t been much more than a month since I was in the E.R., screaming in agony as I tried to manage my post-op pain. That was my ten. Anything less is usually accompanied by a shrug and a ballpark, “oh, five or six…” Only a few days ago stabbing pains in my side kept me in bed all weekend and then sent my to one of my OB-GYN’s on-duty colleagues, who belittled and dismissed me to such an extent that I was too stunned to argue the matter or stand up for my rights as a patient when he foisted procedures on me I would normally have refused, especially from a male practitioner. Live and learn. Chalk up another bad experience, add it to the life experience, and return to the internal certainty that “this is just me” and “I am weird.”
In fact, for someone with Ehlers-Danlos Syndrome as well as Fibromialgia and God Knows What Else, this kind of seemingly random pain is not uncommon. After my first child, I was to experience painful pelvic subluxations for over a month. After each birth I hemorrhaged. And took a year to recover.
I simply don’t heal right. Nearly every cut or burn leaves a scar, Nearly every bump leaves a bruise. I need phenomenal amounts of protein–animal protein, ideally–to function without experiencing weakness and lightheadedness, and to forestall injury. I was attempting a vegetarian, low-fat diet when I experienced my first catastrophic injury: a torn ACL that has been my achilles heel for 16 years of my life. When I finally lost the use of my knee last fall and had to have the ACL replaced, it baffled my orthopedic surgeon that I simply could not get back on my leg. I could not strengthen it to the point of weightbearing, even though I started Physical Therapy (PT) a week after the surgery and did daily exercises at home. At times, my other joints would flare up and I would be unable to assist my weak leg enough even to leave the house, so there were many times I had to miss PT, and more than once I had to use a wheelchair because of joint instability in my knees and hips. The therapists could not all understand my good day/bad day ratio, and pushed too hard during flare-ups. The result: a worsening of flare-ups. This cycle continued until I began to call in sick on my bad days and work myself at home within my limitations. My dancer’s mind rebelled at these cowardices, but they were effective in combination with regular PT (and the addition of advanced rehab), and I slowly regained my strength. A mere eight months later I was able to begin walking unassisted, though recurring bad days always felt like a setback.
The hardest thing about living with Ehlers-Danlos Type III could be the persistent “weakness” in the joints and the difficulty in building and maintaining muscle, and therefore, overall fitness. It could be the loss of my passion: classical ballet. I am now to the point that even sitting and instructing a class for an hour or two is so far beyond me. Even leaving the house on a bad day is beyond me, unless it’s an absolute emergency. Yet I don’t think those are the worst. The worst would have to be when I see my six-year-old son is simply too worn out to play, when I see his or his sisters’ knees extending beyond their normal range of motion as mine did for so many years. It’s seeing bruises on my four-year-old daughter’s baby skin because she bumped her knee or fell or because another child was playing too roughly with her. It’s seeing the sensitivity of my children’s skin, the scars they already have, my daughter’s love of dance that may be as unfulfilled as my own, my son’s extreme reactions to pain. Genetically there is only a 50% chance that my children have inherited the gene for EDS, but the signs are discouraging. They are too young for evaluation, which prolongs the uncertainty and worry for me as a parent. Nearly as bad is the fatigue and joint instability that keeps me from being there for them as I would like to. Gone are our excursions to the park or going for walks, play days with friends are limited to those families who understand our situation, which are few.
Though I have not lost hope, the past year has been discouraging in the extreme. It has changed the way I view myself and my abilities. As someone who valued few things more than strength and health, I have finally admitted to myself that I am not physically strong, and may never be. And yet, to put it in words feels self-indulgent. Whiny.
I can usually deal with the pain. As my individual pain scale may indicate, I’m used to it. I don’t know if I can deal with the increasing need for surgeries, and now I have the unrelated diagnosis of cancer to add to the mix. Yet I am one of the most stubborn people I know, and I am reasonably sure that in spite of the temptation to give up I will almost certainly persevere to the end. Because I have a family. I have children. And my children need to see me live with as much dignity and courage as I can manage.