A year or two ago, all this exercise, in addition to my daily ten to twenty minutes of yoga, therapy stretches, and core strengthening, plus gardening, running errands, and cooking dinner almost every night, began to fatigue me even more than what is usual for me. I had to be prone at least once but preferably twice each afternoon, for at least twenty minutes. Finally, my polio doctor diplomatically asked me if I didn’t think I might be exercising a little too much. I smiled and said, “Uh, ya think?!!! Yes, I agree.”
I’ve since cut back to three to five days a week of one hour of water therapy, often a little more in one session, and I’m slightly less tired now. This reduction in my exercise means I must limit my food intake, however—especially simple carbs—or I gain weight daily. Not that everyone doesn’t have to do that, but for people who have little choice but to sit a lot, the danger is imminent. I don’t want to trade fatigue for diabetes or a heart attack.
Having cut back on exercise a little, I’m less dependent on resting and can get by with lying down just once an afternoon (if I can fit it in). When polio, MS, cystic fibrosis, or chronic fatigue folks overdo it for some time, it’s common for us to not get full strength back. Management of energy output is really important and not much fun. I feel I lost a little strength in the last five or ten years, but am now stable.
And then there’s Richard. We have some separate interests and are both pretty independent, but we agree on a lot and have similar, goofy senses of humor and a deep emotional bond. We worked through the child-bearing question early in our relationship, given that I was in my mid-forties when we met, and by the time we married I was approaching menopause, anyway.
Now we have been together for twenty-five years, and married for twenty. It has not been easy all the time, for either of us. I had been unmarried for eighteen years when I met Richard, and he was eleven years younger and had never lived with a woman. Our independence led us to some arguments, but also, more positively, to consenting that we each do what we wanted or needed to do much of the time.
My regret for him is that post-polio fatigue came much earlier than I expected—in my early fifties. Although we discussed what might happen as I aged before we married, neither of us thought that I would lose the ability to walk as far as I used to before I was in my seventies or later.
I’m sorry that my younger husband has had to share this disappointment with me. I know it scares him sometimes, especially when I’m in pain or cranky over fatigue or loss of function, whether it’s temporary or something that threatens to be ongoing. This upsets me too—that he has fear or trepidation about my future condition—but I try to keep the perspective that it’s a package deal. We have taken care of each other in different ways for over two decades now: I handle or manage much of the physicality of our life, and he provides nearly all the income and does do chores as well. I anticipate that there will be a good twenty years in front of us.
Aging is crummy for everyone at some point. He may get Alzheimer’s. (We joke that if he does, I’ll die first and he’ll be alone, but he’ll forget me anyhow.) I also think women deal with aging a little better than men. It may be in women’s DNA to expect difficulty and plan for it, or perhaps it’s a learned skill.
But we have a good life. Our relationship is normal and healthy, when I look around at what’s going on with others. We’ve been to counseling to work out difficulties, most of which have had more to do with concepts we grew up with than my being handicapped, though that has sometimes been a factor. No surprise, he’s got his “stuff,” too, and I’ve come to think that almost everyone has some handicap or another.
Luckily, Richard is a techno guy, not an outdoorsman. As long as he has a computer, an iPhone, a TV, and a stereo, he’s happy. And there are many activities we can share: We enjoy swimming together in our pool. We make love as much as any other long-married couple I know (or so I assume!). We love to go to movies, concerts, occasional stage shows, and dinner with friends, and to have them over when I have the energy to put together a party, or a little meal for our best buddies.
We travel as much as we can now, too, partly because we see that the older I get, the more difficult it will be for me, and probably later on the same will be true for him. I’ve been using wheelchairs in airports for most of our relationship, but in some “walking cities” I find I usually need an electric scooter. I just purchased a small collapsible battery-powered travel tricycle, and that has broadened my horizons, but it’s likely that someday there will be places I cannot visit. Amsterdam is particularly difficult for handicapped people; the transportation is awful. I will never see Positano, the beautiful Italian seaside cliff city with its thousands of steps. But will you go there before you die? Perhaps not.
