Overcoming the Odds
AN INTERVIEW WITH CAMILLE MOFFAT
I’m excited to share our first guest interview with the wonderful Camille Moffat! We became acquainted with Camille through my oldest sister Sara. Camille is a Traumatic Brain Injury (TBI) survivor. For those unaware, TBIs are brain injuries that are caused by an external factor (i.e. collisions, falls, penetrating head injuries, etc).
The brain is so complex that the possible effects of a brain injury are extensive and different for each person--even if they have the same diagnosis. But I find that we can connect to certain aspects of every fellow survivor’s story, whether its symptoms like neuro fatigue and cognitive impairment or something deeper, like how it feels to rebuild your life and yourself amidst the uncertainty of recovery. I definitely found that to be true with Camille, despite the fact that our brain injury stories could hardly be more different.
Tell me a little about yourself, Camille.
I wait all year for apple cider doughnut and apple picking season. Talking with people, learning what makes them tick, and helping them believe in their self-worth is one of my favorite things. I haven't seen most movies, and I really struggle with "assemble your own" style furniture. I am very proud of having grown up all along on the East Coast, and now live in Omaha, Nebraska (turns out, it's a really cool city!). I love art, travel, reading, and healthcare. But most of all, I love my niece and nephews.
What were the circumstances of your brain injury?
On December 17, 2016 at roughly 12:03am, I was hit head-on by a wrong-way drunk driver who was driving 100mph on a one-way street. That moment changed my life forever. Countless bones shattered and some of my internal organs perforated. I broke my nose, my lip split open, my four front teeth were knocked out, my intestines perforated, my right foot broke, and both my ankles were, quite literally, shattered into countless pieces. A foot that was facing backwards when I was discovered was the least of my medical concerns. My physicians told my parents that the injuries to my brain worried them the most. One brain bleed isn’t great, but medical staff can manage it. Three brain bleeds sends clinicians into high alert. I had well over 15 subdural hematomas.
Clearly, the TBI I sustained was very severe. I count my blessings every single day that I was in the care of highly-trained and specialized physicians in less than an hour of impact and remained in their care twenty-four hours a day for months thereafter.
What kind of rehabilitation did you have to go through?
I had physical, occupational, and speech therapy. I spent two months in the hospital, and I had my therapies every day except Sunday. Honestly, I’m not sure whether or not I had therapy on Saturday, but I’m confident I had Sunday off.
How recovered would you say you are, or does it change a lot day to day?
I sometimes ask myself this question, and my answer changes all the time! There are periods of time where I feel so incredible that I almost start to think that I need to apologize to everyone I have told how hard it is for me to live with this brain injury. Then there are days where I don’t have any energy or I can’t spell my name. The unpredictability of the life-long side effects of TBI are frustrating. Symptoms can fluctuate minute by minute or even season by season. TBI’s are so unpredictable because each case is so different- it’s not like a broken bone, which is comparatively more straight forward to repair; and each individual TBI case experiences so much variance within their own personal experience.
How did this affect your identity / sense of self in the short and long term?
Going through that car accident and now living with TBI has made me feel decades more experienced and mature than my age. This means that it can make me feel a bit separated from peers my own age at times in terms of wisdom and perspective.
I also feel so much more resilient and strong than I ever thought possible. Physicians told my parents that I would never speak coherently or read for fun again and that I wouldn’t have more than 30-50% of my mental faculties for the rest of my life. For a while, they were right. However, when I was out of the hospital and learned about this initial prognosis, there was no way I was going to accept that. I read more than 80 books last year and have read more than 60 this year already. I graduated with my master’s of healthcare administration three years after the accident, and I earned a perfect score on my master’s capstone. The jury is still out on whether or not I speak coherently. ;)
Where does the TBI fit in terms of your decision to pursue a health care masters?
