We Write Our Own Life Story

We Write Our Own Life Story

I remember vividly how lost I felt for weeks and months after Hugh’s accident when he could not talk to me because he was in a coma, and then when he could not relate to me because of his brain injury. I felt as if I had lost my emotional North Star, the connection to my alter ego, and the person who knew me best. Even as friends and family rejoiced that Hugh had survived, I wondered if he did, and I felt so guilty for feeling that way.

Months later, as I sat in the office of the director of Psychological Services at HealthSouth Rehab Hospital, I was told that it is not uncommon for the spouse of a loved one with TBI to feel as if his or her loved one had died. This feeling of loss and anguish is called ambiguous loss, and it’s considered one of the most serious losses anyone can face because there is no grieving process. In cases of TBI, it happens when the person you love is still with you, but radically changed.

Over time, Hugh grew more alert and could focus, and little by little his old personality traits began to come back. I was relieved at each familiar phrase he spoke from “our old life” and happy when he returned to some of his old habits. With the passage of more time, my own memories of our old relationship began to fade as we started new routines along with new ways of interacting and relating.

Now, many years later, it feels like we are more like our former selves again. Well, not really, but it doesn’t seem to matter. I’m often asked, “Is Hugh 100 percent now?” I usually answer, “No, he’s 200 percent.”

If there’s one thing I’ve learned, it’s that we write our own story. We structure our own truth, and we alone create the narrative of our own life. There are many ways of seeing any one moment in time, or any event. There are ways of framing the experience and the feeling. When a friend asked me, “What’s it like living with Hugh now that he has a brain injury?” I answered, “It’s like having an affair without cheating on my husband.”

Hugh had a terrible accident, and I went along for the ride. It was the hardest thing we ever went through, but we went through it together and we’ve grown from the struggle. What’s the takeaway here? It’s that no one can tell you how your story will end. No one knows. In the end, we all write our own story as only we can. Some may think our story is tragic while we see it quite differently.

I didn’t publish Learning by Accident to give people a happy ending, but to give them the courage to create a new beginning … to rebuild a new life as rich as the one they had before using the circumstances they find themselves in right now. And this holds true for all of the big troubles and traumas we face in life because sometimes a new beginning is the only option that will bring us happiness. It’s empowering when we finally learn that happiness does not spring from our life circumstances, but rather from the way we choose to see our circumstances.

Comments (12)

