I was incredulous but kept calm. This was yet another example of how doctors sometimes assume disabled people are just sitting home not doing much anyway, though I doubt that he was thinking about the details. In his defense, he was looking for possibilities.
He lightly tapped the shin of my left, strong leg. “Or perhaps a piece of the bone in this leg could be taken out, to shorten it.”
“And if it didn’t work, then I’d lose the use of both legs . . . do you think that would be wise?” I was not taking this seriously, but felt I should still be respectful.
“Yes, yes . . . there could be risk of infection . . . and then possible amputation. It was just a thought.”
And an alarming one, don’t you think? At least as cavalier as my mom’s amputation idea forty years before.
He finally said, “I think you should get an arch support.” (This sounded reasonable, at last.) “Do you know John Allen, the orthotist?”
“Yes, I’ve worked with him,” I said. John makes orthotic braces for patients who have lost the use of muscles or tendons in their ankles and have a drop foot like me—instrumental in helping to prevent trips and falls.
The orthopedist called John while I was still in the room.
“I have Francine Falk-Allen here in my office,” he told him, “and she needs an arch support. You know, she has a horrendous limp . . .”
He went on to describe the type of support he thought I should have, but I got stuck on “horrendous,” and basically couldn’t concentrate on anything else he said. No one had ever called it that before. I kept thinking, Uh, I’m right here; I can hear you. “Horrendous?” Really? Have you never seen another person who’s had childhood polio paralysis? I would have expected him to use a word like “severe” or “marked.” But many doctors have a habit of discussing patients as if we are not humans with emotional responses to their comments. “Horrendous,” after all, comes from “horror.” And it’s true, my walk could be compared to Frankenstein; children imitate me in that mode. Dogs sometimes bark at me because my sway from side to side frightens them. But they’re to be excused for their poor manners.
At John’s orthotic office, he told me that instead of just diving into an arch support, I should see a podiatrist first. And I did, a few days later; I had already made an appointment with him prior to seeing the orthopedist, on the advice of another doctor.
“I think you might have arthritis in that foot, besides a fallen arch,” the podiatrist said after examining me.
“I come down fairly hard on that foot,” I said. “You can never have more than 100 percent of your weight on either foot at once, so each foot has equal weight on it,” he replied.
True; however, I do leave my weight on that strong foot for about twice as long as the other one when walking, since my weak leg cannot hold me up on its own for more than a second. (The sound of my walk is “DUNT-duh, DUNT-duh.”) When I am walking quickly my pace is somewhat more even, but with a limp, you do work the stronger foot harder. I walk as if I were falling from the small foot to the strong one—and I’ve done that for sixty-plus years. If nothing else, my larger foot was and is stressed from compensating in gait or stance for the lack of strength on the other side.
I was surprised that this highly-recommended podiatrist couldn’t see all this, but I didn’t bother trying to explain it to him. Often, doctors are pressed for time, and they go with their own primary diagnosis and analysis regardless of patient input. I didn’t feel like he wanted to hear my theories.
He did suggest an arch support (he sold me a temporary altered ready-made), a small elastic sleeve around the arch, and also said that I should stretch the calf in that leg, because the outside calf muscle supports the arch by wrapping around underneath it.
In the weeks that followed, I tried doing the stretches—leaning my arms or hands against a wall with my weak knee bent and the strong leg back straight with foot flat on floor—and very soon I began to have worsened back and hip pain every time I did the stretch. I found, however, that I could do the stretch comfortably in the pool on the ramp we installed.
We all have to adapt to whatever turns up in life. On a daily basis we make constant decisions and adjust to changes we did not expect.
Your favorite radio station won’t come in for some reason, so you turn it off or grab your iPod for some tunes. You realize that your old toothbrush is not presentable any longer and you throw it in the trash, thinking you have a new one in the drawer—but you don’t. You break a shoelace. Your back hurts, must have slept on it wrong. You keep having to change lanes on the freeway, seemingly cursed by a parade of tortoise-like Priuses (Prii?) or Volkswagen buses in the fast lane.
Stuff happens.
All this stuff happens to me, too, and to all disabled, handicapped, and differently-able people. We have a lot of other limitations and changes we have to adapt to on top of the usual things, which can be really overwhelming. Over time, of course you get used to it, but honestly, part of why I am such a terrible “time debtor” (often late) is that I have convinced myself that I’m the same as everyone else and can throw on my shoes and dash out the door. If only.
As my current polio doctor tells her student interns, “Polio patients know a lot about their bodies and aren’t afraid to tell you. They are pretty sure they know everything, in fact!” (Wink. Or I hope she’s winking.)
Some of my doctors have been remarkable and some of them, as you can see, have been, well . . . less so. Luckily, I’ve always managed to find my way to the good ones eventually.
36
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keep on truckin’
By the time I arrived at Dr. Vandenakker’s door in Sacramento, about a year-and-a-half after my initial foot pain had begun, I had also begun having pain in the top of my strong hip, radiating from my spine. Whenever I’d had back pain previously, it had generally been low-back. I had found that stretching, icing for twenty-minute sessions, and sometimes massage were the most effective in alleviating my back pain. But this time, none of that was really working.
