Not a Poster Child

by Francine Falk-Allen

  not

  a

  poster

  child

  Copyright © 2018 Francine Falk-Allen

  All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, digital scanning, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, please address She Writes Press.

  Published 2018

  Printed in the United States of America

  ISBN: 978-1-63152-391-5 pbk

  ISBN: 978-1-63152-392-2 ebk

  Library of Congress Control Number: 2018936550

  Book design by Stacey Aaronson

  For information, address:

  She Writes Press

  1563 Solano Ave #546

  Berkeley, CA 94707

  She Writes Press is a division of SparkPoint Studio, LLC.

  All company and/or product names may be trade names, logos, trademarks, and/or registered trademarks and are the property of their respective owners.

  Names and identifying characteristics have been changed to protect the privacy of certain individuals.

  For Richard

  Table of Contents

  Introduction

  Chapter 1: When I Was a Normie

  Chapter 2: Taken from Home

  Chapter 3: Making the Best of Imprisonment

  Chapter 4: Next Steps in Rehab

  Chapter 5: Back to Childhood

  Chapter 6: Not a Poster Child

  Chapter 7: Ambulating

  Chapter 8: The Crippled Kid Meets Sticks and Stones

  Chapter 9: Daddy

  Chapter 10: My Country, ’Tis of Thee

  Chapter 11: Carol (Francine) the Christian Girl

  Chapter 12: Just Another Schoolgirl (Who Discovers Water)

  Chapter 13: The (Even More) Awkward Years

  Chapter 14: How I Spent My Summer

  Chapter 15: High Hopes for High School

  Chapter 16: Into Boys and Rock ’n’ Roll

  Chapter 17: Life as a Co-Ed

  Chapter 18: Drugs Lite

  Chapter 19: Love the Leg You’re With

  Chapter 20: In and Out of Marriage and Back to School

  Chapter 21: Wake Up, Little Sufi

  Chapter 22: Not Exactly Bliss

  Chapter 23: Singing as Prayer

  Chapter 24: On the Ropes

  Chapter 25: The Hazards of Walking

  Chapter 26: Making Way for Mr. Right, and a New Challenge

  Chapter 27: What People Think

  Chapter 28: Personal Best

  Chapter 29: A Crip by Any Other Name

  Chapter 30: Polio, the Gift that Keeps on Giving

  Chapter 31: Moving On

  Chapter 32: Taking Care of Business

  Chapter 33: And Now, Something Completely Different . . .

  Chapter 34: Doctors, Doctors

  Chapter 35: Deal with It

  Chapter 36: Keep on Truckin’

  Chapter 37: Ageism and Reverse Ageism

  Chapter 38: Occasional Poster Child

  Chapter 39: Aging Well

  Chapter 40: Chop Wood, Carry Water, Stir the Oatmeal

  Chapter 41: As Good as It Gets

  Afterword: Parting Shots: About Vaccines

  Resources

  Bibliography

  introduction

  My life as a handicapped person has been in many ways a normal life, filled with the great joys, great sorrows, and the commonplace or mediocrity that all people enjoy or endure.

  My purpose in writing this memoir is to convey what it is like to live a full life while handicapped with a paralyzed, short, atrophied foot and leg, and to get all my early memories of polio treatment written down before I begin to forget them. It takes guts to be handicapped. People will say unkind things. There will often be more that we cannot do than that which we can. I’ve spent a lifetime striving and struggling to be normal. We need folks to be patient while we adapt; independence is our fond desire but is sometimes unattainable. There are, however, solutions, and myriad ways to have a good time.

  It is my deepest intention that this book will honor and represent millions of physically handicapped people. I realize that many have been far more physically limited than I, and do not mean to flaunt the ability I do have, or to convey a tone of self-pity. I also know that there are some with more severe limitations who have strived and accomplished far more than I did, whether in public service or in their personal lives. I am in awe of those folks. I have done as much as I could without exhausting my little body (and often have more than exhausted myself). I sometimes feel I should have been more focused. As Lily Tomlin said in her performance of Jane Wagner’s The Search for Signs of Intelligent Life in the Universe, “I always wanted to be somebody. Now I see I should have been more specific.”

  The reality is, I was crippled by a merciless virus as a small child, and it changed what might have been. My choices and personality have been driven and created by awareness of my acute physical limitations as much as by what I desired. People have often—though not always—treated me differently than fully able people as a result of my disability; that’s just how it is. My story is defined by those parameters.

  It is impossible to write a memoir or reflection upon personal difficulty without thinking about oneself a great deal. Over the course of these six years of writing, I have had to take occasional breaks to avoid feeling too self-centered. I hope that whatever humor and sense of the absurd you may find here may make the writing tolerable if I have not succeeded in avoiding narcissism. Lots of people will find my stories “not funny,” but if you are a fan of Monty Python, I ask you to remember the irony of the song, “Always Look on the Bright Side of Life”—sung while Brian was being crucified—as you read on.

  For anyone whose life has been changed dramatically by disease, birth defects, war, injury, or aging, I salute your bravery and commitment to finding ability, meaning, and joy in your life despite your daunting challenges. This book is written for you and me, and with gratitude to the amazing rehabilitation people who have given us the gift of function.

