What a Local Support Group Taught Me About Brain Injury Awareness

Hour Detroit’s Health Guide editor on the uplifting way the Brain Injury Association of Michigan assists grieving caretakers for survivors of traumatic brain injuries

A little over a year ago, I was standing in the ICU at a small hospital in my hometown of Mount Vernon, N.Y., when I asked my stepfather how much longer before we’d be able to leave. “Lyndsay, they’re saving her life,” he snapped.

He wasn’t wrong for his stern tone. He was a man afraid of unexpectedly losing his wife.

Five days into a successful recovery from an intestinal obstruction surgery, my mother developed a sudden case of aspiration pneumonia. The respiratory complication led to a severe anoxic brain injury, in which the brain suffers a loss of oxygen. At 57 years old, my mother was left with a neurological condition referred to as unresponsive wakefulness syndrome — formerly known as a vegetative state.

In the months that followed, my life was in limbo. Though at the time I was living in Chicago, I relocated back to New York to remain by my mother’s side. For nearly three months, my husband and I maintained a long-distance relationship while I slept on a friend’s couch. My career was put on hold, and family ties quickly unraveled without my mother as the knot that fastened us together.

Once we settled on a nursing and rehab facility for the next stage of my mother’s care, I returned to Chicago, vowing to visit her once a month moving forward.

But my thoughts never left New York. Time that should have been dedicated to freelance writing assignments quickly became reserved for researching anoxic brain injuries, for phone calls to traumatic brain injury facilities around the country, and for conversations with neurologists and friends in various sectors of the medical field.

When it settled in that there was little to be done for her condition, I was in search of one thing: hope. Hope that despite my mother’s poor prognosis, there was a chance for recovery.

After relocating to Detroit six months after the incident, the Brain Injury Association of Michigan (BIAMI) led me to a listing of support groups for brain injury survivors and their caretakers across the southeast region. And during my first meeting, I found the reassurance that I was looking for.

Though none of the attendees sustained an anoxic brain injury — in Michigan, approximately 30 percent of TBIs are caused by motor vehicle accidents as reflected by the survivors in attendance — I witnessed what recovery looks like, firsthand. I witnessed the patience caregivers develop when speaking to patients whose speech is slurred and social skills askew, and the camaraderie among the survivors who look forward to the monthly, judgement-free meetings where they share their struggles with similar individuals.

But most of all, I witnessed compassion. When I timidly tried to fight back tears during introductions, a survivor looked at me and said, “There’s nothing to be embarrassed about. We understand.”

That’s the thing about support groups. They unite individuals who share common struggles. Before discovering BIAMI, I hadn’t considered the support that I might need as my mother’s only child.

TBIs can be equally as devastating for loved ones as they are for survivors. In my case, I have not heard my mother’s voice in over a year. Seen her name flash across my phone screen. Welcomed her into my new home in Detroit.

The process of selecting an appropriate rehab facility was an added pressure. It can be a challenge to secure a facility that offers cognitive and therapeutic services as well as the respiratory and dietary needs that are often required for patients with minimal consciousness. For my family, already fragile with grief, the stark differences of opinion on the right facility broke us.

Families of those who sustain less critical injuries often say that their loved one is never the same after a brain injury. Behavioral shifts transform them into strangers, and symptoms of post-traumatic stress disorder often trigger depression and suicidal thoughts. According to a 2007 study published by the medical journal Brain Injury on suicidality in people surviving a TBI, 18 percent attempt suicide. Overall, people with severe TBIs have a risk of suicide 3-4 times higher than the general population.

Though BIAMI cannot eradicate the many challenges surrounding TBIs, its monthly support groups create an environment that reminds survivors and their loved ones that they’re not alone in their experiences.

I’m grateful to have found a space filled with love, support, and total understanding. Despite the distance, the group has a way of bridging the gap between my mother and me. I suppose, the survivors may save my life as I cope through this difficult time.

Visit biami.org for a complete list of support groups in Michigan.