My mother’s walk through life with polio

When we think about polio today, it is often in one of two ways: with an historical eye to the time before vaccines, when terrified parents would keep kids away from public places during outbreaks, or in talking about acute cases, the number of people sick in this the moment. (Answer: Currently one — a man in Rockland county, NY — but public health experts fear that’s just the tip of the iceberg as the poliovirus has been found, through wastewater testing, in Rockland County, neighboring Orange County and New York City).

But we almost never think about what it is like living with the consequences of polio, year after year, decade after decade. Polio has lasting repercussions that ripple outward over a lifetime, touching on everything that person experiences from the moment they get sick through the end of their lives. Up to 20 million people worldwide are polio survivors.

Shoes, shoes everywhere

I don’t really know anything about the acute phase of my mother’s illness: how sick she got or for how long she was hospitalized. I don’t know anything about the course of her disease or all the things her anguished parents did to make sure she had the best outcome possible. All I know is that she got infected when she was a toddler and over the next twenty-plus years she endured many summer surgeries (so as not to miss school) and spent many months in a cast, recovering.

In addition to being smaller, her affected leg was full of scars. In photographs, she’d try to position herself to obscure it as much as possible. She also had a long scar on her good leg, from where they removed a piece of her thigh bone in an attempt to make her legs more even.

The shoes my mother had to wear were custom made to fit her uneven feet. The left shoe was smaller, and it had a lift. But it was not enough of a lift to prevent her from having a pronounced limp. This unevenness in the length of her legs eventually led to scoliosis, a curvature of her spine.

My mother had a distinct way of walking — she’d step forward placing all her body weight on her good leg then send her bad leg forward by swinging her hip, then she’d momentarily shift her weight onto the bad leg and step quickly forward again with her good leg. Her bad leg acted a bit like a wooden peg leg. This created a distinct clip-CLOP when she walked; my sister and I could hear her coming a mile away. We would, of course, make full use of that warning system to drop whatever forbidden activity we were engaged in and pretend to be doing our homework or sleeping soundly, when we heard her in the hallway. She only ran — a skip-and-hop gallop — in real emergencies.

You’d think that some of it — the surgeries, the recoveries, the scoliosis, the fact that one leg had to do all of the work — would have been painful, but she never complained of anything, except how messy our rooms were. My sister and I never heard her dwell on her situation or her inability to participate in an activity; she never seemed frustrated. She was stoic — a trait shared by many polio survivors; she just marched forward, limp and all.

My mother ordered her shoes from Argentina, where an orthopedic shoemaker had an exact mold of her feet. She wore shoes in one of two styles: Mary Janes and T-Strap. At any given time, she might have two or three pairs in a very small variety of colors (black, brown, white or blue). When they completely wore out and fell apart, she would order one or two more. I recall they were very expensive.

She never got to wear dainty ballet flats, casual espadrilles, ugly-but-comfortable Birkenstocks, elegant riding boots — not even sneakers. Even if she had gotten regular shoes in two different sizes, it just would not have been comfortable — or maybe even possible — for her to walk. That meant she never got to own a pair of whimsical pink shoes “just because,” or chunky Doc Martens that made her feel like a badass walking down the street, or sexy pumps that made her feel like a movie star.

My sister and I never got to play dress-up with her shoes; we did not dream of one day borrowing them to go out dancing or on a date. And that was ok; we never even knew it was something that little girls (and some little boys) did.

Silver lining

Although my mother avoided the worst outcomes of polio — death or needing an iron lung — I always wonder what her life would have been like if she hadn’t gotten infected. Would she still have married my dad — or would there have been a more dashing, perhaps taller suitor? Would she have chosen a more exciting job than her secretarial position at the United Nations? Would she have been too busy leading the glamorous life of a jet-setter to want to bear children? Who among us ever knows what could have been?

But I could also flip that: what did polio push her to accomplish? I like to think that being “different” motivated her — gave her the impetus to settle thousands of miles away in New York City, far from Buenos Aires and what surely would have shaped up to be a more traditional life. Would she have chosen to leave the warm and safe embrace of her family and friends if she had not felt the need to prove, if only to herself, she could make it on her own? Again, there’s no way of knowing.

