Updated: Jul 6
| This is the 204th story of Our Life Logs |
I was born in 1957 in Framingham, Massachusetts, the second of three children. I was the wild one; the black sheep. Once, when my cousins were over, they dared me to ask my mother what “lesbian” meant. So, being the bold one, I agreed to the dare. Not only did I get smacked across the butt, but my mother cornered me against a wall and shoved a bar of soap in my mouth. That’s how square my parents were. Truly, though, I had wonderful, loving parents, who only wanted the best for me and my siblings.
Dani, my little sister, was talented and well-adjusted, while my older brother Bruce was simply “different.” He didn’t like to socialize with other kids. He often shuffled in place, a behavior my father called “sheckling.” He didn’t interpret vocal and facial cues naturally. My mother had to teach him how. My parents did everything they could to support and understand Bruce, but it wasn’t always easy.
Bruce’s strange behavior became increasingly problematic as we got older. In high school, I was embarrassed by Bruce. I didn’t want anyone to know we were related. I was mortified by him and I was unenlightened. I just wanted to be socially successful, and, for the most part, I was. But kids were cruel and intolerant. One day, we found the car my parents had bought Bruce flipped over in the driveway. In hindsight, I wish I had done a better job protecting my brother, but at the time, I was just trying to keep my own head above water.
It was a relief to leave for college. Despite the wealth of love, I was ready to be detached from the tensions of family life to begin my academic career. I attended Rutgers University and received a Bachelor of Honors in English and Mass Communication in 1979. After college, I wrote for a variety of outlets before building a career in the music industry. At one point, I worked as the director of tour marketing and promotion for the band Aerosmith. It was such an exciting time in my life. I later went on to become one of the first female senior vice presidents in the industry.
It wasn’t long after I started my career that the movie Rainman came out. I saw it in the theater with my mother and sister. At the conclusion of the film, we just sat in silence for a few minutes, unable to leave our seats. My mother was shaking. For the first time ever, we saw somebody who acted like Bruce. After much research, I discovered that there was a name for my brother’s developmental disorder: Asperger’s. Finally, we knew why Bruce was so unlike other people.
In the following years, I managed to visit my family at least once a year, which was always a treat. Year after year, my heart softened to the ticks and quirks of my brother, slowly, but surely. Still, I was working like a madman, so my calls and messages were received and sent only as often as I could manage.
When Bruce was forty, he had a serious heart attack. I promised him that if he pulled through, I’d take him on a trip to Italy (since he absolutely adored Italian food). Miraculously, he survived, and off we went on one of the best trips of my life.
We were in a piazza on a dreary, misty afternoon in Venice. We got gelato, stepped out of the store, and we happened to turn at the same time. We shared the same visual perspective of The Doge’s Palace. We were both stunned. In our childhood home, a George Loring Brown original painting called “The Doge’s Palace” hung, and our perspective replicated this piece of art. That extraordinary shared moment was, and still is, one of my most special memories with my brother. It reflected our childhood together—all the holidays, family gatherings, and love shared in the room in which that painting hung.
In a way, this was the beginning of our friendship. I developed a close and accepting relationship with Bruce. I didn’t know how much time I had left with my brother, and I wasn’t going to squander those precious moments with feelings of insecurity.
Although his heart was critically damaged, he lived for an additional two decades. His doctors called to notify me that Bruce was almost out of time.
The next day, Bruce called and said calmly, “I’m just calling to say bye!”
I said, “Let’s put on our existential caps until we both understand how we feel about this and what this means.” At the end of the call, I told him, “I’ll never let you go. I’ll always be there for you.”
Even though we were physically in different locations, I really felt like we were holding each other’s hands as he was passing on. I’m grateful for the relationship we had and for all the lessons I learned from having such a unique brother. Bruce passed in September of 2017.
Years before the passing of my brother, I met my husband when I was working as a booking agent and he was a musician. I congratulated him on the review of his album in People magazine and suggested we should meet up. We went out for sushi and he paid. That’s when I realized we weren’t just “catching up.” We were on a date! Three months later, we were married.
“You were easy,” he said to me.
“No, I was ready,” I retorted. I had waited for him long enough.
