Wednesday, April 10, 2013

Finding the Threads of Strength: Supporting a Sibling With Mental Illness

By Molly H. Wilson, NAMI Montgomery County (Pa.)

Recently my family experienced a miracle. Not the type of miracle that draws massive crowds or gets noted in history books, but a miraculous experience that  we never believed possible. Tucked in a remote area of New England, overlooking the rocky coast, we witnessed my younger brother exchange vows with his wife. I can’t say whether it was the crisp ocean breeze or nearly a decade of tumultuous emotions being released from the internal box I have worked so hard to contain, but I have never felt such a powerful mixture of relief and joy. Part of this was a result of watching my parents, sisters and brothers; the collective awe of living a moment we once thought impossible. Mostly it was pride and joy for my brother, as he had found a trusted companion, a true love, someone who was excited to spend the rest of her life with him—despite his mental illness.

In 2003, my brother was in his early 20s and living on the west coast. He started to exhibit signs of delusions. Over the course of a few weeks, telephone conversations became more bizarre and it became obvious that something was happening to him. The speed at which he deteriorated was alarming, and my parents soon flew him back home to get a better idea of what was happening. Was it drugs? Was it alcohol? Was he sick? We had so many questions and fear started to saturate our thoughts.

He came to stay at my house the night he arrived. Opening the door to greet him is a moment that plays in my memory over and over again. Normally, my brother is tall—striking in fact—and has a truly contagious smile, but in that moment, he was hard, rigid and closed-off. He wore the black hooded sweatshirt—with the hood up to cover most of his face—that would become a constant part of his identity in the coming months. He seemed shorter, defeated and, most of all, scared. I reached out to hug him and was met with resistance, he wouldn’t make eye contact and barely said hello. I remember feeling a deep sadness. This is not the brother I once knew. What happened to him? What did he do to bring this on? This one moment, the simple act of opening the door and greeting my brother, for me represents the threshold of crossing into a world of a family member affected by mental illness.

The next few years were about survival, not only for my brother, but for my family. He was eventually diagnosed with paranoid schizophrenia. He struggled to interact with people, finding it difficult to even go into a store to buy a cup of coffee. He couldn’t make eye contact and conversations were brutally short. He continued to bounce around trying to find quality medical care. Our family struggled to be supportive, understand which behaviors were results of his illness and which ones were not. He repeatedly went off his medication and had episodes—or psychotic “breaks”—until he came to terms with the fact that he would need to take some form of medication for the rest of his life. It was a dark time. 

When my brother and I were young, people used to think we were twins. I loved being told this, because it reassured me that we had a special bond. His experience with mental illness has impacted me on so many levels, but mostly I felt like I had lost a sibling because this bond was broken. He barely talked to me and didn’t return phone calls. In all of my research, I found lots of support and guidance for parents of children with mental illness, but struggled to find support for the siblings, particularly, adult siblings. Unlike my parents, I wasn’t invited to doctor’s appointments or responsible for ensuring his basic needs were met. This at least gave them some direction and steps they could take. I also struggled to talk to other people about it. In addition to worrying about protecting his privacy, I quickly found that most people didn’t know how to react to a personal conversation about mental illness and felt uncomfortable, which in turn, made me uncomfortable. How could I help? Without an answer, I just kept calling him, visiting him and sending him emails. I tried to be supportive and maintain as much of our “normal” sibling relationship as possible.

And then one day, years after that first melancholy greeting in my apartment, something was different. He smiled. He cracked a joke. He made eye contact. He was interacting with friends, and he talked about a girl he had met. The constant weight that was my new normal started to lift from my chest.

We haven’t found the cure. Certain struggles have become a part of the fabric of my brother’s life, and as a result, for all those that love and support him, but he has gained the tools to manage them and is thriving. In quiet moments, I have heard each of my parents and siblings mention the black sweatshirt my brother wore constantly those first few months. Looking back on it, I think it gave him comfort to hide beneath its threads. As we watched him get married, he stood tall with his head held high and no reason to hide. I have never been more proud of him or our family. In the darkest of moments, we refused to give up hope, demanded better treatment and in some situations, gave him the space to figure some of it out on his own. Not an easy feat for anyone, or any family, touched by mental illness.

My brother only wants to focus on the future, and rightfully so. When you have experienced such darkness, focusing on the present and looking to the future is the only way to live life. He is firmly grounded in reality, as is his support system, and we recognize that he will struggle again. He will always need to pay close attention to his mental and physical health to ensure he doesn't slip backward, and continue taking medication and seeking professional help. But for now, we will embrace the miracle our family has experienced. We will drink in all that we can of it, and live off its warmth and comfort for as long as possible. Because when you love someone who struggles with mental illness, that is all we can do: make the very most of the good moments and use them to build strength for the tough times ahead.