Still, I think it’s pretty safe to say polio had a profound and lasting effect on her life choices and her personality. Like many people with a visible disability, she loathed being the center of any kind of attention (she’d probably be mortified to know that she was the subject of this article). Also, she always vehemently refused special privileges, especially if she perceived them to be out of pity. A classic example: it was only after decades of living and driving in New York City — where parking is both a blood sport and a strategic game of chess — that she even applied for a handicapped parking permit, and that was only because my father insisted.

She also had a lifelong fear of doctors, hospitals, the medical establishment. Even though she was probably too young to remember her earliest experiences with polio, the body remembers and holds on to these early terrifying, bewildering events. And despite her being a very dutiful and compliant patient, this underlying fear manifested in white-coat hypertension and a racing heart so severe that one doctor even had her wear a monitor for two weeks just to make sure there were no underlying heart issues.

But polio also made her strong. It sharpened her sense of what is right and wrong, acceptable or not. It crystallized her goals, and, once in her crosshairs, she went after them methodically and with a single-minded focus. It also made her able to endure hardships and disappointments large and small through sheer will. My sister and I never saw her feathers ruffled—she was always cool and composed.

Polio also had subtle effects on us, her family. The unspoken rule was: protect her. When walking along the sidewalks of the city, my father would always position himself in a way that would shield her from unintended bumps of passersby. On the rare occasions when she would take the subway, one of us would always stand behind her as she went up the stairs, one step at a time. A common admonishment from my father to us was, “Don’t wear your mother out.” We always tried not to — but it’s hard when you are young to rein in your childish wants.

Her limp meant she couldn’t really run or chase us around the playground, but I don’t think my sister or I ever noticed. As a family, we never did athletic or outdoorsy activities; we never went camping, hiking, bike riding or skiing. We did not even take long family walks through Central Park. But we did other family things, like play board games and cards, and we went to the theater or traveling, when money wasn’t tight.

The final insult: post-polio syndrome

While I don’t think that polio cheated my mother of having a full and happy life, packed with friends, family and fulfillment, I do think it did rob her in her final years.

After working hard for decades to lead a “normal” life, polio caused her body to betray her again when she developed post-polio syndrome, a condition experienced by an estimated 40% of polio survivors. The March of Dimes, an organization founded by Franklin Delano Roosevelt after his struggle with polio, estimates up to 250,000 people in the US may have it.

Like others who get PPS, she started experiencing muscle weakness and fatigue. Her leg would suddenly collapse and she’d go down– in the apartment, on the street, wherever. While terrifying, we were lucky she never broke a bone or cracked her head, but there were many close calls and lots of ugly bruises. Eventually she started wearing a brace.

Researchers aren’t sure what causes PPS, but the best guess is that after the initial infection, where patients can lose up to 70 percent of their motor nerve cells, the surviving muscle fibers attach to still-working motor nerves, allowing the patient to function. But eventually those motor nerves — which have been working twice as hard over the course of decades — get tired and wear out. People with PPS can go from being quite independent to needing a lot more assistance.

My father was right about not wanting us to wear her out. We didn’t know it at the time, but her strength and mobility had an expiration date.

My mother also developed Parkinson’s Disease, so in essence she had a movement disorder on top of movement issues. It made her incredibly unstable and she fell more and more frequently. Eventually she went from using a cane, to a walker, to a wheelchair.

While exercise is important for delaying the progress of Parkinson’s Disease, it is pretty much a no-no for people with PPS. In fact, the motto with PPS is “conserve to preserve” — that is, conserve your energy to preserve your function. PPS requires polio survivors to avoid chronic overuse of their muscles — something their bodies had done by necessity every single day of their lives — in order to stay operational.

It turns out exercise is also good for staving off dementia, as study after study has shown. Was polio, which prevented my mother from exercising in the traditional sense of the word, a contributing factor to her dementia? Was Parkinson’s? Was it an unfortunate combination of the two? Again, the answer is unknowable. (The one saving grace polio bestowed on the situation is that my mother was unable to wander off on her own — a frequent occurrence among dementia patients.)

In the last six months of her life, my mother no longer had any need for the specially made shoes that allowed her to literally and figuratively move through life. When she died, my sister and I each carefully picked out a pair to keep as a reminder. The shoes represent her strength, her accomplishments, her life. The shoes are her.

My mother died in 2019, at the age of 80. For more information on post-polio syndrome, visit Post-Polio Health International.