One, my husband’s Parkinson’s disease. It’s a tough break for such a splendid man and in spite of all the stiffness and fatigue and slow-motion, he’s Mr. Positive. But then you’ve got to be with this stuff, or you’d never get out of bed in the morning. You’d surrender to your cement-filled joints and then allow yourself to sit around recovering from a hellish morning of rising but not shining. Television would soon rule your life and there’d be hell to pay for anyone who nudges you to do more. You’d sit there, stone-faced and barely moving. You’d be the rusty tin man without oil-can relief.
When Steve was first diagnosed back in 2003, both of us were cool, calm and accepting. We were sad but not yet mad, and I remember my sunny husband saying, “If I had to get something neurological, I think this is a good one to get.” Really?
I had just lost two parents to cancer, and as I sat across from him in the diner I almost thought he made a good point. Parkinson’s wasn’t going to steal him too soon, just make his everyday movements torturous and sometimes dangerous. Like hopping in and out of a car, eating a salad, pulling on underwear or threading a belt through the loops of his pants. It made me mad to witness the downshift in his life’s power and pace, but I had to put a sock in it. Tamp it down. Squash it. Steve wasn’t to blame. No one was to blame. His brain wasn’t making enough dopamine. Should I be upset with his nerve cells? OK. Works for me. It’s their fault.
Now, 14 years later, he’s up to 17 pills a day to keep him somewhat loose and energetic and productive. The tremor in his left hand that started this whole thing is now under control, but he frequently teeters and tilts. Last November a routine walk through the kitchen ended in the emergency room. He stumbled and then stormed into the edge of the kitchen counter, breaking three ribs. So his desire to golf through retirement is kaput. He’d land in the grass after teeing off because a big swing throws him wildly off balance. I’d find grass stains all over his gym shorts, and he’d confess to his foibles out in the backyard while practicing.
But my husband is an upbeat, can-do kind of guy, so he found something else to occupy his time. Something he’s always wanted to try. Woodworking! Yes, handling power saws and sanders, planes, drills and other sharp tools sounds like the ideal Plan B for a person with a movement disorder, doesn’t it?
Which brings me to my second angry thing–my response to his new hobby. I’m in the red zone. Always.
All this puttering and building and screwing around in the downstairs garage, his neurologist says, is the best thing he could do.
“Just keep moving,” the man in the white coat cheers.
So I should buck up and go down and help sweep up the sawdust, right?
Well, I don’t. I stay away and stew. Or pray and pace and stoke my fury. Call me crazy, but I think a man with Parkinson’s should maybe not be stuffing his garage with all sorts of sharp implements and power equipment that could lop off a body part. The fabulous footnote here is that Steve requires blood thinners each day to counteract a congenital blood-clotting disorder. Nine years ago he developed a blot clot the size of an anaconda–from his calf up to his lung–and is lucky to be alive. So it’s Coumadin for life. Let’s fire up the saw, shall we?
I get rattled each time I hear its high-pitched scream.
“Oh. Here we go,” I say to myself. And I turn to jelly because this whole situation seems like a preamble to bloody carnage that might be avoided if he’d just take up something less sinister and serrated. Pottery, perhaps? That came from our daughter who shares my pain. He vetoed that pretty quickly.
No matter how hard I reason, argue, plead or beg, Steve assures me he’s “really, really careful.”
I’ve done my best to dissuade him, but I’ve lost. He will not be moved, and I think he savors this small bit of control. He’s the guy flipping the switch, wearing the safety goggles, guiding the wood oh-so slowly and carefully toward that spinning blade of death. Unlike much of his life and body now, he’s fully in charge.
But on the flip side, I do have a lovely collection of hand-crafted cutting boards in my kitchen. My husband is amazing and, apparently, quite the artist with a table saw. Who knew?
Linda Miller is a freelance writer, college application essay coach and memoirist from Berks County, PA. Find her on Twitter @lindamiller251.