Lessons From Being Temporarily Disabled

I am among the people lucky enough to have been born able-bodied. Like a lot of us, I have generally taken for granted that my body would work the way I wanted, when I wanted it to. And sometimes got snippy when it didn’t. Hello, entitlement!

Oh, there have been minor inconveniences. I inherited both my family’s love of reading, AND a need for glasses or contact lenses at an early age. When I was in fifth grade, I broke my arm. I’ve borne a child and gone through the rigors of uncomplicated pregnancy and childbirth. Most recent inconvenience being my bout with Cancer Lite.

But it wasn’t until I was diagnosed with Morton’s neuroma in my right foot, about twelve years ago, that I got a taste of what it feels like to be less than fully able-bodied, for an extended period of time.

Morton’s neuroma is a pinched/inflamed nerve ending, between the third and fourth toes, that builds up thickened tissue around it. It can cause a sharp, burning feeling in the ball of the foot, or numb or tingling toes. I’ve had both, but mostly, the horrible burning pain. It’s treated with cortisone shots, custom orthotics, and surgery, where (grab your barf bag) they go in and scrape off the excess tissue, like meat off a chicken bone. Side note: My oldest sister has had this surgery, and I just learned that Steven Tyler of Aerosmith had this, and underwent the surgery for it, too. Bro!

I’ve had the shots, and the orthotics, but so far have avoided the surgery, because the side effects of that can be loss of feeling in the toes, and impaired balance, and I am already clumsy as fuck.

But it immediately threw a kibosh into many of the ways I liked to have fun; hiking, aerobics – basically any weight bearing exercise. I went to a free Blues dance class, and I loved it, but by the end of the night I was in tears, it hurt so bad.

It also has been a factor in my steady weight gain that began about that time – which leads to a vicious circle – more weight means my foot feels worse which means more time NOT using my foot, so, more weight.

And then about the time of the first Women’s March in January 2017, plantar fasciitis made an appearance in my left foot. That’s a condition where there’s an inflammation of the connective tissue on the bottom of the foot, by the heel. Again, cue in stabbing foot pain. Now I had a matched set!

So any aspirations of becoming a late-in-life ballerina were pretty much gone. Also, being in a second story apartment, everyday tasks like bringing up groceries, going downstairs to the laundry room, became spoons I carefully hoarded.

Perfect timing to plan an excursion to London and Paris, amirite?

I got treatments, new orthotics, new sneakers, and began weekly physical therapy on both feet: heat, tens stimulation, laser treatments, heat treatments, several months before the trip. And it helped, a lot. My Morton’s neuroma is greatly improved, and my plantar fasciitis seems to have disappeared – three months after the trip concluded.

The machine that zapped my feet.
My feet, getting wrapped and zapped.

With the aid of megadoses of Advil, Tylenol, and Alleve, I was able to limp through London and Paris. And I loved being there, and seeing all the sites, and eating all the food, and meeting all the wonderful people.

But there were nights, back in our room, I crawled to the bathroom because I couldn’t manage to get back on my feet. And there were so many stairs, everywhere. So very, very many stairs.

Even when there were escalators, there were also stairs.

With handrails, and the aforementioned drug cocktails, I managed. I had to seriously plan around my limitations, finds places where I could sit down, and figure out how long I would need to be off my feet. I measured my steps like kind of a reverse Fitbit.

That trip really made me ponder how difficult it would be to get around those cities, and my own, Los Angeles, if I was more disabled than I had been.  There were very few stops, on the London Underground, or the Paris Metro, that had elevators to the street level. Not that I’m blaming them; they have fabulous systems compared to many cities. But if I had been in a wheelchair, or used a walker, most of it  – the cheapest form of public transportation – would have been inaccessible to me.

This leads to a Catch-22 situation – people with disabilities don’t tend to present themselves in areas where they suspect or KNOW they can’t be accommodated. So, out of sight, out of mind – they become invisible, and few think to make transportation, public spaces, restaurants, etc., accessible for people with mobility issues, or compromised vision, or hearing impairments, and especially, olfactory issues.