  Although everything in this book is true, some conversations are not verbatim, and a few names have been changed to protect privacy.

  not

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  Francine, Easter, 1950, age 2 1/2

  1

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  when I was a normie

  It’s my birthday, and I’m three years old today! I’m running down the sidewalk on our street, West 109th, in our middle-class neighborhood in Los Angeles, near the edge of Gramercy Park. A northern leg of Westmont—later to become owned entirely by black and Hispanic folks. But today it’s a very Anglo place to live, and kids are coming over to our house for my party.

  In early December 1950, it’s a little warm out in southern California. I’m wearing a full, very short, ruffled chiffon dress my mother made, and a round, flat, gathered paper hat set at a jaunty angle on my head. Mama is a remarkable seamstress, and her sister, my Aunt Marie, used to sew professionally, as a member of the garment workers’ union.

  I cannot tell you, sixty-some years later, why I am running, or why I’m out on the sidewalk without an adult. Possibly I escaped . . . something I will spend much of my life doing, until I hit forty or so. Maybe I’m running with a big birthday present I was excited to receive; I remember a box with a fat, overstuffed doll in it that I decided to call Ollie Dolly after the children’s TV puppet show, Kukla, Fran and Ollie. Or maybe I’m jus
t gleeful that it’s my birthday. My mother will later tell me that when I was even smaller, I would steal cut lemons from the bottom of the fridge and scoot away in my Taylor Tot stroller, refusing to give up the lemon, although when I sucked on it, I puckered my entire face.

  That day, high-tailing it down the sidewalk, is the last recollection I have of ever running, and I never want to forget it, which is part of why I am telling you my story now.

  When I was perhaps in my thirties I told my mother about another early childhood memory: I was out in the backyard, alone, and eating a somewhat fresh banana skin out of the garbage can. I might have been quite hungry, but maybe I was just snacking or curious. Planes flew low overhead and scared me. I ran and hid under the stairs, stairs that were too steep and high for me to climb and get into the house. I put my hands over my ears. I was crying and afraid.

  Decades later, Mom looked at me in disbelief as I recounted this story. “You were only two years old then!” she exclaimed, then turned to stare out the window and watch the smoke from her cigarette waft around her kitchen. We both took in the thought that she had left me down a long flight of stairs alone at two, expecting me to play in the backyard, and instead I ended up eating banana skins out of the stinky garbage can.

  Throughout my childhood, Mother would proudly say, “You played so well by yourself as a toddler, you always did.” When I shared with her the memory about the planes going over and being alone down in the back yard, I could tell she was stunned by the knowledge that I could remember back so far, and I suspect she wondered what else I could recall. I said nothing.

  “We lived near the airport,” she eventually continued, “and the planes flew low over our house when they took off.”

  My dad was a milkman, with his own small business, and my mother didn’t work. We were renters. The people across the street, the Murrays, might have been owners. They had two little boys I played with all the time.

  We dropped this adult conversation, but it was a moment of revelation for us both—for me, confirming a certain sense of distance my mother always conveyed. My mind had raced after hearing her response: How could you leave a two-year-old alone in a backyard? I wondered. How could you let a toddler eat out of a garbage can? Is this what it meant to “play well by myself”? Did you know I was down there crying and afraid? Did you come down and get me?

  I didn’t want to ask these questions of her.

  At my third birthday party, there is a fantastic big black papiermâché spider with black pipe cleaner legs that Mama made as a centerpiece for our large, dark, heavily ornate dining room table. The spider scares me, though it is comical; even in my shortness and inexperience, however, I can appreciate the ability it took to make it.

  Accompanying the spider is a storybook doll we all know is Little Miss Muffet, my nickname. My parents started calling me “Miss Muffet” affectionately when I was a month old, and everyone will call me that or “Muffet” for all of my childhood, except at school. Eventually I will see the irony in my fear of real spiders, though my parents thought only to call me something cute.

  The spider and the nursery rhyme theme are a hit with all, especially the mothers. Mama receives all the compliments graciously, tilting her head to one side; how wonderful that she’s made something so amazing for her little girl. I don’t think she realizes how frightening the spider is to me, and even if she did, she would only laugh and tell me it’s not real.

  This is the last hurrah before the virus comes. This is the last day I can remember being a “normie,” which is what the “crip” community, a handicapped veteran will tell me some forty years later, calls non-disabled people. It’s a kind and affectionate way to say “fully abled, innocently unaware of the stuff we experience” and leave out the envy, regret, or wistfulness we might feel.

  Mother, 1948, a few months after my birth

  Me in the middle of neighbor kids, Los Angeles, 1950

  2

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  taken from home

  A few weeks after my third birthday, in early January of 1951, I was sick. My feet hurt. I was in my crib—I still slept in a crib, probably to keep me in bed when I should be—and on my knees, crying in the night, calling out over the crib bar, “Mommy, my shoes hurt!”

