Thoughts on Brain Illness

Last week my friend and neighbor, John, died by suicide. As a native of England, he served time in an elite military unit. That experience led him to champion conflict resolution and work in some of the most troubled places on earth. John was extraordinarily smart and worldly—a wonderful friend and mentor to my kids.

And then, seemingly overnight, our kind, generous, athletic friend became helpless and hopeless. His emotional breakdown appeared to have been triggered by some physical issues so we all believed he could and would heal. To that end, my husband and I became caregivers: we drove him to doctors, ran his errands, and spent lots and lots of time just sitting with him.

But John didn’t get better. The night John died, his despair and hopelessness had morphed into fear and paranoia. He was unable to connect to reality on any level—none of us could reach him.

John had military training and knew how to end his life quickly. Although we arrived on the scene almost immediately, we were not able to save him. My grief has been overwhelming—it was such a huge and shocking loss.

For the past week, many kind-hearted and loving people have supported me and my family, and, for that, I am so grateful. At the same time, I realized how much even the most open-minded people (myself included) still have difficulty understanding and talking about brain illness. I find myself feeling angry at the things so many well-meaning people have said—things that never would have been expressed if John had died of a physical rather than mental illness:

What a waste of life.

John’s life was not wasted.  He was deeply committed to making this world a better place. He loved his daughters and family, music, teaching, art, nature, cooking, and his work. The brain illness that killed him did not define him. When an acquaintance of mine died in her late 40s, everyone who knew her was sad. But nobody said that her life was a waste, even though it was abruptly cut short.

How could he do this to his mother, children, friends, etc?

John had a severe and fast-moving brain illness. The last months of his life were filled with desperation and disorientation. On the final day of his life, he had lost his sense of reality completely. He was not in control of his thoughts or decisions any more than a person with end-stage brain cancer. He would never have made the choice to leave his daughters or anyone he loved. He did not choose to die because brain illness takes away one’s ability to make choices. He did not do this to anyone—the illness took his life.

It wasn’t your fault; don’t let this take over your life.

I know that John’s illness was not my fault. My father’s cancer and heart disease was also not my fault. However, I wish I could have done more…for John and for my father.  As an Anxiety Sister, I have a deep sense of empathy and connection to other people, which, most of the time, is such a blessing. But with powerful connection comes devastating loss. So my grief is rightful and natural, and I will allow myself to mourn my dear friend. On some level, aren’t we all responsible for each other?

Too bad he didn’t get help.

John spent the entire summer going to appointments with various doctors. He even checked himself into a psychiatric hospital. He tried to get help, but the medical system failed him. Doctors didn’t communicate with one another as they added and subtracted medications. They never took the time to speak to one other in order to coordinate a treatment plan. After his hospital discharge, John tried to reach his doctors to answer questions he had about his medication;  however, nobody was available to talk with him. And nobody was in charge of John’s care.

John needed a holistic approach to his illness. In addition, he needed a patient advocate. (When we have a severe physical illness or brain illness, we cannot be our own advocate.) Our healthcare system is disjointed and broken, and I do hold it responsible for John’s premature death. It’s not easy to “get help” and, even when we do, sometimes the help is not effective.

Losing John has brought home for me just how important it is to educate people about mental illness, which is every bit as deadly as “physical” illness. Abs and I are doing our very best to stop the stigma and get the message out there that brain illness is legitimate and worthy of our attention. Our tagline is “Don’t go it alone” because brain illness and the stigma surrounding it are so isolating. The Anxiety Sisterhood is no longer a small community—we are 200,000 strong and growing every day. Let’s use our voices collectively and individually to force change in our healthcare system and in our understanding of mental illness. Let’s not allow anyone to go it alone.