The changeable weather typical of early spring in the middle of New Mexico of late reminds me of the confusing alterations in life that tossed me this way and that during the several years of my childhood between major hospitalizations. To me living in a spacious western state is as far as it was convenient to get from the crowded environment of the east coast where the polio forced itself on me and my family.
With mighty whoops of glee Elf and Opus, the dogs of today, have flown in and out of their small dog door in the laundry room for the past ten days. It has been warm enough to coax early buds onto bare tree limbs and entice a few bees to buzz around as though there were some place to go.
Then yesterday, back to colder temperatures, higher winds, a bit of blowing snow. People coming and going to see our home, which is for sale … Dogs zonked out on their soft beds, snoring noticeably.
The first year or two after Children’s Hospital released me, a recent paraplegic, into the big world of people with “normal” legs and effortless ambulation were not emotionally painful. The family support team was strong and capable, eager to further my efforts to get around as though not much had happened to me. The few people who didn’t know what exactly polio was — and so feared my presence amongst them — were eventually brought around to grokking the lack of risk a polio survivor like me was to their children in school.
My big challenges involved working out ways to get around, driven as I was to go on doing the things I loved and paralysis be … overlooked.
Lest anyone think that I and my family were out of kilter in striving to reduce the importance of major paralysis, I should point out that in the mid 1950s polio survivors often were pushed by medical people urging families and patients to keep on going, with the goal of living a fulfilling and capable life. Over six decades later it is apparent that a great many of us did, in fact, become pretty tough. Just possibly this was the best thing (after keeping us alive) to come out of the medical system of those days.
This approach had the advantage of drawing all sorts of good people with skills into creative adaptations that helped us get around, long before the days when health insurance stepped in to take over so many aspects of life.
Several helpful events supported my return to the regular world:
—A carpenter friend of my mother’s built a small set of stairs, with railings, on top on the front porch steps, so I could whiz in and out of the house effortlessly.
—A wealthy great aunt passed on, leaving my mother with some English antiques and enough funds to buy a lovely new four-door Buick, in which I, riding in the back seat where I did not get carsick, felt like the new, young Queen of England when my mother drove me to school, friends’ houses, Campfire Girls meetings and for swims in local ponds. The distribution of Dr. Jonas Salk’s new polio vaccine less than a year after my illness was just beginning to quell summer polio epidemics. People were back to fresh water swimming in droves, which wasn’t really wise. In 1955 there came yet another polio epidemic, which struck a little girl down the street from us. From what I later heard, that girl never emerged from institutions.
—The same great aunt’s bequest enabled my mother to remodel a downstairs pantry into a bathroom, which made a huge difference to me. Since I had grown too big to be carried upstairs to the bathroom a few times a day, somebody had gifted us with an old fashioned bedside commode. I loathed it as an emblem of my non-normal state.
I had adopted the lifestyle encouraged by my old Children’s Hospital doctor, Fuzzy Wuzzy. AKA Dr. David Grice. He insisted to my mother that the fewest possible number of special adaptations would get me to “back to normal-as-can-be life” as fast as possible.
That thinking caused me denial of a wheelchair, so anytime I needed to move around when I didn’t have my leg braces on I had to stick my feet awkwardly into the shoes attached to the bottoms of the long braces, tie the shoes, then to do up a dozen leather straps before I could “jump up” and get to wherever I wanted to be.
That taught me the value of advance planning. I liked my braces very well for giving me back the ability to walk, yet they were uncomfortable, pinchy things that were hot in summer and icy cold in winter. Sometimes they rubbed my skin raw. It was nice to shuck them off to sit in the grass or on a soft carpet by a fire.
Fuzzy Wuzzy was right about a lot of things — I did grow up tough and determined to be myself in a strange, strange world that did not always welcome me. But he was dead wrong about one thing — it is not a good idea to walk around on your crutches and braces with your head held high at all times. That proud head and all that is attached below tend to end up flat on the ground when you don’t keep an eye on potential hazards down below. Slippery things like water or grease, cellophane or talcum powder on a floor, ice and holes in the ground outdoors were responsible for way too many concussions, among lesser injuries.
—My parents had my IQ tested for whatever reason that seemed necessary. They were a bit awed by the result. Then, concerned that I would puff up about it, they began alluding to people with impossibly vast brain power. Like Einstein.
