Although I do not clearly remember my entire battery of polio symptoms at age three, what is typical with both paralytic and non-paralytic types is an onset involving nausea, headache, sore throat, back and neck stiffness, and pain. There are generally changes in reflexes and an elevated spinal fluid cell count. Poliomyelitis virus lives in the intestines and throat, but the usual gastrointestinal flu symptoms of bowel difficulties do not seem to be present. With paralytic polio, there is also weakness in one or more muscle groups. Spinal polio involves the trunk or extremities, more often the legs, and this is the type I had. The people who had bulbospinal polio are those who had acute respiratory difficulty and were put in iron lungs. (There were perhaps one or two dozen operative iron lungs still in the US in 2014, indicative of how few people were left sharing that equipment, surviving with this more life-threatening form of polio. Most polio patients with breathing difficulties, which can also begin to surface late in life, now use wheeled ventilators.)
There were so many backward attitudes about disease in the fifties. If someone had cancer, my mother spoke about it in hushed tones, almost as if it were the patient’s fault. Polio had so many stigmas attached to it. Accounts I’ve read describe almost paranoiac thinking similar to that surrounding AIDS in the 1980s: You got it from the air, you got it from touching someone who didn’t wash, you got it from associating with the wrong class of people, people who lived in filthy conditions and spat on the sidewalk. You got it from swimming pools. Throughout my life people have said to me, after asking me why I limped and hearing I’d had polio, “You got it from swimming pools. You must have gone in swimming pools.” I never went in a swimming pool before I was at least nine. My mother didn’t swim. Besides that, swimming pools are highly chlorinated, generally, and it’s unlikely the virus could live in those conditions. An unchlorinated pool or pond, if there had been any in an area subject to the epidemic, would have been unwise recreation but still would probably not have incubated the virus due to dilution.
The myth about pools likely started because a public pool was a venue where many people congregated in close proximity, especially children, somewhat similar to when you catch a cold at a children’s party or in a movie theater full of people. Polio is also a disease that typically catches on during warm weather. Many public pools also closed when there was a local epidemic, adding to the concept that they were a polio breeding site.
Polio is spread through direct contact with an infected person’s secretions, most often their saliva or feces. And an infected person may have no symptoms.
My next memory of this early time is vivid: I was in a very small room in a hospital (probably Queen of the Angels), hardly bigger than a large closet, and it was all white and that sickening color of pastel green tile—or perhaps it just became unpalatable to me. My parents later unwittingly chose it for our new kitchen, so I had to live with it for years. A friend in college later described it as “landlord green,” and we speculated that it was for some reason a cheap and easily obtained color.
In the tiny, quarantined hospital room, having so recently gaily celebrated my third birthday, I was alone, day after day. I cried a lot. I was scared and had no understanding of why I’d been taken there, away from my mama and daddy, other than that I hadn’t felt well. I’d been sick before, but had always been allowed to remain at home. I was wildly afraid, filled with despair and a sense of stark abandonment.
They came to visit me. I could see the strain of worry on Mama’s face, and Daddy’s, too. Their eyebrows were pointing up in the middle and my mother looked like she might cry or recently had. They were both dressed in what looked like bed sheets that tied behind the neck. I couldn’t see their hands or their arms.
I was so glad to see them.
“Where is your purse?” I asked Mama. She always carried a big black purse, stuffed with God knew what—I wasn’t allowed ever to look through it.
“It’s here,” she said. “My purse is here under the hospital gown, that’s what’s sticking out.” It made her look like a pregnant kangaroo in a sheet, but she couldn’t show me the purse because she wasn’t supposed to take her hands out.
I sat up, reached my arms out over the top of the crib, and cried out, “Mama!” but she didn’t reach for me. “Pick me up!” I implored. “Take me home! I want to go home!”
When neither of them reached for me, I started to cry. Mama always held me on her lap, every morning, sometimes reading me a story or singing to me, and Daddy held me on his lap each afternoon after work, when he read the paper.
“We can’t touch you right now,” Mama said.
I sobbed; I didn’t understand. It seemed so cruel, though I knew they were following the rules of the ghastly hospital with its horrible white walls and green tile.
I believe this was their only visit after my admission; it was too upsetting for all of us and they knew that quarantine would be temporary.
I didn’t know that, however. When would it ever be over? As it turned out, never, not really. This was the beginning of a life of ups and downs, falls and triumphs—a life that would make me tougher in spirit than I ever wanted to be.
By the time my parents visited me that day, the doctors had told them what I could not have understood: “Your daughter has poliomyelitis. She is experiencing paralysis in her right leg, which is why she cannot stand up. Mr. and Mrs. Allen, your daughter will never walk again. She will be in a wheelchair for the rest of her life. We have to keep her quarantined for a couple of weeks; even you cannot touch her, and then we’ll be moving her to a polio treatment center when she is no longer contagious.” No wonder my mother was trying to keep from crying.
But the doctors didn’t know me, and they didn’t know my mother, and they were not anticipating that sometimes people get lucky, even in perverse ways.