Dr. Vandenakker and the internist she was training were both far more concerned about my back pain than the foot. This was reasonable, since a fallen arch is something a lot of older people get, but if your back is giving you daily trouble, you may have something going on that is more serious. I was not happy to hear this, since the foot pain was constant and the hip/back pain was intermittent. But I complied.
We did x-rays and later an MRI, which together indicated a multitude of interesting lower-back maladies: slight disc degeneration, slight arthritis in my back and hips, slight disc swelling, and two Tarlov’s cysts the size of Jordan almonds.
After doing my own research on this (Tarlov’s cysts, it turns out, are abnormal sacs filled with cerebrospinal fluid that can cause nerve pain), my concern heightened and I got in to see another UC Davis back doctor. I took the MRI report to the appointment.
At his office, the doctor said, “The Tarlov’s cysts are inconsequential and benign. They rarely cause problems. But I’d like to take a moving x-ray of your back. You have such a length difference in your legs, and I see from your MRI that you have arthritis, disc degeneration, and canal stenosis [narrowing of the spinal canal] in your back.”
In the x-ray process, the machinery moved me up and down from the waist and x-rayed my back at the same time.
At 7:00 p.m. the doctor called me at home, after reviewing the x-rays. He said, with some urgency, “You are way too flexible. I recommend that you have a spinal fusion right away—as soon as possible.”
I was alarmed. I consulted my other doctors: Dr. Vandenakker, Dr. Byers (my new back doctor here in Marin), my physical therapist, and even my gynecologist, who’d had back trouble. All of them recommended against surgery, telling me there was about a 50 percent chance that after surgery, my back would be the same or worse.
Dr. Vandenakker had recommended physical therapy for my back, which was helping, but we weren’t getting anywhere wit
h my foot, even after trying TENS electrical stimulus and ultrasound. I saw another orthopedist and he too was more concerned about my hip and back. Finally, John Allen recommended the orthopedist I now see. “He does nothing but feet,” John said, and assured me he was the best in Marin.
This doctor knew just from looking at my foot that I had an irritated tendon and tenosynovitis, irritation of the tendon sheath, which was causing severe electrical-feeling shocks, sometimes every thirty seconds, making it impossible for me to sleep. He recommended I try a new procedure that often assists stubborn tendons to heal, called PRP. It involves drawing some of the patient’s blood, putting it into a centrifuge, and condensing it into platelet rich plasma (PRP), which is then shot into the tendon. The procedure was incredibly painful, my foot did not recover as quickly as expected, and I had to wear a plastic cast, making my limp worse—plus my back pain then worsened in the following weeks. Another dead end.
I requested one more prescription for physical therapy. Another new therapist suggested, after a couple of sessions, that we try using Kenesio Tex Gold tape. This is a stretchy tape that pulls the skin away from the tendons and ligaments slightly, which seems to result in their having more space to get proper circulation—very helpful for tenosynovitis nerve pain. One can wear the tape while showering and swimming, and it stays on for up to five days. The therapist started the tape on the outside of my knee and ran it down the exterior of my shin bone, made a U-turn across my ankle, went over the sore point on top of my foot, and then under my arch, ending just at the outside of my foot.
A week or so later, I had less pain. I could then do the arch-and tendon-strengthening exercises she recommended, using rubber Thera Bands, which provide varying levels of resistance. Gradually, over a period of many months, having worked up to about twenty minutes a day of exercises, my foot healed. (This time was in addition to the average of an hour of yoga and other physical therapy I do daily.)
After this long ordeal, I felt like I deserved a medal for perseverance, for not giving up on myself. Then again, as one of Dr. Vandenakker’s student assistants said to me, “Pain is a great motivator.”
Later, my strong thigh was diagnosed with tendinosis at the top back, a permanent condition I needed to address with more targeted exercises for two years. I now baby this with a seat cushion and limited time spent gardening. At one point I realized my foot and thigh had caused no pain for a while. I have experienced months of relatively low pain. My thumb, back, foot, and thigh pain do flare, and I have consistent mild-to-sharp arthritis pain in my major joints and back. Yoga, core strengthening, specific stretches, frozen gel packs, taping, and rest help correct or alleviate these issues. I also use non-steroidal anti-inflammatory drugs, such as ibuprofen, in moderation. The persistence in self-care is necessary for me to keep functioning. But as my polio doctor told me early on, I will probably never be completely pain-free.
I used to be a meditator, and I think I need to resume that practice. My pool therapy is a form of meditation, but activity requires a certain amount of attention and thinking—not the same as sitting meditation. Several studies indicate that people who meditate, especially using the technique called mindfulness, report feeling significantly less pain than other people, and that meditation is particularly helpful for people who are trying to reduce pain medication. (Mindfulness is simply focusing on the present, and watching thoughts come and go with no emotional attachment.) This lower experience of pain is in spite of the meditators’ MRIs showing slightly more activity in the area of the brain associated with pain. It seems—based on their having less activity in the regions involved in emotion and memory—that meditators experience the pain but not the unpleasantness of the sensation, because their brains avoid identifying the sensation as painful.
