Not a Poster Child

by Francine Falk-Allen

  On any given day I may pay bills, manage medical providers or health insurance, run errands, shop, manage repair people, go to doctor appointments or my writing group, and so on. I try to get out and have lunch with a girlfriend at least a couple of times a month. Since I can no longer do a lot of the things I used to do, like go for a hike, go to places that require a lot of walking, or go to a Sufi dance meeting, I make it a point to socialize when I can so I don’t get too isolated. I love to be with my girlfriends, mostly one at a time, and am in several groups that meet regularly: a supportive monthly women’s group, which has the purpose of listening with compassion; a Sufi women’s group, which does spiritual practices and hangs out for a day together every two months; the polio support group I started, meeting once per quarter; a writers’ Meetup group I founded, which I facilitate twice a week; and a tax professionals’ group, which has a fun small lunch bunch that meets once a month. I have taken my new TravelScoot battery-powered trike to fairs and to malls, where a little shopping has become realistic for me again, though it’s not a priority for me (I didn’t get the shopping gene), and I look forward to going to parks again, where my friends can walk and I can tool alongside them.

  The internet and email are a time sinkhole, but also a necessity for me. I have shopped online for twenty years for all our clothing and shoes, as well as many household items and gifts. It was a breakthrough for me to realize I could do this instead of foot shopping. At the same time, I can sit down intending to spend a half-hour on email plus its attendant responses or new tasks, and get up two hours later angry with myself.

  Around 7:00 p.m., after resting, it’s time to cook dinner. I like a freshly made meal, with a nice piece of fish or chicken and interesting veggies, with maybe a little brown rice, sweet potato, squash or quinoa, and Richard needs a healthy dinner because there is no telling what he’s eaten during the day. Meal prep takes me forty-five to ninety minutes. After cooking, I’m sometimes in considerable pain, either in my back or strong foot, from standing for too long. I try to organize things in order to do part of the prep at the low counter we put in opposite our sink, and have been more committed to this of late. Otherwise I can barely make it to the dinner table or the couch when dinner’s ready.

  By later in the evening, I am ready to veg in front of a good movie, and I’m wiped out by about 11:00 p.m., though we’re rarely asleep by then.

  Weekends we finish what didn’t get done during the week and sometimes get into the pool together, go out to dinner or get take-out (on weekends, I deserve a break), spend time with friends, go see a movie or hear some music. When we go out, Richard drops me off near the venue. If he can’t, and it’s more than a half-block walk, I use two crutches (instead of just one or a cane), or assemble the scooter.

  This is how I live. I think it’s similar to other older women, just with more limitations. Being handicapped (or aging) requires a lot of discipline, especially given I’ve been rather like an oldish person since I was three. No surprise that I like a glass of champagne now and then.

  41

  —

  as good as it gets

  If the world were merely seductive, that would be easy. If it were merely challenging, that would be no problem. But I arise in the morning torn between a desire to improve the world and a desire to enjoy the world. This makes it hard to plan the day.”

  —E. B. White

  This quote describes how I feel almost every morning.

  In the Jack Nicholson/Helen Hunt movie with the same title as this chapter, he plays a guy with a pretty advanced case of obsessive-compulsive disorder, OCD. She plays a waitress and dedicated mom with a kid who has a serious chronic illness. They are an unlikely romantic partnership, but they seem fated to have some kind of relationship. In one scene where he’s in his psychiatrist’s office (he’s butted in to get a session, feeling that his issues are more pressing than other people’s), he looks around the waiting room at the other patients and says, “What if this is as good as it gets?”

  Indeed.

  Living with a disability is limiting. There is no way around that. But we all have limitations of some type. My physical ones are just well above average—and perhaps way below that of an amputee or maybe a blind person, I don’t know. I try to keep away from comparing handicaps, though it does come up, given the competition for handicapped parking and good seating. How handicapped are you, anyway? No one ever says this, but I’ll bet I’m not the only one who’s had the thought.

  I once read an article by an eighty-nine-year-old polio survivor. He said that having had polio as an infant had left him with a debilitated upper thigh and he’d had one foot-tendon operation. He’d actually tried to join the army, perhaps for the Korean War, and been rejected. He found himself with a drop foot when he got into his seventies, which slowed him down a bit—but he said polio had basically not affected his life, except for his not being allowed to fight in a war.

  I chuckled while reading his story, and said aloud, “Good for you, Friend. I wish I could say the same.” Polio, as you now know, has affected my life every day since I contracted it. By the end of most weeks, I feel like I have climbed Mount Everest.

  It’s interesting to me that many people have accepted me as totally normal even though there have always been a lot of things I could not do or had difficulty doing. Either they could not see it was difficult, or they cared so to include me that they acted as if I were the same as anyone else. Then there are the folks who saw I was handicapped and would be a consideration and drawback for group activities (the ropes course). And there are my friends who don’t know I have to rest after walking a short distance or cooking dinner, or who perhaps have silently thought, Good for her that she keeps up despite her limitation. People do like us best when we try not to let our disabilities limit us. I can tell you, though, that as a group, polio survivors almost always take on more than we should, and we’d do better to conserve our energy.