—Feeling a bit more empowered to exercise my wits, nevertheless, I finessed my brother and his friends to help me back into the world of outdoor adventure. The first winter after my return home we had lots of snow and for Christmas Donny and I got a round metal, saucer shaped sled alternative called a Doodly Hoop. The boys were persuaded to haul me in that up the hill behind our house, Then to give me a flying shove down the slope — a big thrill for my newly slowed down self. Till the day I crashed into cedar tree, hurting a finger and breaking in half the stone in a special ring my mother let me wear.
Less exciting was the necessity of fairness, to disembark and sit in the cold snow while the boys took their turns. There were more of them than there was of me, so a cold backside got to be the normal thing when we went sliding. It was well worth it, though.
That thrill of slippery DH rides took a bit of a blow one icy evening when the boys agreed to haul me down the street so we could watch the moon rise. Our country road had so little traffic that we hadn’t thought it necessary to mention our plans to any parents. Off we walked and slid, pausing now and then to eat left over Halloween candy we’d stuffed into our pockets.
About the same time that my hands and feet were beginning to feel really, really cold — I was separated from the snow and ice by nothing but a thin sheet of curved aluminum — we heard the distant rumble of a car coming around a bend.
My willing haulers held a conference amongst themselves before unanimously voting to obey that useful parental rule about not standing in the middle of the street when there were cars around. Off they shot — leaving me sitting, in my dark coat and hat, in the DH, pretty much where the line would have been painted in the middle of the street, which was too narrow to merit a line.
The sun was well down as I watched the big grill coming closer and closer. So cold had I grown that it was difficult to get my arms up and waving, but eventually I did, the driver spotted the animated dark splotch against the white snow, got out and pulled me and the DH back to my house.
Once inside my mother subjected my frostbitten hands and feet to a soaking in cold water. It felt like fire. Meanwhile, into my psyche she burned every word of a ferocious lecture about not going anywhere near the road in a Doodly Hoop ever again. This, I thought, was pretty odd coming from her, who as a child with her two daredevil brothers used to sled down a steep hill in front of their home. That was fine till the hill ended and the road began. Along that road one day she and her sled shot straight beneath the wheels of a car, causing considerable ankle damage. In some maternal concern about not filling me with fears, I don’t believe she’d ever mentioned that part of the story before.
The second half of the “free” time I had between hospitalizations got me more away from home and into the sparsely populated community around us.
There were the second and third grades, where the only really difficult work was getting up from my desk fast enough to say the Pledge of Allegiance with the rest of the class each morning. For the fourth grade I was present for just a couple of fall months before fate whisked me off for horrible encounters of the doctor kind, which is a different story.
Donny and I were allowed to invite a friend each for a trip to Boston, where we saw a movie that I have forgotten, apart from its strangely brilliant, distorted colors, walked around the downtown and Chinatown areas, and ended up eating the first pizza we’d encountered. In Chinatown. I thought it was the worst thing I’d ever tasted — except turnip — but the disappointment was tempered by the pleasure of having actually walked so far earlier without wearing out.
Back at home I began visiting my great aunt and uncle, a fairly short walk away along a busy highway. Mainly, besides Auntie’s home made cream puffs and her lessons on separating cream from fresh milk, I loved hanging out in their large barn, watching draft horses come in after their day of hauling logs from forest to the sawmill my great uncle owned.
I loved those gigantic creatures. They moved slowly and deliberately, went sensibly into their stalls after pausing for deep drinks at the water trough, and then began munching, with satisfactory sounds, on hay filling the mangers in each stall. When nobody but Donny was looking I would try to sneak inside a stall till this was discovered by a stablehand. He pitched a fit about how a horse had the habit of leaning his hip against the wall and if I was standing by him there’d be nothing left of me but a messy pancake.
I sniffled for about two seconds — then beamed radiantly, to be scolded like that. For once an adult was treating me like any seven year old kid with a penchant for acting first and thinking later.
Being around the work horses soon made me want to try riding one. Even without the leg braces the idea would have been ludicrous for anyone of my size, but my resourceful mother, who had been a horse woman herself, befriended a neighbor who raised standardbreds for harness racing. Leo Boyle and his wife had daughters close to Donny’s and my ages, and it was not long before we were attending one another’s birthday parties.