I gradually fell off of meditating because every time I sat quietly, though I experienced more peace of mind and quiet joy, I also was flooded with inspiration and felt overwhelmed by all I wanted to accomplish—more than was physically or energetically possible for me. I also felt less tired and needed a little less sleep. So I will need to re-learn ignoring the inspiration and letting those thoughts go when I start up again. One more thing to do, but worthwhile.
There’s hope. As a friend said to me decades ago when I was complaining about a situation, “One thing you can count on is change. The seasons come and go, and if this one is not going well, there’s another one coming along. Put one foot on the ground and then the other.” I do this attitudinally, even when I can’t do it physically.
As we age, there is always physical stuff to deal with. I’ve been physically handicapped most of my life, so my parts wear faster and get out of balance more easily. It takes constant vigilance to take care of my dear, hard-working body and to keep on truckin’.
37
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ageism and reverse ageism
One day a few years ago, I went into a hair salon to buy several products. Parking is not good in that area, so I didn’t go in very often, and when I did, I bought a lot. I had found a parking space just a couple of doors away so I was only using my cane and not a crutch (or two). It’s also very difficult to carry a bag when using two crutches, even of the arm cuff variety.
A new clerk at the salon, who had not seen me before and who looked to be only about ten to fifteen years younger than me, was hovering to make sure I could find what I was looking for.
Okay, over-serving is all right, but then she said, “Are you still driving, dear?”
I was stunned. I looked at her and replied, “Yes . . . I had polio.” By which I meant, but did not say, “I’m not that old, dear. I’m not a decrepit old lady who can’t drive anymore. I’m only about ten years older than you, dear.”
After I made my purchases, she said, “Would you like help to your car?”
I was happy enough to let her carry the bag, only about five pounds. Then of course she saw me climb into my Lexus hybrid SUV. Not really a little old lady’s car. But it did throw me to be treated as if I were ancient and decrepit. I told my close girlfriend about the incident and she also thought it was weird. I feel it was the cane that caused the woman to stereotype me.
One of the oddest things people seem to think, in my point of view, is that most handicapped people are old. This has been brought home to me numerous times, but there are two very different ways in which this manifests. It will be helpful for you to know that my sister, my mother, my nieces, and I have all generally looked younger than we really are, at least on most good days, by about five to fifteen years—a combination of genetics and our use of cosmetics.
I use a handicapped placard and have permanently disabled vehicle license plates, and what a difference those have made in my life. I am often able to park close enough to my destination so that I can make the distance to a front door without having to sit down and take a break on the way—or having to skip the venue entirely. (Sometimes, if there’s no close parking, I do just turn around and go home.)
So many times, an older person, usually in their fifties, sixties, or seventies, has come up to my car window, angrily asked me to roll it down, and said, “You can’t park here! This is for handicapped people!” To which I have answered, sometimes with a little impatience but in later years with almost no emotion, “I am handicapped. I had polio as a child and I have a paralyzed leg.” To which the curmudgeonly old person has invariably responded, “Oh. Well, you don’t look old enough to be handicapped.”
Though I am rarely at a loss for words, this leaves me speechless. Sometimes, the crank will say, “Oh, I’m sorry,” turn, and walk away in embarrassment, or, “How could you have had polio?”—possibly thinking I’m lying. I always want to say, “You don’t have to be old and ugly to be handicapped,” but instead I usually explain that I was born in 1947, to which they usually reiterate that I don’t look that old. Nice, but it rankles to be interrogated in this way. (These are folks who had not seen me walk; they’d only seen me from the shoulder up, sitti
ng in the driver’s seat of my car.)
This age-related disability mindset is a sort of reverse ageism. Since when did disability affect only old people? It’s a prevalent concept: you are (or look) young, you could not be disabled, or, you must be old if you are disabled. There are plenty of young people with Crohn’s disease, heart trouble, and other ailments, however, so I never assume, when I see a young person using a DP placard, that they are an able person doing something unethical (and also illegal). I have, however, occasionally asked people whom I’ve seen sprint from a DP spot into a store if they are disabled; when they’ve answered yes, I’ve said, “Oh! What’s your disability? I’ve had polio.” I hope that if they are using the placard illegally they’ll think twice about it the next time, and if they’re legit, I might learn something.
The other side of this coin is that frequently when young people see me walk into a room with a cane, they treat me like I’m a really old person—which was weird when it happened in my thirties and forties, when I looked like I was in my twenties and thirties. There is a difference between being treated like you are handicapped and being treated like you are old.
People treating you like you are handicapped can vary from the obsequious hand-wringing over whether you’re going to trip, the “do you need someone to hold you up to get across the room,” and the “let’s put you in a wheelchair-accessible room” at hotels (even when you don’t have a wheelchair) to the much-appreciated simple query regarding whether you need a little assistance, might want to use the elevator around the corner, and/or are capable of managing a few stairs.
But being treated like you are old also means that when you are out with someone, if the waitperson sees your cane, you are always handed the check. It means that maître ds speak to you as if you might not be able to understand or might be deaf, and say, apparently in the way they talk to Grandma on holidays, “Now, are you okay sitting here?”
Not a Poster Child Page 26