By Nancy Boucher
I have always had an interest in the wilderness of the mind. I’m no stranger to serious brain disorders, commonly referred to as serious mental illnesses. Both my maternal grandmother and my uncle died with diagnoses of serious brain disorders in state hospitals. I also grew up with two older siblings with diagnoses of serious brain disorders. My older brother gravitated especially towards me when he was having intense symptoms, weaving me into his delusions. And at an early age, my mom sought out my help in supporting both. She even offered me money to counsel my sister Theresa. I often lent my support to my siblings and my mom. The support took many forms. During the early years of our marriage, my husband and I started a business called Nancy's Fruits and Veggies. One day I took Theresa to work with me. Before we got out of the car, she told me as she was looking into the rear-view mirror that she had four eyes. I naively tried logic, to no avail. After about a half hour of hanging out with me at the stand, Theresa said she had to leave, and off she went! I was alone and responsible for keeping our fledgling veggie and fruit stand open. This was not during the time of cell phones, so it was only after a full day of work that I learned my sister had made her way home. She traveled about four miles, but only after stopping at a stranger’s and asking if she could take a shower. Over the years, and thankfully, my sister’s illness eventually stabilized with medication. Theresa had a gifted, kind-hearted, and brilliant psychiatrist who always took time to see her. After our parents passed, Theresa lived in the family home alone—a tiny bungalow where my seven sisters and I had slept four to a bed. My sister was everlastingly committed to family. She cared about and welcomed everyone in our family, even those who had serious issues, into her home. She never excluded or abandoned anyone in need. Theresa had a heart of gold. The way she lived her daily life exemplified compassion and acceptance. I was the student, and she was the teacher. Simply knowing her helped me immensely in my profession as a behavioral specialist in special education classrooms. Theresa taught me that I had to see each of them to reach them, and I had to reach each of them to teach them. I learned, too, that the richest resource for me in helping them were their family members. So, I reached out to meet with them, seeking their knowledge, experience, and insight. It was an incredibly rewarding job. I learned that a unifying concern for families was the impact of this child on their other children. So I started a sibling support group that was powerful for all involved. We always began our group meetings by having the siblings put their dominant hand behind their back and work together to pass a package of lifesavers to share with each other. This simple activity demonstrated a lot. In my immediate family it took me so long to see the heartbreaking impact of serious brain disorder on my son, Clem—my beautiful, sensitive, charming. smart, capable boy. I kept trying to guide and teach him like I had always done alongside his brother. Once they were in high school and were going out at night, I always said the same thing to them—be safe and be kind. About eight years into Clem’s illness, when I made a request of him, he said, “Mom, it’s like you are asking a 2-year-old to go grocery shopping for the family.” Even then, he was educating me about the impact of his serious brain disorder. I didn’t realize it at the time, but he was the teacher and I was the student once again. Over the years, there have been many times when his dad and I have set out with good intention to try to teach Clem good habits to keep his body and spirit healthy. For example, COVID has been especially challenging for Clem. He’s been isolating, going deeper into his mind. And he’s smoking more. More specifically, he’s smoking half of a cigarette, then squishing it out. We are buying more cartons and spending a lot more money each week, trying to keep him supplied with that de-stressor. His dad tried to set up a new system for Clem. He gave an ashtray with sand to him, where he could snuff out the cigarettes gently and then smoke them all the way down before lighting another. It didn’t work. Then I remembered to watch the student and follow his lead. Our efforts, advice and attention to the issue were creating more pressure on him. To even begin to understand, I imagine that I am bed-bound from a catastrophic illness. It has bruised my brain and changed what I can do. I must leave behind what I once loved doing, and what defined an essential part of who I once was. These are the lessons that have been given to me from the wilderness of the mind. Stand beside loved ones with no judgment. Support them with patience and compassion. And love without measure. I thank my family for these gifts.
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