The Think Piece Interview: Rosemary Rawlins

It was April 2002. A beautiful Saturday morning in Glen Allen, Virginia. Rosemary Rawlins was unpacking groceries, her twin 13-year-old girls were entertaining themselves, her husband, Hugh, was putting some miles on his bicycle. Then the call came in. Hugh had been struck by a car and thrown 100 feet. He had suffered a traumatic brain injury (TBI) and she should get to the hospital immediately; there was a chance he wouldn’t make it. But he did, after the hospital removed part of his skull and stored it in a freezer and he relearned to do everything. And so did she. Theirs is a remarkable story, and one she documents in her acclaimed 2011 book Learning by Accident, and in her single for us, Beneath the Armor: A Caregiver’s Story. We asked her about the writing of the book, how it helped her mental health, and what she passes on to couples going through recovery from trauma.

TP: Hugh’s accident was in 2002 and your book Learning by Accident came out in 2011. How did the book happen? Did you start writing things down immediately after Hugh’s accident in 2011? Was it cathartic to you?

RR: Learning by Accident grew out of a journal I started in the ICU after a nurse suggested I keep notes because Hugh would not remember anything when he woke up.  I quickly became obsessed with my journal. It was supposed to be a way of recording events and keeping track, but I found myself pouring my heart into it, saying what I couldn’t say to anyone else, and writing directly to Hugh since I could not connect to him in the beginning. I wrote frequently in my journal for two years.

TP: How did you set about turning your journal into a book?

RR: I worked on it intensely in 2003 and 2004, but I didn’t have the skills to write a decent book, so I put it away. I returned to school planning to get a corporate business job if Hugh could not return to work, and then my parents fell ill. Every now and then I would return to the book, but I had very little time. In May 2008 I graduated with a BS in HR Management, and by then, Hugh was back to work and he supported the idea of my working on the book while I continued to take care of my parents. I joined the James River Writers and a writing group of five talented writers to hone my writing skills, working steadily on the book in 2009 and 2010. Piecing all of that together, I guess you could say I worked on it for a good five years.

TP: How does Hugh feel about the book?

RR: Hugh is very supportive of the book and he loves to join me when I give talks to medical groups, particularly students. We have presented our story a few times to graduate students in the School of Occupational Therapy at Virginia Commonwealth University, and we’ve been invited to speak at its pinning ceremony this year at graduation. Hugh feels that the more honest and open we are about the experience, the more people will connect to it, and perhaps others with TBI and their caregivers will feel less isolated and more hopeful.

TP: How has been the reaction for you in the TBI community?

RR: It has been tremendous. People are generally blown away by Hugh’s progress and he offers a great deal of hope to those at the beginning of this journey. Caregivers also connect to the secondary stress I experienced from what I call marathon caregiving.

TP: Can you tell us about a friendship you’ve made from someone who’s reached out to you share their story?

We’ve made several friendships and there are some amazing people that visit my Facebook page every day. One woman recently messaged me saying that our story inspired her to work on her marriage. She was ready to give up, had depression, but because of the book, and my blog at BrainLine.org, she learned that there was counseling to help couples after brain injury. I’ve also met many talented writers through my work with the book and we all help each other because ultimately, we all just want to get the word out about TBI and promote more understanding in the public about it so more research can be started and funds raised to help families.

TP: What do you know now that you wish you had known right after the accident?

RR: I wish I had been more proactive about finding a mentor, someone who had been through what I was going through to talk to. I didn’t know how to reach out or where to find people going through this and I felt so alone. Facebook is truly incredible in this regard. Technology has really enabled people of various causes to find each other and help each other along the way.

TP: How is Hugh doing today in relation to that first year? Are the rituals and cues that he learned to do things back then still with him?

RR: Hugh no longer requires prompting but he does still use some memory strategies he learned in rehab and he works hard to stay cognitively sharp. First and foremost, he tries to stay physically fit, because we both believe that exercise benefits his brain as much as his body. He’s working a full-time demanding executive job, and he has also been attending MBA classes at night for years and has had to study very hard. He is a great napper and can drop off to sleep on a moment’s notice. This helps him with cognitive fatigue, but it doesn’t affect his performance. He will graduate with his MBA in finance this May.

TP: That’s quite remarkable. How about his recollection of the past? Has Hugh been able to retain his database of memories from before the accident or are they lost to him?

RR: As a direct result of the accident, he lost about a month of memory, almost a complete blackout. Now, Hugh remembers a lot of his past, but he’s also lost a lot of specifics and many impressions. It’s hard to nail down. He has said that he does not remember what he used to be like, or what our marriage used to be like. He just doesn’t remember that sort of thing, and yet he remembers facts and he has retained his skills.

TP: How has your relationship with Hugh changed since the accident?

RR: Hugh was vastly different during the first year of his recovery, but little by little, his old personality traits reemerged. Now he’s different in small significant ways. He’s more open now; more friendly and talkative, more emotional and definitely more family-oriented. He’s obsessed with surfing. I think I hypnotized him in the hospital by telling him he was warm at the beach when he was in the ICU. I changed a lot from the experience too. We both changed—we’ve gone through a metamorphosis together. I don’t compare him to the man he used to be. There’s no sense in that. I just give thanks every day that he was able to rebuild his life and that we were able to get through the worst of it and come out feeling more bonded than ever. We know so many others that do not make the kind of strides that he made after TBI and it hurts us to see that. We know full well how fortunate we are.

TP: What advice do you give to people trying to adjust to becoming a caregiver?

RR: First, accept help and learn to ask for help when you need it. Get organized, and if you are not organized, have a friend help you with a few strategies. (There will be mounds of paperwork!) Take small breaks throughout the day to recharge. Learn to live in the present. Practice mindfulness. The brain heals so slowly it can drive you crazy, so you have to learn to take each day as it comes. This is much easier said than done. Be vigilant about depression. Know the signs of depression and seek counseling the minute you or your loved one starts sliding down that slope, because depression will paralyze you and keep you both from moving forward. Celebrate every small success. Remember to take yourself to the doctor every now and then for a check-up too. And finally, keep hoping, striving, and connecting with positive people who lift you up.

TP: What happened to the person who struck Hugh? Was the driver caught or was it a hit and run?

RR: We do know who hit Hugh. He was hit by an elderly lady on a busy road not far from our home. The women said in her deposition that she did not know what she hit. She said at one point she thought it was a construction cone or something. Hugh wore his colorful racing jersey and black cycling shorts that day, and a six-foot well-built man, so that didn’t make much sense to us. Everyone who was at the accident scene said that this woman was devoid of feeling at the scene; she showed no emotion. Everyone else was frantic. The man who was directly behind her saw everything. He pulled over and later testified in traffic court. He was barely able to speak because he was so choked up and traumatized by what he saw and said he still had nightmares from hearing Hugh scream in pain. He did not go over and look at him because he was too afraid to see what he would look like but he stayed with the police and he came to court to help our family. A nurse did stop and help Hugh. She stayed with him until the ambulance came. We later met her and thanked her.

The woman who hit Hugh was charged at the scene with reckless driving, endangering another, but the judge in court dropped the charges to “improper driving,” when the lady’s lawyer said it was a tragic accident and no one wanted this to happen. I had planned to speak about our hardship but never got the chance. The defendant paid $100 and went on her way, and we were left to deal with the aftermath. I think the judge just didn’t care for cyclists on the road.

TP: Do you have your next book in progress?

RR: I have two books in mind. One is with Hugh about his own perspective of the accidents, with tips on how to keep moving forward, and the other is about hospice care.

This interview has been edited and condensed for publication.