My uncle stopped taking his medication. He has schizophrenia.
He and I have never met face to face—except when I was a toddler—but we have developed a close and caring bond over the phone. He is a genius who attended an Ivy League college and had the world in his hands; even a fiancée. One day he lost it all after a series of cataclysmic events (after all what is untreated schizophrenia but a natural state of existence?).
Growing up, I did not know him. I heard stories about his illness that frightened me. On the flip side, every once in a while he would send gifts for me to my father’s house. One Christmas he sent Road Runner and Wyle E. Coyote stuffed animals because he discovered that I adored those characters. I never knew how to feel about this man. There was a veil of secrecy and shame around his life; whispers and offhand comments. I thought he lived in a distant land but in reality he was institutionalized. At one point in time he was located about 30 minutes from where I lived.
In retrospect, I see that because my family members had suffered with my uncle’s descent into madness they did not view him as a person. He became his illness. There was no malice on their part, but they could not see past his behavior. They had also experienced a lot of trauma around his illness. For this reason, and because he was seemingly so far away, I kept him in the back of my mind but made no efforts to contact him. All of this changed when I forged a stronger relationship with his mother, my maternal grandmother.
When I was in graduate school, I unknowingly moved within blocks of my grandmother’s house. Having moved from the City, I didn’t have a handle on the geography of my new neighborhood but was delighted to realize that she lived nearby. Over the 3 years that I was in school, she and I spent time talking about the family, her life, and my uncle. Good and bad, through her words I came to understand him. Through a more adult lens, I grieved the loss of his pursuit of academics, the lost love of his fiancée and shuddered to think of the treatments he suffered through in order to “cure” his condition. At my grandmother’s urging, I started calling my uncle, who now resided in his own apartment upstate. This was about 15 years ago.
From the time my uncle and I first began talking he was on medication and seemed well adapted to life. While he couldn’t work, he had many friends, volunteered to do Meals on Wheels and helped anyone he could. Much of his time was spent reading or writing articles or stories. He shared books with me and we often had long talks about theology. He had been a devout Catholic for much of the time that I knew him. He spoke of his regret over not being able to find love or companionship, or to have a career.
There was never a time when I felt concerned about his well being, or even really viewed him as sick because he was so cognizant of his surroundings and what was going on in the world. Sometimes we roared with laughter, sometimes there were tears, but he offered a listening ear to me that few had ever provided. I did the same for him. One year for Valentine’s Day–when I was single and stressed out—he sent me a card offering words of encouragement about a future love waiting in the wings. I could not believe how supportive he was and in tune with what I was going through!
Until recently, the only real glimpse of my uncle’s illness came to me in the form of art work he had created while institutionalized. My uncle’s friends encouraged him to show his work—known as “outsider art”–in a City gallery. He could not travel down for the opening but asked me to attend on his behalf. When I saw what he had created while living in mental institutions, I began to better understand his existence. The inner workings of his mind, while far from clear, became more obvious to me. The work spoke volumes. The images from inside were brought to life on paper and canvas, the struggle for “sanity” readily apparent. And so the struggle has begun again.
It started around the holidays. I first noticed that my uncle stopped going to his theology classes, a group that he had loved and cherished for quite some time. Then he switched religions. I thought it odd but gave him the benefit of the doubt. Then he gave away his paints and canvas, clothes and other worldly possessions—a bell went off in my head as I remembered a similar story from my childhood. Finally, he confirmed that he was off medication but had never felt better. And there it was. His illness crept through the phone line, but he sounded happy and alive.
According to him, his symptoms were manageable. I soon learned from his friends that he could talk a good game. Behind the scenes things were spiraling out of control. The last time I spoke to him on the phone I told him I was worried and that I loved him—we had started saying that over the past year or so because we came to feel that way as our relationship grew. He is my uncle and in that moment I felt grave concern for his well being. As he further descended back into the schizophrenia, I had to call the sheriff’s office. He ended up in the hospital. Admittedly, I feel that he is safer there.
This whole experience has made me question so much. I have never seen my uncle in person. At this point I do not think it is likely that I will. I have drawn boundaries for myself that now seem blurred given recent events and the concern I felt for his well being. I felt a bit of anger at having been left to deal with this – though it was not my father’s fault that he was murdered and is not here to help me make decisions. My uncle is the last surviving member of my father’s nuclear family. I have trepidation about my uncle’s illness which comes from my own history of being traumatized by brutal and unpredictable people. This prevented me from visiting him so many times before. He always understood.
I wonder if my uncle is nearing the end of his life. If so, which way would he be happy? On or off his meds? Is this a bump in an already rocky road for him or is he nearing his end? What role can I play while keeping myself intact? I am sure the answers will come in time. For now I can rest easy knowing that my uncle is not in imminent danger and that the lifelong friends he has made upstate are rallying for his recovery.