The hotel that was turned into a rehab facility where I lived for six months during polio treatment. I was in the former ballroom with the big arched windows. Mother occasionally took me down to the beach behind the building.
Credit: Kaiser Foundation
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making the best of imprisonment
After two weeks in the hospital, I was moved to Kabet-Kaiser Institute, a rehabilitation center on the beach in Santa Monica. I lived there from late January 1951 through July of that year, six months in all. I was in a huge, daylight-filled room, called a ward, with thirty or forty other children who had polio. There were no children in iron lungs in my ward, so perhaps the bulbar-type patients who had so much difficulty breathing needed to be in an actual hospital or were at least on a different floor from us. (The iron lungs took up a lot of space and were very noisy; also, these patients needed a great deal of monitoring, to make sure the machine was operating and also to note if the patient started breathing independently—a rare milestone and almost miraculous sign of recovery.)
On the weekends, I got to escape to the apartment my parents rented in Santa Monica “for the duration.” It was so small compared to our previous two-bedroom home with its backyard, planes flying overhead, and neighbor playmates. But I looked forward to those weekends like a laborer working away from home, which was in fact exactly who I was.
Previously the rehab facility had been the Edgewater Beach Hotel, and then the private Ambassador Club. Henry Kaiser had bought the place after seeing how successful Dr. Herman Kabet’s rehab treatment for multiple sclerosis was. (One report says it was Kaiser’s son who had MS and another that it was Henry Kaiser himself.) Kabet and Kaiser formed a rehabilitation foundation in 1946 along with Dr. Sidney Garfield (a founding physician of Kaiser Permanente, the health insurance and care company), the primary center being in Vallejo, California.
In my ward, each child was in a white crib, high up off the floor, with the crib bars spaced six inches apart, and up nearly all the time so that no one could get out and wander about, assuming you could move. So, unless you were so bold as to get up on your knees and look over, hangin
g on to the top rail, which I did as often as I could, you viewed your world through bars. Many of the children could not sit up and we all spent a huge amount of time prone. There must have been about six to ten cribs to a row, about four feet between cribs, and four or more rows of them. There were lockers for our few belongings along the far wall opposite the windows looking out on the street. I don’t remember ever being moved to another area or visiting the other side of the room; I was in the same crib in the same row facing the same wall for the entire six months.
I’ve since seen pictures taken inside this Santa Monica facility, but there are no pictures of the children’s room or ward with its multiple beds and lack of privacy. The pictures I saw were clearly of the adult ward, where, although the beds were also close together, there were small closets behind the heads of the beds, which provided a partition (around five or six feet tall) between them and the next row over, plus a small but roomier space for belongings. Thus, the adults had a modicum of privacy. This may have been partly a result of there being fewer adults than children with the virus.
The arrangement of the children’s ward should have afforded me the opportunity to sit up and chat with kids nearby, at least those who were able to sit, and not just lie there staring at the two-story hotel ceilings with their elegant dark wood coffers, but I don’t have a single friend from that time in my life, though I keep in touch with friends I’ve known since before kindergarten. My mother maintained no contact with any parents she may have met there, either, though she had a vast Christmas card list and corresponded with old neighbors such as the Murrays. That time must have been lonely for her as well, though my father was home in the late afternoons and evenings, and many of her brothers and sisters lived in the Los Angeles area. I can only guess that occasionally she may have visited with her siblings and old friends. She was essentially a loner anyway. But this new life was not the same as our old one, when we’d had neighbors nearby. My sister, who was twenty-two then, remembers visiting me at Kabet-Kaiser at least once, but she’s the only person other than Mama who came around. This is not surprising given the imagined fear of contagion, despite all of us kids at the facility being past the phase of acute illness.
Clearly there was no consideration regarding creating real relationships at the rehab center, even though we were there for months and shared a most intimate experience. My recollection brings back not a single face, only a large group of anonymous afflicted children. There was never any fanfare about departures: you came in, you stayed, you left. (Perhaps among older children more bonds were forged.)
The floors at the facility were dark wood or linoleum, and the walls were white. There were a lot of windows, big ones, along the east side of the ward, but I don’t remember what we viewed outside them. The pictures I’ve seen of the old hotel confirm this, as well as the fact that the windows that let in all that light looked out on a street, though I was never close enough to the panes to see anything but sky. I think they opened wide and the hospital personnel didn’t want us to get curious and fall out.
On the other side of the building, out of our view, lay the beach and the Pacific Ocean. I have seen in old photos that there were also windows on that side, but they must have been either for offices or for the adults’ rooms.
Photos from the Kaiser archive also revealed a promo picture taken with a famous singer of that era, Howard Keel. Several nurses, some with grim faces and some putting a smile of sorts on the situation, and at least one doctor, pose in the hospital, away from the scene of multiple beds full of sick children. Almost all of the dozen or so children of different ages and stages of treatment included in the photo look depressed and unwell, some in wheelchairs, some with crutches, some standing with Kenny sticks, some in pajamas, and some—the tiny girls in the front—dressed up in the style of ruffled short dresses I wore in that era. Some are smiling stiffly, I imagine having been told to smile for the camera; the rest, it seems, just couldn’t get up the energy for photo-op cheer.
