What a wild night! After relinquishing my fantasy of going out to sing and dance, I finally collapsed into bed around eleven next to a disturbingly large and wrinkled pile of unfolded laundry and a stack of unread New Yorkers. I’d been looking forward to the time because after carrying the unread magazines around since June, but fell asleep within less than a minute. Unfortunately staying asleep is rarely an option. Before dawn I found another corner of hell! It’s called perpetual nausea. The kind that leaves you crumpled on the bathroom floor where you sleep in fits because the dry heaves keep coming in vicious waves, but you're too weak to continue the marine crawl between your bed and the bathroom.
My body says, "Oh that’s so cute that you thought you could be normal and healthy like the cool kids!”
It must be tough to understand, if you don't live with Parkinson's or some relatable condition. Maybe it smacks of martyrdom or whining to some, but it is actually the opposite. I share these things to expose this part of our shared human condition, not as an SOS. (There isn't much you could do for me, anyway). I don’t own a white flag and I am stronger than you’ll ever know. Yet! Yet...How could I have known what recent medication changes would do to my body … and my relationships. In neurologic disorders, medications are as dynamic as our chemistry and constantly shifting. It's not like you nail the right combo and you’re all set!
Here is a visual interpretation of life with a progressive disease, compliments of another Kiddo named Beatrix. You didn’t think it was going to be that easy, did you?
True story: The body is always changing, so the potency and delivery options of meds changes. It's the ultimate whack-a-mole. My medical team monitors my rapidly changing chemistry while I try simultaneously juggling the expectations of “normal” life, including single parenthood. We know complexity is part of the deal and that illness doesn’t occur in a vacuum. Chronic illness constantly interrupts everything, no matter what our other responsibilities or unrelated challenges demand of us.
I'm watching life happen around me with curiosity and awe, wishing I could join in more often.
Dystonia takes over too because I can't keep the medication down this morning. Add slight tremor (the easy part of this $hitshow), then toss in a host of non-motor symptoms invisible to the untrained eye. I’d prefer entering the cage with Cyborg than the sheer physical torture of such indefinite and unexpected pain. It's hard to slay dragons amid endless fatigue.
My compassion for anyone enduring treatments for disease in addition to the original symptoms has expanded beyond measure. Managing the symptoms of any condition is isolating enough! It rips us away from joy too, if we allow it to take over. I know what it is like to watch the happy shiny partiers of the world outside through this window of agony. My body is a vehicle for such ecstasy and delight, but it can turn quickly like Cinderella’s chariot.
It’s 3 AM and I’m hovering somewhere above my body, dreaming of watching someone who only appears to be me do things like walk and talk. When I wake fully, I slide down the stairs hoping to find some way to avoid the next round of nausea. I try in vain to open a jar of olives. I stand at the sink pondering how long it took my teenagers to transform the kitchen into a war zone. My head is a drum pounding with agony and if I were a coward, I’d leave this place. My body is a cage.
How do I survive nights like this?
Such a cascade of horror needs to be tempered with joy. So I focus on that. It's a life force. In the interest of time, here is a short list of what brings me joy:
Improv. The tiny red fox barking at me from the edge of the yard. True Romance. Seeing a concert with a vibrant woman of depth and crazy wisdom. Mary Oliver. Dancing until we collapse. Kill Bill. Spotify playlists. Jo Malone’s Lime Basil Mandarin. A musician lost in the craft. Native American culture. Realizing it wasn’t personal. Terrence Malick’s work. The residual swagger of youth. Mad giggling. McSweeney’s. Elephant Journal. The Island of Misfit Toys called 1220. The New Yorker. The way our dog tilts his head from side to side when he hears anything that sounds like treat, walk or squirrel. Hearing the kids banter in the kitchen. Fresh linens. Karaoke disasters. An unexpected message of delight. Trucker hats. Compassion. Wandering. Asian food. Integrity. Not talking and just smiling at someone you love. Freedom. Perlmutter paintings. Guilelessness tempered with social graces. Finding a mix tape from my teen years. Txakolina wine. Sitting at the foot of majestic redwoods with a journal and a strong cup of coffee. Slow release smiles. My sisters and brothers who love in spite of my inconvenient ways. A crisp white shirt. Pudding.
And a special thank you to the twenty-something who begged me to make out, which sent me into fits of laughter. (I can tell that you just need a hug and maybe some soup, but thanks anyway.) The For Sale sign on the mean neighbor’s lawn. Babies. A shopping bag of used clothing I just know will fit perfectly. Also a shout out to the kind of love that survives pride and ignorance.
Yeah so, those are a few things that make me smile lately to even out all the references to death and depression. Life isn’t Pollyanna and it’s also not Beelzebub- which means it can hurt like hell. Life dismantles everyone, eventually, so I’m not discouraged if my timeline has been shortened, I'm grateful for what time I do have left.
On my desk is a photo by Steve McCurry, the photographer who influenced me to pick up a camera for the first time. It is a photo of Sharbat Gula, a victim of war from the 1985 cover of National Geographic. Her story devastates and humbles, and those wild eyes also remind me to stay awake and aware of how precious time really is. Despite all the pain, there are opportunities for joy in each day. With my own wild eyes I take it all in.
All photo rights belong to the amazing Steve McCurry, https://www.instagram.com/stevemccurryofficial/?hl=en I only talked with him once, while working for Kodak and Saatchi, but you can tell a lot about a person on his professional level by how they treat the newbies. Bows to the master. c. McCurry on cover for blog and photo below. My deepest respect to Sharbat Gula and her family. Although modest and private, she must know her eyes helped wake an entire generation.