Although I had never expected to be a mother, Robert and I decided to have children together. We have two boys, Thomas and Ben, but we could never have imagined the challenges we would face.
Thomas started having panic attacks at the age of seven, and it wasn’t long after that I started to notice strange involuntary movements in Ben. At first, I tried not to worry too much about either of my sons. Many children outgrow anxiety, and the movements were small, but, over time, it became increasingly obvious that the problems weren’t going away. The psychiatrist told us that Thomas had a handful of anxiety disorders, including OCD. Ben was diagnosed with Tourette’s.
When they were very small, my boys adored each other, but as they aged, Thomas became embarrassed by his brother’s behavior. Ben would hurt us physically in his worst times, and Thomas resented him. Ben was aware of how his behavior affected us, but because Tourette’s is a neurological disorder, there was little he could do to change it. One night, as we prepared for bed, Ben asked, “Why doesn’t God love me?”
I swallowed my grief and said, “Of course God loves you, or you wouldn’t be here to be loved.” I never thought I could have enough tears in me.
As any mother would be, I was often overwhelmed. Just as my parents had to adapt to Bruce, Robert and I had to alter our parenting choices to accommodate our sons. When my mother called to say hello, I hated telling her the truth about how things were going. Things were bad for so long. My house was a war zone, and there were many days that I did not believe I had the strength to keep fighting.
Ben got into a clinical trial for kids with Tourette’s in 2005. The study focused on cognitive behavior intervention therapy to teach kids not to flail physically. Essentially, it came down to teaching their brains they could control their bodies. I practiced with Ben every night before bed for 328 nights consecutively.
At sixteen, he grinned at me, and he said, “I’m happy. I’m not ticking so much anymore. I think it’s half because I grew out of it, and half because of the study.”
Meanwhile, Thomas’ panic attacks persisted. He was so clever. He learned more about the therapists than they learned about him. His OCD worsened as he got older, and when it came time to go to college, he was half-hearted. He earned a significant scholarship, but the night before we were to board the plane, he broke down. He stayed in a mental health program for 21 days.
It’s not like a mother wants to put her kids in the hospital, and I’ve had to do that with both my sons. As a mother, you have to know what your limitations are, and the impact your choices have on your family. If you love your children enough, you do whatever you have to. I didn’t care that people knew my kids had problems. I couldn’t give them the help they needed on my own.
I was never looking for a cure for my son. I just wanted to give my child the same unconditional love that my parents had for Bruce. Thomas is just now understanding that although he suffered traumatically, Ben did, too. Life wasn’t easy for them, but loving each other is the best way to cope with their traumas.
I wish I could go back in time to my childhood in order to give Bruce the support he needed, but I can’t. I can only honor his memory by being the best mother I can be to my sons. At the end of the day, I will always be a mother to two wonderful sons and a sister to a unique and beautiful soul.
This is the story of Faithe Raphael Haimer
Faithe grew up in Framingham, Massachusetts, surrounded by a loving family. As Faithe got older, she started to realize that her brother, Bruce, was unlike other children. After decades of searching for answers, Faithe finally realized her brother had Asperger’s. Bruce taught Faithe how to truly love unconditionally, even when faced with unusual circumstances. When Faithe had children of her own, they struggled with psychological and neurological disorders. Despite the challenges her sons had, Faithe never lost hope. She vowed to protect and nurture her sons no matter what. Influenced by her experience of having a brother with Asperger’s, Faithe became her sons’ fiercest advocate. Faithe detailed her experience at length in her book, The Rock Stars of Neuroscience: How a Groupie in Crisis Emerged as the Heroine of her Family’s Victory over Mental Illness. Her book can be purchased online on Amazon.
Today, Thomas is enrolled (and thriving!) in an accelerated Master’s program. Meanwhile, Ben is finishing up his undergraduate degree. Faithe currently works with UCLA’s Depression Grand Challenge Advocacy Team. She lives in Los Angeles with her husband Robert, and their dogs, Foster and Posse 2.
This story first touched our hearts on September 13, 2018.
| Writer: Amy Joy Kagno | Editors: Kristen Petronio; Colleen Walker |