Relationships

The Sweetest Guy You’ll Ever Meet

My friend Neal’s disability turned out to be my Zen

Neal's concerns and questions were those of a disabled adult trying to understand human emotion and behavior.

“He’s in his 40s, autistic, maybe Asperger’s, though he’s never been diagnosed. He’s HUGE, like over 6 feet and probably 350 pounds.”

“Bertha, why exactly do I want to work-out this person? I asked.

My personal training client of many years, a superior court judge who I’d come to rely on for good advice, answered, “Because he is the sweetest guy you’ll ever meet.”

At the time I met Neal, my personal training clients were all older women — “the post-menopausal bitches of Western Massachusetts,” joked my long-time client Martha, a vivacious, blonde horse breeder. I had never worked with someone with a disability.

Neal’s mother and I worked out the specifics by email. I’d meet him twice weekly at a gym I didn’t know existed next to a housing development in where Neal lived independently. The gym was owned by a guy who had a brief and marginal career in some sport but was better known as the dissenting staunch conservative on a town council in an otherwise liberal town. His gym was a small drafty place with cracked linoleum flooring and outdated (by about 3 decades) exercise machines. There was hardly anyone there. This was the perfect place to work with Neal.

For the first few months, Neal showed up late. I could see him out the gym window making his way from his apartment door: a hulking presence, walking very slowly, stopping often as if he just remembered something, his arms rising for no apparent reason, fingers working the air.

When he finally got to the top of the gym stairs he was contrite; the massive man before me became a child — his eyes downcast, head cocked to the side, arms rising slowly to make a point — and he’d tell me in his slow, deep, loud voice, enunciating every word, never using contractions, that he could not find his pants for the gym for a long time or that he just had to finish his sub sandwich or that he was recording something from the Grand Ole Opry record he bought at the Salvation Army. I told him it was OK, but being late meant we had less time together.

Three things I learned quickly about Neal — he lied like a 4-year-old, he spoke loudly and without reserve, and he had a database mind for everything that had to do with contemporary music. That became the icebreaker for us: On the gym radio I heard “Ain’t Nothing Like the Real Thing” and said, “I like this song.” Without even stopping to think and in a voice much quicker than his speaking voice, Neal robotically listed the date the song was recorded, that it was a duet with Tammy Terrell, the birth and death dates of Marvin Gaye, that his father shot him to death, and that his last concert was at the Pacific Amphitheater in California on August 14, 1983.

Through my astonishment I said, “I was there. I saw that concert!” Neal looked at me wide-eyed, awed. “Don’t stop walking, you’ll fall off the back of the treadmill!” I said pushing the emergency STOP button just in time. He smiled broadly, “Do you like music, Robin?” he asked. That was it. I was in. After that, when I showed up Neal was there waiting for me often with something to show me from his collection of music memorabilia.

During the first year I worked with Neal, I went through a hellish breakup. Neal didn’t notice my despair, weight loss or spaciness. He didn’t have the capacity for empathy or compassion because of his disability. He was totally self-reflective. He’d ask things like, “If mom dies, who will give me money for records?”

His disability turned out to be my Zen. When I was with him my focus had to be entirely on Neal and I’d always leave him calm, happy, feeling useful in the world. I looked forward to our visits.

Neal started to rely on me as a confidante. Although he could be childlike in many ways, Neal’s concerns and questions were those of a disabled adult trying to understand human emotion and behavior. He had a girlfriend who was also emotionally disabled and he asked me about her moods, about sex. He did not understand why a co-worker picked on him. What did a girl on TV mean when she said her father touched her?

My responses had to be measured; slow, without using contractions or filler speech such as, “you know,” “right,” “actually.” In slowing down I felt at ease, the scrambling of my suddenly chaotic life no longer as scrambled or important as my job at that moment.

If there was anything of serious concern, I let Neal’s mother know. This was how she wanted it: only serious things. She worked hard to get him to the point where he could live independently and she did not want to micromanage him. Because of his connection to me she solicited my help in explaining difficult family things to Neal. And when I told her he was not using his CPAP machine and waking up in the night and eating, she put me in touch with his doctor.

It was a freezing January afternoon when I got a call from Neal’s mother. Neal had been hit by a car on Route 9, a major road through all the cities linking the five colleges of the area. No one would think of crossing in the middle of Route 9. She thought he was going to the Salvation Army, a short walk to one of the few stoplights for pedestrians. A car turning out of a driveway hit him. “Nothing appears to be broken … the car was going slowly … but he’s in a coma,” she told me.

At the hospital I sat on Neal’s bed and talked to him. His body was so still, like he was sleeping, and there was only the sound of a breathing tube.

Neal’s mother called a couple days later. He had no brain activity and they were going to remove the breathing tube. She invited me to a gathering at his bedside. We stood around Neal in a crowded cluster of family and friends. People I didn’t know. His doctor and I stood next to one another — the outsiders that Neal relied on. We all sang Beatles songs to him, for a long time, and then his mother asked his doctor to remove the tube.

I have never seen a person die until then. It happened quickly. He seemed to be trying to take in air and then he was gone.

I don’t have a moral to this story or a neat ending. I can’t relive my time with Neal in order to find that Zen. Thinking of him fills me with sadness, in part because of what I lost in myself.

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