The other reason we are traveling now instead of later is that Richard’s parents planned to travel after his dad retired in his seventies, but he soon began having back trouble, which made it difficult for him to sit on airplanes for more than an hour. So saying “We’ll do that when we retire,” began to sound unrealistic.
Given that we both love to stay home, we will probably really enjoy that when neither of us are working. There is a great deal of natural beauty and culture in the San Francisco Bay Area, and we’ll never run out of things to do and see here. But we’re not yet done gadding about.
So for anyone who wonders how it is to live with or be married to a handicapped person, and is it not awfully hard, or could you do it, or is it worth it?—all I can say is that nearly everyone discovers the answer to those questions eventually. You or the person you choose as a spouse will one day have physical limitations (unless death comes early in a sudden tragedy, so let’s hope you do get old and creaky), and there is always something bigger and more beautiful in our lives than our difficulties. Often, that something is love for at least one other person.
Love may not conquer all. But respect, affection, and humor go a long way toward making things right, no matter one’s physical challenges.
On a rented scooter at Yosemite.
40
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chop wood, carry water, stir the oatmeal
The title of this chapter is a paraphrase from Ram Dass’s book Be Here Now. It refers to minding what’s in front of you and just keeping on with daily tasks and accepting them in a peaceful manner. I couldn’t find the oatmeal part when I perused the book again recently, so maybe someone else said that. Stirring the oatmeal, in any case, can be a meditation. These things we do are sacred, the rituals of existence, if we can be present to them—if we can just be here now with a focused mind.
I’m seventy as I write this. I’m a little chubby but definitely not obese. I have never inhaled tobacco other than a couple cigarettes in high school, once or twice (I found it quite painful). I have exercised fairly regularly most of my life. Aside from childhood illnesses, the breast cancer bout thirteen years ago, occasional colds or flu, a couple of cases of pneumonia, and my shingles debacle, I have had no major health risks or organ issues. I’m mostly healthy.
But the stuff I go through with regard to my structure—the tendon, muscle, and bone effects rendered by polio, in tandem with spots of arthritis—has me walking and sometimes feeling like I am ten years older than I am. It’s not constant, but it is frequent. I still accomplish more than many normies do in one day, but it’s in spite of a lot of challenges.
It takes me longer than many people to get things done if walking or standing is involved. I’m perpetually late, partly due to all the stuff I have to do to get my body going for the day and partly from my mom demonstrating, unrelentingly, how to be tardy—my former shrink said it is in some people’s neurological makeup, so maybe I’m slightly off the hook. I still chide myself, though, because I once attended a four-day conference with about two hundred polio survivors, and most of them did not seem to have the chronically late paradigm in their lives, even though some of the women were impeccably groomed. I think I stay up later than most older people and try to jam too much i
nto too short a day. Oh well.
To give you a taste of what my daily life is like, let’s talk about my routine.
When I go to bed, I take 200 mg of Neurontin (Gabapentin), officially a nerve drug given to epileptics to help prevent seizures—but for me, it’s partly for pain, partly to ward off muscle cramps or spasms; red yeast rice, for lowering cholesterol; melatonin, to help me stay asleep; and calcium, because I already have osteopenia moving toward osteoporosis (very common in polio bones; they don’t pound the earth as hard as other human legs, and pounding makes bones stronger).
I occasionally awaken to sharp, stabbing pain in one place or another. It’s usually the tendon in the top of my strong foot. Sometimes I get a cramp in that foot or leg while asleep. Massaging the calf or the arch until my strong foot no longer looks all crabbed up like it’s the crippled one has always worked so far. Lately this problem has become rare, due to my perseverance in exercising and strengthening my foot tendons.
