To the Kids

To the Kids

Since I’ve published He Never Liked Cake and done a little public speaking on the topic of having a brain injury in my family, I’ve received a handful of e-mails and Facebook messages asking advice on … well, I suppose you could say, how I roll with it. So think of this as a letter to all of you like me. I’ve written a few emails to those of you who have asked me advice. Think of the below as a compilation. Take it or leave it, and know that some of this is stuff even I don’t want to hear.

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Dear you:

Wow, does my heart ever go out you. It's hard to express in words how much I truly understand what you are going through. It hurts so much, because damn ... I don't wish this upon anyone on earth. So I'm going to be as honest as humanly possible. Some of it might sound ludicrous or cliché, but I'm simply sharing with you what has worked for me.

Brain injury is your past. That is hardly something I share with anyone, but the truth of the matter is that you are the kid, and you have your entire life ahead of you. You can still have a family without a brain injury. You have everything you can ever possibly hope to endeavor in front of you. Remember that. I look at my mom (caregiver extraordinaire) and my dad (with his brain injury) and I feel incredibly sad, because it is the future of their lives, their marriage. I mean, I hate it, which makes it a challenge to remind myself that this my own past. Yet, remembering that it is behind me is sometimes the only thing that has kept me afloat. I get the bad first, then the good.

Don't let it rob you. Not of anything, not ever again. You can always think of yourself as strong or different or built with more character, but do not let yourself be less because of your dad's (or your mom’s) broken brain. You're not alone if you think you coulda-done-it-better — be it college, friendships, first jobs, current jobs, relationships, romances, pursuits of dreams. But do not fool yourself into using blame for what you didn’t do, who you couldn't be. For years, I blamed my dad's injury on my crappy relationships, like it robbed me of a happy relationship with a good boyfriend. Nice try, Janna Marie. Only I can rob myself of that. And wow did that take me a long time to begin to learn. 

Forgive yourself. For absolutely everything. For saying terrible things, for thinking them. Forgive yourself for your lack of motivation, for not handling brain injury the way that you wish you could have. And forgive yourself for whatever it is that you think you should be able to do but can't… Live at home. Stop crying. Be stronger. Hate this less. Figure it out. Fix it. Stay close. Forget it. Love easier. Know that all of what you feel and do is okay. It's a process, and you're working through it. If you think death might have been easier — that's okay. If you want to not have to deal with any of it — that's okay. If you can’t stop wishing and wishing and wishing it never ever happened — that’s okay. Really, it's all okay to feel whatever you feel. 

Love yourself. For the longest time (well into many of my drafts of my own story) I thought that I had to learn to love my dad to love myself. And I couldn't figure out how to do that. I was 25, and I wasn’t sure if I even really liked him. I was so angry, lost, incomplete. But I had it backwards. I had to learn to love myself first. So begin there — love yourself. Whatever it takes. Generally, it takes being selfish. Always putting yourself first, learning to say no, even if you wouldn't normally, or if other people don't understand. Build up you, and then you will begin to see you have all the reserve in the world to handle the rest. And one day you might love your dad (your mom) for all that he or she is in a way you never knew you were capable of. But, for now, it's all about you. 

Find the thing you love. For me, it's yoga. It's a challenge, a release, a fulcrum, a solitude, a community, an intensity all wrapped into one. It’s all mine. It teaches me, and it’s fun to play with. So yeah, maybe you’re not totally into your mat and your mala beads, and maybe arm balances aren’t your party trick, and backbends don’t calm your soul. But there is something that is all of those things for you. Go find it. Let that one thing lead you out of the lack of motivation and the anger and the eating and the scared and far away from that place you don’t want to be. Let it be the thing that takes care of you with you. 

Know that this oscillates. We children are in a tough spot when it comes to this stuff. Space hurts and space helps. Responsibilities are a choice we make. Few things remain consistent or constant — situations, therapies, families, and not even your own thoughts and feelings stay the same. Sometimes I am comfortable in the thick of my parents' lives. Sometimes I want to run to the ends of earth away from it. Still, today. It’s always changing and that’s the constant.

Cry. Seriously, you will feel so much better. I'm sure it will feel terrible and weird at first, especially if crying is just not your thing. But good lord, let stuff go. You have to, otherwise all of these feelings will stick with you forever and you will feel weighted down and crazy and trapped and alone. I know. I've been there. And if you feel silly when you are crying alone, know that it's what emotionally healthy women and men do all the time. And, if you want to cry with someone about brain injury, you can cry with me. We can cry over the phone or over beer or wine or whatever you’d like about our parents with brain injuries. You'll feel better. I promise.

Much love,


Comments (10)