  I have a friend who thinks I am a hero who takes on a lot of life experience and just gets on with it despite difficulty. I so appreciate that she sees that—and though at first it felt embarrassing to hear her praise, she has gotten through to me. I do find, however, that sometimes people who put us crips on a pedestal are then disappointed when we eventually display that we have the same warts as everybody else.

  Like I said, not a poster child.

  Occasionally I see myself as heroic, but usually I just see my condition as the hand I got dealt (and I’d as soon have had a royal flush). Everyone has something they have to face that they wish they didn’t. Some folks have clearly had a difficult life, while others seem to have had it easier, but any unwanted problem seems tough to the one who’s having it—and any choice is a problem, of sorts, anyway. There are lots of problems to answer daily, and it’s possible to address them as curiosities! Experiences! I’m not saying I can always do this, but it is a muscle I had to develop relatively early. In every moment, we are choosing our actions and attitudes, whether automatically or with awareness.

  The crux of the matter with problems is what we do with them, not that we get them in the first place. That we keep getting up and looking out the window and finding something to anticipate and to motivate us is the real stuff of life.

  In the long run, people love us for what we bring to the party, not because we are heroes. There’s a bit of star power in being a hero—some might want to be around that energy for the warmth, intensity or because the strength might rub off—but heroism can distance people a bit, too. Being strong and being tough are not the same, but from the outside, they may be misconstrued.

  We can’t much help what pops into our heads, but I like to be aware that what I think either limits or expands how I see myself and others. And I’ve found that appreciation and gratitude are the keys to happiness. It is not always easy to remind myself that I’m lucky I have not spent my life in a wheelchair. I do reflect on that sometimes; I actually say to myself, “I could have bee
n dead by now from having even less physical activity.” As difficult as it has been to move, to accomplish, the challenge is better than if it had all been impossible. But that’s kind of abstract when I’m reaching for furniture and walls in order to walk to the kitchen in the morning. So I have to consciously move my thoughts toward whatever good there is, whatever I can love. A good laugh with a girlfriend. A cup of strong black Assam tea with a little milk and sugar. Popcorn. My affectionate cats. An engaging novel. A banner crop of roses. Being in a warm pool. Richard remembering that I’d like him to do some task (without being asked), or sharing some humor with me, and especially his tenderness.

  Life turned out. I married a life partner, despite those who thought it was a long shot, or that I might not be equal and worthy. I have at least two dozen close friends, a few close relatives, and a couple hundred other friends with whom I have loving relationships. I have a beautiful home, set up to be accessible. I’ve written a book. I’ve worked really hard to have all of this, and much of it has been a joy. I still have probably twenty or more years left. Though everything physical is getting harder to do, and every step has been a challenge, I am still bound to have some fun.

  I have not shied away from much of anything in my life, though I probably should have concentrated my efforts and not spread myself so thin. I could have had more perseverance about finding work in a creative field. I remember thinking in my twenties that I wanted to do everything, see everything, and go everywhere I could, have as many life experiences as I could find. Yet I wound up being an accountant, having started out determined to be an artist. However, I loved my clients, and along with Sufism, singing in many groups, and other artistic expressions, my social and spiritual sides were fed.

  I was able to do a lot of volunteering for the Sufi and other organizations, attend many classes, and do self-study in a wide variety of subjects: art and accounting in college, spiritual studies, self-growth seminars, songwriting, poetry, more painting and drawing, genealogy, psychology, taxes, and more. My varied interests were also served by not having children, though there are days when I feel a little sad about this. I have traveled a great deal—not nearly as much as I would have liked, but I think sixteen countries and twenty-four US states is pretty good.

  One could say that polio has not kept me back. But it did. I really would have liked to do a lot of mountain hiking, or to have languidly wandered for hours through gardens, art galleries, museums, and quaint little shopping streets with intriguing cafés. At this time in my life, walking for more than half a short block requires that I stop and rest due to my leg’s weakness.

  We have taken my new TravelScoot portable trike to Scotland, Ireland, England, Tennessee, Colorado, and Hawaii, and with it I felt liberated in the world of travel. It traversed flat cobblestones quite well, and although it has its limitations— some terrain is impossible—it’s so lightweight that Richard can pick it up and roll it on the front wheel or even carry it up stairs for me. The trike allowed us to do far more together than we’ve ever experienced. We went on long “walks” through big gardens, museums, and castles where he did not have to push me in a borrowed wheelchair; I’d just hop off whenever I wanted to and have a look around. It saved me a huge amount of energy, and we enjoyed each other’s company so much in our new mode. You may even see me soon at a mall, the kind of place to which I rarely ventured in the last decade. (Actually, you’ll more likely see me on some paved pathway at a lagoon or park, but you get the point: I’m determined to have it work, despite the obstacles.)

