Tuesday, May 3, 2016
I used to ask myself, "what more can Fibromyalgia take from me?" Years later, I looked back and understood that its theft had been insidious, subtle. Even I, the one who was hiding the progression from loved ones, did not always notice that parts of my life had come up missing.
The big changes were obvious - it had already taken a job that I enjoyed, my independence when I didn't feel safe to drive, hobbies that required any physical stamina, and my pride in a drug and alcohol free life. Ironically, now that I would enjoy an occasional glass of wine or a cold bottle of beer, I cannot drink because of the medications. Let me be clear though, I was never an addict. My parents are and after spending my childhood watching their behavior, I became militant about not partaking myself. And yet, here I am, forced to pop pills, every color and flavor and side effect.
There were the small changes too - a compromised energy level, never feeling as if I got enough sleep, pain that would come and go, and also seemed to pack its bag and visit areas of my body like it was a hobo on a train. What Fibromyalgia consists of is beyond words. The list is too long.
Sometimes I howled the emotional pain of it all. I sat at my desk in the darkness and wept, hiccuping, rocking like a toddler that was waiting for a mother's arms to console her. But there was no mother and I was a grown woman with children of my own to protect from my suffering. I only broke down in the porcelain & tile chill of the bathroom where if you cry too hard and begin to gag, the toilet is right there waiting to be hugged and take your agony-vomit.
The disease is not supposed to be there. It's a foreign invasion of your own body. Your. Body. Something that is supposed to belong to you, your forever friend, has betrayed you by allowing this monster entrance. It settles into a chair right next to yours at the dinner table of your brain so that you may have conversations over who is the boss.
All of the stages of grief - denial, anger, bargaining, depression & acceptance - are about who is in control, you or the disease. The first three are when you still think you're in control, or you're desperately trying to hold onto the belief that you are. The last two come when you've realized that control is air between your fingertips.
You really can wake up on a Tuesday morning, happy with your life, a 'to do' list for the day waiting next to the coffee pot and a few hours later, you're standing at that same counter, staring at the check mark beside "Dr. Smith @ 2 p.m." and knowing something just went so wrong.
All you get to control are the details. Which tests to have, medications to take, treatment plans to sign off on, who you tell and what you tell them about your illness. You can do everything right & still progress. Knowing all of that is acceptance. As cliche as it sounds, it does get easier as time goes by. You'll still have bad days though.
A week ago today, I was supposed to have lunch with my granddaughter, Ava. She's six years old & in Kindergarten. After two passes by her school, I realized that every parking spot for two blocks was taken by other grandparents. There was no way I could walk that far, not safely and not without forcing myself into a flare. I'd been cycling through them for weeks and knew that my body was begging for a break.
The second my brain made the decision, my heart broke. I was sobbing uncontrollably, clutching the steering wheel and easing over to the curb so I could break into a million pieces without wrecking the car. I could see the brick of the school and it seemed so close but so far away. The black haired, freckle nosed, teeny-tiny pixie that is my Peach was inside, eating a hamburger & drinking a carton of milk without her nana.
That evening, I drove out to see Ava. I took along a big ribeye steak, our favorite thing to eat together and I hugged her close while she told me that she wasn't upset. I knew her parents had coached her to say it, but I also knew it was true. She and I put on pink lip gloss, we talked about fishing & she told me about a walleye she caught. She knelt on her table at home to get closer to me, just like she perches on my desk here. I cried silently all the way home & once there, I went into the bedroom and stared at the ceiling while rubbing the pad of a thumb over my shiny new emergency medical dog tags.
Everyone tried to make it better. They tried to soothe my sadness, give reassurances that I can make it up to her, there's always next year, and that she's so young, she won't remember it anyway. But that one day has set me back.
I have been reminded of the truth: Sick people can get used to things that normally would seem impossible, unthinkable. Pain becomes background noise, a not so pleasant soundtrack for the day to day minutaie of our lives. It's when pain goes to its next level, when it turns to sharp edged agony that leaves us afraid to breathe because the rise and fall of our chest, while a primal instinct, means suffering. We are narcotized by medications and our need to forget that we died already. The person we once were, the "before" version is gone & after grieving the loss, we are left to build a life worth living with the "after" disaster.
That requires a lot of work from a mind and body that are always tired. But you get there, you really do. You quit seeing your disease as its own evil entity to wage war against & come to terms with it being you too, a part that needs your care and attention. With time and piece by piece, you rebuild until you look in the mirror and all you see is this life. The old one has faded and is only remembered when something brings it back into sharp relief. That's when you stumble, when you may stagger and fall to your knees. Sometimes, you just have to stay down and pray.
I don't know how to be sad for long. I don't know how to cry for more than 5 minutes. I have no idea how to lose control. I'm hardwired and self-taught to be strong, unbreakable and even cold at times. If I didn't teach myself those skills, I never would have survived my childhood. Now it's the only way I know how to survive the thing that will probably kill me anyway.
I'm scared. I don't know what I'm more afraid of - how bad the pain could get, of dying from my disease, or of giving up the last thing I can control - how I reveal being sick. That's what more Fibromyalgia can take from me. I'm afraid if I take all of the medication they tell me to, if I rely on them for relief, one day it will all quit working and I already know that I can't live that way.