In a recent conversation with my fellow TBI survivors, we were discussing ways that people can reach out and help us. The first few months after a concussion or traumatic brain injury (TBI) are critical. I know for myself personally, when I look back at the first six months I can see how completely dazed and confused I was.
However, the recovery from a TBI can last months to years. Every single brain injury is unique, and will not only take different recovery times, but will also present different symptoms depending on where the brain was injured. There is no "magic formula" and I know of those with severe TBI who fully recovered in a few years, while others with a mild TBI are still recovering many years later.
A TBI is much like a fingerprint or snowflake, no two are alike.
In addition, many "outsiders" have no idea what kind of hell we are going through. They hear the word "concussion" and think it's not big deal. Or they hear the term "traumatic brain injury" and can only imagine the most severe (think coma, bed ridden, not able to speak or walk) and figure if we're walking and talking then we must be doing "OK." Neither of these scenarios are correct, and I beg of you to try to understand what we're going through. At the very least, I offer you some suggestions on how to help us cope with this stressful and frustrating time of our life.
- Don't ask them what they need. We may not actually know "what" we need. Or we may feel embarrassed and don't want to be a burden or seem needy. Don't ask us if we'd like you to come over. We'll likely say no, but really mean yes. Just show up at our door with open arms.
Also know that we are in this for the long haul. We will still be struggling with the lasting effects of our injury for months, if not years, after the accident. Don't put pressure on your loved one that they "should" be feeling better. I am 18 months out and still suffer a great deal of fatigue and cognitive deficits, as well as regular headaches.
Also know that we tend to be incredibly emotional after a head injury, or possibly even aggressive. Be prepared that your generosity will elicit many emotions, some will cry, some will laugh, and some might possibly get angry with you. Don't take any of it personally, we are dealing with a very difficult injury, not to mention a complete change in our personality. Just know that you are doing the best you can for them and that they appreciate you no matter how they may react.
You may also enjoy reading "5 Things Every TBI Survivor Wants You to Understand"
You may also like to listen to my recent radio interview on Rose City Forum out of Portland, OR. We spend an hour talking about what it's like to have a TBI.
If you are a survivor or caregiver, I invite you to join our closed Facebook group, The TBI Tribe.