Not a Poster Child

by Francine Falk-Allen

  Rich sat there with me, I on the bed and he in my little 1930s thrift shop easy chair. After a few moments, he said, “That weird foot. It’s probably the best thing that ever happened to you.”

  I never asked him what he meant, exactly—but what I understood him to mean was that every seeming major difficulty has some payoff or lesson. I knew he was into yin and yang, opposites, understanding duality. At that time, I chose to believe that he was right. Maybe it was the best thing, not the worst thing, that ever happened to me.

  Okay, I thought, if this hadn’t happened, what would have been different? What different path might I have gone down that wouldn’t have been as good for me?

  For starters, aside from the good things I missed out on, I might have chosen a more superficial life, a life that did not include the richness of experience I now sought out as a result of being physically odd. The things I loved—art, music, mysticism, liberal politics—might not have pulled on me. I might not have ended up hanging out with the people I had recently chosen as my friends, who accepted a broader spectrum of options and social choices, who also were not part of the mainstream, who found new ways of relating and doing things that might not have been acceptable to me when I was a middle American kid.

  This was the beginning for me of not just clomping around on my leg without asking what it meant to be handicapped and what choices it was causing me to make.

  Two or three years later, I had taken LSD and was dancing in the afternoon to some music, Joni Mitchell and then Leon Russell, in my small living room in Forestville, and I suddenly began paying more concentrated attention to how my feet were operating. I realized that I was treating my polio foot like it was a stump at the end of my leg, just slapping it down. When I walked, since I didn’t wear any kind of support device, my drop foot just hung at the end of my leg; no flexion was possible with my ankle paralysis. I have never been able to do the heel-first, roll-to-toes movement that comprises a normal walk. The ball of my foot slaps down first if I am barefooted, and at that time it did so even with a shoe since I did not yet wear an ankle brace.

  My ankle hadn’t rolled in since the surgery Dr. Mearns had performed on me years earlier, but on this day I thought, Perhaps there’s something else I can do so this little foot will behave a bit better. My toes at that time were beginning to curl up and under, so that one of them was actually staying stuck, like a hammer toe. It did not hurt, but it felt strange, and I could see that left unattended, it could become a painful problem. This was a revealing moment for me: I saw that I was neglecting the needs of this foot and that this could be detrimental to how it functioned later on in my life.

  Recently I heard an interview on NPR with a drug researcher from the Buckley Foundation at Oxford. They have found that administering controlled doses of LSD to patients with mental illness has resulted in their being better able to unify different parts of their brains. Patients on LSD or the drug nicknamed Ecstasy have exhibited a feeling of unity with the world—its flora, fauna, and, perhaps more importantly, its people. These sensations tended to have a lasting value even after the drugs wore off. That’s exactly the experience I had.

  It’s possible that a lot of handicapped people are drawn to substances and sometimes substance abuse for several reasons. It is a relief to leave reality behind a bit when reality includes being physically deformed or being in pain. With marijuana, since what is going on in your mind and/or emotional being begins to take precedence over what you look like, pot can be an equalizer, and issues like having a paralyzed leg or being in a wheelchair become just additional aspects of oneself more quickly than they do amongst folks who might be concentrating on other standards. Not to say you can’t get to a less judgmental place in sobriety, or that pot smokers have no judgmental tendencies. Maturity is the best equalizer of all. But there’s something about psychedelic drugs that breaks down social mores, particularly the superficial ones.

  What I was seeing on psychedelics gave me the sense that just about everything was alive in one way or another. I felt more connected to the world and more respectful, and, yes, loving toward it. I saw human beings as remarkably vulnerable, dealing with limited knowledge about a vast universe, trying to come up with explanations for everything when there was always going to be more that we did not know. A tenderness emerged because of this.

