Tips from a TBI Survivor
Some days it feels like my traumatic brain injury has won. Like I was transferred into someone else’s body with a completely different outlook and even a different personality. Luckily a good support team and a few hard-learned tips help me move forward (and laterally at times) on this crazy journey of a TBI.
- Life is going to change drastically now. You will have many bad days, many “one step forward, two steps backward” moments, and countless “why me?” utterances. Whatever you do, don’t give up. The only way to get better is to work at it, even if that means lying under your covers in a dark room at one o’clock in the afternoon.
- Prepare yourself for hearing “you don’t look sick” and “you look fine” all the time. Better yet, prepare your response now. “I know I don’t look sick,” I would say. “My brain is still in my head. If it were in a jar, though, you’d be saying something different.” People don’t always remember that some injuries aren’t visible (sigh).
- Remember that you won’t always remember dates, like your daughter’s birthday or even tomorrow’s doctor appointment. Calendars or other tracking methods are your friend! Write down dates immediately after setting them or you risk crying later, “I never used to be like this!”
- The doctor’s office (or pizza delivery place) needs your home address? Keep a card handy with your home address, phone number, email, and any other details they may ask for that you’d normally have memorized. Brain injuries really screw up your independence, so our best tool of combat is preparation. Put that card on your fridge. And then make another one for your wallet or purse. And another one for the bedroom—you really can’t be too prepared!
- Discuss with your family members on a regular basis your progress (or feeling of lack of progress) so they always know how you’re doing. I keep a journal of day to day symptoms, moods, and goals or setbacks. It’s easier for me to talk to my doctor about my progress this way too. Once I write it all out, I feel better too. A few less things to remember when the doctor asks about any new symptoms from medications and I can’t remember on the spot.
- Also discuss with your family/support system that your moods may be unpredictable at times. There were days when simply trying to unload the dishwasher would bring about sobs. Sometimes my emotions would alienate me from my family until we had a heart-to-heart and I revealed that I didn’t feel like ‘me’ anymore and sometimes I didn’t know where these spells would come from. Rather than feeling frustrated as the recipient of said emotion, this helped my sister to understand and sympathize. Instead of yelling “why can’t you get over this?!”, her tone is now “It’s okay, sis. You’re allowed to have an off day. Take a breath and take five.” Who can argue with that acceptance and compassion? Not me. I am grateful for my loving support system, especially for loving me when I wasn’t very lovable.
- Give yourself every chance to heal. This includes your diet. More leafy greens—like, lots more. Fruit, tons of water, all those good things you know you’re supposed to eat. When I did my first month of clean eating, I had and saw a good amount of progress in my mental state. And when I cheated? I felt that right away! For me, having a TBI means making only healthy decisions for the rest of my life. So long, Taco Bell…
- Keep track (again) of your treatments and look into every lead. What works for one person may not for another. I was trying all kinds of migraine meds with little luck. I just happened to hear about another TBI survivor’s story on a Facebook forum that had everything to do with her eyes. I had already tried vision therapy without much luck, but this person’s story had a different twist…I looked into it, researched it myself, and took the online questionnaire. Three months later, I’d flown to Michigan to see Vision Specialists of Michigan and left with aligning glasses. My entire life is changing, in a good way, as a result. If I hadn’t caught this woman’s story on Facebook, I wouldn’t have known that I have a vision misalignment—one that vision therapy wasn’t going to help. I write down every new treatment, medicine, or specialist I hear now—just in case.
- Whether it’s to rail against your insurance because they’re really screwing you over, to write a letter to an estranged sibling, or even a phone call to a hotline—just keep talking and sharing. Keep fighting your fight—our fight—the TBI fight. So much is unknown about our injuries. In an age where we can Google and find an answer for almost anything, it’s especially frustrating and depressing to learn our own brains are one of the exceptions. So we have to keep fighting, learning, and trying. What we discover today will be the answers others so desperately need tomorrow.
What tips would you offer a person who is newly set on the path of a TBI?
-Mary S., a TBI Survivor and (happy) VSM patient