Today, I am traveling so I thought this would be a good time to observe and think about my idiopathic peripheral neuropathy, about how it redefines and constricts my life. I am, as are each of you who lives with it, aware of peripheral neuropathy constantly but I try not to focus my conscious energy on it or be controlled by the ongoing, amorphous pain.
Getting dressed, I thought about how mindful I have to be doing ordinary tasks such as hooking my bra or pulling on my hose. I noticed that I usually wear dresses and jackets that do not require buttoning or zipping, tasks that I fumble through painfully. I reached down to pick up my shoe which stubbornly resisted my hand’s pull. When I looked down to see what was the obstruction, it was my unresponsive foot resting on top of the shoe. So, I mindfully moved my foot to get to the sandal. I only wear chacko sandals because they have cushioning rubber footbeds and light, flexible straps. I tease with my friends that the black ones are my formal ones for when Queen Elizabeth invites me to tea.
Dressed, I went into the kitchen to have a quick glass of orange juice before my ride to the airport arrived. I used both hands to take the orange juice from the refrigerator because my hands are untrustworthy. Spills have become an ordinary part of life. I took my morning pills out of the oversized spring-release pill pack that I use because manipulating small containers or unscrewing caps is so challenging. Drinking the juice, I notice how I think about bringing the cup to my lips, no more of those carefree days of multitasking while ingesting food or drink. That can lead to embarrassing encounters where my food flies onto another person’s plate. Eating has transformed into a mindful task. I have to think about using the cutlery and often find myself thankful for finger foods that don’t require manipulating a fork much less a fork and a knife. I’ve also broadened my definition of finger foods and have learned to ask for a steak knife to cut my vegetables. Cream soups taste just as good from a mug and take much less work. Elegance defers to function.
Walking out to the car, I watched carefully where I stepped. Long gone are carefree walks where I walk, talk and look around at the scenery. Walking is now a focused exercise of thinking where my feet are in space and watching the terrain for any surface changes that might throw me off balance or trip me if I don’t lift my foot high enough to compensate for them.
At the airport, I fumbled through my purse to get out my id and credit card to swipe through the automatic check-in kiosk. I observed that what takes me about four minutes was being done by others in one minute or less. Checked in, I gratefully sank into the wheelchair that took me to my gate because, although I can and do walk, I can no longer negotiate sudden starts and stops or wait in endless security lines. If I try to walk through screening, I can’t use my walking sticks and become quite unbalanced so the wheelchair is a sensible option. It was a difficult step to take but one that I see as preservative.
Now, I’m sitting on the plane typing this and acutely aware of how many errors I make because my fingers sometimes just go off on their own rather than following my brain’s lead as they used to do. I am far from the days when I typed seventy-five words a minute error free. I could do so much better if I could just tear off that outer layer of insensitive sandpaper that’s replaced my formerly exquisitely sensitive fingertips.
As we all do, I’ve adjusted to the limitations of the neuropathy. The part that is hardest for me and with which I still struggle are the intermittent, unheralded muscle spasms that attack with such force I’m left breathless and momentarily unable to communicate more than a scream through the pain. Philosophically, I think of them as my ongoing lessons in humility since they come without warning anytime, any place.Fortunately, they are short-lived but the ones that occur in public are not only terribly painful but also embarrassing. Suddenly, uncontrollably sliding under the table at dinnertwisting in pain or reaching for my glass of wine only to watch in horror as my hand inexplicably tosses the contents on my neighbor instead of gracefully bringing them to my mouth teaches me humility and pushes the envelope of my sense of humor.
I know that most of you reading this can account similar experiences. I just want to affirm the universality of our adjustments as we learn to live with this puzzling diagnosis that exhausts our nerves with overwhelming firings so that our appendages respond irrationally or not at all to our brains’ commands. Where before it commanded, my brain has succumbed to pleading—Just this once, feet, let’s get it right.
The best thing I can say about peripheral neuropathy is that it has increased my patience with myself and my vocabulary. Idiopathic—who knew that it basically means who knows?