Living with diminishing physical ability means losing some independence, but it doesn’t have to mean less adventure
Independence. It is unique to the human experience. People fight for it. Toddlers to teens demand it. It is the way we live. So when a debilitating disease threatens to take away the thing we cherish the most — our independence — most of us channel our inner “Rocky” and refuse to go down without a fight.
Muscular dystrophy chips away at our physical abilities sometimes so slowly that we don’t even know what we were physically capable of until it’s gone. This can be a challenge to both our mental and emotional stability. We may find ourselves distressed, despondent and dependent on any available helping hand.
As this disease ravages our muscular skeleton, we strive to know our own limitations, and this uncertainty can lead to fear and anxiety. But an inner desire for independence compels us to test what is physically possible.
Sometimes in that struggle, we find ourselves at odds with what is “reasonable.” The fight to be independent often outweighs sound judgment, and we wind up in desperate need of help or, worse, hurt by our own actions.
But how can we know unless we try? And try we must.
Having been diagnosed with limb-girdle muscular dystrophy (LGMD) almost 30 years ago, I have long since reconciled myself with a slower pace of existence. I have learned to enjoy my life from the seated position via a power chair. But believe me, it was not without a lot of falling, crying and attempting of the inadvisable.
Off the beaten path
In fact, I continue to test the boundaries of my limitations.
At least that’s what I was thinking the day I decided to take a Lewis-and-Clark-style expedition into the pine forest that backs two-thirds of an acre pond on our property.
The other third is a well-traveled, rocky, dirt trail that is my personal, all-access backstage path to enjoying the wild outdoors on my own. There are perils: a snake here, a pothole there and plenty of insects. But for the most part, I stay safe by traveling with a pack of protective dogs, taking scenic photographs as I go.
Eventually, though, even that path had become mundane; I was ready for a new conquest, to explore new worlds. In hindsight, I realize that a power chair has its limitations, but one cloudless, sunny morning with a trailblazing spirit and a side of recklessness, I rolled through the dried spillway and into the beckoning unknown.
Perhaps my expectation of the capabilities of my mode of transportation was a bit too high. Or maybe my desire for a new adventure had gotten the better of my common sense. But it wasn’t long before my enthusiasm turned into alarm.
The terra firma gave way to pine-needle-covered quicksand. Perhaps if I were a gardener I would have recognized that the faux dense surface concealed moist, mushy mulch.
My wheels began to lose traction. I found myself sliding sideways toward the pond. When I started to tip, I realized I’d reached the pinnacle of my journey. To keep my balance and halt my descent, I wrapped one arm around a fortuitously positioned tree and anchored a foot into the soggy ground.
I fought the forest, and, that day, the forest won. It was time for a lifeline. I decided to phone a friend.
Independence takes a hit
There are still times I use my cane inside the house. But that doesn’t come without constant anxiety about falling.
Yet, it’s the simple repetitive things that can turn disastrous. Recently, while standing in an effort to transfer myself from my power chair to the bed, I wobbled and fell face-first onto the bed. Even though I was able to slide back into the chair for a re-do, I was bent in half too far from the bed to raise the upper portion of my body. So my arms dangled uselessly.
Thankfully, after several attempts, I was able to monkey-swing one arm backward and clumsily turn the power chair on. Once I had the green light, I gingerly moved the chair forward — close enough to the bed to push myself upright, but not so close that I’d crush my legs against the bed frame. In the end, I navigated that near-disaster but added one more caution-light to my list of fears and anxieties in the process.
However, playing it safe doesn’t ensure total safety, either. I’ve lost my grip on the ride up in my lift chair several times, landing facedown. Fortunately, my teeth are still intact.
Need another example? We all go to the bathroom, but my days of going it alone in public restrooms are over. It happened quite unexpectedly. After a pleasant meal with my daughter, Tiffany, at a popular restaurant, we made a pit stop.
In separate stalls, we went about our business. In my attempt to do my usual bottoms-up, turn-around extraction from the toilet seat, my arms refused to cooperate. I panicked. I didn’t have the oomph to get up, and I didn’t fancy a facial from an automatic-flush toilet.
Stuck in this ridiculous body position, unlocking the door for help was out of the question. Luckily, after one “yelp,” Tiffany crawled under the stall divider and had me in the upright position with pants on in less than 60 seconds.
It is a sobering reality to accept that even basic functions associated with personal independence are now off your “can-do” list. Acceptance does not come easy. To see oneself deteriorating is nasty business, and mind over body only goes so far. But I refuse to give in to my fear and anxiety.
So I strike a balance. When I feel adventuresome, I follow my own contingency plan: First, carry a cellphone on my person at all times. Second, retain a willing and able caregiver, friend or neighbor to be on standby. And third, be ready to suffer the possible consequences of my bravado with humility.
Equipped with this plan, one fact prevails: I will never know what I can do until I try. And at this stage of my disease, when it comes to independence, I’ll take what I can get.
Kristal Hardin, 56, is a freelance writer living in De Queen, Ark. She stays as active as her mind, body and power chair permit, and then some.
Editor's note: To read more personal accounts about living with muscle disease, be sure to check out MDA’s Transitions Center blogs and the Quest archives. Or share your own story with us and email Quest at firstname.lastname@example.org.