One of the most important discoveries I have made since my severe TBI is the existence of an absolutely amazing global community of brain injury survivors, caregivers, medical professionals, and support groups. Our recovery and healing process after a brain injury is a huge struggle that most of us started out fighting with almost no real understanding of what we were up against. Connecting with our community can help in many ways.
Finding my Community
The first step towards discovering this community was me working with my girlfriend to help her start a blog. I knew little to nothing about even what a blog really was, much less how one was started. I clearly recognize that with how my brain works now, I seem to learn better by doing something rather than reading about how it’s supposed to be done. To give myself a playground to learn in, I grabbed my own web space and started working, which then enabled me to be of more help to her. Since I now had this web space, she suggested that I consider starting a blog where I could share things I’ve learned along the way with others that are either TBI survivors or caregivers. That’s what started the next leg of my journey and how I started this blog.
Marcie is an educator and researcher, so she tends to look at things with a well-trained analytical perspective. In her research she discovered that social media is commonly used to spread awareness and gain recognition for a blog. She shared her findings, and so begins Twitter for me…
And what exactly is a Hash Tag, anyways?
Yes, I was one of those people who had never participated in social media. My uninformed perspective told me that Twitter was only where trolls live, people trash talk each other, and foreign policy is debated by politicians, but I started an account so I could understand a little more.
Here’s what I’ve learned… Twitter has a lot of stuff on it I just ignore and avoid. My first search was for the term TBI, which produced far more results that I expected. There is a global community available on Twitter comprised of brain injury survivors, caregivers, and concerned professionals. Those who participate in this community share an amazing number of links to resources that offer information, guidance, and inspiration for people with brain injuries and caregivers alike.
If you already use Twitter, you already know what a hashtag is and how it’s used. If there’s anyone else out there who, like me, is new to this arena, hashtags are used to group conversational content. They can be used to find topics of interest or to place your own posts in groupings of similar content. In the interest of staying on topic here, I’ll stop short of a Twitter class and simply share a collection of hashtags I’ve come across that can be used to find brain injury content:
| #braininjury | #concussion | #concussionrecovery |
| #tbi | #postconcussionsyndrome | #cte |
| #abi | #tbitalk | |
| #tbisupport | #tbihelp |
If you already have a Twitter account, connecting with this community can point you to resources both on the internet and local resources in your own community. If you don’t yet have an account, you may want to consider creating an account and seeing what’s out there. Using the search tool helps to connect you with relevant resources, either using hashtags or just plain language searches. For example, a plain text search for “brain injury” displays these results:
Picking the option at the bottom, “Search all people for brain injury” shows pages of results like this:
I encourage those with brain injury and their caregivers to explore these avenues. Of course, we always need to be careful with any brand of social media, but if there’s anyone or anything you find offensive you can block that content from showing up for you. And if you are inexperienced with social media or the internet in general, always reach out to someone you trust for guidance.
And what about Instagram and Facebook?
Whoa, slow down now. I’m a one step at a time guy… I started an Instagram account but I’m not yet sure how to best use it, and I’m thinking I may need to start my Facebook account as well, but that’s down the road for me. I do recognize that I have limits now, and if I get too much going on it will become overwhelming for me and then it will all most likely languish. I need to find the tools that work for me and stick with those. For now, Twitter is enough for me to keep up with in this area. I’ve met a great group of people (and yes, a few questionable ones) and learned of so many valuable resources and organizations.
Closing Thoughts
Our medical professionals may not always fully understand the deeper and longer lasting issues that come with a brain injury – at least that was true for me. Connecting with this community pointed me to resources and information that helped me to start asking better questions, which finally got me referred to the local brain injury clinic where I received therapy and rehabilitation that helped with some of my biggest challenges. The brain injury community is a global resource with local relevance that can benefit every individual who connects. Whether you start online or by making a phone call to your local brain injury support group, it is so important for brain injury survivors and caregivers alike to connect with this community.
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