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Get a Group, Get a Life!

While still in my first year of new life after my traumatic brain injury, I was told about a newly forming support group for people with TBI to be held at a nearby rehab hospital. The first meeting was scheduled for April 2011. I was also told by a hospital staffer that I was a perfect candidate for the group.

In more than half a century that my life has spanned thus far, I've seen amazing wonders. I've seen all four of my sons take their first breath. I’ve watched lava flow down Kilauea at night and roll into the sea in billows of steam. I’ve watched sunsets spread, intensify, and melt away over the desert. I’ve watched my wife, Sarah, as she sleeps. Suffice it to say, I have experienced joys unimagined.

But like any other human being since the dawn of time, hardship has also reared its head repeatedly. From the unexpected loss of family members to a bankrupt business, some heavy blows have fallen in my own life. Many of these losses came to pass long before my brain injury.

This does not make me unique. It simply makes me human. I carry no hard feelings or resentment about any of my challenges or difficult experiences. In fact, at a much deeper level, I can appreciate them as they strengthen me. As steel is tempered and made stronger by fire — so have the fires of my own life, including my brain injury — made me stronger.

Long ago I learned an important life lesson. Problems carried alone are problems doubled while problems shared are problems cut in half. Looking back over the most difficult challenges in my life, those times that I was part of a peer group of others with similar experiences were dramatically easier than those times I tried to go it alone.

Such was my life experience and mindset when I learned of the new TBI support group.

I am blessed as the rehab hospital is only a short ride from our home. In fact, the hospital is under a mile away. Arriving for the first meeting a good 10 minutes early, I found an easy parking space, grabbed my ever-present notebook and took the next small steps of my journey … a journey I am still walking to this day.

A bit of a perspective check is in order. Until that first support group meeting, I have never knowingly met someone with a brain injury. My understanding of my brain injury was just beginning, and my awareness of my newfound limitations was growing. Virtually all of my knowledge up to this point in time was presented to me by well-intentioned doctors, by books I had read, and by information I had found online.

I can recall that first meeting like it was yesterday. Walking into the conference room, I was both anxious and excited. Having no idea what to expect, I was a proverbial blank slate when I arrived. And life was about to again change.

A couple of "normal looking" folks sat at a conference table. After poking my face through the door and seeing what appeared to be just a couple of staffers engaged in conversation, I mumbled something about having the wrong room. As I started to exit stage left, one of the attendees called out to me.

"If you are looking for the brain injury group, you've just found it."

Truthfully, I'm not sure what I was expecting. Wheelchairs? People with visible challenges? I was completely both out of and in my element at the same time. I can look back on it now and smile as I "look" normal, just as my newfound friends did.

Over the next few minutes, the room slowly filled with people. People who look just like you, just like me. Brain injury is not called the “silent epidemic” without just cause. By the time the meeting started, there were a dozen of us there, brought together by a shared tragedy, and now bound together by an unasked for life experience.

The facilitator took a couple of minutes to explain a bit about the new group, talked about the direction the group may go in, and started the dialogue by asking each of us to share what had happened. And the stories that unfolded that night were breathtaking. Stunning, life-changing events had come to pass for everyone in that room.

One by one, we shared what happened.

From the young college student who had hit a tree while skiing here in New England to tale after tale of auto accidents, I sat there spellbound. There was even a cyclist like me who was injured by an errant driver. So much for being unique!

Yes, the causes of the injuries were as different as wildflowers in a meadow. But what shocked me were the tales of life after tragedy. Here were a group of people who shared challenges I had never before heard articulated by another soul. From speech problems to memories that no longer functioned, from incessant tinnitus to chronic mental exhaustion and brain fog, I was among those who knew of these things not from reading about them in books, but from people actually living life with a brain injury.

Initially scheduled for an hour, our first meeting went over by about 10 minutes. No one wanted to leave. There was an immediate sense of comfort, a palpable sense of peace that came from simply being in the presence of souls with similar fates.

Though I only had a five-minute ride home after the meeting, I made the decision to take a long-cut and not head straight home. My head was spinning. I was no longer alone in my challenges. That night I met people who have long since become some of my closest friends.

And I cried.

The water works started before my key even found my car ignition. I cried like I had never cried before. The pent-up fear, frustrations, anxiety, apartness and so much more I didn’t even have words for all came out. Red rimmed eyes met my Sarah at the door that night. She looked at me, and not saying a word, gave me a long and important hug.

From then on, the support group met once a month at the hospital. There have even been get-togethers at some of the homes of the regular members. Unless I am out of town, I never miss a meeting.

I cannot overstate how critical, how cathartic, and how vital to my own recovery these meetings have been. These days, we welcome all family members as well. Sarah is often by my side and others bring spouses, partners, and other family members. We have grown individually and grown as a group.

We have newer members who drive — or who are driven — from 20-30 miles away to be part of this cherished group. Though I have quite intentionally tried to forego giving any direct advice, I am going to deviate a bit here. If you have a brain injury, please find a group. You'll thank me for it.

Over the last year, we've had guest speakers, hours and hours of face-to-face sharing, and a new Facebook Group which lets us stay in touch with each other between the monthly meetings. That meeting that I initially left in tears, I now co-facilitate.

For the first couple of years, there was a perennial box of tissues at our meetings, often making its way up and down the full length of the table at every gathering. These days, there are more smiles and hugs than tears. We know each other. We love each other. People who have survived a brain injury are like that; we "get it" from living it.

These days, on my short drive home from our meetings, I find myself awash in gratitude. Grateful I am no longer alone.

 

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