Not a Poster Child

by Francine Falk-Allen

  Lots of polio patients have had children and made it through. Some women—with, I should note, lesser paralysis and pelvic deformity than me—have told me it “wasn’t that hard.” I asked one of the women in a polio group how she handled it, and she said she had a Caesarian, for one thing, which compromises already weak pelvic muscles. I told her I thought it would have been hard for me to pick up a child and walk with her, if she weighed more than ten pounds, and my acquaintance told me that it was unusually hard: she could not lift and carry her child due to her back and leg issues, which had resulted in the child bonding more with the father. She’d had a lot of help from family and her husband.

  I did not have family nearby who could have assisted me, and neither Bob nor my current husband would have been the baby-tending type. If I’d had a child with Bob, when I left him I would have been a handicapped single mother working full-time and barely able to support two people, let alone take care of a child. So fate did me a favor, though I have sometimes regretted having no children. I wonder if anyone will come see us when we’re older.

  Bob and I knew a young man named Leslie Scardigli, who was a quadriplegic, and people hung out at his house in Rio Nido. He had a caregiver, Alan Hardman, and both of them were intelligent and hospitable.

  Once, in the early days of our relationship, when we were relaxing with after-dinner coffee in the spacious living room of Lani and Al Krauss, our closest friends, Bob said, “I don’t understand why women are so attracted to Leslie. What is it, Alan is the body and Leslie is the mind? I mean, Leslie’s body is useless. How could he have sex?”

  Then Bob looked at us with a half-smile, like it was a perverted type of attraction women had for Leslie, and as if he expected one of us to answer.

  I reflected a moment, then said, “I think Leslie is an attractive man. He is still fun to talk to, even though he’s in a wheelchair. And who knows what he can or cannot do.”

  Lani chuckled and said, “Yes, who knows, Bob?”

  I was a little uncomfortable with the conversation and we dropped it and went on to different topics, like astrology, gardening, and whatever else was on our minds that evening.

  But this diatribe of Bob’s—and he went on it more than once—bothered me for two reasons. One, Leslie was very handsome, engaging, and charming, so it was easy to see why anyone would find him attractive. He gave you his full attention when you spoke, with big brown eyes that often twinkled as if there were some joke he was on the verge of divulging. I believe he thought his condition was a huge, absurd, damnable joke. You could see that before his accident he could have dated just about anyone he wanted to.

  The second reason Bob’s comments bothered me was that I, Bob’s partner, was handicapped. I was not paraplegic, but didn’t my boyfriend see some similarities between me and Leslie? I sure did. I had full paralysis below the knee, and partial from knee to hip. I was very clear what having paralysis in other parts of my body might mean. Didn’t Bob see that to give a critique of Leslie’s probable sexual inadequacy and almost make fun of it to others was bringing into the line of fire my possible inadequacy as well? My limitations in that realm? I might be able to do most of what others could do, but some things needing two strong legs were out of the question. To people who were more physically active than Bob, my inability to hike or do whatever else people might like to do on a date might make sex with me seem out of the question, especially given the unattractiveness of my little leg. Who’d want it? I took personal offense at his comments about our friend.

  Bob’s dissing Leslie’s body actually made Leslie more attractive to me and Bob less attractive. If I’d been more mature I would probably have thought, “Hmmm . . . Maybe Bob’s not the guy for me, actually.” But at that time, I looked up to Bob as a more knowledgeable person than myself, and I was also invested in having our relationship last no matter what. Plus, I loved him and was willing to overlook a lot of faults.

  I “married” Bob in 1970. After a year or two, he got tired of supporting me, so I went job searching. First I got a job soldering printed circuit boards ($1.80/hour, minimum wage); soon after that I found another job pounding pegs in wooden puzzles at a cottage industry where some of the employees camped out behind the factory—not a career, but at least these were sit-down jobs.

  One day my boss walked through the games factory, on his usual rounds to see how things were going. I was seated on a high stool, pounding pegs into holes with a wooden mallet at a huge work table, and when I saw him I called him over.

  “Dick, you know, because the drill press is set a little too small, you are losing about 10 percent of these blocks when I put the pegs in, because the pegs split the holes. Then when the blocks go to sanding, the pegs stick out and tear up the sanding belts, so you’re spending more on belts, and you lose some puzzles because they go flying off the belt. Maybe another 10 to 15 percent of them.”

  He looked at me as if he had not seen me before, though we’d said hello many times. “Really . . .” he said, not as a question but an observation.

  The next day, he came to me and said, “I think we have you in the wrong position.” He brought me up to the front office, such as it was (we all wore jeans and smoked expensive brown paper Sherman’s cigarettes on Friday afternoons; I just puffed, never inhaled), promoted me to cost estimator, and had me start doing time and motion studies.

  Unfortunately, part of why my boss wanted all this accomplished was because the company was bleeding money. He was hoping I would tell him where the greatest wounds were. Once I’d accomplished this, I was laid off, and once again, I was afloat career-wise, unsure of my next move.

  Meanwhile, Bob and I were about four years into our relationship. We were now making love only once a month (not my idea, in my twenties, of a typical relationship), we were arguing more often, and his drinking was escalating (he had apparently been in a temporary “alcoholic lite” phase when I met him). I came home more than once to find he’d puked in the bed.

