Interview with Taylor Malone

To start off, please tell me about yourself.

My name is Taylor Malone. I live in Prince Edward Island, Canada. I acquired a severe traumatic brain injury in 2012 when I was 19 years old. Today, 14 years later, I continue to live with my brain injury and all of the changes that have come with it. I’m also a licensed counselling therapist that specializes in helping people who live with the impact of brain injury.

If you feel comfortable, would you be able to share a little bit about the nature of your injury?

It was from a motor vehicle accident. Upon impact, I was immediately unconscious and later diagnosed with diffuse axonal injury. So what happened is, I was t-boned by a truck on the driver’s side. My head smashing the driver’s window is a big part of what caused my brain injury. Being from a small town, I personally knew two of the first paramedics on the scene. A year or two after my accident I connected with one of them and he said upon arrival, my wrists were postured in a way that they immediately knew I had a pretty bad brain injury. I had a number of other injuries, such as broken bones and a collapsed lung, but my brain injury was the most life-changing.

How has your injury impacted you?

It's definitely impacted me in a lot of ways. It almost completely changed my personality, so I’ve been told. It’ll be 14 years this upcoming December and I’m still learning new stuff about my abilities all the time. I’m still realizing “oh, you know, this thing that I really struggle with now, it’s not that something’s wrong with me, it’s because I have a brain injury.” So, I’m learning to give myself grace and be softer with myself. Everything takes more effort. It’s hard to work the typical 40-hour-a-week job because I get so tired and fatigued all the time. Over the years, I’ve discovered I have what’s referred to as secondary ADHD. I don’t have the actual diagnosis in the way someone without a TBI would, but because of the impacts of my brain injury, I struggle with a lot of the same things someone with ADHD would. A big part of that is executive functioning, feeling overwhelmed, emotional regulation, motivation, planning, all that stuff.

How have you noticed that your personality has changed or how have other people described the change?

When the injury was recent, I didn’t realize that it had changed. I still don’t, but perhaps that’s just because I live with my personality everyday. I’m told that before my injury, I was very high energy, just always wanting to be on-the-go and do stuff. Something I’ve noticed knowledge-wise is that I’m horrible at math now. I used to be great at math, you know? I didn’t really have to try to get good grades in it. But now, give me a word problem that has numbers in

it? Not a chance. I get frustrated a lot quicker than pre-TBI. That’s taken a lot of awareness and effort over the years to express that frustration in useful ways. Another thing is that I’m much more family-oriented now. I definitely used to take a lot for granted.

What do you think brought on this change in outlook on family?

I think it's a mix of a lot of things.
Although it's not fun to get a brain injury, I do consider myself very fortunate in the sense that I have such a unique outlook on life now. People that haven’t almost lost their lives don’t get that. Now, I really value my family and support system because life is so fragile. Anything can happen to any of us at any time. My family was by my side the entire time I was in hospitals and recovering. Even though my friends were really great, they still had to keep living their lives. When they do, your family is hopefully still there. I know not everyone has a family as supportive as mine, so I want people to know that family can be chosen, too, not just the one you were born into.

Could you share some of the initial and ongoing symptoms that you've experienced from your injury?

At first, it was a lot. I was in a coma for a couple of weeks. The neurologists were unable to tell my family a clear “yes, she will get better” or “no, she won’t”. With my condition at the time, and the information they had, they had to tell my family that if I did wake up from my coma, I would likely spend the rest of my life in a nursing home with around-the-clock care. I’ve come a long way since then. After waking up, I was like a child again. Mentally and physically. Diffuse axonal injuries consist of damage all over your brain, but the primary part that was damaged was my left frontal lobe. Because it was the left side of my brain that sustained the most damage, the right side of my body was essentially useless. I had to learn to walk all over again, brush my teeth again, feed myself, write, all of the things. I’m right-handed so for a long time, it felt like I was using two left hands. And my left hand performs very, very poorly. Interestingly, walking and running came at different times. I could walk, but I couldn’t run, even though mentally I was telling my legs to move faster. My mom had to help me shower for quite a while after I woke up, too. I had to learn to do all the stuff again that we take for granted.

Flash forward to now, one of the main symptoms I deal with is that I’m fatigued a lot of the time and it doesn’t go away. Learning how to do things in a way that feels easier, like less decision-making because making decisions is exhausting for me, has been huge for me. It takes so much of my mental energy. For instance, I got married a couple years ago and the planning/decision-making took so much out of me. I would often feel paralyzed with overwhelm. Another thing I struggle with is something called anomic aphasia. It’s a language disorder caused by trauma to the brain that makes it hard to find the word you’re looking for even though you know it. It’s like that tip-of-your-tongue feeling.

