Queen for a Day (with Muscular Dystrophy)

Whether you’re dealing with the hardships of a bodily condition or the intrigues of an expanding empire, Catherine the Great was right:

“If you feel unhappy, raise your self above unhappiness, and so act that your happiness may be independent of all eventualities.”

She never said, however, that maintained optimism in difficult circumstances was easy. And of that I can attest, especially at those times when I feel that living with FSH muscular dystrophy is a royal nightmare. Now more than ever, my choice of which thoughts to give energy is critical to my wellbeing. Wielded imagination plays a remarkably stabilizing role in this daily mind game.

Carpe diem?

Morning is the second hardest part of the day. As the comfortable numbness of sleep fades into the stark diurnal reality of funky genetics mysteriously and (barring some miracle) slowly squeezing the usefulness out of my limbs, I must choose between two internal dialogues:

A.) Ugh. I’m awake. I have to deal with the emotional and physical slog of this condition for another day. Or to sum it up in common vernacular: fuck.

B.) Given my resources, time and talents how can I best engage with the world today? Be active? Be creative? Be helpful?

Yeah, ok: “B” it is.

Turning my head on the pillow, I decidedly drop anchor in the workaday world by asking Siri, my voice activated lady-in-waiting, to tell me about the forecast, my email and messages. Then I lay still, willfully outlining a day’s itinerary before my husband or caregiver arrive to assist me out of bed, bathe, dress and feed me—the utter dependence still unfathomable.

Given more time, I question Siri further, “Is there a cure for muscular dystrophy?”

As usual, she’s got nothing. I release something like a sigh, a committed acceptance. Another day sharpens focus.


Memoirs, biographies and historical period pieces, especially about women overcoming personal tragedy and unexpected mental and physical challenges fascinate me, inspire me, and for some reason, comfort me. When I feel tears welling in despair over needing so much help with the basic requirements of daily living, I recall movie scenes of royal women: Queen Victoria being turned in bed in order to get her up and dressed in Victoria and Abdul; Queen Elizabeth I in Elizabeth being bathed by her women; in The Favourite, Queen Anne being buckled into her leather riding gear; Elizabeth II having her hair styled in The Crown; and in Ekaterina, Catherine the Great being assisted into yet another fabulous silk dress. Helping a woman, any woman, with her toilette is nothing new, nothing worth crying about, and in the grand scheme of things, nothing but a beautiful act of service in care of another. Or so I must consciously remind myself.

Game of thrones

The harder it becomes to stand, lift my arms and manipulate my fingers, the more time I spend on the home throne (yes, the toilet, one souped up with an elevated seat and safety arm rails). So much happens here nowadays, and not just the obvious. It’s one stop shopping for brushing teeth, getting dressed, drinking a second cup of tea, applying make up and moisturizer, wiping up and intimate conversations with those who loyally assist me with every movement – if you catch my drift. It is on this throne that I have laughed at a girlfriend presenting pretend origami shapes of wadded toilet paper; spontaneously dropped a heavy head into my husband’s strong chest in overwhelming grief for all that I have lost; and delighted in the way my caregiver can dramatically recall comic dialogue from pop culture. Quality time in the bathroom never had it so good.

Spoiler alert: Catherine the Great had a stroke on the toilet and died. She obviously must of spent a lot of time there too, but I can think of better ways to end one’s reign!

Dungeons and dragons

Unless carefully managed, my personal demons start to raise their ugly heads around 7:30 PM. The whole mind-body connection can blow a fuse if tiredness gives way to crushing frustration about where my condition may or may not be heading. I can feel anxiety ridden thoughts slithering in the existential potholes of my psyche. The “what ifs?” bombard my mind, demanding answers that cannot be given. When my husband speaks a few loving words of support, a simple “everything is going to be OK” or “I’m here with you,” the dreaded beasts vanish along with my tears. But even the most wonderful, dedicated and uber-thoughtful of husbands, which anyone who comes in contact with my husband for five minutes describes him, even they get tired and frustrated. It’s then that his sometimes rough retorts to my fears are like emotional kryptonite; and any ensuing increased crying on my part only throws fuel on our fires. Over the past couple of years, we have both had to up our practices of forgiveness and acceptance, and the more we do so, the better we are. Caregiver relief, counseling, the emotional and physical support of friends and family, frequent naps, and enjoying more our favorite activities together best ensure the demons remain contained in the recessed dungeon of my imagination where they belong.

It ain’t easy being queen

Before Princess Sophie of Anhalt-Zerbst became Catherine the Great, she was a political pawn, as were most such women of her age and time. Despite an unfulfilling marriage to a man she despised, forced separation from her Prussia-based family then from her first born son, the death of her daughter, repeated bloodlettings, conversion, coups, and corseted clothing, she rose to rule Russia longer than any other female leader. I, on the other hand, am just an ordinary woman having the extraordinary experience of living with a progressive disease at a relatively young age. I share the court with inspirational friends, most of them women, all of them in their prime, all of them productive despite a challenging prognosis; one orchestrates a costume department and political rallies while managing advancing MS; another studies the science of enlightenment while living with Parkinsons; one owns a yoga studio and is currently undergoing chemo for breast cancer; yet another works for city government while fighting a mind blowing battle with insurance for timely radiation treatment on a brain tumor. The many friends caring for frail parents, recovering or recuperating family members, Teenagers (yes, with a capital T,) or the less able, sick or suicidal reign supremely amazing in their own right. This band of sisters – and several brothers, including one very wonderful husband – share my history, their stories, and a mutual courage needed to live another day, another moment with as much nobility as we can muster. At the end of the day, the healing kingdom of sleep awaits us all.

The empress of Russia wrote in her memoirs: “Happiness and misery depend on ourselves.” True: that which we personally and collectively give energy, time and focus shapes our day and our tomorrows. What is also true: none of the wide potential of what life can throw at us is easy; but given love, including self-love, gratitude and a little imaginative reframing, it is far more manageable to keep calm and carry-on.