We all know the stereotypes of aging. Either you’re seen as decrepit with one foot in the grave, or you’re supposed to be a model for vital aging — Botoxed 85-year-old women do Pilates and elderly men complete Iron Man competitions and scale Mt. McKinley.
Those of us aging with neuromuscular diseases may find it ironic that anyone would purposely paralyze their muscles by using Botox to get rid of wrinkles. Our Iron Man competitions consist of going to the supermarket and lugging home sacks of groceries, and our Mt. McKinley is a 4-inch curb. For us, both the effects of aging and society’s stereotypes take on added significance.
For many years, I lived “with” my neuromuscular disease. As a child and young adult, I couldn’t do many of the physical things most others could, but I focused on those things I could do. Given enough time and effort, I felt I could do almost anything. I went to college, worked for 30 years as an occupational therapist and lived quite independently in my own home.
Something began to change, however, as I entered my 40s. At first, I managed to ignore the fact that it was harder to get around and I tired more easily. Then there came the day when it took every ounce of my strength just to get out of a familiar chair.
I was no longer living “with” my disability but living “in” it, just as one is said to be “in” a hurricane.
The concept of accelerated aging for people with chronic disabilities is well-documented by the medical community. It can make one’s body function and feel as if it were 25 years older than it is.
For me, things I used to do with some effort have become impossible. New aches, greater muscle weakness and even breast cancer have entered my life, along with graying hair, a waddling gait, difficulty with chairs and stairs, an AFO brace, and occasional use of a walking stick and scooter. I recognize that not only do I sometimes feel old, worn-out and tired, but people often treat me differently, re-enforcing all the negative stereotypes that surround both aging and disability.
Maybe it’s just plain independent stubbornness, but I refuse to let society’s expectations dictate my life. Yes, some of the stereotypes about old age actually have some truth, like “old age ain’t for sissies,” especially if one has a neuromuscular disease.
But I’m finding that some aspects of aging with a disability are positive — and it’s not just that “it’s better than the alternative.” Perhaps it’s all these years of coping with a disability that’s helping me to handle aging and find the good side of losses.
Greater compassion and empathy: Recently, when one of my neighbors helped her aging parents move into a nursing home, she found a compassionate sounding board in me. I was able to put some of her parents’ unspoken fears and feelings into words because I could relate to their declining health and grief over the loss of their independence.
No longer do I get impatient or think “there but for the grace of God” when I see elderly people slowly making their way across a parking lot or struggling to get change out of their purses with arthritic fingers. For now I am one with each of them.
Resiliency: I once heard a radio interview with Al Siebert, a psychologist and expert on resiliency. He said resilient thinking is consistently seen in “successful aging.” As I listened to him list the characteristics of resilient older people, I was amazed. It was as if he were talking about my own outlook on life. (To take a resiliency quiz go to www.resiliencycenter.com).
I really don’t think it’s my innate nature to be so resilient, but rather something that living with a disability has honed within me. As aging forces me to adjust, I’m grateful that calling on resilient coping skills is almost second nature.
An authentic self: One of the most freeing things about maturing is the realization that I’m more than my body, with all its physical differences. Like many teenagers and young adults, I was self-conscious, and being so obviously different made it worse. For years I tried to appear “normal” and would rarely talk about having a disability.
Then at age 33 I had to have an ileostomy (complete removal of my colon). In my 40s my muscles weakened to the point that I could no longer pretend I just “walked funny.” And at 60 I had a mastectomy because of breast cancer.
Though each stage was difficult, I found myself surrounded by love and caring from family, friends and support groups. It’s like Margery Williams says in “The Velveteen Rabbit”: “But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.” In a paradoxical way, the more I lose physically, the more whole, authentic and real I become.
Interconnectedness: As I age with my disability, I realize how interconnected my life is with the lives of others. This has made me acutely aware of my need to give back, and I’ve looked for ways to do this that are still within my capabilities.
Outliving expectations: Like many diagnosed with muscular dystrophy many years ago, I was told by doctors my future was uncertain. Even as a child I had a sense of “I can’t believe I made it this far.” Now in my 60s, reinforced by surviving can-cer, I find it incredible that I’m still around.
In many ways this is wonderfully freeing. I’m working on author Cynthia Heimel’s suggestion: “When in doubt, make a fool of yourself. There is a microscopically thin line between being brilliantly creative and acting like the most gigantic idiot on earth. So, what the hell, leap!”
Recognition of mortality: Though my parents never talked about it much, I’ve always had a sense of my own mortality. This awareness is perhaps the greatest gift of disability.
Whether one is dealing with practical issues like living wills or contemplating the age-old questions (Who am I? Why am I here? Am I loved? Have I loved well? Am I growing spiritually?), the recognition of one’s mortality deepens one’s life and makes it far richer. As Morrie Schwartz said in the book about his life with ALS, Tuesdays with Morrie: “Learn how to die and you learn how to live.”