Stories from the brainreels guests: Sue Pelzer and Karen Green with the family perspective

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I have a treat for this month’s Stories from the brainreels podcast: my family. I talked with my mom (Sue) and twin sister (Karen) about their experiences as family members of someone with TBI. It’s important because TBI doesn’t affect only the person who got it. Sure, the person with TBI might have more needs and accommodations requirements, but that doesn’t mean other people are having an easy time. They have their own mourning, confusion about what do to, and way too often, a deep-seated terror of disability. There are many things people can do to support us and help. But in the end, they can’t get in there and knit our brains back together. Nor can they single-handedly dismantle ableism and discrimination so we can get back to society without being judged. And so sometimes, family feels a little helpless, even as they might be viewing us as the ones who need help.

To be clear, I don’t think it’s OK for family to speak for or about a person with TBI unless the person with TBI wants that. Even when someone can’t speak in a conventional way, we want to be careful to not assume they’re voiceless. In the case where someone is in a coma, the family might be the very best people to advocate. But we don’t want to confuse advocacy with speaking for someone. Hopefully, we can find a balance by allowing everyone to speak to their own experience and to provide the supports each person needs to do that. I’m saying family should have the chance to tell their own stories and be heard.

There are lots of support groups in person and online across the country where peers with brain injury meet up, but way fewer family groups. That’s a real shame. I witnessed my family members grappling early on with what on earth to do with this person who is now a real weirdo and expects everyone to meet her every need. It wasn’t easy, and it still isn’t. But, I had never sat down and asked any of my family what it’s like for them to be brain injury community members. So now, I talked to two of them.

Something important to note is that Sue and Karen both mention in the podcast that they didn’t know what was going on for me until down the road when they came to visit. I actually was in phone and Skype contact and regularly emailed them with my stories, complaints, and sometimes the technical information doctors had given me. I drenched them in graphic descriptions of my problems and in information, yet their recollection is that they didn’t know what was happening. I am not judging them. What I’m saying is that even the most detailed storytelling can’t take the place of actually being with the person. You can tell and tell and tell till your head falls off. But don’t be surprised if in some cases that does very little good. This is why I’m wary of brain injury awareness events that emphasize storytelling of the crash or wreck over anything else.

It was through watching me fall apart like an utter fool in my first short comedy film, “Cooking with Brain Injury,” that gave them their first glimpse that made any real sense. (The film is fictionalized, but it’s all based on my very real reality.) It’s for this reason that “Who Am I To Stop It” will not be an unending series of interviews. You’re going to see and hear people in their everyday lives combined with storytelling. It just clicks better that way. But back to family. See how hard that is for me to keep my focus on them? Ugh.

Here’s a severe TBI survivor who’s totally on the family caregiver support wagon! Denise Pelletier writes a very nice post with ideas and resources for family caregivers on her site. I love that it’s coming from the survivor, not a practitioner who might have no personal or family experience with TBI. Something I especially love in her post is how she uses bold font to highlight the main points, no matter where they are in a sentence. This may seem cosmetic, but it’s not. I can imagine a family member stressed out of their mind because a loved one got injured, and it would be hard to read such a long post. Her fonts guide your eye to each point and each topic, which really works well to reduce reading fatigue or the sensation that you’re about to be overwhelmed just trying to find what you came for.

Please come on in and have a listen to me talking with Sue Pelzer and Karen Green, the first two people I ever met. And if you are a family member reading this, or you had a brain injury, and you worry about your family member’s well being, please consider that it’s totally OK to ask for and get support and assistance no matter who you are. The links on Denise’s website take you to a wide variety of resources that family members (whether they’re caregivers or not) might really enjoy.

Click here for anaccessible transcript of podcast episode #030.