The diagnosis of a debilitating disease changes one’s life. Time will freeze as you struggle to remain present while you reminisce on the past and pray for the future. Our internal clocks tick until time runs out and our story ends.
Driving home one evening I saw police cars at my friend Tom’s house. I feared the worst yet hoped for the best as I walked up to an officer at the open garage door. The prognosis was Tom was still alive yet barely. His plans to fade off into the afterlife was almost complete.
Calm and complacent I was satisfied with our time together as Tom was preparing for the afterlife. Actually he was already well prepared and had everything in perfect order.
One afternoon I was scouring Craigslist for film gigs when I came across an ad for a documentarian needed in my town. As I already had what I believed to be the essential qualifications and equipment for the job, I responded to the ad.
I received a response from Andy, a close and personal friend of a local artist named Tom. Tom had been plagued by years of health issues and as of late he felt he was deteriorating.
Because of Tom’s ailments, he imprisoned himself to his home.
So the project seemed relatively straight forward, bring film gear for an hour once a month and film Tom in a basic documentary style. Tom’s friend Andy would be the interviewer and attempt to keep Tom on task as we worked through the interview.
Tom’s home was your typical split level suburban tract home. Once inside we made formal introductions and headed upstairs.
Tom was a medium-sized aging gentleman in a thin fit shape. Over the past few years, he had been struggling with Parkinson’s disease and so, therefore, his movements were calculated yet lacked full control. It was immediately apparent the disease had affected his motor skills.
Tom offered us tea and pizza he had purchased specifically for us. While he was in the kitchen prepping I set up the film equipment in the dining room. It was hard to miss that the walls were filled with the most stunning artwork I had ever witnessed. Finely detailed oil paintings, some still life, and others were a bit more abstract and magical.
Tom sat down and began the interview explaining what he called his first incarnation as an oil painter. He explained his attention to details from having been a scientist for many years prior to developing a rare unrecognized Brain Allergy.
His environment was slowly killing him as his body recognized chemicals as neurotoxins and they would attack his central nervous system. Most doctors don’t believe the disease exists and feel it’s a psychological disorder and therefore Tom had to prove the disease was real and debilitating.
With the only actual research done on the disorder back in the 1960s, he had to find his own path. Tom found a specialist that was able to obtain him medical disability from having to go to work however it began Tom’s new life of a recluse. Imprisoned in his home away from the poisons he couldn’t be around.
Molds, perfumes, chemicals all exacerbated his condition. Tom had to remove all of these items from his home. The off-gassing of plastics we call the “new car smell” forced Tom to have to ride a bicycle around town. His trips would be purposeful as he had to stay away from environmental toxins.
The hardest part of his disease was his reaction to the paints and thinners he had grown to love. He could no longer paint and therefore fell into a void of depression.
He pushed on and found alternative means to express his creative side. He restored old baseball cards to offset his disability income and a few years later found his second incarnation working in water-soluble inks.
Tom surrounded himself amongst his art, each piece framed and carefully hung. As he was aging he was diagnosed with Parkinson’s that hit him with a new grouping of medical issues.
Not to be beaten Tom religiously exercised and even during one recording session did 100 push-ups for Andy and me to prove his abilities.
As we interviewed Tom religiously once a month over the course of a few years we learned of his loves and loses. He struggles to overcome his ailments and attempt to have a normal life. Every day was a struggle yet he remained sharp and in control.
His knowledge of politics, science, futurism, and art was second to none. His compassion and empathy for the world was often the motivation behind his works.
Tom was confident that his artworks were very good despite having been seen by few. The fact that he was an outsider artist he felt that he needed to help along with the narrative of his works by documenting his process and how he had gotten there.
One evening Tom explained he had an end game. He recognized that his diseases once he could no longer maintain control would kill him. A hospital or nursing facility that firmly didn’t recognize his Brain Allergy would send his body into an autoimmune rage.
That’s when we were introduced to Compassion and Choices and Tom’s plan to facilitate his own demise once the time came. Andy and I discussed the information we had just been entrusted with. We followed up with his family and were ensured though they weren’t pleased with his plans, they respected his position.
Hours were spent discussing love, life, the environment and how Tom tried to prove his theories within his paintings. He never felt as though he succeeded yet I am certain the answers an artist seeks never are.
At Tom’s memorial service, I wrote a segment of his eulogy. To this day I struggle with how to tell his story that highlights his brilliance. The day will come where the story will unfold inside my mind and I’ll complete my promise to my dear friend, that his legacy and art shall be loved and he will forever live on.
RIP my dear friend Tom
