I was a teacher of special needs students, and as such had cultivated and measured the physical, emotional and cognitive milestones of my students. I counseled patience and compassion to their loved ones. It was with great joy and celebration that each accomplishment was met, no matter how incremental or delayed that growth may have been. Their frustrations were understandable, and I understood and shared comfort with them as often as joy.
After thirty years of teaching, I had to resign due to MS symptoms. I could no longer remember my students’ names, or their learning styles, nor their schedules, nor my own. My symptoms were not physical in the way most people think of MS. While fatigue could weaken my gait and balance, I was not wheel-chair bound. I look fine physically. My symptoms are both cognitive and emotional. I take medications not to improve my gait, but to balance my anxiety and depression chemically. I have pain that is both physical and emotional, but the medications I take are focused on the emotional pain I feel in recognizing the losses I face. The physical pain limits my activities, but takes second place to the emotional pain that limits my interactions with extended family and friends.
I know that word retrieval difficulty is not reflective of intelligence, but rather of ineffective recall. I know short term memory loss is not reflective of intelligence, but is, rather, a physical function of brain structure and neuronal inefficiency. I know that fatigue is not reflective of a lack of motivation or effort, but instead exemplifies the major effort that some of us have to make in order to focus our attention on sequential tasks.
It was my sad, shared responsibility to help my parents through their declining years, and watch their downward trending back through developmental levels. To recognize their loss of word retrieval, of planning activities or meals, of remembering to pay bills on time, of following a conversation … to see their loss of handwriting, and then writing itself … the loss of independence that accompanies the inability to drive, or shop alone, or visit friends … the loss of friends … and eventually, the physical loss of muscle control. Each of these descents occurred in reverse order of how they had been gained, and each was painful for them and for others to acknowledge and explain.
I shared their losses compassionately, as I knew that my own would one day echo theirs. They passed away a few years before my own shortcomings were identified as multiple sclerosis. Their losses had been identified as Alzheimer’s and Parkinson’s. Nothing could be cured or restored. The diagnoses were simply an excuse for having no cure or restoration therapy. The person became a labeled folder on a doctor’s shelf.
And now the losses have begun again, here. The checkbook balance defies me; word retrieval issues humble me. My file of names and places is vacant. Housework is more than I can plan and execute effectively, let alone efficiently. My limited pension, impacted negatively by my ‘early’ thirty year retirement, excludes me from many of my extended family’s activities that would require not only discretionary money but energy, planning, traveling and participating in celebratory games, etc.
What I am still able to do – to write, both factually and creatively, and to quilt traditionally and artistically, and to love and enjoy quiet company and good humor … these are not seen by those who cannot find the time within their own life trials to know me as I am now.
I am blessed with a husband who has been at my side through our children’s childhoods, our parents’ elder years and then through my own diagnosis. It was always my intent to be by his side for whatever life might bring us to and through. Will I be a source of compassionate strength and understanding for him as he has always been for me? Will others give us room to age gracefully together without criticism of not being a part of their family vacation activities? Will we continue, together, to be greater than the sum of our individual parts, as we are now? Who will be there to compassionately accompany us in these coming, echoing years? I pray that we, together, will face it with dignity, with some modicum of independence, and always, with love.