Kindred Caregivers

We lovingly give care to our babies when they are born and we give care to our loved ones at the end of life, but seldom do we expect to be caregivers in between.

Marathon runners train for many months before competing in a race that will test their endurance, strength, and will to go on, but marathon caregivers enter their event with no preparation, unrealistic expectations — and often — with little knowledge of what this long-term event will mean.

Finding a kindred caregiver can make the brain injury journey much easier. One of the most difficult feelings I experienced in the first several months of Hugh’s brain injury was an intense feeling of isolation. A lot of people didn’t know what to say to me, they didn’t understand what brain injury was, and they had no idea how lost I felt or that I was experiencing ambiguous loss, because I was going through the motions of life.

“Are you okay?” people would ask me.

“I’m fine,” I’d answer. “I’m hanging in there.”

What else could I say? The truth would take years to explain.

I don’t blame anyone for this. There is a serious lack of information — and a reluctance to learn about brain injury. Why? Because it’s tragic and stigmatized. The old phrase “brain damage” from my youth was thought to be the worst fate anyone could ever befall. Brain damage was right up there with the other scary words: mental illness, insanity, and retardation. We’ve come a long way in this country when it comes to understanding many diseases, but we have not come far enough to erase the stigma associated with these “brain” words.

People think: This is not happening to me. Thank God! I don’t want to think about it.

When Hugh got hit on his bicycle in 2002, there was no community online to connect with about brain injury — or at least I didn’t know of one. I did turn to the Brain Injury Association and I was grateful to find articles on their site, but I had no friend or family member who could relate to me, to my feelings, to my fears. No one I knew had been through this kind of injury.

I’m happy to report that this is no longer the case. There are many discussion boards, Facebook pages, and Twitter feeds dedicated to TBI, and people are sharing information and encouraging each other online. I’ll admit this: I feel intimately connected to a few women I’ve met on Facebook in the past few years who have been on the same journey as I’ve been on, and there’s a deep understanding we share that’s important for healing.

I’ll be forever grateful to BrainLine for looking at TBI from all sides — from parents taking care of a child or teen with TBI, from a husband’s perspectives or a wife’s perspective, from a sibling perspective, daughter or son perspective, and many clinical perspectives. Because not only is every injury different, but each one is experienced differently depending upon the intimate relationships affected.

Finding that similar person with a similar circumstance, as I did, helps immensely. I call this a “kindred caregiver.” In my case, I’ve met a few women whose husbands were cyclists (or active) and they had teenage children at the time of the injury. I found we had a million things to talk about, and we could boost each other up and give each other advice in a way no one else could.

In fact, just knowing someone else was out there who understood how I felt made me feel instantly better. It’s like having an affair of the heart; you know what the other person has endured, and that alone connects you.

If you are a caregiver for a person with a brain injury, I urge you to seek out your kindred caregiver. You can find this person online — maybe right here! — or at a support group, caregiver forum, or TBI conference.

And don’t be surprised if this new friend becomes a dear friend for life.