  It seemed as if I had previously missed that there were many more layers to life, to people and their emotions, and to what humanity might potentially be. Could we have more inner knowledge than we realized? Could there be many more dimensions to life and existence than what we had classified, categorized, tied down, figured out, defined, equated, and written down? What was spirit? Was it material as well as etheric? Was there any real separation, given we exchange molecules just sitting in a room together? In the late 60s, I had sensed for the first time an “I” that existed apart from my body or mind. I had opened up to the possibility that I might in fact be one with the universe. Did human beings have a consciousness other than intellect? Was that the same as spirit? Could we know our spirit? What was the difference between spirit and soul?

  Over a period of about twenty years, I took psychedelic drugs perhaps thirty times in an attempt to answer these questions for myself.

  What did the Buddhist say to the hot dog vendor? “Make me one with everything.”

  19

  —

  love the leg you’re with

  After my psychedelic revelations about my foot, I felt more kinship with it. I saw that I had been treating it like it didn’t matter and was just an appendage. I realized I needed to love my little leg—that it had worked really hard for a couple of decades, despite its severe limitations, and I needed to treat it with respect and kindness and try to stop blaming it for my situation. Many people had referred to it as “your bad leg,” and still do, particularly physicians. To this I started saying, “It’s not a bad leg. It’s a weak leg.” Mother was right in a sense when she called it my “lazy” leg, but even that had a stigma.

  This leg is anything but lazy. I would characterize it as the leg that never gave up.

  I began to wonder if there was a possibility that I might be able to strengthen my right ankle and correct the drop foot. The idealist in me didn’t trust the initial prognosis, which dictated that polio patients only gained improvement in the first year.

  I located a physical therapist in nearby Sebastopol. I told her I was a polio patient and wanted to look into learning to strengthen my foot. She said I’d need to get a prescription from a doctor, so I made an appointment with Dr. Anderson, an orthopedic MD in Santa Rosa, several miles from my home.

  During the initial examination in Dr. Anderson’s office, I said, “I’d like to see a physical therapist regarding improving my drop foot. I realize I’ve been ignoring how I walk on it, and am hoping I might be able to strengthen the ankle.”

  “Mm-hmm,” Dr. Anderson said. To his credit, he did not try to dissuade me. He was very interested in looking at my gait and the general condition of my leg. “Walk across the room for me,” he said, and watched me ambulate back and forth a few times. He then inspected my lower limbs in the concentrated way I rarely see in today’s sports-oriented orthopedic doctors.

  I realize now that I was a study case to him. He did not see that many polio patients, particularly those who were not yet having severe new problems.

  After examining my leg, Dr. Anderson made a comment that surprised me. He looked closely at the scar from my triple arthrodesis, and the resulting stability of my ankle, and asked, “Who did this work?”

  “Robert Mearns, in Sacramento,” I answered.

  “I thought so,” he said. “Great doctor.”

  I was astonished that he could recognize the work, just as you’d recognize the painting of a renowned artist.

  Dr. Anderson did give me a prescription for physical therapy, and then we talked about how to correct the problem with my toes.

  I told him I thought that
if I had a little pad in my shoe under the curled toe, it would hold my toe out straight and keep it from hammering. He agreed, and in turn suggested that I sleep with a lightweight cast shoe on my foot. At the time, these were just a flat piece of plywood with an upper mantle of plastic stapled on, with a Velcro closure. He cut the one he gave me down in length so the covers would not pull on my flaccid ankle while I slept, then took some piano felt and cut it down to fit under my toes, crafting it until it put them into a normal position. He thought this would probably train the errant toe to stay straight, keep the others from following suit, and give me some relief from the tight feeling in the curled toe.

  I had a pair of sandals made at the local (hippie) sandal maker with the pad I’d thought of, which relieved the hammering tendency when I walked around during the day, and began wearing my cast shoe to bed. From the start of using this device, I began to see a difference in my toe. It did not feel so stiff, and after a year or two mostly stayed in a normal position.

  I continued to wear the sleeping shoe for a couple of decades, until trials of not wearing it seemed to make no difference, and I declared the toes corrected and healed.

