I just didn’t see it coming. I knew since I was 18 that I had FSH muscular dystrophy. But I figured I was one of the lucky ones, able to walk and lift and smile with little difficulty. The thought of ever needing a wheelchair – pssh! – never crossed my mind.
At 53, I’ve had a good run, (and it’s with gratitude that the pun fits). I’ve traveled quite a bit of the world, lived abroad, tramped mountains, snorkeled seas and, admittedly, won, not one, but two disco dancing contests back in the day. (Not that you can’t do many of these activities with muscular dystrophy, it’s often just a whole lot more challenging.) I also didn’t smoke or drink; I practiced, and later taught yoga, for over 20 years; I ate healthy (except for the occasional BLT because I will never give up bacon); and I flossed regularly. Sure, there was the normal amount of stress and strain but, overall, life flowed as a blessed adventure in good, clean living. So, as I said, I didn’t see it coming.
Best laid plans
Standing at the kitchen sink washing dishes, the treasured summer sun infused the interior of our newly remodeled Oregon bungalow. In the process of updating the 1922 farm home, my husband Lou and I had paid extra attention to structural details knowing that accessibility might be a future necessity for aging family and friends, not necessarily me (although it was a nagging afterthought). Over a year had passed since we moved back from a successful decade-long work adventure in New Zealand and we were now enjoying re-acclimatization to American life. As I necessitated lifting my left arm with the help of my right hand into the soapy dishwater, I thought, “If my right arm goes, I’m screwed.“
But I wasn’t about to panic, not yet. We had a beautiful home with nearby family and wonderful neighbors (everyone has a superpower and mine is always landing next to great neighbors). If anything serious were to happen to either me, or my hearty, 70-something husband, we were prepared. Hopefully.
No one plans on contracting or inheriting an incurable disease. For those of us with chromosome 4 genetically testing positive for FSH, there’s both good news and not so good news in this regard. Our life spans are expected to be normal, and the condition generally does not affect mental capacity. A Seattle-based researcher for FSH says he meets many CEOs with this form of muscular dystrophy. Productive lives are being lead with the help of mobility devices, (including shiny red scooters,) and physical and occupational therapy. Other therapies, such as massage, acupuncture and supplementation, can also be helpful. I’ve tried them all, and then some.
But is there a cure? Not yet. Will the condition worsen once diagnosed? Maybe, maybe not. If so, how quickly and how bad will it get? No one knows. The disease affects every individual differently. Someone may have FSH their whole life and not be too bothered by symptoms or even realize they have it; another may be wheelchair-bound at an early age coupled with “facial scarring,“ (weaken facial muscles affecting the ability to smile, whistle and swallow, and therefore the “F” in facioscapulohumeral muscular dystrophy). Clearly, I was squarely the former group. As I approached my 50th birthday, however, my condition started changing in ways formerly unimaginable to me.
I only recently learned that FSH can progress in the fifth or sixth decade of life. (What a godsend that I didn’t know sooner! My quasi Type A personality would’ve taken over the reins, worrying and wasting a lot of time and energy on the unforeseeable for thirty years. That’s a lot of precious time, approximately 262,974 irretrievable hours.) Nonetheless, a biological time clock ticked away in me unawares.
My husband noticed changes before I did, as is often the case in these scenarios.
“Do you realize your left arm isn’t swinging when you walk?“
Hmm, he was right.
“When you teach shoulder rolls in yoga class, are you aware your left shoulder isn’t moving?“
Sure enough, little if any left shoulder movement.
Since nothing was life-threatening, I shrugged it off with my right shoulder, and carried on.
Then, like a house of cards, one after another symptom appeared within months. Getting up off of the yoga floor became laborious; friends started to ask me why I was limping or not using my left arm; and I became increasingly tired, very easily. Typing became pretty much a one handed task unless I threw my left arm up on the desk. I relied on a pair of red poles to walk around the block or navigate downhill hikes (yes, with a carpool or gondola, downhill only hikes are possible). And I began dropping glasses after a couple seconds of drinking, my wrist giving way. Still, life was pretty manageable, and high-quality lightweight plastic cups look very glass-like these days. I wasn’t freaking out – not completely, not yet. Alone at night before Lou came to bed though, I began to cry as worries intensified and the first pangs of loss and grief trembled within my soul. I knew that something was changing physically and emotionally, and quickly too. Shit. Shit. Shit.
The slowdown showdown
Acceptance is the path to contentment. In the past three years since FSH muscular dystrophy has taken hold, I have been far from accepting, far from content. With every progressive symptom, an all out mind-body war has played out on all fronts.
I resisted and fought with every fiber of my being and my pocketbook, spending thousands of dollars on hopeful cures for the incurable (of which I will speak of more later in an upcoming post). I was experiencing heavy losses in the activities of daily living: I could no longer wash my own hair, or drive a car, or prepare a meal, or wash a dish, etc. Feeling defeated by an unseen enemy, I cried, often and openly. Terrible anxiety set in. I was in a pretty bad way with my self. So much so that Hamlet’s “To be, or not to be” existential crisis felt like my own.
To be, or not to be, that is the question:Whether ’tis nobler in the mind to sufferThe slings and arrows of outrageous fortune,Or to take arms against a sea of troublesAnd by opposing end them.
— Hamlet, Act III, Scene 1
The Prince of Denmark, however, was surrounded by a remarkably dysfunctional inner circle, and I was not (alas, he obviously lacked my superpower of living near good neighbors). Throughout it all, wonderful friends and supportive neighbors fortified my spirit (and Lou’s) through the darkest days. Some called or visited frequently; others made meals or massaged my feet (if only Ophelia had whipped out the royal foot balm…). Many of them have wiped my nose as I sobbed or held a bag for the nausea I felt when starting antidepressants that weren’t quite right yet. Together with Lou, these are the heroes and heroines of my drama.
A new normal
Today I am dictating these words into my smartphone after having been dressed and fed by my faithful husband and, now, caregiver. Afterwards, I will be suited up to delight in relatively independent movement in the pool, followed by being dressed and helmeted to ride my red mobility scooter into the evening sunset, my husband biking alongside me chatting away as if everything is perfectly normal, which it is.
I am slowly adapting to new daily routines, to new ways of staying mobile and to a new purpose in life – behold Red Scooter Diaries. I can no longer stand at the kitchen sink washing the dishes, but I can appreciate and love those who do that and so much more for me. Lou and I are managing change by naming each progressive symptom and giving our feelings and reactions credit for what they are as a normal part of the process. With Lou’s unwavering support, I maintain helpful practices, such as physical and occupational therapy, acupuncture and antidepressants, but I am not trying to fix the disease anymore. That ego-centered plan, although well-intended, only generated more dis-ease.
Rather, I fire up a new blank screen to share, educate and hopefully inspire others to keep going, especially when they most feel like “cashing in their chips” (more on that later, too). The unimaginable has happened, and I’m still here. I’m doing what I can with what I’ve got, ever grateful for the people, resources, technology and inner “muchness” to play out the journey of being myself, just as I am and come what may.
Although there is no cure for FSH yet, healing is possible. Healing cannot be bought or administered. A good facilitator can certainly help, but ultimately, healing comes by loving what is, inward work that is bumpy and slow and seemingly impossible. But it can happen. And when it does — ahh! — peace bathes the darkness with a lightness, a lightness that feels undeniably like love.