I had been thinking about grad school for a very long time before this accident. I have a BA in art history and curatorial studies. I absolutely adore learning about art history, but I absolutely hate writing about art history, so I knew that pursuing a master’s in it would not be the right fit for me. Originally, I had planned to get an MBA, because even though I didn’t see myself as the quintessential MBA-type, I was told it would lead to a good job. I applied to a few programs but ultimately decided not to get an MBA because I knew it wasn’t the right fit for me personally.
After getting out of the hospital, my dad encouraged me to look into graduate programs again. After everything I had been through, I knew I wanted to give back to the healthcare system but didn’t want to go through years of medical school. I knew that I provided a unique perspective on the healthcare system as someone who had been a long-term hospital inpatient and who had overcome every prognosis that was thrown at her. I came across the MHA at the University of Utah, applied, and was accepted. I decided to attend a program in Utah because my surgeons and dentist were in Utah and I had continued care with them at the time. Healthcare isn’t an easy industry to work in, but guess what? I can do hard things.
How was your mental health affected by the accident?
Honestly, I think it goes the other way for me: how my accident was affected by my mental health. Probably 2 or 3 years before this accident, I saw a therapist for a short while, which then gave me the courage to call my physician and get a prescription for an antidepressant. Getting my mental health in control beforehand allowed for me to be that much more stable and steady when my whole world was rocked. My parents made sure that my care team knew about my antidepressant prescription from day one in the hospital so that they could continue to administer it.
What is the single biggest thing you wish people understood about your brain injury?
Looking healthy, overcoming the odds as I have, and being a generally positive person doesn’t mean that what I’ve experienced wasn’t the hardest thing anyone could ever imagine. That being said, I wish people knew that having survived what I have and living with what I do, in no way do I view your pain and hardship as any less valid than mine just because my experience seems so huge because the accident was so visible.
Did you have any positive experiences with medical professionals that stand out?
Because of amnesia, this isn’t one that I remember, but it’s one that my mother has told me about and I often catch myself randomly thinking about it. During my tenure in the Shock Trauma ICU (STICU), I experienced several episodes of sympathetic storming. A sympathetic storm is a nervous system disorder that impacts about 15% of people who have a severe TBI. Your body temperature spikes and you experience different states of consciousness, amongst many other symptoms. They’re terribly frightening. The brain can suffer permanent damage at 105 degrees Fahrenheit. My temperature would spike to 107 degrees Fahrenheit. During these storms, my mom talks about how my physician would sit in my room with me and, like a symphonic conductor, direct his team in how to help me. He would be completely focused and zero-ed in, telling people what amount of which medications and other types of care I needed to overcome the storm. His ability to remain calm while dealing with one of the most complex cases he’s ever treated played an integral role in my healing.
Do you wish anything was different about the care you received?
After my time in STICU, I moved to the neuro-rehabilitation unit. It wasn’t until my last week there that I came “clear” of amnesia. As the odds would have it, my neuro-rehab doctor was also off at a conference for most of that week, so I didn’t see her. I was very frustrated and vocal about how disappointed I was that I never saw my doctor! All I was told for the first few days was that another doctor was filling in for her. I wish a staff member had just told me where she was, even if they weren’t sure if I was clear of amnesia or if I would remember.
I remember going to see my primary care physician for a regular annual physical after everything had happened. She never paid much attention to me before, when I was “boring” and “healthy”, but now that I had an interesting medical history, she spent lots of time just chatting with me. I wish that my doctor would have treated me as if I were interesting regardless of the trauma I had been through.
Has it been a struggle to find peace with the amnesia surrounding this life-altering event?
Amnesia has definitely been one of the hardest parts of this experience for me. To have something so completely transform your life for the rest of your life and to not be able to remember it has been frustrating. I’ve largely come to accept that I can’t remember anything, but that doesn’t mean that I don’t still hold out hope that one day something will trigger my memory. People always tell me how lucky I am that I don’t remember; I respond by asking them how they would feel if they couldn’t remember the event that turned their whole life upside down and changed the trajectory of their life. My mom has learned to understand what I mean when I say that I wish I could remember, and then adds that she’s still glad that I don’t remember the pain. While I don’t have memories of the initial weeks and months of pain, my body still holds on to those memories. That likely sounds very abstract, but the best way I can explain it is that even just talking about the pain I didn’t mentally remember would cause me to cry for years after the fact because my body remembered that experience.