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You are an inspirational young woman. This is really good, in fact I'm saving this for my daughter, I had a mTBI and she just turned 9. While it's hard for me to deal with myself, I can't imagine being a child and going thru this with my parent. It definitely makes me take a step back and look closer at the way we handle things here. Also, I think a lot of the advice works for the injured as well. Sometimes it takes seeing from a different perspective to be able to change things up a bit to make things better. Thank You for writing this!!
Thank you so much for writing this. I'm 19 and my father is dealing with TBI from a motorcycle accident nine months ago. I'm at college three and a half hours away from home. It's hard to be away, knowing how difficult it is for my mom and grandma to take care of him, work, pay the bills, clean the house, schedule appointments, deal with insurance...on top of the heartbreaking struggle the three of them go through on a daily basis. I've felt guilty for being away. Like I don't deserve to be so far away when they need me. I've broken down and cried and questioned why any of what I'm doing matters. But I've also felt guilty for NOT wanting to be home...because it's a relief to be away from all of that sometimes....but you're so right. As much as it hurts to think of it this way, that's their future, their life that they're dealing with, and although I will support every way I can, I still have my own future. A non-TBI future. Plus, Dad has been recovering very quickly....must always remember that we're lucky he's still here. And I'm lucky to be in school. And we're all lucky we have each other.
Wow Janna!!! You are so right on!!! My daughter and I feel very fortunate that we got to meet you and hear you speak. We both reflect back on your words often! Thanks from all of us ......families of TBI..... You truly are an inspiration! Love your book too! Our stories are amazing very similar!
Thank you so much for your comments. They make me cry, in a good way. It's so hard to be out there alone (kinda, sometimes, for us kids) and trying to figure out what kind of daughter or son to be that best serves everyone--ourself included. Sometimes we just need to get down and dirty and honest and go from there. I'm glad these words are able to help. I sure as heck took over a decade to find them myself!
I love this! Abit late for me to learn from this (my accident was almost 18 years ago) but I have fortunate enough to make a full recovery and now helping other TBI survivors online and where I live. Alot of children/young adults will look up to you, well done :)
As a mom of two with TBI when they were in their in their teens, was horrible. For them. Just when you need certain things, and have someone around who can handle what teens need, I was only there is body. It was hard for them to believe I wasn't doing things to make their life miserable or do things that were just plain dumb. I stayed in trouble more than they did! But, I knew they were trying to cope, trying to figure it out, and trying to believe the unbelievable Think about it.... if no one else really believes, then why would it be easy for them to believe. I tried talking, but that wasn't what they needed. But I"m not sure being quiet was either. I think a serious "around the table" meeting was needed. but there wasn't time for that either. I knew teens have a hard time looking beyong the "me". "Me" is what life is still all about, and this was very had training. My heart aches for children who can't quite put their finger on things. If only they understood what they hated - we hate too. If only they understood we want to "be there" just as bad as they want us to "be there". There is anger at times, frustration, maybe even feeling hopeless. And I hated they had to feel those feelings towards me. As a parent it's hard not to feel like the "throw away parent", and one does more than they are supposed to - to make it into their "club". Their anquish must be hard, because ours is distrasterous. But for those who are going through this, just love your parent always. Don't forget that they love you and you family (if that exists). They live for you everyday in their minds, and have to somehow disconnect so not to hinder you from life. Some children can figure it out and some struggle. But, what a good lesson to learn in life that others need you just as you need them. The forgotten mom. .
That was beautiful. I suffered tbi 5 years ago. It's only been a couple years that I've started to understand. My son (in his 20's) keeps uprooting and moving back to help his step-dad with me. He's done this each year and it has basically put his life on hold. This time he moved back and is staying permanently. I'm improving. I didn't realize what my son might be going through internally. I could see loss of jobs, friends, relationships, school etc. I appreciate your honest writing. Thank you.
Thank you so much for this incredibly moving article. You've brought me to tears because everything you've said is so accurate and exactly how I'm feeling. My dad is suffering from a brain injury after a skiing accident last year and I haven't been coping well. This has made me feel so much less alone and that my future is going to be brighter than what the current situation is
I'm laying in bed, reading this with tears string down my cheeks. I wish it hadn't taken me so long to seek support. My father's accident happened 26 years ago when I was 9. He was drunk and thought he could drive home. It tore my family apart. He became violent and abusive after he came home which led to more horrible things happening for pretty much everyone involved. I had to cut off relations with him when I was 18. Only in the last couple of years have I been able to really start to process the trauma and grief of not only losing my father but handling the aftermath of his brain injury. Tonight is literally the first time I've ever even looked for resources. I am so comforted to find other people who can understand.

Hi Anonymous (and Janna and everyone here)... it's been almost exactly two years since this comment I'm responding to was written, but I came across it today and had to respond because between your comment and Janna's story, I relate so much. My dad was also in a drunk driving accident, but his happened in 1976, six years before I was born. The science on TBIs back then was nowhere near what it is today, and the effects of his brain injury would evolve slowly but progressively over the course of his life.

When I was very young, he'd stay out late after work and not call to let my mom know when he'd be home, and I'd hear her panicking and their ultimate fights when he finally got home. I didn't know until just recently that one of the things TBI can cause is impulsiveness and disinhibition, and I'd spent years wondering why he continued to act like an 18-year-old kid after he'd grown up and had a family, especially after he'd been so lucky to live through that car accident.

Then probably at least ten years after his accident, he started having seizures at night. If he had them before then, I don't have memories of them or of my mom being terrified like my memory of the first time. His short-term memory was not great... we had sheets of paper everywhere where he'd write down when he took his pills so he'd remember he took them.

He really started to seem worse after I graduated from college. You could have a conversation with him and the same one a few hours later and it would be like having it for the first time. It seemed like he had no joy or ambition in his life, and you had to argue with him to get him to shower and take care of himself, when before he'd been so meticulous about his routine.

My dad passed away suddenly when I was 29. My youngest brother was still in college. It wasn't even related to his TBI at all. It was a pulmonary embolism and completely unexpected. His health issues and hospital trips had been routine our whole lives and then suddenly one time the ambulance coming to the house was not routine. I've felt guilty that I've learned so much more about TBIs in the years since then, how they can cause depression and personality changes, how a lot of his worst qualities probably weren't things he could control, and I think about what we could have done differently, or what would've happened if his accident occurred even 10 years later when people knew more about how to educate families about the realities of TBI. I've read about Janna's yoga practice with her dad and wish I could give my dad some of that and go to therapy with him. And I know that I can't blame myself, and consciously I don't, but then there's moments where I just feel such regret.

I need to stop writing now because my comment is likely longer than the post itself. I think this is the first time I came across people who know what it's like and I felt the need to share all the things.