The other wake-up calls are aches in one of my hips, my low back, my shoulder, or arthritis in my elbows or thumbs. It is hard for me to get comfortable in any position because, on my right side, the most comfortable position, my left leg is too heavy on top of my polio leg. I’ve tried pillows but they always seem to be the wrong size, fail to stay in place, or make me too hot. I have a mini-pillow that I put between my knees; it doesn’t stay in place, of course, but it helps me get to sleep and I wake up with less or no knee pain. It’s hard for me to roll over fully from one side to the other. Usually I sit up, turn, and lie down again. Conversely, sitting up sometimes wakes me up, and then I have difficulty getting back to sleep.
If it’s not the pain that wakes me, it’s the bathroom run a lot of older folks make in the middle of the night. We keep our bedroom virtually pitch black, since almost any light awakens me, so I have to wake up sufficiently so that I don’t fall on my way, or slam my feet into a misplaced shoe or malevolent furniture, especially since I “list” from side to side. So, around 5:00 a.m., I stand up in the dark and wait a few seconds before I take off. Falling in the daytime is bad enough; falling in the dark is dangerous. Having a drop foot and no brace in the middle of the night also means that I’m safer if I do a Frankenstein walk—feet wide apart, arms out for balance—until I am more awake. I always hope Richard doesn’t wake and see me as it’s particularly unattractive, Bride of Frankenstein notwithstanding.
Sometimes I cannot get back to sleep afterward, and have to swallow some Chinese herbs, or, very rarely, something stronger, half or one-third of an Ambien. It’s especially important that I get enough sleep, because when I’m tired, I am at higher risk for tripping, slipping, and falling, and I’m more prone to pain or having weak or inflexible parts. If I’m annoyed by all of that, I can also be bitchy. (Moi?! Oui.) Just like other tired people, but probably with more self-blame and wishing I were not handicapped.
Hopefully after seven hours of sleep, I awaken to a good morning. Some days I have very little difficulty walking; some days my leg and back are so weak that I have to hold on to furniture, counters, or walls to get from room to room, referred to as “traveling” by physical therapists, and not considered a good practice. I often need a cane for support if I’m having a weak day.
Every morning, I spend a few minutes sitting on a rug with our two cats, Leila and Lucy, and then I stay down there (it’s a big deal to get up from the floor, so I don’t get down to it more than once or twice a day) and do some physical therapy, core strengthening, and yoga for about fifteen minutes. A person who does not have a stand-up routine worked out after sitting on a rug may have difficulty getting to a telephone or chair after a fall, so I intend to keep doing floor exercises as long as possible.
After this, I have a normal day for a while. I am a black tea fiend, so I have to have that, and it does get my energy up (a good excuse for a habit beloved by those of us with British blood or cultural inclinations). I eat a high-protein breakfast, often an egg and some leftover sautéed veggies or some plain yogurt with berries and nuts. I never skip breakfast, because I have to take my supplements, a tiny amount of generic Mobic, plus Allegra for my tinnitus, and I can’t take this stuff on an empty stomach.
Next, if I’m going to do my pool workout in the morning, there are the sunscreen and suit-up routines. I take a towel, maybe the pool jackets and a robe, plus my cap, goggles, ear plugs, a heavy clock (that the wind cannot blow over) with secondhand for timing my exercises, waterproof ball cap, sunglasses to ward off cataracts and macular degeneration, water shoes, maybe ankle weights, phone, and some other accoutrements. I practically need a Sherpa—the stuff is heavy—but I would never make two trips.
Before I get in the pool, I usually do at least a half hour of gardening. Next is sweeping leaves off the pool cover. We have an electric control for the pool cover; it’s operated by holding a key, which taxes my funky arthritic thumbs, but it’s necessary. Then the pool sweep has to be fished out of the pool.
Now I can finally get in the water! All this, from suiting up to entry, takes maybe fifteen minutes (plus the time spent gardening).
I do eight minutes of walking in the shallow end, then forty minutes spent in kicks, arm exercises with paddles, leg and arm stretches, yoga moves and isometric strengthening, squats, jumping, and sideways walking. Then, I take a noodle float down to the deep end, where I do various kicks and leg lifts for ten minutes. After all this, I do eight minutes of swimming. Then one last leg stretch and I’m done, an hour later. Some days I do abbreviated or longer sets, but include all of the above in proportion to the time I have available. And of course, after I swim, I put the sweep back in the pool and close the cover.