You said you did your undergraduate degree in Art History. Did your relationship with art change because of your TBI?
My relationship with art actually helped me to heal in the early phases of my TBI! As an extra Christmas present for me in the hospital, my little brother and sister-in-law got me a calendar where every day was a different work of art. My mom talks about how she would change the calendar each day and ask me what artwork it was. I would then roll my eyes and scoff, embarrassed that she didn’t know that this was obviously Manet’s Le Dejeuner sur l’herbe or whatever the piece was that she was showing me. I don’t remember these pop art quizzes, but it makes me smile to know how something I had always had a love for played a part in helping me to heal.
What are the worst and best things people have said to you about your condition?
The absolute worst thing that people say after I tell them about my chronic side effects is, “Oh yeah, I feel that way, too.” No, you don’t. I live with chronic fatigue. TBI fatigue is unlike any other kind of fatigue that you will ever imagine. It is more insurmountable and all encompassing than I can even explain. I forget a lot of random words. Feeling your brain fight mid-conversation to make new neural pathway connections to find that once-familiar word again in your brain can be humiliating depending on who I’m talking with when it happens. Those without TBI who forget a word don’t have to completely rewire their brain to find the word again.
Another equally terrible thing that people can say is “You seem so normal” or “You seem fine”. I’ve had had to learn that people mean well, that what they really mean is “Wow, you’ve recovered so miraculously!” I understand that TBI, like depression, anxiety, and PTSD, is a largely invisible health condition. I would like people to learn that those comments, while hopefully well-intended, invalidate my experience and make me question my own sanity and integrity. I much prefer when people say something like, “Wow, that sounds really challenging. How can I help you with this?”
Do you have an opinion regarding how stories like yours are presented by society?
When I discuss my healing process, any comments I make about how God is ultimately the reason that I’ve recovered in the way that I have are overlooked or just deleted. This is so sad to me! I could not have recovered without God blessing me, my caregivers, and my friends and family. I remember one interview I gave for TV, they asked my mom some questions, too. She talked about the credit she gave God, and the TV network completely removed that portion of her comments from airing.
Have you found a community to help support you after your TBI?
I have a good friend, Elizabeth, who lives with an mTBI. While our symptoms and recovery are very different- as with any TBI survivor- it’s so nice to know that there’s someone in my social circle who really knows what I’m talking about and going through. She has pointed me to a few Instagram accounts to follow that provide clinically-backed information. Just reading comments from other followers about their experiences strengthens my sense of community. I also have some amazing friends who support me both as I tell them what life is like for me with a TBI and about when I’m experiencing flared-up symptoms.
What has surprised you most about your experience?
It’s been so surprising that I can sometimes tell that my brain is rewiring. This usually happens when I’ve forgotten a word and I have to find new neural pathways to find that same word. So yes, it’s frustrating to forget very simple words, but it’s also given me a unique appreciation and understanding of the power of my own brain that I didn’t have before the accident.
When this occurs, do you feel like you have to hide your cognitive issues to meet the expectations of other people?
I wouldn't say that I feel like I have to behave a certain way to meet the expectation of others. If I ever can’t remember a word or something in conversation, I just say something along the lines of, “I don’t know if you know this, but I hit my head once, so I can’t remember that word right now” and then the person I’m talking with is usually able to supply the word I’m looking for. I’m pretty upfront and honest about my needs, so that helps a lot.
That’s one thing I really admire about Camille: because while broken bones heal and lacerations scab and fade, the effects of brain injury are usually chronic and hard for others to understand. Whereas I’ve developed all these mechanisms to hide my symptoms--and in particular my cognitive issues--she’s open about the fact that she continues to struggle with the effects of this terrible and life-changing thing that happened, and refuses to be ashamed.