  What the heck am I doing here? I wondered. I had my whole life in front of me.

  I lost most of the twenty pounds I’d acquired as a wife/cook. I had two or three brief affairs in short succession, partly to reassure myself I was still attractive and partly because I was frustrated and wanted a sexual relationship, not just a housemate.

  Bob loved me dearly and was a sweet man and a good friend to many, but he did not love himself nearly enough, though he blustered and feigned a huge ego. After too many binges on his part and too many weekends of my running away, leaving him alone while I saw friends, in an attempt to try and get him to go to AA, or counseling, or anything that might help our relationship to become what I was beginning to realize it would never be, I left. Five years of effort ended in 1975. It was a difficult decision, but I had a lot of support. Bob tried to get me to come back, but I stood my ground. I still saw for myself a hearts-and-flowers future, with hubby and one or two kids, and I was only twenty-seven.

  I spent a summer going to parties and bars, exercising my freedom, though I felt lonely and upset. I wrote a lot of country western songs—some of them not bad: “Insomnia, we’re here together again; sometimes I feel . . . you’re getting to be my best friend”; “You planted the seed . . . of bitterness in me. It grows like the devil’s grass, so uncontrollably”; “Oh, why does a woman’s mind wander, when things are so good at home?” (Perhaps one day I’ll look for celebrities to sing them.)

  That summer, I also took some aptitude tests (and, concurrently, a typing class). They showed I had unusual ability in spatial relationships and that I should be a mathematician, an engineer, or maybe an architect, and definitely not a nurse (too much aversion to hospitals!). Going back to college in those fields would require moving far away, however, and I had a lot of established friendships, a big Airedale-Malamute dog named Mollie, and no money to relocate.

  I was getting discouraged and did not have a steady way to support myself. I inquired at the Employment Development Departm
ent in Sonoma County whether I could get a job doing lettering or some other beginning art vocation, and they told me there were seven hundred unemployed artists in the county.

  So I went to the local college, Sonoma State (nicknamed Granola State, and later re-classified Sonoma State University). I researched what majors I could take which would be math-related, point me toward a career that would provide steady, sit-down employment, and would be an equal opportunity job in terms of gender. I had most of my general education from my first three years. If I obtained grants and loans and worked part-time, I could get my BA in two years.

  Accounting came up as the only thing that seemed to fit my criteria. Oy. This was so very far afield from my original desire to be a commercial artist, and so removed from my own nature and interests. But the tides were against me. I decided to go for it.

  Over the next two years, I tried to balance having a social life, meeting friends and boyfriends in the local bar (even though I, of all people, after five years with an alcoholic, should have known a bar was a bad place to meet a boyfriend), studying harder than I’d ever studied, and working anywhere from twenty to forty hours a week while carrying a full unit load. I was sleeping a scant six hours most nights.

  After being an art major, the stress of learning accounting and simultaneously taking on bookkeeping jobs to support myself was significant. It was like learning Swedish and learning to fix a Saab with a Swedish manual, all at the same time—and I felt I had little, if anything, in common with my classmates. I took Expressive Arts as an elective in order to get through the two years, writing poetry and songs and sometimes performing to feed my soul. There I met people who were more like those I was used to hanging out with.

  I got two loans and two grants. I sold ounces of pot to close friends so that I had a tiny amount of spending money outside of what I was making through my bookkeeping work. It was grueling, but I made it through, with above average if not exemplary grades.

  At Sonoma State University, I discovered the Disability Resource Center, which was like a Disabled Students’ Union. Its founder and director, Anthony Tusler, educated me about handicapped parking license plates (now DP, for “Disabled Person”)—who could use them, how to go through the process of getting them, where to expect the parking to be, and so on. I remember thinking that it was interesting that disabled people had a center, and feeling impressed that some people at the school (primarily Anthony, I learned) had determined that disabled or handicapped people might have special needs.

  At that time, there was not much in the way of handicapped parking in most places, other than in front of hospitals, doctors’ offices, and schools. The Resource Center’s existence was a wake-up call for me that special needs were being addressed. It was interesting to me that anyone other than a family member would care that some people had physical difficulties. I was still in my “I’m not disabled” attitudinal bubble much of the time, however—I barely thought of myself as a person with special needs—and I did not want to identify with a group that called itself “disabled” or “handicapped.” I’d rather have spent my spare time in the Expressive Arts department, which is exactly what I did.

  21

  —

  wake up, little sufi

  In the middle of all this, I more or less got religion. That first summer after Bob and I split up, in 1975, I went up to Ukiah, in Mendocino County, to stay with our good friends, Lani and Al Krauss. Lani was twelve years my senior and was both a mentor and a very entertaining and close, loving friend to me. She and Al had a piece of property on the McNab Ranch, a lovely, big old house that Bob had helped repair and remodel, and acreage with a barn.

  One day during my visit, Lani and I took either LSD or psilocybin together, and I took a short hike by myself, hoping to clear my head of my divorce.