  I saw the physical therapist regularly for a few months. She had had arthritis from the time she was twelve (she was probably in her sixties when I met her), and she taught me that it was important to keep moving, regardless of how we feel. Without that movement, she said, my structural components would become stiff or even rigid.

  We were working with the possibility that I might be able to regain ankle motion. She had me concentrate on moving my foot while she made little stroking motions with a finger along the top of my foot and ankle—an approach that was part of Sister Kenny’s original program, intended to engage the mind and muscles by touching the area and concentrating on the concept of motion.

  After doing this for some time, I began to have hints of movement in the top of my ankle! At first, I could only sense the motion inside my foot; later on, if we watched carefully, we could see a twitch of movement. However, this was after months of meeting once or twice a week and doing a half hour daily of concentrated isometric exercise.

  We finally had a “come to Jesus” meeting where she told me that if I increased the time I spent on my ankle, doing the exercises for three or four hours a day, and kept at it for years, I might eventually be able to move the foot a bit, but it was never going to be a normal foot.

  I felt a bit deflated, but I had known this project was a long shot. I accepted that the initial prognosis had been correct. (This is still the standard in polio rehab: the first year is when nearly all of any possible improvement happens, particularly with permanent paralysis.)

  I made a decision to give up the exercises. The amount of time it was going to take, with little and uncertain success, was time I felt I would rather spend on music (plus, I had to earn a living). I was singing and writing country blues songs and wanted to improve my ability in that talent more than I wanted to spend three or four hours each day hoping for negligible movement. I saw that in some respects, at some times in our lives, devoting oneself to what feeds the soul, the mind, and creative instincts can be more rewarding than time spent improving the body. It was not a choice to neglect or ignore my body but rather to keep my life in perspective.

  I bought a cane at a flea market three or four years later. I thought it would look cool with my limp, and discovered it actually did help me walk in a slightly more level fashion when I used it on my strong side and leaned on it a little. It took the stress off both legs, as if I had a third leg. Generally, canes are not supposed to be leaned on—they are to be used to stabilize and keep balance—but I’ve always leaned on mine. (Sometimes I pay a price for that, with wrist and elbow tendinitis.)

  I went back to Dr. Anderson’s medical office to have the cane cut down to my height. (Now, my husband cuts my canes down with a saw; simple to do, but I didn’t know this in my twenties.)

  Dr. Anderson looked at the cane, which was an English-style stick, made of a thin hardwood branch and an antler handle, and said, “This is such an interesting cane; it’d be such a shame to cut it down.”

  I’m short—five feet tall in bare feet. And this is a good thing: if I’d grown more, there would be an even greater length difference between my legs. I need my cane, like everyone who uses one, to be at the approximate height of my mid-hip. A cane should allow your arm to be slightly bent with your hand resting comfortably on the handle. I see so many people whose canes are too long, and I always want to tell them they need to get them cut down.

  In light of that, I thought Dr. Anderson’s comment was rather thoughtless; what good was the cane to me, its owner, the woman who would be using it daily, if it were too tall? Did he think I should give it up, hang it on the wall, sell it as an antique to a taller person? He seemed to be suggesting that I wasn’t deserving of a truly interesting cane—that I should save this one, and get myself a drug store cane. I know he didn’t mean to offend, but, still. Just one of those remarks we crips can do without.

  I hesitated a moment while I had these thoughts, then said, “Well, I’m the one who’s going to use it.”

  He cut a couple of inches off the bottom with no further discussion, but he also went down a couple of notches in my esteem that day.

  Despite the cane incident, I remained a patient of Dr. Anderson’s, and when I was twenty-eight I went back to see him after tearing my Achilles tendon. (I was wearing boots with two-inch-high heels on an unstable pathway. Stupidly vain, and a seriously painful outcome!)

