By Susan Neely-Barnes- Tennessee. I had just turned two years old when my brother, Will, was born. I do not have any memories of my life before he was around and some of my earliest life memories were of the many doctor’s visits he had as he was being diagnosed. These medical appointments resulted in a diagnosis of Tuberous Sclerosis Complex (TSC), a rare genetic condition that impacts cell growth. For Will, TSC caused seizure disorder, autism, and profound intellectual disability. As a preschooler, I was aware of the seriousness of his condition and that ultimately, he would die from it. As my mother recounts, we were told in 1977 that, “there’s no treatment, there’s no cure, and at best, he will live until age fourteen.” Ultimately, my brother lived to age forty-three.
Like most other siblings have described, my brother Will had an extraordinary influence on my life. Will made me very aware of social norms because he was always violating them, whether it was walking up to the table of a stranger and stealing fries or walking into a stranger’s hotel room and sitting down on the bed. My experience of life with Will made me very aware of ableism. We experienced the stares, the laughing from other children, and comments about his behavior. We experienced the schools trying to exclude him because his disability was too severe to be accommodated. When I was applying to college, I was asked the standard essay question, “What person or experience has had the most influence on your life?” I wrote about Will. I wrote about how I learned to adapt activities to his needs, and how he helped me see the world through a different lens. I will always credit Will with my acceptance to Duke University.
Like all siblings, I experienced both the positive and the negative side of having a brother with a severe disability. My brother could at times exhibit some violent behavior. Once in the second grade, I was standing at my teacher’s desk getting help with an assignment. She pointed to the scratches on my hands and asked if I had a cat. I explained that no, I had a brother with autism. The look on my teacher’s face made me realize that his aggressive behavior was not something that was acceptable to talk about.
Will’s tendency toward aggression proved challenging for our relationship once I had children. He broke my daughter’s favorite toy when she was four. If we picked him up from his group home to take him to McDonald’s, his favorite place, we could not let him sit next to our kids in the car for fear that he would hurt them. For me, he was my little brother. For them, he was adult-sized and scary. My opportunities to see him were limited because we lived far apart and because it was difficult to visit with my children. When my oldest child turned sixteen and was able to drive, I finally felt like I could get away and spend more time with him. My brother was in the hospital for the second time in a month shortly after my oldest child got her driver’s license. I could hear the stress and exhaustion in my mother’s voice as I talked to her on the phone. I was happy I could finally get away to help her. I thought I would do that regularly from now on, but this was to be his last hospital visit.
I had thought about and anticipated my brother’s death for many years. We had many health scares over the years. At age seventeen, we almost lost him to a large brain tumor, a subependymal giant cell astrocytoma (SEGA). At age thirty-nine, we almost lost him to a kidney tumor, a renal angiomyolipoma. Ultimately, at the age of forty-three we discovered that he had colon cancer, probably caused by a TSC cyst or angiomyolipoma in his colon.
Given that Will was mostly nonverbal, he was unable to describe his symptoms. When I got to the hospital in August 2019, he was tearing up the room and pulling the IV out of his arm. After a day of this behavior, I realized that he might be in pain. I asked one of the nurses what he was receiving for pain, and he was not being given anything at all. His only prescription was for Tylenol, and it was PRN. He had not been given any because he had not asked for it, at least not in ways that other people could understand. I asked the nurse to give him the Tylenol. Once it kicked in, he took a four-hour nap. Throughout the remaining months of his life, my parents and I continued to advocate that his pain be recognized and addressed. For nonverbal people, sometimes aggressive behavior is the only way they can communicate that they are hurting. This communication can be difficult to recognize.
We knew that Will hated hospitals and medical treatments. It was clear that his diagnosis was ultimately fatal, and for Will, any surgeries or chemotherapy we opted for would only prolong and increase his suffering. We opted for hospice and tried to make his final months as comfortable and happy as possible. He got to eat ice cream three times a day during hospice. I was able to come back and visit him two more times. He died in November of 2019 a week before Thanksgiving.
Grief is difficult to predict. Somedays, I go about my day without giving it a thought. Somedays, a little thing such as a song on the radio will trigger a memory and I will find myself very sad. The most difficult days are his birthday and his death day. I try to do something on that will help me remember him in a positive way. We have a tradition of all going to McDonald’s on his birthday and posting selfies of us eating our fries in honor of Will.
My relationship with Will had a profound impact on my life. The contributions of nonverbal people are often discounted in our society. Will was never able to earn a paycheck, and I know his care cost the state quite a bit of money. Yet, Will’s life touched so many people in his family, in his church, in his house, and at his workshop. I am truly fortunate that I grew up with Will.