Slower and wiser: A lesson learned on World FSHD Day

I fell last week. I was walking to pick up Shefa, my 6-year old, from pre-school, and, as usual, I was rushing. I had tried to fit in just one more thing before leaving the house, and would therefore be late if I did not take the shorter route to get her. This shorter way is not treacherous, but it is not paved. There are rocks and holes along the dirt path, and it is not a level path, either. When it is raining, it is slippery from the wetness, and when it is hot and dry, it is slippery from the sliding rocks.

I fall often, actually. So this was not an unusual occurrence. I have been living all of my life with FSHD, a form of muscular dystrophy that is both genetic and degenerative. As I result, I have drop foot in both legs, and my calf muscles are atrophied to practical non-existence. So my balance is quite poor, and my feet often get caught on whatever is in the way of my toes. Thanks to the miraculous Dictus Band (a contraption that attaches to my ankles and shoes and uses a rubber band instead of my non-working foot muscle to lift my feet) I wear on both feet, I am able to walk at all. But falling is part of the FSHD package.

Usually, when I have fallen in the past, I have been able to catch myself without doing much harm. I scrape knees and elbows, but usually I am able to stand and move on. Once, I did break my foot, but that was an exceptional fall. This time was also an exception, although I could not help but wonder, as I lay on the ground, when the exception would become the rule. I fell flat on my face into a mound of dirt and rocks and, once I got myself to standing, had to turn around and go back home, with a mouth full of dirt, and my face pounding in pain.

After I called someone to pick up Shefa and I cleaned off my face, I realized some of the pain was coming from inside my mouth. I touched my front teeth, top and bottom, and noticed they were very tender. Some even felt a bit loose. I called the dentist and went for an emergency check up. She said that if after a week or so the teeth are not settled back firmly in place, she would put in a retainer, to keep them from falling out.

When I checked in via email with Belinda Miller, a writer and my FSHD Big Sister in Virginia, who is about 20 years older and ahead of me in the development of the disease, she said she was fitted with her retainer years ago, after a similar fall. She also said that she started using a cane and then a rollator (a beefed up walker, as she explained when I asked) after that fall, and then even later, after more serious falls, a scooter.

“I knew it was time to stop walking — or trying to, after my last fall when I fractured two vertebrae. Too much pain. The walking is not worth the falling. So, that’s the deal, my dear,” I read in her email to me, as I fought back tears.

So, that’s the deal. Had I reached a crossroads? Had that time I had talked about pseudo-casually for so many years finally arrived? I had said it over and over again like I was okay with it — “One day, when I am in a wheelchair…” — but now that the time seemed so close I could touch it, was I really so okay? Apparently not, my tears seemed to indicate.

One of the benefits of being in a spiritual counseling program, as I am now (I just completed the first year of the One Spirit Inter-Spiritual Counseling Program), is that you must be undergoing spiritual counseling yourself. Luckily, I had an appointment scheduled with my spiritual counselor — a Christian interfaith minister who is a woman about 15 years my senior who herself lives with Multiple Sclerosis — less than a week after my fall. She, who lives in New York while I live in Galilee, hooked onto my use of the word “crossroads” when we spoke over Zoom.

“At the mythological crossroads, one can usually look back to see from where you have come, and also see more clearly to where you are going, having been where you were. How does that land for you?” she asked me.

“That feels about right,” I answered. “I see all of those years of insisting I can do it all. Seven kids, one adopted. Six C-sections. Always doing, always moving. Trying to accomplish it all before it was too late. Much of that, I can see now, was because of my diagnosis. And that was a kind of blessing, in a way. But now the message, the blessing, feels different.”

“And now, what do you see ahead of you?” she asked.

“I see a slower and wiser me. I can’t take it easy, exactly. I have too much responsibility, and I still have things I want to accomplish. But slower and wiser feels about right.”

I remembered then a session I had had, as the counselor, only a couple of weeks before with a counselee over Zoom, a young woman who was herself diagnosed with a neuromuscular autoimmune disease a week before our first session. During our last session, we had discussed her overachiever nonstop parents, and how hard it was for her to accept the fact that she would have to live a slower lifestyle, giving herself permission to work only part time and sleep nine to 10 hours a night.

At the time, since I was the counselor in that scenario, I had focused on her and put my own personal pain aside — as I had learned to do in my spiritual counseling program. But now that I was with my counselor, I could address it. This was my time; she was holding sacred space for me. It was my turn to explore what I had learned from my own counselee about giving myself permission to slow down and make wiser lifestyle (and walking or not walking) choices.

“Another feature of the mythological crossroads,” my counselor said, “is that angels tend to show up there.”

One of those angels was on the computer screen in front of me. Others have come in the form of FSHD big sisters, spiritual counselees, and so many other inspirational others living with illness and other life challenges.

Another angel is the author of this blog post, sent to me by Jacob, my life partner, another angel (who is on Facebook while I am still not. I had no idea June 20 was World FSHD Day! See this woman, Catie Kuhn’s blog post about the disease and what you can do to help support those like me who live with FSHD. I just reached out to her to see if she is in need of an FSHD Big Sister.

Perhaps I too can be her angel.