Facing adversity is the acid test of our character. At no time in my life has this been more true than when confronted with the impact of a rare disease called facioscapulohumeral muscular dystrophy (FSHD or FSH). As muscle groups from the face to the feet atrophy, affecting my ability to walk, lift, and speak, life lessons increase in magnitude and meaningfulness. Bending focus on these lessons enables me to make the most of this very challenging disease.
Let’s first acknowledge the virtual elephant in this blog: Many people with incurable or terminal conditions choose to retreat or permanently check out. Not wanting to live with a devastating diagnosis is a “normal” reaction, or so I’ve been told when voicing these options in moments of deep despair. But after I cry it out, rest, and regroup, I turn my attention toward a doable project, a simple goal, or get out in nature, my favorite therapy. Although conditions are far from ideal, I want to be here. And that matters. Surviving, and even thriving in some moments, with a critical condition signals success on some existential level.
There is no app for being human – for training and tracking how to exist with greater grace under duress; for reminding the user that it’s okay to have intensive special needs; for measuring the ups and downs of life’s carnival ride. In a world obsessed with daily steps, selfies, stats, and scores (and I include myself amongst the multitudes) I am accepting that I can just be here regardless of how much I can or cannot achieve.
Living with FSHD has been a complete eye opener for the challenges people with disabilities face. This condition has led me to advocate for automatic door openers, pool lifts, research, and funding for cures, including participation in the Walk & Roll to Cure FSHD which takes place every fall. Some of my proudest moments include success in securing the necessary ADA equipment for venues. It’s hard work, often frustrating, but every victory and fundraiser makes the world more accessible for everyone.
Advocacy work is also extremely empowering. I’m directly involved with the ways and means of making a positive difference instead of moaning about unfair conditions. As highlighted in the 2020 documentary Crip Camp, my forerunners with disabilities fought uphill battles, paving the way for ADA rights. I am forever grateful to these leaders and comrades.
Instagram, fast food, rapid testing, a season of shows with a click…like most Americans, I am a card carrying member of “on demand” culture. However, unlike most Americans, advanced neuromuscular disease forces me to significantly up my game when it comes to patience. The disconnect between fast and slow living is a real doozy of a lesson.
Unable to physically move much on my own – including the ability to itch, type, toilet, or turn in bed – I heavily rely upon caregivers’ responsiveness. When a muscle cramps and I am waiting for help while in pain, or when I must laboriously repeat myself a third and fourth time, I have learned to repeatedly count backwards from 20 to soothe spiking frustration. Deep breathing also helps. Patience will never be my strong suit, but I’m gaining ground. The more patient I become, the more patient others tend to be. I trust that everyone is doing the best they can under trying circumstances, including myself.
Over the last seven years I have graduated from walking sticks, to a cane, to a walker, and now a wheelchair – that is, when I’m not on my red scooter. When you are dealing with a series of guaranteed losses, there is always the opposite potential for gain, in this case schooling in resilience. After a brief, sometimes intense, mourning period, shines the light of a Plan B. As you discover ways to alter, adjust, and adapt, life begins to rearrange itself. With time, the peace of a new normal appears, if only in glorious spurts.
In the summers of 2015 and 2020, I participated in Shakespeare performances; the former using a cane onstage to play in Much Ado About Nothing; the latter racing around on my scooter as the Bear (video) in an online production of The Winter’s Tale. Both experiences were made readily possible with creativity and the positive support of my playful colleagues and husband Lou. The mobility aids actually became a part of my characters, and proved to be some of my all-time favorite roles.
Every adaptation fortifies my spirit and fuels my ability to do it again. Given my condition compounded with aging, I accept there will be additional lessons in resilience.
When your body must be serviced and cared for by others, stuff happens: a scrape here, a bump there, the overly brusque remark, another forgotten request, etc. These are run-of-the-mill, easily forgiven transgressions. More challenging tests in forgiveness arise when energy flags and emotional bandwidths shorten, especially in marriage.
My husband Lou is by far my greatest teacher when it comes to the power of forgiveness. Despite his own aging issues and frustrations with my progressing FSHD, he recommits himself over and again to our marriage vow to support one another “in sickness and in health.”
When I am feeling emotionally vulnerable as the spouse with an advancing rare disease, I have to consciously remind myself that I have the right to the necessary patient care 24/7, the right to laugh, cry, compliment, and complain. Remembering these inalienable rights can be challenging when my husband is simultaneously confronted with his own issues. After recalibrating, Lou returns to being my favorite cheerleader, talented aqua therapist, attentive nighttime caregiver, and best friend. I am strengthened by practicing forgiving him as well.
The word compassion comes from com meaning “with” and passion meaning “powerful emotion.” Parked in my wheelchair waiting to be lifted into bed, my eyes rest on a glossy white figurine of Kwan Yin, the Goddess of Compassion. The sight of her gazing benevolence always comforts me. I am reminded that higher forces await the prayers and petitions of all who seek relief from suffering, and that I am not alone. As the compounded word itself intimates, compassion is both a universal longing and a binding responsibility.
Kwan Yin is to the East as the Mother Mary is to the West. These spiritual entities, with their complex and mysterious backstories, hear the cries of the world. Humanity implores their intervention to quiet fears of disease, destruction, downfall, and death. Comforting replies come in the form of solace and support from the Source inherent in us all. The longer I live with advancing FSHD, the more grateful I am for the support that surrounds me – emotionally, physically, financially, and spiritually. I also try my best to reach out to others with words of solidarity in managing life’s trials. The statue of Kwan Yin is a constant reminder of the lessons of compassion.
In his writing about life with Parkinson’s, Michael J. Fox states, “It may seem hard to believe, but it’s catastrophe that offers the most promise for an even richer life. This is the gateway to the good stuff. In other words, you never truly know which way the wind is blowing until the shit hits the fan.” I couldn’t agree more. Whether it’s karma or kismet, my health struggles are teaching me more about the human condition than a wholly able bodied existence ever would have. These lessons in a rare disease continue to be “the gateway to the good stuff” for me, the kind of stuff that might not cure the body but can certainly heal the spirit.
Although the curriculum may differ for each of us, it’s always open enrollment for accelerated learning in patience, resilience, compassion and forgiveness. Ultimately, it’s about bending one’s focus towards the pieces of purpose with what life throws at you.
Go gently, my friend. Beep, beep.
Many thanks to Maya Holmberg and Melissa Trama for patiently transcribing this article.