“We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
― T.S. Eliot,
James wrote his third LAL essay in November. This yearly assignment (given by Mrs. Evans his advanced composition teacher) is a letter to the author of a favorite book describing how the book effected his life. This letter is to John Gunther the author of Death, Be Not Proud written in 1949 by a father whose son died of a brain tumor.
Dear Mr. Gunther,
Last winter, my teacher assigned Death, Be Not Proud for my book report. Given my usual reluctance to work during school breaks, I should have needed significant reminders to read the book. I became immersed, however, in your memoir. I read throughout the day, including while walking in my neighborhood. I laughed, cried, and exclaimed in frustration, but then I closed the last page and felt the void fill with stories of my own life. I outlined my own story and attempted to organize the various perspectives of my progress to adulthood. My struggle to complete this task reinforced my appreciation of your work.
My first thoughts while reading the memoir consisted of the parallels I drew between my life and Johnny’s life. You see, I, too, suffer from brain dysfunction, mine with unknown cause and no known cure. I, too, have endured multitudes of treatments with various levels of success and costs. I, too, feel hopelessness when I ponder my condition. These similarities came easily, but the deeper comparisons required more insight.
I evaluated Johnny’s response and my response to challenges. Although I admired Johnny, mostly because he remained kind and respectful to others, I found myself lacking compassion for my family and teachers. Until I read your book, Mr. Gunther, I lacked the opportunity to discuss struggles with a survivor – with someone who had earned the gift of hindsight. My available comparisons might be older than I am and therefore seem a reasonable example, but they continue in their struggle against their own challenges so they lack hindsight. In addition, their challenges are so similar to my own that any slight differences in our circumstances manifest as glaring excuses for our differing perspectives. But when I compare myself to your son Johnny, I cannot hide behind excuses. The way he lived his life provides a clear comparison that differs enough from my circumstances that I must admit my faults.
My brain dysfunction, autism, claims the life of the living for an entire life span. My diagnosis as a toddler condemned my future, but, unlike a tumor, autism carries a life sentence instead of fatality. Because I could not communicate for fourteen years, I lived as a prisoner in a laboratory and was unable to demonstrate my abilities or explain the effects of the various scientific studies. Often, even now, I use my accumulated frustration as an excuse for my current attitude and behaviors, despite the progress and freedoms I now enjoy.
Somehow, while studying history and sociology, I missed the connections provided by previously enslaved and imprisoned Americans. How many thousands of people did the Civil War free from servitude? From what I recollect, those previously enslaved people became the neighbors of their masters. How many convicts earn their release from prison only to return to the very society that imprisoned them? If I read a recounting or witnessed these freed people become bitter I would judge them for having thrown away their opportunities. Still, I usually failed to draw connections with my own bitterness.
Until I read Johnny’s story – your story.
For once, through what you wrote, I identified my own struggles inside the person I aspired to be like.
While reading, I compared my drive for an education to Johnny’s. At first, only the similarities registered in my thoughts, but then the devastating truth dawned on me: Johnny’s tumor kept him from attending school, but he nevertheless continued his education and fought to earn his diploma from Deerfield Academy. With your help, he broke through the barricades placed before him. Of course, at times Johnny became frustrated, annoyed, and even angry at his limitations. But somehow these emotions motivated him to persevere.
I, however, turn to self-pity and allow my emotions to capsize any lifeboats sent to rescue me. I strive to catch up with my peers, yet the pressure of success can overwhelm me and squelch any progress. Now, when I begin to feel this intense weight, I remind myself of Johnny and how he persevered. I realize that success today requires me to take a breath and remain calm – despite my challenges. I want people to remember me as a student who persisted despite hurdles, but I also want to be remembered as a friend and a person that people want to be around. Frustration and self-pity will not achieve that goal. Ever!
Once I digested any parallels and lessons I could find, I began to ponder the differences between Johnny and me. The most obvious difference revolves around our home lives. Despite the daunting rate of divorce in families with autism, my parents remain happily married, and they provide for me a family that I cannot rightfully complain about. In fact, I cannot imagine my life with divorced parents! I have three older siblings, two of whom married amazing wives, and all of them also build my support network. I cannot imagine facing my challenges without all of these family members.
How did Johnny manage in a separated family? How did you and your ex-wife manage to coordinate his treatments and your time together? I keep wondering if your family provides an exemplar for true love and devotion, or if you just represent a family who reunited because of necessity. I now wonder what my family would be like without my autism, but then I realize the futility of such ideas because they will never be a possibility for me.
All of us seem to be born into our circumstances. Yes, we strive to achieve what we can, but some things we must admit we cannot change. Despite some theories about autism, I do not believe my parents caused my autism, but I still wish I knew exactly what did. What’s more, I cannot help thinking about the possible changes that could have forever diverted our course. Do you still wonder about what Johnny’s life could have become? While reading your memoir, I certainly never blamed you or Johnny for the tumor, but I can imagine that you must have been plagued by guilt. I see such guilt in my own family and I realize how much my diagnosis must have hurt my parents.
Until reading your perspective of Johnny’s illness, I never truly thought about my life through my family’s perspective: how my parents felt, how it changed the life my siblings were accustomed to, and how they all suffered. Instead, I felt only my suffering and how my family affected me. Seeing Johnny’s struggle through his parents’ perspective – your perspective – gave me a view outside of my own self-centered life, and I now see my family as a family who stood together to create a buffer for me. I hope that you healed after losing Johnny because I know that I never want people to suffer again because of my challenges.
Thank you for writing Death, Be Not Proud so that I could finally realize another important aspect of my own story thus far. You provided a perspective that I would never have attained. I now cannot live without that perspective.