  I recall sleeping in my shoes. My mother later said I never did, which perplexes me, though she is the one who told me (when I was in grammar school) that I did say these words, “My shoes hurt!” I’m guessing that my feet felt like I was wearing shoes that fit too tight. I knew the word “shoes” and I also knew the word “feet,” so I must have been saying what I believed to be true. Perhaps I was delirious; I did run a temperature of 101 degrees for a week. After that, though, I appeared to be back to normal.

  I was across the street at the Murrays’ house in this same week, before or after the shoes incident, and I wouldn’t play with the two little brothers, Stephen and Jeff. This was strange, as I was never lethargic; in fact, I was the kind of kid on whom you might have seen a harness. Mama hated napping with me because I wouldn’t hold still.

  Mrs. Murray called Mama on the phone: “Frances, Francine won’t get up off the floor.” Someone carried me home; Daddy always got home mid-afternoon, and Mama was a small woman with lower back problems who was unlikely to have picked me up at age three. It couldn’t have been my teenage brother, Gene, because he was in a sanitarium with tuberculosis. Perhaps Mrs. Murray carried me.

  I have a favorite photo of myself just prior to this: Six neighbor kids lined up against a wall in what looks to be a driveway, looking like The Little Rascals, the mischievous children of the popular 1940s short films, which I later watched almost daily when we got a television. One of the Murray boys—the older one, Stephen—is in the photo, blond and a foot taller than me. I’m guessing I had a crush on both him and his brother . . . I loved my daddy, and I loved boys, too.

  In the photo, I’m in the middle of the group, and I’ve got jingle bells on my high-top toddlers’ shoes (Mama tied them on so she would know where I was in the house, since I was inclined to get into stuff at every opportunity). My short dress adds to the “Little Rascals” image—I look a little like Darla from that series. I also look like I’m not sure there’s enough room for me; someone, probably my dad, told us to stand close together so he could get us all in the Brownie viewfinder, and I’m looking up with my eyes and eyebrows, as if to say, “Am I doing this right?”

  I knew the importance of being good and doing what adults said to do. I love how this picture shows the seriousness with which I took instructions, even at two and a half.

  Because I wouldn’t get up and play at the Murrays,’ and because I cried in the night and said my shoes hurt, and I had been recently running a fever, I was taken to see Dr. Blackman, who delivered me in 1947 at Queen of the Angels Hospital in Los Angeles. I don’t recall ever playing with the Murray kids again, though my mother did keep in touch with Mrs. Murray for many years.

  In 1951, there’d been a polio threat for decades. Years later my mother told me, “They had the vaccine then, you had to ask for it from your doctor, but people were getting polio from the vaccine in those days, so many people, including us, did not get vaccinated.”

  This is not at all accurate, I learned when I was in my fifties, though I now understand why she might have gotten the time frame and facts mixed up. One batch of the vaccine made by Cutter Laboratories in April of 1955, four years after I came down with polio and a year after the first public trials, did cause some incidence of infection: 204 people contracted the disease, most of them experiencing paralysis, and 11 of them died. Normally, an incidence of one in 700,000 people would be expected from the inactivated virus vaccine, and those cases were sometimes found to be from exposure prior to vaccination. Theories proliferated as to the cause, but one thing was certain: some of the vials of vaccine at Cutter had contained live virus. This was probably because the virus was kept in storage too long, clumped, and the formaldehyde (which kills the l
ive virus and keeps it inactive, allowing the recipient to create antibodies without getting the virus) could not penetrate these “clumps.” Dr. Jonas Salk, the researcher who was the first to get the polio vaccine into trials and initiate the inoculation program that became instrumental in stopping the epidemic, later said that this period of infamy for the vaccine was the one time in his life when he felt suicidal.

  After this debacle, the protocol for storage was vastly improved. More testing was required before the vaccine was released, and stricter tracking of the location of all vaccines was mandated by the government. (Though I do not love all aspects of government, here is one small but powerful instance of how useful record keeping can be when it is standardized across all states.)

  By 1961, the rate of polio had dropped by 96 percent. The last known new case of it in the US occurred in 1999.

  My mother had a way of distilling information into its most simplistic form and was a fearful person in general. As a child, though, I believed everything she told me. Now, having known her much better, I wonder if her line about fearing the vaccines was not an excuse—her feeling guilty that she and Daddy never asked our doctor about vaccinations, and then creating an explanation for her inquisitive daughter. Vaccines were not available when I contracted polio; they were not made public in the massive trial inoculation campaign until 1954. But it’s most likely that she didn’t remember the sequence of events, and when I asked about polio as a young child, she simply needed to tell me something about why I got it.

  In all the time I lived with my mother, I recall her going to the doctor perhaps once. She either feared information or felt it was too expensive to go unless there was a dire circumstance—and the latter was certainly true. Economically, we lived a simple, slightly-below-middle-class life. I was taken to the doctor, later in my life, with strep throat and occasional other complaints, but never to the dentist; I was afraid of the potential pain and I think that my mother didn’t want to deal with my protests, or the expense. When I was sixteen, my close friend’s older male cousin commented discreetly to her that I would be pretty if I got those decayed front teeth fixed. After she told me this, I went to my mother and asked her to make an appointment with a dentist for me. I had one or two teeth removed and several filled, including the four front ones, with white enamel. I had been oblivious to this need.