Did you have any routines or practices that have helped you manage your symptoms and support your road to recovery?

One of the biggest things for me that has helped me the past number of years, and probably will for the rest of my life, is cutting down things where I can. So, for example, when I went back to school, I didn’t do it full-time because I couldn’t. Five classes at once was too much for my brain to manage. So, I did it part-time. It took me longer to get through school that way, but it’s something I had to do. Even now, I don’t work the typical 40-hour week because I just can’t manage it along with adult responsibilities and being a parent. I think it’s important to recognize how much capacity you have. I notice that some days I’ll be able to tackle more things than I can on other days. It’s something you have to evaluate on a day-by-day basis. Ask yourself, “How am I feeling today? What’s the most important thing I need to do today?”. I often travel to see family and before my brain injury, I’d be like “alright, today I’m going to drive home from dad’s, then I’m gonna do this thing, go to that appointment, and then do this other thing.” I can’t do that now. If I’m driving for a few hours, that’s kind of it for the day in terms of things I do that require my energy and sustained attention. Being a parent now has required this cutting-things-down skill, too. It helps to visualize it as juggling all these different balls where some are breakable and some are going to bounce back up. Figuring out what ones I need to keep in my hands versus which I can let drop sometimes has been extremely helpful.

Something else that has really helped me is understanding my emotions more. It's pretty common after a brain injury to struggle a lot with emotional regulation, especially anger and frustration. I've learned to notice whenever I'm getting really angry or really frustrated. It feels like this energy building up in me and I want to slam my fists down on a table or throw something to get it out. It’s been really important for me to be able to notice when that’s happening so I can respond to that emotion in a helpful way, like squeezing a stress ball or something soft and unbreakable, or walking away for a breather. It’s certainly been trial-and-error because I didn’t start out having these emotional regulation skills, it’s something I’ve had to learn, but it has changed my life for the better.

Looking back, what do you think has been the biggest change in your life since your injury?

When my brain injury happened, I was 19 years old, so it was at a point in my life when a lot of external things, such as figuring out what to do with my life, were changing anyway. That being said, there are a lot of internal changes that will always be with me. One of the biggest ones has been recognizing and accepting all of the ways life has changed for me — how I can cope with things, how I show up in public, how I show up in my relationships, the capacity I have, the struggle of living with an invisible disability. People will often have the same expectations for

you as they do for someone not living with brain injury because they can’t see it. Coming to terms with that and not feeling like I have to prove myself all the time has been a big one. It’s been over 10 years, right? I’m finally getting to that point where I know what my capacity is, I know what I can and can’t do, and I don’t need everyone else to agree with that. So, the biggest change has been learning to juggle all aspects of life in a different way. And that’s been scary, you know? Living with brain injury shows up so uniquely in everyone’s life that whatever path you take is completely uncharted territory.

What advice would you give someone who is just starting their own recovery journey?

I promise I’m not just saying this because I am a therapist, but find a therapist that you really connect with and work with them, talk to them, share your problems with them. In becoming a therapist, I did a lot of reflection on my early-recovery days. Looking back, I wish I had gotten in contact with a therapist who works with people with brain injury, who knows stuff about it, because I was so lost. No one around you understands, and you don’t really understand, because this is so new to you. So you're kind of taking the assumptions or expectations of these people around you, and you're saying, “I should be able to do that” “Why can't I do that?” “Why don't I have the energy for this?” “Am I just being lazy?” 
And you get so confused and down on yourself, and it's really hard to find your way. Your chance of developing depression or anxiety at some point in your life after a brain injury is nearly five times greater than people who don’t have a brain injury. That’s a pretty sobering fact. The advice I would give someone just starting their journey, or anywhere on it, is: Find someone who can help you guide your own life where you want it to go. Find someone that will help you figure out what you want in life and what your capabilities are rather than the expectations and capabilities of the people around you.

I can imagine someone would prioritize physical therapy but it's equally as important to prioritize your mental health as well.

Yes, and that's so true. I was in the hospital for a couple months, and then I went to a wonderful rehabilitation centre for brain injury, and I was there for about a month. 
You had a physical therapist, an occupational therapist, a speech therapist, a neuropsychologist, etc. but mental health wasn’t prioritized the same way. That’s another big reason I got started in brain injury therapy, because mental health still isn’t prioritized after a brain injury. When you’re the one with a brain injury, or you’re the one with depression, or anxiety, or whatever, it’s so much harder to see the signs when you’re in it than when you’re out of it, right? You almost need that direction that says, “Hey, counselling therapy can really benefit you in all these ways, so why don’t you give it a shot?” And I really wish that direction is something I had.