For Halloween the year when I was eight the Boyle family had a party where we bobbed for apples, wore bizarre homemade costumes that generally required further information in order to be recognized, and then, wonderfully, were all invited outside to where a pony stood saddled, western, ready to give us rides.
“You, too, Emmy,” they told me. Beside that magnificent being, the pony, I stood up as straight as I could, longing to be in that beautifully tooled western saddle just like Dale Evans on television. Up I was hoisted by Mr. Boyle, very, very carefully. Perched in the saddle, feeling as though I’d ascended a mountain instead of a little pony, I breathed in the scents of the animal and leather polish.
I didn’t particularly notice that I was listing to one side. My mind squawked at me to squeeze with my legs, but the legs weren’t paying attention. The saddle horn helped, but still I slid.
Happily, Mr. Boyle held onto me, and off that horse of my dreams I was pulled.
Soon my sketching began to feature horses equipped with the kind of howdah that elephants carry people around in. This was the product of me, daydreaming, not with the idea that anyone would ever act on it.
Thus I was not disappointed when my mother did not pursue my idea. Something else was on her mind by the time she found my sketches.
She had become deeply depressed, my poor mother, by the apparent suicide of her own mother, to whom she referred, all her life, as “the best person I’ve ever known”. After mentioning to someone offhandedly that she did not want to be a burden to her family in her old age, Grammie ran in front of a car one night.
As that happened my brother and I were sleeping soundly in our downstairs bedrooms. Upstairs, our mother sat up in bed to find herself singing the Star Spangled Banner. Since she was not particularly patriotic, and never could sing, the strangeness of the urge to do this rather struck her. She did it anyhow. Then she remembered just having a dream in which the Shrine of the Bab, a major Baha’i memorial in Haifa, Israel, slowly turned upside down.
A few minutes after she stopped singing people came to tell her that her mother was dead. Her beloved mother, whom she had supported for some years after my grandfather — an aristocratic dreamer who felt working for a living was beneath him — divorced her in favor of younger women. Her mother, tiny in stature, large in personality, a woman who never seemed to look on the dark side of life, a suicide.
Families have times of being shaken up completely, and this began one of those periods for us. We kids didn’t know it, but our parents had begun arguing after Grammy’s death, as my mother resented that my father, whose family home we had moved into, did not want her mother to live with us. Instead, my Uncle George had built her a beautiful little pine cabin behind his home a quarter mile from us.
Grammy seemed happy there, frequently entertaining visitors from far and wide. She traveled to Wilmette, Illinois to visit the beautiful Baha’i Temple on the shores of Lake Michigan, stopping here and there to visit old friends. At home she made and sold loaves of whole wheat bread as part of her life long drive to encourage people to eat healthy food, and took care of us a few times a week to relieve Mother. Besides belonging to something called the Eastern States Farmers Exchange, she joined the local Grange and, as a retired public health nurse, frequently visited ailing people in their homes. So it was a shock in the family that she was considering herself to be a potential burden.
Her death at the age of 78 was the event in our collective lives that at last overshadowed my polio, for which I found myself somewhat relieved.
For a very short time.
My mother, under strains I could not begin to understand then, may have simply decided that she needed to be free of caring for me for a while. Possibly she felt she could spend more time with Donny — who very much needed special attention at that time — if I was sent away, and possibly she simply wasn’t thinking clearly. What I discovered, only too abruptly, was that she had been consulting with a well known orthopedic surgeon. His Eminence, as I called him privately, never saw me before she and he made plans to have me admitted to a state hospital. There I would undergo a series of orthopedic surgeries that required me to lie in bed in body casts from head to foot for six months at a stretch. Several times.
And so, just before my birthday in early January of 1958, she packed a few of my belongings, ordered me into the back seat of the Buick for the last time I ever saw it, and drove me off to the Massachusetts Hospital School for Crippled Children in Canton. That place was my home for the next two and a half years.
The Massachusetts Hospital School for Crippled Children was certainly the reason why I identified powerfully with Jane Eyre, when I read Charlotte Bronte’s eponymous book a few years later.
Easter Seals from the 1930s, long before I was born