  I love my life. And I love my husband, who has become, over time, my best friend. We have learned so much together. I accept (most of) his foibles and (I hope) he turns off his listening when I swear after tripping or dropping something. He has a great sense of humor. He’s affectionate, smart, works hard, and is helpful around the house (except in the garden; he’s forgiven for that).

  Since children were not in the cards, I have loved having pets, who have been there for me through thick and thin. Now we have Leila and Lucy, two tortoiseshell cat sisters, one black and one grey, who are sweet and amusing. Evenings find us all gathered around the plasma TV, maybe with a fire and popcorn, Leila behind me on the back of the couch, Richard working and intermittently asking me what’s just happened in the movie we’re watching, Lucy actually watching with us (she loves Ratatouille and Wall-E), and me often falling asleep three-quarters through the film.

  Our home is a haven for me, and it’s been that for others as well. Assuming we never have to sell it, I will not have to move or change anything if I do end up using a wheelchair at home. We also have room for a live-in caregiver if we need one. We’ve tried to make the place lovely and welcoming, if a little full of the clutter that’s sneaked in and settled into a few of the rooms.

  We have a hard time finding places we want to go to when we need or want to get away because our home is so idyllic for us: warm pool, nice garden, great bed, kitties, almost no stairs, nice neighbors, liberal county with great scenery, and San Francisco culture nearby.

  The pool is my lifesaver in many ways. I am fortunate that we were able to install it. I should be able to use it for years, given the ramp we put in. Someone could even wheel me in there later on if necessary, though I hope I will always be able to get in by myself. (My older polio friends are an inspiration to me; most who are in their eighties or nineties are using walkers, but they still manage to at least do chair yoga and keep their weight at healthy levels. So, fingers crossed.) It is so rejuvenating to walk in the pool with the water supporting me, rock and roll on our outdoor radio, and look out at the hills a few blocks away. I enjoy sighting the occasional red-tailed hawk as the crows chase her from their nests in our few local redwoods, and watching the clouds breezing in from the Pacific. The pool has reduced my back pain, helped me keep my weight down, and kept me flexible and my lungs (and probably everything else) strong. I get a lot of thinking and problem-solving done out there. I also manage to empty my mind and enjoy what my body can do: the power of the butterfly stroke, and the ease of lying on my back doing a frog stroke and viewing our jacaranda, sycamore, and oak trees through the seasons’ changes.

  I have good relationships with all my relatives, despite the anguish I went through with my mother, and despite many of my mom’s siblings and children having radically different political and religious views from me. This has not destroyed our affection for each other. (The Allen side is a bit more liberal, though they are also spiritual. I have great friendships with Richard’s family, too.) I have forgiven Mom and I hope that if she was disappointed in me, which I am fairly sure she was, that she forgave me too. Who knows what my dad would have thought of my somewhat unconventional choices and left-wing politics? Then again, he was kinda maverick-y, and given how much my internal makeup and genetics are like his, I like to think he would have eventually let me off the hook as well.

  I am thankful for my phenomenal girlfriends—intelligent, funny, compassionate, open-minded people. Both my women’s groups and individual friends have been so supportive, hearing my struggles, triumphs, and comedy for two or three decades. All the laughter, the tears, the insight, and the wisdom have made me feel so content, whole, complete, and truly known.

  It is hard for me not to envy others’ being able to walk for a half-mile without sitting down or leaning against a post every block. That “lazy” but hard-working leg is there every day, with every step I take, even with where and how I sit, since one of my hips is so much smaller than the other. I have to say no to things I’d like to do, and save my energy so I don’t wear out what I have left, unlike others who may need to do more to keep their bodies in shape.

  If I were to have a choice, I definitely would not be handicapped in my next life, nor would I have consciously wanted it in this life. If I did choose this condition in a spirit world in advance of coming here, I hope I learned whatever I needed to and can skip this type of lesson next time around, if there is another time arou
nd.

  Meanwhile, I’m glad to be here, albeit not as fully functional as I was twenty or thirty years ago, and never in my life as able as most people, at least since I was three. That’s getting to be longer and longer ago, so much so that I felt I needed to write this book before I forgot what it was like to run down the sidewalk.

  Looking ahead, I have a quiet excitement about pruning my roses each winter and enjoying bouquets from March through October, though that might sound boring to some. There’s more travel in my future, more live music, more great books and movies, occasional relaxing swims with girlfriends, and a lot of time laughing with friends and relatives. I am facilitating and creating beauty, and I take my small pleasures in life as they come. I am often filled with wonder and gratitude.

  I’m looking forward to doing as much as I can for as long as I can without doing myself any damage.

  And that’s a good plan for anyone.

  Richard and I on a recent wedding anniversary.

  AFTERWORD

  —

  parting shots: about vaccines

  Several people who knew I was writing this book said to me, “Are you going to talk about vaccinations?”—and I realized I really wanted to address this topic. So please put on your best studently attentiveness for just a couple of minutes. It’s interesting, I promise.