I have a nephew with hearing impairments, in both ears, and other friends who are deaf in one ear. I am learning to use gestures to catch their attention, to enunciate clearly, and to speak to their good ear.

I don’t know if there is any way to become 100% aware of, sensitive to, and accommodating of every single disability. For example, I periodically host discussion groups in my home, which, as noted, is a second story apartment. With cats. I’ve looked for other venues, on the flat, without pets, but the best I can find in the area are restaurants, and then those have a purchasing minimum, so they aren’t a good venue for those on limited budgets. As an organizer and facilitator, how can we make meetings disability-friendly? (As well as welcoming to POC, LGBTQ people, and those on limited budgets?)

I’ve begun wearing cologne much more sparingly, and lightly, but I’ve become aware that there are people with the kind of environmental sensitivity that makes even a little exposure, torture for them. Does this make me a selfish bitch, that I continue to wear light cologne for my own pleasure, in the absence of knowing I will be sharing space with such a person?

In The Joyous Body, Clarissa Pinkola Estes talks about the fact that of all the people in the world, only 19% do not have some kind of physical disability. That means the other 81% of us need some kind of help or accommodation: whether it is eating many small meals each day to help with diabetes; glasses or contacts; taking medications (including those for mental health issues, because those are also physical issues); ramps or elevators; a workplace free of heavy colognes and perfumes.

Like most people, I tend to focus on the things that make my life harder, or easier. But I am trying to simply pay attention, and to use social media to signal-boost messages bringing attention to disability issues. Politically, I support candidates, platforms and bills that are inclusive of increasing accessibility for disabled people, though with the burning dumpster fire that is the US political system at present, it doesn’t have my undivided attention.

What or how, in your opinion, can we work at bringing more attention to disability issues? How do we find the way out?

7 Replies to “Lessons From Being Temporarily Disabled”

  1. We may have the best of intentions but until a disability touches us or a loved one… it’s not front and center on our list of things to fix or fund. I don’t think it’s any more selfish than wearing cologne. It’s just the way it is. Each year America becomes more of a disability-friendly country. Is there more we can do? Absolutely, but let’s be proud of how much we’ve done in so many areas. Like you, I have terrible foot problems… Crawling to the bathroom I can identify, but I must live with it and navigate around it. And fragrance of any kind… even fresh lavender? I get the headache from Hell, but I’m happy everyone else enjoys fragrance.

    1. Fresh lavender is on the strong side for me, as well. And while I don’t have the kind of allergies that make people miserable, I hate walking into an elevator or parking garage and the person is gone, but the scent remains. Did they bathe in it, or what?

      I do find it encouraging that we are doing more to accommodate people with disabilities, but we must keep pushing for more.

  2. OMG I can so relate! I can’t tell you how pissed off I was at everyone enjoying health when I felt like shit during chemo. Then when I had surgery for a torn off meniscus in recovery I would snarl at curbs. Yes the world is not fit for disabilities! BTW have you considered library branches that have meeting rooms?

    1. Yes, but the local libraries here in Los Angeles charge a fee. Usually about $250-$300, for a four hour minimum.

      Reality is we are almost all going to be disabled someday. I am glad that we are making some accommodations for mobility and visual disability, but we have a ways to go.

  3. My “welcome to the world of disability” came with the discovery that “mild” scoliosis, never diagnosed, had left me with increasing back pain. That left me with various decisions when my back issues flare up, including “can I get up or down from the toilet seat at work?” or “can I get into the car today?” I’ve been told by friends who are world travelers that the United States is one of the most disability friendly countries. We can do more, yes, but at least we are conscious of the struggles of others today. It wasn’t like that years ago, when my Dad struggled with some permanent aftereffects (seizures) from a service connected head injury during World War II.

    1. Yeah, compared to some other places,

      I’m sorry about your back issues, that doesn’t sound like fun.

  4. I think Los Angeles does a decent job of accommodating people with disabilities and have added building codes for the handicapped. But, when I was on a cruise, I tripped over my suitcase and had to hobble through Barcelona and several other ports where there were plenty of stairs. We tried hauling luggage in Victoria Station and couldn’t find an elevator anywhere.

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