Departments: Speak Up
Like most people with a neurologic condition, I have fought like hell to preserve my independence. Whatever was on the table for discussion, I resisted: giving up my car keys; trading my cane for my walker or my walker for my power chair; and accepting the fact that I needed men and women from my hospice and home health service to bathe me, help me get in and out of bed, or dress me.
At each step of the way, I was told to give up the fight, to buy into the idea that the men and women entering my life were there both to protect my safety and to help me preserve what energy I had to allow me to pursue whatever interested me—which is still independence, but of a different kind. It took me two years after my diagnosis with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease) in October 2011 to realize that the medical professionals were correct and that I needed to tell my ego to stand in the corner while I adapted to the new normal of ALS. I'm grateful finally to have learned that being bull-headed is neither the best nor the only way to plow forward in the face of this disease.
The news is filled with stories of folks like me who have overcome challenges and lived rich and full lives in the face of horrific diseases. In my case, I had the good fortune of having two novels published since my diagnosis. It feels good to inspire others. But what is missing from those stories is an acknowledgment of and thank you to the men and women who keep us standing tall.
I recently published an essay in Poets & Writers magazine in which I looked at my time with ALS from the perspective of an author. Among other things, I wrote of how I felt myself at the mercy of the men and women bathing what I described as my pathetic body. My favorite aide chastised me for looking at our time together only from the point of view of what I'd lost along the way and ignoring the humor I brought to our sessions, the smile I put on her face, the satisfaction she gets from knowing she's bettered my day. While she often sings and dances a few steps when she visits, that morning we talked about why she'd chosen her line of work, the pleasure she gets out of helping those in need rise above our suffering, and how rewarded she feels at the end of an exhausting day. Where does she find such compassion?
The same question can be asked of the woman with whom I spend the most time: my wife. How can she so gingerly clean up the crime scene when I wet the bed or soil my pants? How can she absorb my anger and frustration one minute, and then ask me if I'd like something to drink in a calm and respectful voice a moment after that?
A young man came to my house once—only once—to substitute for another aide. Afterward, not only did he send me a gift from a place he was visiting, but then, out of the blue, he showed up one night with dinner.
I am both awed and sustained by their grace. Those following me down the path of a degenerative condition such as ALS will be too. While we may feel cursed by our diseases, we are blessed that there is a community of men and women to help us get through them. I urge you to learn the lesson I have and to let them into your life. Fighting the idea that we need help only wastes energy we should be using to realize our dreams.