When the global pandemic lockdown began, someone from my FSHD (fascio-scapular muscular dystrophy) Facebook group wrote: “Now at least everyone else knows what it feels like to be physically confined.”
I only wish the lockdown experience had sensitized people more to the physically and/or mentally challenged or “special needs” community. Sadly, I am not sure it has.
I write this post as we enter World FSHD Day (#WorldFSHDDay, on June 20), devoted to raising awareness about the genetic, degenerative neuromuscular disorder with which I was born and for which there is no cure or treatment.
The disease progressively affects certain muscles groups (facial, arm and shoulder, abdominal and back, leg and foot) and spreads throughout the body over a person with this genetic defect’s life – in many cases, eventually reaching their respiratory system, which can be fatal. Twenty percent of FSHDers are in a wheelchair by age 50, and over 70 percent experience debilitating pain and fatigue.
Although I had symptoms from early childhood, my diagnosis at age 16 came as a total surprise to me — I had never even heard of FSHD! — since there were no known cases before mine in my family. Either previous cases were not severe enough to be diagnosed, or there was not yet enough known about the disease to offer a diagnosis. It is also possible that the onset of the disease was caused by a spontaneous genetic mutation. In any event, there is a 50% chance I have passed this genetic defect on to my six biological children. Two already have been diagnosed.
I walked into the doctor’s office one day a “normal” human belonging to the category of the able-bodied – although with the initial facial and scapular weakness that brought me to the doctor looking for answers — and walked out “abnormal”, instantly shifted into the category of the “disabled”, or those with “special needs”, or whatever the accepted term is at the moment for those like me who cannot perform tasks others take for granted.
Being part of a community of “others” has been an eye-opening experience for me. Although I cannot say that is because most others have opened their eyes to me and others like me.
FSHD is a disease that is difficult for people to understand. While some of my muscles work just fine, others are totally atrophied. Also, I have not lost complete use of those muscles; they are not paralyzed. But they are weak and getting weaker. And on some days they can be stronger than on others, depending on how much I work them, how much sleep I got the night before, the weather, and a variety of other factors.
On top of that, with my walking aids, I can walk long distances, even if I am zonked afterwards; but without them, I cannot even walk a few steps without tripping over my own feet.
This is confusing for people who don’t know what to make of me, which leaves me feeling invisible and misunderstood, as I have since the country began opening up after the lockdown because of the Corona virus.
During the lockdown, I felt somewhat safe and supported as a person at high risk (I am considered in this category because my FSHD has begun to spread to my diaphragm and thus compromises my breathing). The country, the world, had my best interests at heart, even if there were no guarantees I wouldn’t get sick.
But when everything abruptly changed — the kids went back to school, the community started gathering again, cultural events resumed, groups and classes I had been participating in before the pandemic started meeting again in person instead of online, I received wedding and other invitations including to my children’s school performances, and I was expected to show up at all of the above — I suddenly felt not only overlooked, but dispensable.
It was like getting a slap in the face, a hurtful reminder that some humans are more equal than others. As a friend of mine explained (and I appreciated her honesty): “It is unfair that people like you will have to self-isolate now, but that’s what must be done to save the economy.”
This, I felt, was being optimistic. At best, I would just have to self-isolate. At worst, I would contract the virus from the family members with whom I live but who are no longer sheltering in place or even physically distancing. Although, the truth is, I knew it was not just the economy that suffered during the lockdown. My children were having a very hard time being confined and without an educational framework or social interaction with their peers. If their friends were going back to school, it did not feel fair to ask them to stay home.
So I tried to tell myself the virus would disappear with the increasingly warm weather, that the worst was over, and prayed that my kids would not contract the virus at school. I continued to shelter in place and keep my physical distance from people not in my family. I did not go to community gatherings or prayer services. I did not accept invitations to meals at friends’ houses, cultural events or celebrations. This at least gave me a feeling I was doing something to somewhat limit my chances of contracting the virus.
Then the numbers started rising again, and almost 200 schools have had to close because COVID-19 was found in their staff and student bodies. Yet, I do not see motions to close other schools or stop public gatherings. In fact, I missed my son’s show at school because it was in a closed auditorium for three hours, and I knew most people would not be wearing masks.
I could not ask the school not to hold the event – what I wanted was that they decide on their own that it was not appropriate and maybe do a video instead – but I could at least choose not to go, even if my son and husband went and could therefore bring the virus home to me.
I do not expect the world to revolve around me or any other person with special needs, nor to make decisions that affect the majority who are not as “special” as we are based on our “needs”. What I would appreciate is acknowledgment of the sacrifice those of us at high risk are making so people can go back to living what the majority of society considers “normal.” But perhaps that is because the majority of society falls into the category of “normal”.
One question I am pondering is this: Is survival of the fittest really normal? Is majority rules really normal? Or are these world views considered normal because those who are fittest and the majority are the ones determining what is the norm? Either way, some recognition of difference – especially when that difference causes a feeling of being disregarded or even discriminated against – could still happen without the world as we know it toppling.
While I do not want people to stay in lockdown until a vaccine is discovered, I would like to feel seen — and heard. This is why I ran for our kibbutz’s “Special Needs” committee last week. Rather than hope others will anticipate my sensitivities around being a tiny “disabled” minority in a community of mostly able-bodied people, I was hoping to raise awareness. I was not elected to the committee, however, which feels to me like a shame — if not a bit patronizing as well.
While advocates for people with special needs are important, no one – not even someone who lives or cares for someone with special needs — can know how it feels to be in the shoes of someone who is disabled if they do not live with – I mean, in their own body — a disability themselves.
While they may be able to measure the angle of an incline or the width of a door to make sure it is wheelchair accessible, they cannot know how it feels to be in a wheelchair and what measures can be taken to maintain the dignity of someone who uses a wheelchair. And while they can make sure guidelines from the health ministry are being followed during a pandemic, they can’t know how it feels for someone in a high risk category to receive emails from the community about the resumption of communal gatherings without any acknowledgment of what this means for those at high risk.
They can guess, but they cannot know for sure. Just as no one can know what it is like to live with FSHD.
FSHD means living with uncertainty. I know my condition will continually deteriorate, but the rate at and extent to which this will happen is a total unknown. For each person with the disease it is different. And so, I move through life differently than others around me.
None of us can guarantee that in the near future we will not need a motorized scooter to get around, or a BiPap machine to help us breath, or a personal aid to help us eat and drink; but for most people this will not be their reality if a cure for their genetic disease is not found soon. For me it will.
On World FSHD Day, I am proud to be part of a community of people with this disease who are empowering ourselves by raising awareness about FSHD and advocating for our own best interests. Our speech may be slurred, but we refuse to be silent. Our bodies may be deformed, but we refuse to be made invisible.
When I was diagnosed, scientists had not yet discovered the genetic mechanism of FSHD. Thirty-six years later, they know much more and are on the way to discovering a cure. Trials are in progress, and with the proper funding and advocacy, my two children with the disease can have a cure by 2025 before their condition deteriorates much further. Please pass on this message. You can learn more about FSHD and make a donation by going to the FSHD Society’s website at https://www.fshdsociety.org/.