The past 2.5 years I've been dealing with the aftermath of my injuries alone, with the help of loved ones. Unfortunately, as sympathetic as they could be to your pain, trying to explain what you're going through is tough beyond belief. How do you explain to someone what the 24/7 fog is? What it's like to have a headache at all times of the day, and how your fear of gaining weight is reciprocated with a migraine when you try to do as many as 5 squats in one go. They can give you a shoulder to cry on, try to uplift your spirits, and make a million suggestions they think are helpful, but you know will only end in headaches.
It is important to find someone who understands - and you can only really understand if you've been there. I have recently come across a Facebook group that is exactly that. It is about 2500 people who all have had some sort of TBI (traumatic brain injury) and are all undergoing the same symptoms. I've decided to post a few questions that have been gnawing at me - from medication advice, to fitness, to hobbies, abilities, and motivation issues.
I cannot begin to explain the flood of answers from people agreeing and providing personal experiences, nor how it made me feel. There are no words. I've started this project to raise awareness because I've felt alone, and here is this lost city, "tribe" if you will, of people who are all in the same boat. They share stories daily f what they overcome, ask questions to see if anyone can relate, and overall just send positive thoughts to each other at every minute of the day.
It's a beautiful thing to see, and I figured a thank you blog post to them is appropriate after my last one.
So, thank you.
Thank you for not being judgemental.
Thank you for letting us all rant and listening.
Thank you for your advice.
But above all, thank you for the positive thoughts and hope you've provided. Even those who've been dealing with this for over a decade - the optimism is contagious and it's a beautiful thing to see when you feel you're at a road's end.
Thank you.
6 comments
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The tribe is amazing I have been on my own dealing with my partners tbi and found the tribe they give the support and advice that up lifts you each day and have made a large difference in my quest to save my partner they are. There at anytime for survivers and their carers an amazing group of people
tommy
As a fellow member of “The Tribe” it is a wonderful place. I got my first help from Australia, Now a US FB page is the first thing look to everyday. I am in Ireland, so it shows we do stretch around the world to help each other. I try and help people and post stuff for help and advice or for others to learn from some of the things I have done. Not mistakes, just learning not to do it that way again. It is lonely as a survivor but not so much anymore. It is nice to have somewhere safe and that is a safe place for all of us. No competition or rivalry just good people trying to help each other. Wonderful feeling I had not had for many years.
Gary
I agree about the Facebook site. As a mother of a son who got his TBI in 2003. I believed my son when he told me about his difficulties and I watched him suffer. Nothing I did really seemed to help him much…except my acceptance of him and my unconditional love. Because of the Tribe, I’m able to understand on a much deeper level what he’s been trying to tell me. The Tribe is a blessing, as are you for your honesty.
Alice