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My wife suffered her brain injury from surgery almost 7 years ago. She was 28 and our daughter was 6mths old My Angelia never came back -- not close. I live that "death" everyday even though I am now her guardian. Yes, the body is here but she never came home. I know there are more like me -- and I pray for all of you and your families. Charlie
It has been just over a year since my husband's brain injury from a motorcycle accident and like this story I see more and more of the old Charles coming back every day. He is a completely different person and yet exactly the same. The improvements he has made since the accident have been truly amazing. There are still many things that have to be overcome each day and maybe for the rest of his life but he doesn't give up. We are working now to try and deal with the depression, confusion, and memory issues which are an ongoing battle. I wish this accident had never happened but at the same time I wouldn't change him for the world. I'm so thankful to still have my love and my best friend...
We are in year 7. Initially I rejoiced that my husband kept coming back. Now, I am stuck in a rabbit hole. Physically he can't do a lot. Mentally he has no ambition to do a lot. And I found out he lied to me about something trivial from the beginning of our relationship. If he were well I'd have divorced him. He's not the same person, but I've given up my life to care for someone who I now know treated me in a way I can't accept. I have lost my ability to keep moving forward. The fact is, everything is my responsibility and frankly, I'm tired.
It has been more than 8 years since my husband's accident and I still grieve for what I call "life on the parallel" and my husband whom I married. It is the worst grief that I can imagine; a daily reminder that nothing is the same. My prayer is that we can establish a healthy relationship again, but it is the hardest part of the journey, especially in regards to our son who was born only five weeks after my husband's accident. Thank you for your words and your honestly. It is good to relate to someone!
I totally agree and could have never said it better than u. Kiddos.
My husband did not survive from bleeding in his brain. We did not expect he even had a bleed in his brain until he went into a coma and died.
My 19 yr old son is 10 mths post accident. Thank you for giving my struggle a name "ambiguous loss". Everyday he continues to recover but we are all forever changed. As a mom, I feel very responsible to protect him and help him get his life back. I ask God for help everyday to guide us through this unpredictably journey.
This is one of the most touching and relatable articles I have read. I am extremely close with my grandmom and my grandpop, they basically raised me. Since a recent tragedy in our family I search the internet for answers, support, or maybe just to fill a void. One year ago and two months almost to the date my grandfather suffered a life altering and debilitating stroke.. Well not totally. While he is suffering from brain injury and personality changes he is my poppop, my body guard when Mommom wants me to eat vegetables, my listening ear when as a 22 year old I struggle to pay my rent , work and persure a nursing degree. But he is there...maybe he can't tell me exactly what to do, but one look and I know everyone of his thoughts. He still dries his you car, still tells my grandmom "NO" and still wakes up with a smile after all he's been thru. We are making a new relationship, less verbal, but nonetheless loving then it ever was before. He is now my inspiration my guiding light and my story of hope. So thank you, thank you for sharing your story thank you for putting a name on my daily sadness. Ambiguous loss is real but we love him 200 % .... And that is one thing that will never change & I know my grandmom would agree.
My hero, my husband, my soul mate, suffered a catastrophic stroke almost 7 years ago. He went from a vibrant, loving, kind, giving, strong, connect man to someone who had to re-learn everything, from talking to walking to doing every day things. After 3 years of hard work he was walking with a cane (he had been told he would never be out of a wheel chair), talking passionately about things that concerned him, and, except for paralysis on his right side, was able to do many of the things he had done before. Then he seemed to back slide and it was determined that he had vascular dementia, from the stroke, which was causing petit mal seizures, due to a grand mal seizure at home. Since then he has slowly begun the decent that will eventually take him away from me and our children and grandchildren. He makes me laugh, cry and smile every single day. I am now do everything around the house and yard and am the responsible one. He took such care of me, his 'princess', for 40 years, and now, I take such care of him, my love, and will until he cannot safely be at home anymore. Yes, I have ranted at the powers that be but at the same time, thanked them for still allowing my love to still be such an important part of my life. We treasure every day, make every minute count and treasure the seconds we have left. My hero, my strength. Yes, I cry, I rant and rave. I am human after all. And I grieve and will until the day we will be together as angels, united with our parents, family members who have gone before us, and our beloved pets. Until then... treasure every second.
My brain injury and PTSD changed my life and my moms life drastically. I was very very angry for a long time. I have suffered greatly and know its going to get worse. Reading the Bible helped me tremendously. Anger was controlling my life. Brain injury and PTSD change you in a lot of ways especially your behavior and just the basic things of life. Kevin Strand
Just when I think that our story is the saddest, I read other stories and know that we are not alone in this new way of living. Perhaps that is the message that comes across the clearest - we each take one day at a time and remain hopeful that our loved one will somehow again become the person they were before their injury. All we can do is love them with all our hearts and support them in their journey. I do believe that the caregivers of BI survivors feel the loss and internal pain of losing their loved one in a deeper way than the survivor themselves. Thank you, Rosemary, for putting into words what we go through on a daily basis, and help us remember that we are not alone.
Hi I am 30 I would really like to talk to Hugh. I was in a bad accident its been nine months I was a construction supervisor and he will know what im talking about I have days when I can conquer the world and others I cant get the motivation to make breakfast. I know all are different I just would appreciate a talk if he has advice as u both know what it does to a family. My problem is im the polar opposite of my old personality and it confuses everyone.