By Idelle Winer
Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.
—Leonard Cohen, “Anthem”
Remember the exaltation of discovering a new musician or poet? In July 2009, my husband Brian had that experience after watching a DVD of Leonard Cohen’s Live in London concert. Brian enjoyed a variety of music genres, ranging from rock music to Broadway musicals, but did not listen to Leonard Cohen. After viewing the DVD, however, Brian became Cohen’s biggest fan—he dubbed it the “religion of Lenny.” Brian even took the DVD to the ICU when he had his feeding tube placed in August 2009, discussing the meaning behind many of Cohen’s lyrics with the hospital’s rabbi and ICU nurses. Brian was hooked, listening religiously until the end of his life.
Brian remained in relatively good health in retirement until October 2008, when he developed breathing problems. He had a setback in late October when he collapsed from shortness of breath. Unfortunately, our daughter Leah had just walked in the front door when this event occurred. We rushed Brian to the hospital, where he remained in the ICU for almost 2 weeks. He was placed on a Bi-PAP machine to support his breathing.
Until June 2009, Brian did well at home. Although confined to a wheelchair and immobile for the most part, Brian could still speak, project his voice, and swallow food (he loved to eat!). He could go for short periods without use of the Bi-PAP, which made it easier for him to communicate and eat. However, due to a decline in his breathing, we had to decide whether Brian should undergo feeding tube placement. Brian did not want any invasive life-sustaining measures, but because he could still speak, he went ahead with the procedure.
Over the next 6 to 9 months, Brian lost his ability to speak clearly. Verbal exchanges that previously took seconds could consume half an hour, and speech required unprecedented effort, given his respiratory difficulties. I looked into a variety of assistive devices and microphones to help project his voice, but this proved unsuccessful because Brian could no longer enunciate, his voice was soft, and the Bi-PAP mask, which he now wore full-time, was incompatible with most microphones.
I recall a conversation in 2010 with Beth Barrett from the ALS Association, in which we discussed various topics, ranging from types of assistive devices to the decision of whether to undergo invasive, life-prolonging procedures. Beth explained that every ALS patient draws a “line in the sand” and defines what constitutes quality of life. In retrospect, the ability to talk and be understood was Brian’s line in the sand.
That brings me back to Leonard Cohen. Brian found joy, solace, and hope in the lyrics of many Cohen songs. As Rabbi Lynn Goldstein stated so eloquently in Brian’s eulogy:
Brian had a verse that he loved, from Leonard Cohen’s Ring the bells [“Anthem”]. He loved the chorus particularly, and quoted it often, especially when things were difficult. This song reminds us that even in the most difficult times, there is a crack and light will inevitably come in. In his last years, there was no way anyone could cure his illness. There was no way for him to return to the healthy individual he had been. But, Brian believed deeply that there was still light, that nothing was perfect, but he would do his very best with the hand dealt him, that he would look for the light, let it in, and enjoy living in that light with those he loved to the very best of his ability, with all his heart, with all his soul, and with all his might.
Brian passed away at home on the morning of August 24, 2010. He was 60 years old.
What challenges have your family faced with ALS? How have you coped? Please share your experiences in the comments section. Let’s continue the conversation.