On Sunday evening I received a text from one of my former teaching colleagues. She asked me if I would come to her classroom and lead a small group.
Donna teaches second grade in the same room I did before my chronic illness forced me to retire. She and I had discussed the possibility of my volunteering regularly for her while at my retirement farewell a few months ago.
Because she is a master educator, Donna does not need my help. Instead, she is a kind and generous friend who knows how much teaching means to me. Working with students in the public schools has been my lifeblood. I have experienced transcendent joy by teaching children how to read, communicate in writing, understand numeric relationships, and solve interpersonal conflicts.
That was taken away from me with I was struck with erythromelalgia — a rare neurovascular disorder that causes intense burning and pain primarily in my legs and feet.
So when I heard from Donna on Sunday, gratitude and excitement washed over me. I would be able to visit my former workplace and catch up with colleagues I had known for years. I would probably see some of my former students and marvel in their maturity. Most importantly, I would be able to spend an hour or so teaching again.
However, my chronic illness is fickle. It flares up without warning, and it decided to make an appearance today. When I woke, my feet had turned bright red and my toes were nearly purple. My legs ached, and I could barely walk to the bathroom — much less get dressed, drive to school, and teach children.
So I canceled.
Donna understood and extended an open invitation to drop in whenever I feel able.
The worst part of chronic illness is the physical pain. Without the intense and incurable discomfort, there would be no illness. Symptoms attack every element of life. Standing, sitting, even resting in bed intensifies the suffering.
But a close second is the emotional pain of not being able.
Not able to go, to do, or to be. Not being able to make commitments. Not being able to accept my own body for stealing the life I loved and for preventing me from having a small taste of the joy that I craved today.
I have wrestled with depression and anxiety, and this profound inability exceeds more than both of those. Beyond self-pity, despondency, and acedia, this inability had made me know what it is to be lost.
Several years ago on my freshman orientation weekend in college, our dorm played games that included a relay race where you stand a baseball bat upright, place your head on the bat, and spin 5 or 10 times. Of course we all fell and were unable to find out way to tag our teammate.
This chronic illness has my head spinning. I have fallen, and I can’t get up.
Meanwhile, I hope make ends meet on disability income as I wait for the pain to recede enough to get to the bathroom while curled up in the fetal position crying due to the physical travail and my emotional undoing.
Maybe I will feel strong enough to volunteer with Donna’s students some other time, but I’m not counting on it.
My life is not a human interest story in which a community comes together to refurbish my house, introduce me to my favorite celebrity, or find a miraculous cure.
This is the real, uncomfortable, and uncertain day-to-day life of a person with chronic pain, with no hope of a cure and diminishing possibilities of meaningful vocational or social interaction.