As to the gardening, we have a mow-and-blow guy who works here about three hours a month, and annual tree pruners, but otherwise I do most of the outdoor maintenance on our one-third acre—trimming, weeding, pruning the roses and shrubs, planting or harvesting my few veggies and herbs, feeding the roses and citrus, all that stuff. Richard feels about gardening as I feel about root canals, so I am looking to lower-maintenance replacement plants as things die off, and eventually hiring more help.
We’ve almost come to The Putting On of the Shoes. This is a big deal. I cannot throw on a pair of flats or sandals or any other slip-on shoe and do a quick trip to the store or anyplace else— never could and never will.
First off, as you may remember, I wear two drastically different sizes. Please pardon me if part of this section is a duplication, but it’s a huge issue in my life. Not only are my feet four and one-half sizes apart, my polio foot is a seven-year-old girl’s size and my other foot is in the women’s range. The only way I can get shoes that match, even roughly, is to buy in the youth range—already a narrow selection, and made even narrower by my requirements (basically, a supportive Mary Jane with a strap, or an Oxford, a loafer, or, infrequently, a boot).
Depending on which shoes I’m wearing, I might first put a silicon bunion shield on the big toe of my polio foot. I pull on a knee-high stocking over that, and then I don my knee-ankle orthotic (AFO), the minimal brace that supports my ankle and my drop foot so I am less at risk of catching my toe on things. Another knee-high over the brace keeps it in place; otherwise it slaps up and down annoyingly with each step, and can cause a callus to form. I can only wear sandals if they have lots of straps, especially around the ankle. They aren’t really safe for daily wear so I only wear them around a pool. Sometimes people suggest that I not wear “those hot stockings,” but there’s no choice if I want to wear my orthotic brace and be safe.
I also wear a silicon heel cup in the polio shoe because, for some reason no one can explain, that foot has started sliding from side to side in shoes. It may be because my ankle fusion is weakening and the ankle is starting to pronate a bit. In my left shoe, I place a custom-made arch support which has a heel cup to keep that foot from sliding side to side. The arch support assists the fallen arch and pronation issues I’ve had in my strong foot. Sometimes I need
to wrap my strong foot with a little lightweight Coban tape if I’m having pain in that poor pesky tendon.
Now I can actually put my shoes on. But first, getting my foot into a pair of pants: I can’t point my toes down on my polio foot, so I carefully wrangle my foot and leg down through the pant leg. Then, on go the shoes.
This whole shoe-donning process takes about five minutes. (I know, sounds minimal, but isn’t the time to put on shoes usually seconds?) I do this at least once a day, often two or three times—it’s not comfortable to wear the orthotic when I’m resting—and you might think I’d be used to it all by now, but the process always feels like a bother, especially if I’m late for an appointment.
Sometimes I put the whole set of gear on and take a few steps and something is painfully wrong, so I have to take it all off and start over. That seems to predictably happen on days when I am running late. I often swear prolifically and creatively on those occasions and damn the freaking polio virus. Again.
Sometimes I’m too tired after the pool and shower to stand up and fix a meal, though I’m supposed to do this to recharge, so I lie down and read for a while and then am ready to get going again.
When I’ve done temp work for another accountant or a little bookkeeping, I have put in from three to six hours of work daily and then had to stop. It’s become too hard on my back and lower-body tendons to sit for longer than that, especially when I add in the commute. I have only “done tax season” for at most three months a year recently, and have decided that now that I’m seventy, I’m going to quit. At home, I sometimes set a timer so I’m reminded to stand up for a minute. Both prolonged sitting and standing are really hell for me—something neither my mom nor I knew when we used to talk about which professions would allow me to sit all day. Getting up and moving around a little is even more essential for me than it is for normies because of the imbalance I have in my back.
Not a Poster Child Page 28