If someone you love is dealing with a traumatic brain injury (TBI), you may want to offer support, but not know how. As a survivor of TBI, these are my thoughts on how to support a friend or family member going through this difficult experience.
Understanding traumatic brain injury begins by thinking about basic things we take for granted each day. You probably take for granted that when you wake up, you will go to sleep that night as the same person you were when you began your day. You thought the same thoughts, had the same feelings, dreams, goals and abilities as you did the day before. You expect that the next day you will still look at yourself in the mirror and recognize your face, body and voice as yours. You know yourself. Whether or not you like yourself, you have full recognition of your body, mind and spirit. You may not be content or satisfied with who you’ve become, but you understand how you got that way, and you think about what you need to do to change, grow and progress.
Now, imagine waking up one day and within the course of your normal activities, a blow to the head removes all that. Imagine your sense of self disappearing like a document in your computer that you forgot to save. You remember it, mostly, kinda. You search for it; you know it’s there, somewhere, but no matter how hard you search, you just can’t find it. So you try to make a new one, as close to the old one as possible, but all the subtle nuances and specific details are gone. All you can do is try to make copy of the “you” that used to be.
You may feel like an impostor. You may feel like you’re living someone else’s life, but it’s your life. You’re lonely for yourself. You feel lost.
Things that were so important before may have no meaning. Relationships that you once treasured can be difficult to connect with. You understand the meaning of the lyrics in Gordon Lightfoot’s song, “If You Could Read My Mind” because you walk around like a ghost in your own life “with chains around your feet,” agonizing because “the feeling’s gone and you just can’t get it back.”
Picture yourself getting into your car that only you drive, and suddenly, the seat is in the wrong position. You try the adjust it back to where you’ve always had it, but your most comfortable setting is gone. The steering wheel won’t tilt into place, and the HVAC system no longer has your temperature of choice. The radio has been reprogrammed without any station you recognize. The wipers stick and squeak. The defrost only works on one side of the window. The gas tank is on the other side. You try to drive it anyway, but no matter how hard you try, you just can’t get the speed up. You can’t see, your back hurts, it’s too cold/hot, the music is too loud, the wipers are driving you crazy, and you are so frustrated by everyone honking at you that you just pull over, put your head in your hands and cry.
Now imagine that car is your brain. That’s TBI.
7 Ways to Support a Loved One With Traumatic Brain Injury
1. Believe them. The pain is real. The fatigue is real. The confusion and mood changes aren’t their fault. It’s an injury. Treat it that way. Talk about depression and suicidal thoughts and feelings. I started a Facebook page that contains articles about TBI depression and other mental health issues.
2. Rehabilitation is vital. And it’s not all the same. Get your loved one into the best program you can find as soon as possible. If you’re in the USA, the Brain Injury Association of America has many resources on their website. It’s easy to get overwhelmed. Have your friends and family look for resources and do research for you. My friend Trina Chambers-Bradlee and I started a page to help others find financial help because I had a difficult time finding resources.
3. Not all concussion doctors are equal. Regardless of their status in the medical community, if you feel that the care is unsatisfactory for your situation, find another doctor.
4. An anti-inflammatory diet may be crucial. Fish oil shows evidence of being extremely helpful after brain injury. J.J. Virgin wrote a an e-book about her son’s recovery called “Walking Hope” in which she outlines how they used fish oil in his care. There are many functional medicine doctors and books online with more information about diet.
5. Join support groups. Whether they are in your rehabilitation center, online or at the hospital, support groups are vital to understanding TBI. Don’t try to get through this alone. Support groups will help you deal with all the things that the doctor doesn’t know or doesn’t have time to tell you.
6. Don’t give up. The more tools you put in your toolbox, the better you’ll be able to handle what’s happened. The more help you get for yourself, the more you’ll be able to help your loved one.
7. This is a life-changing event. However, there is life after TBI. The more you understand that you now have to put in extra effort for your loved one, the more enrichment you’ll both receive. Learning about TBI and experiencing it is like learning a new language for both of you. Think of yourselves as if you have suddenly been thrust into a new, strange country. The more you learn and adapt, the more opportunities you’ll have to rebuild a successful life together.
Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.
Lead photo source: Thinkstock Images.
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