What Sarah Said

On the middle and ring finger of my right hand I wear two of my late father Charles’ rings (his gold 25-year Metro Bus service ring and on the other his wedding band). They serve as both a reminder of who he was as well as a tribute to one of the greatest men I’ve ever known.

Everybody loved my Dad. He was funny, kind, and humble. He was also a very generous person, often giving to a wide variety of charities and nonprofits such as the Disabled Veterans of America and the Martin Luther King Jr. Museum. He also played the daily numbers and when he hit, he would always share some of his bounty with me, my wife Suzy, and even his granddaughters Sarah and Lillie.

But what I remember most about my Dad was the love he gave me when I was struggling with my mental health right from the start when I had to be brought home from Flint, Michigan after my first psychotic episode through the next seven years of my active addiction (which included subsequent hospitalizations). 

My Dad would visit me virtually every day after his long shift of driving the bus. I can still remember his smile when he would enter through the doors of the locked wards that I was on. I still, to this day, cannot quite comprehend how he was able to muster a smile when I was in such dire circumstances.

But my Dad was human. When his mother died when I was eight years old things began to change. He began to drink more. His drinking progressed and he and my Mom would argue. I recall being in my room alone (I’m an only child) and hearing them yelling at each other. It was incredibly traumatizing. A study conducted by the Kaiser Permanente Health System identified what are known as ACEs (Adverse Childhood Experiences). Adverse Childhood Experiences are traumatic events that occur during childhood (0-17). They have lasting, negative effects on health, well-being, and opportunity.

The initial CDC study identifies 10 ACEs— which were focused mainly on adversities in the home — and divides them into 3 categories as follows:

  1. Abuse
    1. Physical
    2. Emotional
    3. Sexual
  2. Neglect
    1. Physical
    2. Emotional
  3. Household Dysfunction
    1. Mental Illness
    2. Incarcerated Relative
    3. Mother Treated Violently
    4. Substance Abuse
    5. Divorce

And while I did not experience most of these criteria, I certainly experienced the effects of my father’s substance abuse. Also, I was in foster care from birth-6 months (which could be another attributing factor in my life).

But things changed in 1985 when my Mom was diagnosed with breast cancer. While I was still using and dealing with my own issues, my Dad stopped drinking cold turkey. I believe he did so because he realized that he had to own up to the responsibility of taking care of two people who he loved.

Like I said when I delivered my Dad’s eulogy, “He wasn’t perfect, but he raised the bar high.”

My Mom died in 1996 due to cardiorespiratory failure. It was another major loss for my Dad. He and my Mom were extremely close and in the later years of her life he was somewhat of a caretaker for her, driving her to her dialysis treatments.

As a result, with my Dad living alone in a four-bedroom house, he invited me, Suzy and Sarah, who was 11 months old at the time, to live with him. Lillie was born two years later.

To say that my Dad was a great father-in-law and granddad is an understatement. Suzy adored him and the girls were the apple of his eye. I have so many great memories of the times we spent together over the years.

But eventually as he got into his 80s, his health began to fail and he developed a condition called progressive supranuclear palsy which is an uncommon brain disorder that causes serious problems with walking, balance and eye movements, and later with swallowing. American singer Linda Ronstadt lives with this disease.

Those had to be the most stressful years of my life. I was designated my Dad’s Power of Attorney and Health Care Proxy. Suzy and I would drive him to his medical appointments. He also suffered from glaucoma and was losing his vision. Eventually, we all agreed to have him move into assisted living. He was lucid at this point and was amenable to this decision. But his stay there was short-lived due to several falls he had. It was at this point that I had to place him in a skilled nursing facility. It was close to my workplace, which allowed me to make regular visits. Eventually, his health began a swift decline, He lost his vision and was unable to walk. 

During the last several months of his life, I would play my Dad classic jazz from YouTube on my phone. My Dad was a huge jazz lover so I was trying to bring him comfort in the only way I knew how. 

On September 10, 2016 I was on a 50-mile charity bike ride. When I finished I had a voicemail from Mike, one of the nurses at the skilled nursing facility. He said that my Dad had taken a turn for the worse and that I needed to get there as soon as possible. I went home, changed quickly, and went to see my Dad. When I walked into his room he was on oxygen, with tubes in his nose.I lost it and started crying. I knew that this was it.

I had called his sister, my Aunt Helen and my cousin Carolyn. They both came right away. Suzy was there too. We stayed as long as we could into the evening. I was so worried that he would die while we weren’t there. But he held on through the next day, Sunday, and into Monday.

We arrived that morning, Aunt Helen, Carolyn, Suzy and me. I continued to play music for him, placing my phone right by his ear. I felt that this could reach him. I sat at his bedside and watched his chest rise and fall with each breath. It reminded me of the song by The Police, “Every Breath You Take.” Eventually, Suzy left to get us some food for lunch. It was shortly thereafter that I watched my Dad’s breathing slow down and eventually stop. I was caught up in the moment and said to Aunt Helen and Carolyn, “I think he stopped breathing.” I immediately got one of the nurses and she confirmed that he had gone. John Coltrane’s “Coltrane Plays the Blues” was still playing on my phone (as I’m listening to now over my stereo).

Being present for my Dad’s transition is one of the most sacred experiences I’ve ever had. I would like to think that I was there for him as he was for me all those years when I was “in the wilderness.”

But it was the music at the end of his life that I will always have to hold onto and cherish. And for that, I am truly grateful.

“And I rationed my breaths

As I said to myself

That I’d already taken too much today

As each descending peak

On the LCD

Took you a little farther away from me

Away from me….

‘Cause there’s no comfort in the waiting room

Just nervous paces bracing for bad news

And then the nurse comes round

And everyone lifts their heads

But I’m thinking of what Sarah said

That love is watching someone die”

“What Sarah Said”

Death Cab for Cutie (2005)

Published by Mental Health Verses

I'm a mental health advocate, educator, and TEDx speaker. I also am a featured columnist for BP magazine, I have lived with bipolar disorder since 1981 and I'm in long-term recovery from addiction. I host the program, Mental Health Verses on the SUNY Buffalo State radio station, WBNY 91.3 FM

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