  I wore a limiting plaster cast for a month before Dr. Anderson put me in a walking cast. When I wore the second cast, I felt like I could finally walk normally, because the height of the heel made up for the two-inch difference in my leg lengths. I actually enjoyed wearing that walking cast quite a lot. I saw a movie two years later, Just the Way You Are, about a woman who had some deformity that caused her to limp—maybe it was even polio— and she actually got an unnecessary cast put on her leg when she went to a business conference so she could flirt with men and they would not think she was handicapped, but just had a ski injury. I could so relate.

  All these experiences made me realize that I’d had a prejudice against my own body part and was expecting it to try harder and make up for its disability, just as some people had expected me to do over the course of my life. I started treating my leg with additional kindness, massaging it more in the winter and resting sooner when my extreme fatigue set in. I even told it sometimes, “You’re a good little leg; thanks for trying so hard!” But old habits die hard, and we polio survivors, according to research, tend to have a lot of goals that we hate to give up. So, forty-plus years later, I’m still not resting enough.

  20

  —

  in and out of marriage and back to school

  Within a few months of moving to Sonoma, I met, quite by accident, the man who would become my first husband, Bob Haley. Actually, he moved in with me and we later declared ourselves married, thinking California recognized common law marriage.

  Bob, who was nearly eighteen years older than me, lived upstairs from my two-room apartment in Rio Nido on the Russian River in northern California. When his “old lady,” Mickey, author Richard Brautigan’s ex, who was all of about twenty-six, left him, he moved into my place without my express permission, which I took as a compliment at the time. He promptly came down with mononucleosis and I devoted myself to nursing him back to relative health, thus abruptly ending my early twenties dating and free-love experiences.

  He was very intelligent and, for the most part, kind, and had a variety of interesting friends (professional musicians from Ohio who worked for Bill Graham in sound engineering, independently wealthy people who were into astrology and mysticism, ex-bikers who were writers, ace sports car mechanics). A couple of these people are still among my closest friends, more than forty-five years later. The problems were that he was both an alcoholic and manic-depressive, and this expre
ssed itself in bouts of bombastic diatribes, arguing, and public embarrassment alternated with many weekends and evenings of, “I don’t feel like going anywhere. I’ve done that before. I’m a little down tonight. I just want to sit here and read. Would you make me a cup of coffee?”

  I thought that if I could just be a better wife, anticipate his needs, never make a mistake, he’d stop drinking.

  We bought a little cabin with the limited but appreciated down payment assistance Mom offered. (“Are you living with him . . . as man and wife?” “Yes, Mom, we consider ourselves married. I go by Francine Haley.”) Our arrangement was not easy for her to accept, as a religious woman born in 1908, but then, she also thought she might go to hell for smoking and drinking coffee. And there was a part of her that was glad I was with someone at all. She had, after all, approved of my first serious high school boyfriend, who would have been even more of a disaster as a husband.

  More than once, while we sat in the living room, or at our round oak table, or lay in bed, this discussion ensued:

  “Wouldn’t you like to have a baby? Would that make you happy?”

  “Someday, Bob, yes, I want that. But I’m not ready right now.”

  “Well, we could get married. Wouldn’t you like that?”

  “I feel like we’re already married. Getting a government stamp for it won’t make it any more spiritual, or real.”

  I soon realized that these proposals were a trap; Bob knew that legal marriage and having a baby would make me feel unable to leave.

  At this time, I didn’t fathom the huge physical drain it would have been for me to have a baby, a child. I now see the potential great difficulty, particularly having waited until I was in my late forties for a stable marriage. I’m not even sure that carrying a baby to full term without going to bed for months and essentially living in a wheelchair would have been possible for me, since it is very difficult for me to walk, and always has been, while carrying more than about five or ten pounds. Having twenty or more pounds out in front of me would certainly have been hard on my already stressed back, not to mention its effect on my precarious sense of balance. Plus, my badly deformed hip and pelvis would have been stressed and compromised by labor, if I could even manage a natural birth.