  I found a shady place in the foothills to sit for a while. I thought I would try doing some chanting—“Om”—which I had learned was best done as three sounds: “ahhhh—uuuu—mmmm.” The “ah” was supposed to open the heart chakra, the center of love and openness; the “u” the throat, the center of communication; and the “m” was said to reside in the third eye to stimulate intuition or intelligence. I found that I had good breath control and could hold these syllables for an extended amount of time. I was also pleased to discover that on the “uuu” sound, there were two or more harmonious notes, like a chord, emitting from my throat.

  After practicing my new experience for perhaps a half-hour, I thought, I don’t know what effect this might be having, and holding my breath for so long, even though on the exhale, might be dangerous . . . I felt like there was the possibility of breaking a blood vessel in my head, or worse. I didn’t think of passing out, though that was probably a more real danger.

  I hiked with my maple sapling walking stick back down the hill to the house. Lani studied esoteric things like astrology and bioenergetics, so I suspected she’d know something about chanting, too.

  She greeted me with a fond, “Hi! Did you have a nice walk?”

  “Yes, ‘high’ is right,” I said, chuckling. “But I was up there chanting ‘Om,’ and I heard these overtones in the notes, like on a guitar—like harmony with myself. I can kind of control it and make the sound go up and down the scale. But I was holding my breath a long time and I began to be afraid I was going to break a blood vessel in my head or something. Do you know anyone who knows about this kind of stuff?”

  She laughed. “I don’t think you would break a blood vessel . . . but, oh, yes, I do know people who know ‘about this stuff’!”

  She put on an album she thought I’d like, by The Sufi Choir, called “Stone in the Sky.” There were songs like, “It’s Coming Back to Me,” about remembering one’s spiritual self. One of the singers, a man named Vasheest Davenport, had a perfect tenor voice. I sat in the Krauss’s music room and read the liner notes while listening to the whole album, enthralled and even brought to tears at times.

  “I want to sing with this guy!” I told Lani at the end of the record.

  She smiled. “Well, these people are in the San Francisco Bay Area; you might be able to hear them sing, at least.”

  That night near Ukiah, we attended my first of thousands of Sufi meetings. We sang, danced (the Dances of Universal Peace as initiated by Murshid [“teacher”] Samuel Lewis in 1960s San Francisco, commonly known as Sufi Dancing), meditated, and listened to a paper on practices of Sufism. This philosophy is described variously as the mystical branch of Islam, the Way of the Heart, and a philosophy in which you learn to become one with God and learn to see from the point of view of others. I wanted to dive into this stream of wisdom.

  I started going to Sufi Dance classes in Sonoma County. These were based on fairly simple folk dancing steps, circle dances, set to various music using the words of many world religions. We sang “Sri Ram, Jai Ram,” from Hinduism; “La Illaha, il Allah Hu,” from Islam; “Kwan Zeon Bosai,” from Korean Buddhism; “My House Will Be a House of Prayer,” from Christianity; and many more. (In western Sufism, we studied all major religions—at Universal Worship services, there were always at least seven religions represented—and I loved this inclusiveness. I have felt a special affinity for the Buddhist enlightened being or bodhisattva Quan Yin, since I read that she was an independent woman who had a lame leg and walked with a limp as she traveled around teaching and assisting humanity. She is said to be a goddess of mercy and compassion who hears the distress of worldly beings. A small statuette of her resides on my dresser.)

  It was not easy for me to do all the steps in some of the dances, such as the grapevine, but at that time I was able to stand up longer than I can now, and I tried to do all I could to keep up in the dances, since I didn’t want to slow down the circle or jeopardize others’ steps. When I became too tired, I sat one out.

  I suspect that few of my Sufi friends ever realized the degree of difficulty the dances presented for me. Years later, when I began to sing in the center, I was still often
encouraged to “stand up to sing”—which, if I’d had the strength in my little hardworking leg, I would have done. Thankfully, we always sat down at the midpoint of the meeting for a lesson or reading.

  I called Lani (who had a new Sufi name, Farida, “The Unique” in Arabic) in the spring of 1976.

  “Hi, can we talk for a few minutes?”

  “Sure,” she said. “What’s up?”

  “I am really depressed and lonely,” I said. “I go out on the weekends and the guys I meet are not the right ones. I know it’s stupid to hope to meet someone in a bar, but that’s where everyone goes. Plus, I hate accounting and I realize it was probably not the best subject for me to study, but now I can’t afford to change majors. I am completely overwhelmed; I wake up anxious every day.”

  “Oh, I’m sorry you’re feeling like this,” she said, her voice full of tenderness.

  “And . . . I was used to having my own home, and now here I am renting in a house with people I barely know, with one small bedroom to myself. It’s a place to live, but not a long-term home. I know it was right to leave Bob, but I miss my old life. I don’t know what to do.”

  “Listen, try doing this meditation: just breathe in and out and concentrate on your heart, gently, imagining the breath healing your heart. Do it daily for at least five minutes, and then you can work up to twenty minutes.”

  “Okay, I’ll try that,” I said, thankful. “But you know, I would really like to meet someone who could help me make my life okay. Like, someone who could give me a mantra or something to make my life better.”