This week’s featured book Worth reading is No Spring Chicken: Stories and Advice from a Wild Handicapper on Aging and Disability by Francine Falk-Allen. Here are a few excerpts from her book:
From the Introduction:
Some people with disabilities do not like to be referred to as “handicapped,” and I fully respect that. During the disability rights movement, the description “a person with a disability” became the preferred term. I have almost always used the term “handicapped” to describe myself, because it denotes being capable but needing an allowance for a less-than-normal condition. You do have to ask people with physical challenges what term they prefer. Also… I thought a “Wild Handicapper” sounded more fun and kind of amusing, like an adventurous, untamed bird, and “Wild Disabler”… well, it just didn’t have a ring to it. So, throughout No Spring Chicken, I refer to myself and the person in your life to whom the material I’m covering applies (perhaps it’s you!) as Wild Handicappers.
From My Mom Has Changed:
I was first inspired to write advice regarding how to be with a handicapped person several years ago, when I was talking with a woman acquaintance about aging and the difficulties of eventually becoming handicapped. She said, “I used to go to the mall with my mom every weekend. Now, since she has trouble walking, she doesn’t want to go anymore! I don’t know what we can do together.”
None of us is ever ready for that day when a parent ceases to be the rock of support or meticulous housekeeper or whatever they were before they hit That Point, which can come as late as ninety or as early as fifty. Dementia, of course, makes it more difficult to find things to do together, but even people with advanced Alzheimer’s enjoy simple activities like listening to music, especially pieces they loved in years past.
New Difficulties vs. Prior Conditions
It does make a difference whether a person has been disabled or handicapped for many years or whether it’s a new condition. It has been necessary for me to live with partial paralysis and weakness for seventy years and counting. Sometimes it really pisses me off that it is so freaking difficult, or that I have new weakness or more severe fatigue than I used to have, or that my step falters more than it used to. I don’t think of myself as elderly (though I am now seventy-three)—just as an older woman. Most friends in my age group are having a little more limitation these days too, but they can still walk a few miles at the least, or even go on a hike of several miles in the mountains, as well as being able to stand up at parties for an hour or so and chat.
That amount of standing and walking has never been in my ability quiver, and now there’s even less there. Naturally, this state is frustrating and disappointing. I imagine that the average healthy woman ten years older than I am feels about the same. But the difference between us is, I’ve had plenty of time to get used to it, and I do ultimately accept my condition, though it’s hard to accept the new problems as they show up.
I have known many people who have been left with a new and difficult limitation, temporarily or permanently, after an injury or surgery—I’m talking about breaking a leg and being on crutches for months, or having a leg amputated, or developing MS (multiple sclerosis), or going through treatment for a life-threatening cancer or a seriously debilitating stroke. These sudden problems are perhaps harder to deal with, psychologically and emotionally, as a previously healthy, able-bodied adult, than they are for folks like me, who have had years of experience with adapting. One day you’re hiking the Sierras or dancing salsa, and the next you’re lying in a hospital bed, being told you’ll never again be able do something you love—ski, bike, walk, whatever. It’s a life-changing disappointment no one is equipped to face.
Incidentally, I’m not a big believer in “you’ll never do [insert activity] again,” though sometimes this is the truth and must be accepted. I strongly recommend getting a second opinion. I also believe that it’s wise to follow recommendations in your rehabilitation. Being positive but realistic and, most of all, determined and disciplined can reap unexpected rewards. Miracles do happen (and doctors can only guess at outcomes).
When I learn that I am going to lose activities that are dear to my heart, it motivates me to find other things I can do. But this is not true for everyone, unfortunately. Some people are so depressed by a difficult change that they are unable to emerge from their negative emotions. If this is the case for your loved one, a lot of patience and compassion will be necessary, along with some special diversions, and maybe even some mood-altering drugs.
For those who suffer an injury or illness that takes away a big part of their lives, there has to be a grieving process. Please allow for this, whether you are the Wild Handicapper or his or her caregiver, relative, friend, or lover. The healing process can be quite slow, even for a person who does all the right things and has a basically sunny disposition, and especially for someone who’s fifty, sixty, or older.
Watch How You Say It
When your Wild Handicapper is suffering, it is not helpful to dole out aphorisms such as, “When God takes something away, He gives you something else”; “When one door closes, another opens”; or “Be grateful for what you have!” For a person who’s been dealing with physical limitation, those kinds of statements are irritating. After all, it’s hard for a person who is not disabled to imagine how much of a daily grind it is, how wearing on one’s energy, to have to constantly find solutions for worsening problems, compensate for things that can no longer be accomplished, or long for places that can no longer be visited as easily. Someone in this position has to do his or her own self-encouraging all the time, so the last thing needed is someone saying, “Think positive!” If the Handicapper comes up with the platitudes on their own, however, trying to summon up optimism and make it through these new challenges, certainly encourage that, at least at the beginning (and keep in mind that the “beginning” may last longer than you or the Handicapper thinks it should). A self-generated positive attitude is different than someone else repeatedly telling a person to look on the bright side. The helper’s quiet (or not so quiet) confidence alone is the most helpful outside source of encouragement.
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