I didn’t know, when I rolled into the neurosurgeon’s office four years ago, that I would be faced with such a hard decision: have a dangerous surgery that was almost guaranteed to go wrong or face a slow decline into quadriplegia.
I didn’t know how good it would feel to tell the surgeon “No.” No laser knife, no bovine heart membrane or titanium plates and screws. No more fear of spinal fluid leaks or meningitis. No wondering, when I wake up after surgery, still groggy from the anesthesia, lips dry and cracked, if I can still move my arms and legs. And no long, painful battle with physical and occupational therapy to regain as much as I can of what was lost.
I didn’t know how easy it would be to make that decision. No agonizing, no pressure to do what the “experts” wanted. And, for quite a while after, no regrets.
I didn’t know how much hope I pinned on that decision. Hope that I really wouldn’t get much worse. Hope that if I did, it would be a long time in coming. And hope that when it happened, the decline would be gradual and painless.
I didn’t know how many times that hope would be challenged, or crushed altogether, as new symptoms took hold, pain levels increased, and more function -- and the ability to be truly independent -- was lost.
I didn’t know that the most difficult part of permanently losing control of my bladder would be finding a urologist to help me make the transition to relying on an in-dwelling catheter. Of the two on my island, one doctor never returned any my calls begging for help. The other didn’t like having a woman question him, so he spoke to me through my husband, and then tried to charge me over $600 for an office visit and catheter change.
I didn’t know that I would hate to be hugged. The crushing grip of the MS Hug makes the muscles around my rib cage, abdomen, and back rigid; restricts my breathing and movement; and brings unrelenting pain. I hate this symptom more than all of my other problems combined.
I didn’t know how dark my world would get. On the days when multiple symptoms rage, unrelenting, untouched by rest or ice packs or pain medications or massage or, the most powerful therapy of all, cat petting, the tears flow hot and hard. The will to see another day, normally so very strong, falters, and the craving for relief -- a few hours or forever -- trumps every other want and need. The desperate bargaining -- with god, the universe, my own body -- begins: just take away one of the problems, just give me a break, just let me rest.
I didn’t know that my self-esteem would decline along with my ability to manage my own body. Being forced to leave my career behind was, without a doubt, the single biggest blow to my identity and self-esteem that I’ve ever faced. Forget being overweight, having large scars everywhere, and being a no-necked hunchback -- those issues are nothing compared to sense of loss and shame I feel for no longer working. I miss having a job at which I’m really, really good, and I miss the sense of accomplishment it brought into my life.
I didn’t know how empty some days would be. Too tired to move, in too much pain to focus -- noting but me, sitting in my bed, watching helplessly as the hours and days of my life tick away, waiting to seize and make the most of those moments in which I truly feel good.
I didn’t know how all consuming monitoring a failing body would be. Every day brings new changes, which spark new questions. It is always on my mind -- it dominates my conversations with others. Why is the edema growing worse? Is my abdomen rigid because of muscle spasms or is there something else going on? How can my skin be getting drier when I drink more than a gallon of water every day and live in such a humid environment? And of all of the potential problems that have popped up, which needs to be tackled first?
I didn’t know, when I made the decision to let nature take its course instead of having surgery, that the slow decline in quadriplegia would be as painful as it is. I imagined it to be a slow loss of sensation and movement. Instead, this journey has been filled with pain, seized up muscles, wildly fluctuating body temperatures, and tremors.
I didn’t know it would be so damn hard.