Recently I received an email from a friend. She was writing to family and friends, with encouragement from her internist of many years, to address an elephant in the living room. She experienced progressive symptoms affecting her ability to walk months before being diagnosed with the rare, chronic, progressive, auto-immune disease CIDP, for which there is no cure. If the only USDA-approved treatment continues to manage her symptoms, she can hope to be among the 90% who can walk without aid, except during periods of regression.
A resilient woman who weathered Guillian Barre Syndrome as an adolescent, she has remained physically active, despite knee and ankle surgeries. Many who know her likely assigned her increasingly halting gait and occasional use of a cane, to the ravages of injury and age and would ask how her ankle was. You see, except for those she trusted most, she’d kept the new diagnosis under wraps. That’s her prerogative of course.
The internist, however, encouraged disclosure believing she will benefit from help and support from family and friends as she navigates the challenges and obstacles before her. None of us can make those disappear. We would, if we could. Like her, we have to accept the chronicity of CIDP. What we can do is rally around her, become her teammates. Encourage her to remain optimistic and to continue adjunct practices that improve her quality of life. Such a commitment of time and energy would be a challenge for all of us. Think about people who resolve to exercise regularly, then falter. Having someone hold us accountable improves the likelihood that we’ll stay the course.
We can, as now she’s given her permission, insist she use a cane or walker when safety or comfort dictate. I’m thinking we can also add artistic and creative flourishes to that cane and walker. Take “if life gives you lemons, make lemonade” to a new realm. Shall we knit bomb or decoupage a cane? Maybe both. Having a choice of canes has its advantages.
Writing that email was hard for my friend. Independent, not one to ask for help, yet quick to respond to the needs of others, she has never wanted to be defined by her physical limitations. She fears that CIDP with its chronicity and incurability could alter the way people think of her.
That’s what prompted me to write this blog. Would anyone of us like being defined by a single attribute? I think not. We’re all so much more than any single trait could suggest. Yet, like gender, race, and ethnicity, some limitations are so obvious that we’re apt to register the limitation as a primary attribute. That’s a disservice. When we define a person by disability, we’re being disrespectful.
In response to her fear, I emailed a list of all the qualities she possesses that make her who she is and assured her that those distinctions are more important than physical limitations. I also urged her to take names of any who appear only to see her limitations, promising to get up a posse and kick butt for her.
Honestly I cannot imagine anyone who knows this woman being anything but supportive, but you never know. I better get back to Tai Chi. Just in case my “services” are needed. I made a promise after all;-).
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