Six months ago I underwent Deep Brain Stimulation, a five-hour intervention that required me to be awake for most of the procedure. Recovery was fairly quick, although to me it seemed to take forever. I had several crying spells in the early days, mainly due to my inability to perform the simplest tasks, like lifting my leg to take a step forward. The hero in this recovery story is my devoted husband, who tended to my every need, and thought nothing of picking me up and carrying me when I wasn’t mobile. Validation of the operation’s success occurred in the fourth fine-tuning session, when my programmer announced that since my settings were optimal, she saw no reason to continue tweaking me. The usual time frame for post-DBS fine-tuning is six months. Lucky me that it only took four visits!
Initially, I hid the scars (forty staples’ worth) on my chest where the neurostimulators were implanted, but now I see them as part of me, the new me, the bionic me. So… how do you feel? people ask. Fantastic! I’m pretty much mobile from 7:30 in the morning, when the first dose of meds kicks in, until 11:30 at night or even later. I take less medication and my voltage is set at 2.7. Compared to my pre-op life, marred by an increase in freezing incidents due to the pills’ waning effectiveness, that is a significant improvement.
The operation changed me. Memories of that day remain vivid in my mind. I remember everything that was said in the operating room as I lay there, quite comfortably, while doctors drilled holes in my skull. I remember being excited, not fearful of the operation itself. Since I didn’t feel any pain and there was no blood, why should I worry? After the anesthesia wore off and I recovered my wits, I engaged hospital staff members in animated conversation whenever the opportunity arose. If I detected an accent, I inquired about its origin, which always brought a smile to the person’s face. Later on, after I was settled in my room, I told the night nurse I could kill for some ice cream. Lo and behold, she wandered off, warning me not to get my hopes up, and returned after a while with a small container of chocolate ice cream. I never liked hospitals, but find me one that delivers ice cream late at night and I’ll be on the next train.
Not only did the operation give me back my mobility; it eliminated my dyskinesia, a side effect from the medication which, for years, caused my head to sway almost constantly. And that, in turn, changed the way people looked at me. Over and over again I am now told that I look great, that no one could tell from my gait that I have PD. I’m starting to wonder how bad I looked before I had the surgery. But what does it matter? That was then, this is now.
DBS forced me to take sides. It enabled me to embrace my illness in a way that was not possible before. For a long time, I preferred to stand apart, holding on to whatever normalcy I still enjoyed in my life. I had no desire to join a group of Parkinson’s sufferers to discuss–I imagined–our respective symptoms and commiserate on our misfortune. By choosing art as my traveling companion, my muse, my salvation, I had a built-in support system, day and night. Post-op, I have joined a fitness class for people who have PD and I relish the company of our small eclectic group. We don’t talk about our symptoms. Under the guidance of two creative and compassionate instructors, we exercise non-stop for an hour twice a week. We laugh, we have a good time, there is no stopping us from grabbing life with both hands (some with tremors) and enjoying the ride.
The operation also changed my art. Pre-op, I was painting animals in a minimalist style. For the first few weeks after the surgery I didn’t paint at all. When I took up my brush again, I felt like I was repeating myself and didn’t pursue it. Unsure of where my art would take me, I followed my instinct and went back to doing abstracts. But here again, I wasn’t convinced. I tried other forms of expression: drawing, mosaics, mixed media.
I had lost my mojo. Or so I thought. One day, after I finished a painting that both surprised and delighted me, I knew which path to take.
Here is some of my latest work. I call it semi-abstract for the following reason: At first glance it seems totally abstract, but if you linger you can detect a form, a figurative reference of some sort–and it need not be what I see, i.e., what I based my title on, or what the next person sees. It is enough that you see something in the painting that speaks to you, whatever that may be. To me, the fun of interpreting abstract art–which, by the way, should not be intimidating, but rather illuminating–lies in the endless possibilities for meaning that it evokes.