I’m happy to report that I’ve officially been cleared to proceed with Deep Brain Stimulation (DBS) surgery, which is excellent and exciting news. But a question presents itself: why don’t I feel pure, unadulterated excitement?
One of the things I’ve learned about chronic illness is that it’s never done. There’s never a day off and there isn’t a finish line. There’s no grueling treatment or surgery that you endure so you get the payoff—you get better. There’s no hope of remission, even for a short period of time. And because you’re not dying, you’re not planning for the end of your life. There’s just the relentless drum beat of the symptoms and their progression appearing in the background of every day, every plan, every hope and every dream.
Now I’m not saying I go around spouting gloom and doom every day. On most days I’m happy to be in the world; working, being with family and friends, doing things I like, and going where I want.
Yet some days I get swept up in “magical thinking.” I start to think that if I’m just good enough and just do all the right things, my Parkinson’s will go away, or at least it will become a predictable, manageable beast. Or that maybe I’m the one person who will get markedly better. Or maybe everyone was wrong, and someone will look at my medical chart and say it’s something else, something they can fix.
But PD doesn’t work that way. You can continue doing everything right—the right amount of water, food, medications, sleep, and exercise—and still you’ll feel like crap. Or you can do everything wrong—too much wine with dinner, not enough sleep, becoming dehydrated—and feel just great.
By nature, I am a fixer, and when I was first diagnosed, I tried to figure out how to have the “perfect” day. I wrote notes and made spreadsheets and lists: everything that went into and out of my body, with their corresponding mental, physical and emotional check-ins to determine effectiveness. And while general patterns do show up (more sleep, good; more hydration, good; healthy food, exercise, and companionship, all good), they are nowhere near as causational as I would like. I remember a day shortly after my diagnosis when I was having a particularly symptomatic day and my husband asked me, “What do you think is causing it?” and I replied, “I think I have Parkinson’s.” Sometimes that’s the only answer.
Although I do have responsibilities as the patient to comply with my treatment, to do the exercise, follow the best nutritional advice, and work with my doctors, I am not responsible for every symptom that arises. The fact is, PD does what it does, and often I can’t control it. It’s hard to resist the urge to look for the blame in myself: What did I do wrong that I’m having a bad day? But sometimes it’s just PD.
I’m usually not one for self-pity. And I truly don’t mean to compare my journey with that of anyone else with a major injury or illness. But every once in a while I wake up and say to my husband, “I wish I could not have Parkinson’s today.” While I recognize that’s magical thinking in a nutshell, it doesn’t prevent me from wishing for it anyway, from time to time. But then I dry my eyes and stand up straight, and get on with the business of living. I take the meds and go to the gym for workouts, and anticipate the surgery.
Because I recognize, above all, that I am lucky; I have next steps.
I’m excited and incredibly grateful that this surgery is an option for me. At the same time, I’m also overwhelmed, in all the best ways, at the thought of continuing to improve the quality of my life. But in the back of my mind I know it’s not a cure, or an end point. It’s yet another step in my journey.