The Pain When an Aphasiac Mourns For His Son
by Don Weinstein on June 20, 2012
From the time I had my stroke in February 2002, an embolic cerebrovascular accident with severe aphasia, I struggled for my freedom, to be seen, heard and listened to by businesses, governmental agencies and religious institutions. In the main they dealt with me as invisible, voiceless, and politically isolated. In the continuum of raw passions I experienced a gamut of emotions that desecrated me, my spirit and my memories, when I wasn’t able to pray for my son, Robert, in a respectful manner because of my aphasia and the time limitations placed on the religious services; it seems sacrilegious.
The most impious action was caused by the nicest people because they misunderstood aphasia and heartbreak felt by aphasiacs when they couldn’t pray for their love ones. These were not the Fools of Chelm, written by Isaac Bashevis Singer, a Nobel Prize-winning Jewish writer in the Yiddish language; on the contrary their leaders were competent and normal; and it occurred this past April 16. That day I wanted to pray, to memorialized and recall my son Robert, his legacy to me, and the beauty when he was a little boy, the times we played basketball, baseball, and football. We went bike riding. He was a proficient skier. My son was sweet, sensitive, and bright. He was a good researcher, enjoyed books by David Baldacci and was knowledgeable about politics. The last few years we had breakfast together at least once a week when possible, we had a smer of vegetable cream cheese, an onion and a tomato on a whole wheat bagel. We were political junkies, Obama, the economy, Afghanistan, the military-industrial complex and the government’s role in the drug traffic during the Reagan administration. He joined me in his teen years for the Jewish High Holidays of Rosh Hashanah and Yom Kippur. Rob was fiercely loyal. But he was not able to protect himself from life and people.
He is my son and I miss him intensely every day so I commemorate his yahrzeit, the Jewish anniversary of his death, by reciting the mourner’s version of the Kaddish prayer in a conservative Synagogue or shul. The truth be told I can’t pray in the shul at this time because my aphasia holds me back as does my Hebrew. But with time I know that I could read again the Hebrew words; it will take time but it is doable. But the speed by which the other congregants say the prayer makes it impossible for me to say each word distinctly so it has meaning for me. Although my religion allows me to recite the mourner’s version of the Kaddish prayer at home at my own pace it is preferable for me to join in the minyan, a quorum of ten Jewish adults required for certain religious obligations including mourner’s version of the Kaddish prayer. I know that Rob would want that respect for him and me so it is essential for me to say the mourner’s prayer each word distinctly at my own pace. I could work hard on my Hebrew but congregants would have to slow down immensely; isn’t it sacrilegious if they don’t do this?
The spirit and soul of an aphasiac is tried every day by business, agencies and religions. What are the other substantive issues that aphasiacs hardly talk about but means a lot to them?