Did someone suggest brain injury therapy to you when you were recovering?

No, not beyond some sessions with the neuropsychologist for some assessments. I believe there was a social worker if mental health support was needed, but that’s not something that was required. I wish it was, at least for a few sessions — I had a recent brain injury, I didn’t know what I needed. And this was new to my family too, so they didn’t know either. One of the things I remember from my early-recovery days is that I wanted to be a neuropsychologist because I wanted to help people that were in the same position I was. I really wanted to help people in the way that I felt I needed. A few years after that, when I returned to school, I realized a neuropsychologist probably wasn’t the way to go and a therapist specializing in brain injury was more aligned with what I wanted to do. I wanted to talk to people. I wanted to connect with people. I wanted to help them work through these big problems in their life that they just can’t quite figure out on their own, or need some different skills to help them get there. It wasn’t until undergrad that I went to therapy for the first time, six years after my injury. I went for some relationship-based stuff and it was really life changing. So, I started working even harder towards becoming a therapist and being knowledgeable in helping people navigate life after a brain injury, because I understood how valuable therapy could be.

Could you share a little bit about the work that you do?

I am a licensed counselling therapist in Prince Edward Island. With my own practice, Beyond the Brain Injury, I’m able to work with people all over Canada via telehealth sessions. Additionally, I collaborated with Sarah Carr Psychological Services to create The Brain Clinic, where in-person sessions are offered. In the context of brain injury, concussion, post-concussion syndrome, etc., a client would come to see me and we talk about their injury, what they are struggling with post-injury, how they are currently coping, symptoms, and how it’s all impacting their life. Something I’ve noticed with nearly everyone is that everything changes after a brain injury. When things change so drastically, it can be hard to find fulfillment and satisfaction in your life. Feeling as though your life has meaning, whatever that may be, is so important to a fulfilling life. Some helpful questions to ask are “What direction do I want my life to go in?”, and “What skills do I need right now to help me through my day-to-day?”. I also focus on a lot of relationship-based stuff whether that’s with family, friends, romantic relationships, or a person’s relationship with themself. It’s often really hard for a lot of people living with brain injury to show up in relationships in a way that feels good. And every brain injury is different, right? So, I’m not going to tell someone “I know exactly what you’re going through”. I understand on a level of “I’ve been in the thick of it, too”. That’s a really unique and special position for me to have. When working with people I want to know, what is this injury like for you? How has your life changed? And where do we go from here to get your life where you want it to be?

Do you find that your job provides you the flexibility that you need to manage the symptoms that you mentioned earlier?

Absolutely.
And that's one of the many positive things about my profession. I work in-person twice a week, and then I work virtually a day or two. I’m also able to change a few things around schedule-wise if a client can only meet on a certain day/time. Flexibility in your job is so great when you have a brain injury that you struggle with, all while you’re trying to juggle the other aspects of life, too, like children, family stuff, taking care of your home, and all of the other adult responsibilities.

What do you think are other ways that we can better support individuals with brain injury?

Definitely prioritize mental health more. But also make mental health stuff more accessible, it’s inaccessible for a lot of people. It’s expensive and not everyone has health insurance beyond what is offered provincially. Another way is to believe people with brain injury. Because again, it’s so unique in how it impacts a person’s life. If they’re telling you “I can’t figure this out” or “I don’t have the capacity for that right now”, believe them. That’s hard for a lot of people because it’s not visible the way a broken leg is. People have a hard time believing what they can’t see. I wish society would have a better understanding of stuff like that, how unique it is and how invisible it can be to the eye. There needs to be more widely-seen information and education on brain injuries. There’s a large number of brain injuries that people don't get checked out. Sometimes they come from things like domestic violence and people don’t usually want to come forward about that. More information on how to be brain-safe when it comes to things like playing sports, protecting your head, limiting screen-time, or prioritizing sleep would be helpful too. Especially for people in their early days of recovery or people that have had a brain injury in the past.

Is there anything else that you would like to share?

Looking back at where I was, and I’m going to apply this to a lot of the brain injury community, if there was someone that could have understood me and walked that path with me when I was first going through it, that would have made a world of difference. It’s taken me 14 years to figure out useful skills, learn how to notice certain emotions and what to do with them, how to understand myself better, etc. I don’t think there’s ever a time in life where any of us, brain injury or not, are fully done discovering parts of ourselves, but if I had connected with a therapist in the early days, I might have seen some of those changes a lot sooner. The power of feeling seen and understood is huge, and people don’t realize that until they feel the difference it can make.