It’s hard to believe it’s been more than four years since I became a regular contributor to Brainline.org. Every month when I sit down to write, there is one question that guides me: what do folks in the brain injury community need to hear?
Often times I feel poorly equipped to try to answer this question. My family is five years post-brain injury and while TBI is an ever-present challenge in our lives, we have been enormously lucky to have returned to a lifestyle not so different from the one we enjoyed pre-injury. The same is not true for everyone I’ve met along the way. For some, relationships have crumbled. Illness abounds. Recovery dawdles forward microscopically, creating frustration, impatience, and fear for the future. Each injury is different. Each life is different. Sometimes the task of speaking to the diversity within the TBI community is daunting and I’d be content just to pass the mic.
But over the past few weeks I’ve been thinking a lot about what led me to Brainline.org in the first place. I first discovered this website as a reader, not a writer. It was about six months after my husband TC’s violent assault and I was doing what I always did late at night: conducting internet research on brain injury. Most of my inquiries went nowhere, or rather they went to medical links and fancy statistics and generalized information that I couldn’t quite figure out how to apply to my own life. What I was looking for was something else. Something I hadn’t quite defined for myself. Something that spoke to the human experience of watching a loved one suffer through brain injury.
Six months into TBI, life was pretty grim. TC had just relearned to walk, but his communication skills were greatly impaired, limited by severe aphasia. We were both unemployed, living in a tiny, rented cottage hours from our home in Washington, D.C., and doing our best just to make it through each day. Looking back, I can see with clarity that it was the darkest time I’ve ever walked through, but back then, I didn’t have the luxury of deep introspection. I wanted – scratch that – needed comfort. And I needed it from someone who understood.
And then I came across a video of Rosemary and Hugh Rawlins talking about their brain injury journey. Two people who had walked the hellish road of recovery together and made it out alive to tell the story. Their marriage had survived. Their children had survived. It hadn’t been easy, but they hadn’t folded their cards and resigned from life. In that moment, it seemed possible that with grit and patience and focus, we just might make it too.
I’ve known Rosemary for years now, but I’m not sure she’ll ever understand how grateful I am for the hope she inspired in me when she made the courageous decision to tell her story. I was desperate to believe in the possibility of a happy ending, and even though there was no guarantee my story would turn out anything like hers, her life was evidence that it was possible and that alone filled me with determination.
So what do readers in the brain injury world want?
I can only guess that like me; they want it all. Practical solutions for how to help our partner and ourselves. Resources and references to connect us to the world’s experts. A place to vent. A place to grieve. A place to interact with people who “get it.” And above all, a place to be human, where we don’t have to pretend to be anything other than our messy, hurting, hopeful selves. Where we can feel validated because every experience counts and every emotion is honored.
As a blogger and a speaker in the brain injury world, I am often asked my advice for specific TBI problems: where to go for speech therapy, how long it takes for a survivor to regain specific skills or awareness. And every time a question comes my way, I feel a deep longing and responsibility to be able to offer the perfect answer.
But the truth is, I don’t have them.
I am not a doctor or a therapist or a researcher or a clinician. I am you. Someone walking the path. Someone living with fear and uncertainty about the future. Someone who has felt the burning scald of loneliness, the bitter sting of exclusion, and the unraveling ache of sadness. Someone who, despite all the challenges, is blindly hopeful, who treasures every happy ending and hard-won battle. Someone who will never stop believing that there is life after brain injury if you’re willing to reinvent yourself.
So, readers, what I want you to know this month is this: I don’t know the details of your story or the injury that has transformed your life. I can’t offer you certainty or brilliance or solutions. But I care. And I will always do my best to keep it real for you. There is no type of darkness on this path that ever merits shame. And we don’t have to use platitudes to make it easier for others to digest. Brain injury is hard. The best gifts we can offer each other are honesty, truth-telling, and the wisdom of our own experiences.