I don’t know if the photo was intended to promote the great success of the rehab program—and it was very good, the only hope for most of us—or to promote Keel’s involvement with volunteer work. But if it was to convey that these kids needed financial and emotional support for their recovery, the mood of the tableau was effective: sick kids lined up to demonstrate the sad difficulties of polio. I’m not in the photo, but I looked just like those other little girls in the front row.
Days were the same, same, same, week after week. For the nursing staff, this made life manageable; for the children, possibly the predictability felt safe, but I don’t remember looking forward to much of anything but the weekends.
Every morning, after being carried or wheeled to long, low children’s tables over toward the windows in our big room, we had either oatmeal, a fried egg over easy or sunny side up, or scrambled eggs. For lunch, we often had soup and/or cottage cheese with canned fruit. We were required to eat what they gave us, whether we liked it or not. The dinners were totally unmemorable; it’s possible I only remember the foods I disliked or came to detest. I don’t recall eating any other foods but the ones I’ve listed here, though surely there must have been some variety. This was at least a nutritional menu: muscles affected by polio get their best chance for function on a high-protein but balanced diet. Polio patients, like athletes, often place far more strain on muscles, and protein helps maintain strength.
It took me decades after leaving the hospital to be able to stomach oatmeal, fried eggs (particularly the yolk), or cottage cheese without gagging, and soup often seemed a punishment. (Now I love preparing a hearty soup from scratch in the autumn and winter.) I could never find the words to express these preferences to my mother, and she felt I should “learn to eat these foods”—she even said, “You ate this in the hospital all the time!”
When a child is taken away from her family and leads her own life for a time, there are experiences that cannot be fully described or understood, as is the case for a soldier who’s gone away to war. And even if I’d been able to find the vocabulary for my young memories, I am quite sure they would have been met with a “Tch” and tight, irritated, downturned lips from my mother. After all, she had withstood being the eldest of twelve children in the early twentieth century, moved out to support herself at fourteen, and her first husband had left her for someone else (a woman he married and stayed with the rest of his life). It was never too early to learn to be strong, if not stoic.
Every day in the hospital we withstood an injection of prostigmine, a muscle relaxant, for the spasms common to polio. A shot. Every day. At three years old. For approximately 180 consecutive days. Every time, it hurt, and every time, it scared me, and every time, I hated it. Don’t believe it when people tell you that you become indifferent to repeated painful experiences. I became permanently needle-averse, and I still have to look away when I get a shot, get blood work, or see an injection administered in a movie, taking an involuntary inhalation through my teeth. It is possible, maybe even probable, that all of us had muscle spasms from the polio. But as an adult I came to think that the muscle relaxant may have partly been used to keep us calm and quiet. With dozens of potentially rowdy children to a room, it must have been a handy management tool for the hospital staff. Regardless of the drug’s purpose, it was a nasty thing for a three-year-old to look forward to each day. I don’t remember putting up a fuss about it, but I’ll bet I did.
Another daily ritual was that of hot, wet wool blankets placed on our bodies. This was probably for pain or spasms and also to stimulate circulation, which can come to a near halt in a polio-affected limb. My polio leg has always been quite cold-sensitive, and what feels like normal-to-cool room temperatures to the rest of my body feels somewhat chilly to that leg. It always turns purple with red blotches in the winter, unless I rub it almost incessantly.
The blankets, referred to as “hot packs,” were much too hot for a child at the start, but would subside gradually to a tolerab
le temperature and then drop to useless coolness. I’d lie there for what seemed like forever, clammy and cold in the end, until the packs were eventually removed. The heaviness felt like an additional way to keep me subdued; certainly I couldn’t move beneath the weight. The aroma was just weird. If you know the smell of a wet wool blanket left by the heater to dry, you’ll know this unusual, slightly unpleasant scent. Whenever it accosts my nose now—which, fortunately, is a rarity—I am instantly transported back to the hospital and the damp oppressiveness of the hot pack treatment.
We were allowed a few of our own toys, all of which were kept in a cloth bag that was tied to each of our beds. These were the only diversions we had, whether they were dolls, coloring books, story books, or stuffed animals. I’m sure there were no xylophones or other noisy toys, or there would have been a cacophony.
One day, I dropped one of my toys, a little brown rubber dog, on the linoleum floor. “My doggie is on the floor!” I called out.
A nurse came quickly, partly to quiet the situation and partly because she thought I might have a physical problem. Well, to me it was a problem, for sure. I pointed my index finger at the toy on the floor, and the nurse—who seemed large to me, especially since my mother was so small—bent and picked it up. But instead of giving it to me, she dropped it in a large white canvas bag hanging on the wall across from my bed.
Not a Poster Child Page 2