It is Friday, a few minutes after noon. I’m at my gym, waiting for class to begin. I’m sitting on a stationary bicycle that looks like a starved bull created by Picasso. There are 30 of these “spin” bikes lined up in this room, most of them occupied. I know quite a number of the people on them.
As usual, before things kick into high gear, we have been idling along, warming up, chatting amiably. Now the solo guitar on the sound system stops abruptly, and a dark, wild beat boils out of the loudspeakers. The instructor barks and we are off, peddling as if possessed.
Fifteen minutes in, my lungs burn and my thighs turn to lead. On the bike I can still get the sort of hard workout I now can’t get any other way. Despite the discomfort, I feel my face pull into a smile.
The “Gift” of Time
The good news, all the doctors tell you, is that Parkinson’s doesn’t kill you. That’s also the bad news. The bane of the disease is that it promises you plenty of time. You can live a full life, they say, but you may well spend much of it watching yourself get worse.
Being whole, feeling that you are a complete person, means that you are in control of your time. Parkinson’s takes away your time — not in the sense of shortening your life, but by determining what you do with the time that was once yours. In the five years since I was diagnosed, I seem to have fast-forwarded to old age. Simple tasks I never thought twice about suddenly take forever. Where I could once clean my apartment, do laundry, shop for groceries, and cook dinner for friends all on the same day, I can now do just one of these things and only if I salt my day with naps.
I now need discipline and patience for things that never required discipline and patience. Zipping a jacket can be as maddening as threading a needle. Discipline and patience eat up time. Each jacket-zip devours precious moments. I am helpless to do anything but watch them go down the drain. Worse, all of these moments of time accumulate like little drops in an ever-growing, panic-inducing reservoir of loss, impossible either to recover or dismiss.
Change is time’s handprint on our lives, the visible proof that it has made us live by its dictates. Most people’s experience of time allows them to adjust to change gradually, even comfortably. With PD, change bears down on you like an avalanche. Your neurologist tells you to stop picking up your grandchildren because you might drop them; then comes word that you must give up driving. This is not to say that good things stop happening. They still happen, even accompanied by familiar surprise and joy. But you can no longer rely on the “natural” balance of good luck and bad.
Grievin’ ‘N Groovin’
At the front of the class, the instructor shouts a reminder that we have reached the halfway point and plays a slow, bluesy song to give us a break. This song reminds me that during the early days following my diagnosis, I used the bike to grieve, to pound the sorrow and self-pity out of my body and my mind.
I chided myself for this. I called it grievin’ ‘n groovin’. Still, sometimes I couldn’t help it and bowed my head and wept. I believed I was the only person in the world who could cry while Wilson Pickett was belting out “Mustang Sally” on the stereo system. At the time, I thought there was something seriously wrong with me.
What made it more poignant was that no one could tell — everyone’s faces got red and wet during a spin workout. Months after my diagnosis, I still hadn’t told any of my gym friends that I had PD. Time hadn’t made that any easier. Telling people, I thought, would change everything. No matter how understanding people were, from that point on I would be the sick person and they would all be well. I was already feeling fragmented, thinking myself an odd man out. I wanted to delay the inevitable alienation for as long as I could.
A Hitch in Your Git-Along
About two years into my journey with Parkinson’s, I became aware that the disorder seemed to take extra care booby-trapping another facet of time: my rhythm, the measured way all of us move through the world. In my 50s, I started jumping rope and got pretty good at it. After the appearance of PD, I began having increasing difficulty getting the rope under me more than eight or nine times before the coordination disintegrated.
Also, my walking gait was developing what Don Meredith called “a hitch in your git-along.” Though there was no way to keep this hitch from becoming many hitches, the bike was a way to delay the inevitable, to give me more time.
Each time I climb onto the saddle and click my shoes into the pedals, the bike fits its template of steady beats over my rhythmless limbs. During an hour’s ride, it relieves my muscles of the exhausting task of firing all those tedious fine motor adjustments that maintain balance. As a result, a lot of the wobbles get ironed out. This is possibly the reason why stationary bicycling is being thoroughly researched by Parkinson’s specialists and widely prescribed for patients. Two days after a session, I’m still feeling the benefits.
Glue With a 45-Pound Wheel
PD, I found as the months rolled by, was also working on a mental aspect of rhythm. I was having trouble being on time for anything and couldn’t finish simple tasks. These days, I’m better at such things, but the root problem still exists: I’m losing the familiar rhythm of organizing my time, my self. I’m becoming more fragmented, losing a sense of wholeness.
The bike helps me glue myself back together. This is the one thing I believe I can continue to improve on, that I can still change. If the bike doesn’t exactly complete me, it shows me that wholeness is still possible. An hour on this machine passes the same way an hour passes for a normal person. It is not PD’s time. It is mine. It is time as I used to know it.