This is a place where we can be real.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Heather replied on Permalink
It’s so good to hear this from a loved one of a TBI survivor. My boyfriend and I have been together for just over four years. We met shortly after my TBI. I hadn’t started to feel or notice anything right away except anxiety and exhaustion. He saw and was getting to know “me.” We has a good time and the changes started occurring. I was having a good time hanging out with him and his friends. My friends were non existent so was my family. It was nice to be excepted and liked by them all. I was working two jobs in very different positions. Customer service in a shop at the downtown mall, in Anchorage, AK and a childcare center also in Anchorage. Things started falling apart so rapidly I couldn’t sleep, fear of retaliation from the person who caused my TBI. Staying with a friend who was awful to getting my own place and knowing I can’t afford it. Going to the Salvation Army for food, typical bills, fender bender that nearly totaled my car. Having to go to one job full time and be responsible for the molding room in a chocolate studio. I was still ok. I figured the concussion is the cause and no doubt I have PTSD. I ended up moving in with my boyfriend only into four months of dating. It turned upside down before long. My ex beat me up one night. I can’t recall the entire situation. Being punched in the face, and strangled to near unconsciousness three times moments apart I would imagine. The last time he strangled me he slammed the back of my head against the hardwood floor several times. He considered us both alpha males and I didn’t see that as a threat. I had always stood my ground with others. Two other concussions that are documented and a history of seizures in my youth. I was terrified! Ended up quitting my job due to the duties and hours being overkill. My boyfriend was being helpful. We had to even some things out and he had to grow up. He struggled with that, but managed to hold his composure. I started lashing out and feeling so beyond scared I could barely be alone. The steps in helping myself were right away. I didn’t hesitate, I knew there was more to how I was feeling. The Dr.s were so unhelpful, I couldn’t believe it! That went on for 3 1/2 years, so did my boyfriend and I. I noticed changes in him two years ago that were persistent. It felt so bad knowing I caused it. He had been quite a free spirit to quiet and distant. We managed and fought, I fought... I had never spoken to or treated anyone like I treated him at times. It was never in my nature. We find out it’s a TBI I think about, over a year into the mess. He really tried and surprised me with his loving patience. During the past six months we are not doing good. I don’t think we have even had the chance to yet. I started treatment then for so many different problems and disabilities I didn’t think it possible that this care would work. It did though, within three months I went back to work. A Montessori school. Since I started treatment my boyfriend began to lay out in ways. Rude, thoughtless, negative, a lot I had not seen before. He finally after five months tells me his reason is “It’s been a long hard road.” I agree with him it has. For five months though, I have had been making so much progress, improvements. Not being so dependent, losing weight, confidence, happiness. I understand his need to be heard. I’d appreciate it if he would talk to me about it and sober would be nice. The past six months of tension started a set back a little over a month ago. He and I are trying to work this out. The in and out of connection is tough. He had my life completely inflicted on him. There is so much guilt associated for how I was. My patience have withered with the continued poking of me. The set back caused me to take my hours at work down to part time, I had to take a couple of days off here and there to rest. Worries that I’m a bother there. I’m getting 4-5 hours of sleep a night, vertigo, menstrual cycles back to back spacing under two weeks apart. There are no batteries left. There is so much I have to do and no energy to do it. There are 22 hours of training through Penn State for the Montessori I work at, due on the 31st. There’s no focus. It’s hard anyway. Remembering what I’ve just read. Pressure at work and a lack of understanding of a TBI. Total regression. How do I acknowledge and help his pain when I’m flattened? I want to do what I can to continue progress for us. Keep my job and feel better again. If he’d go out with friends, do things he enjoys, take his mind off of me. He would be happier, but he won’t. I don’t know what to do. I love him deeply. I know he loves me too. That isn’t enough, it only part of being with someone. There is so much more. Sorry to babble on. As a spouse of a TBI survivor, any advice on what I can do? I’m at a loss.