Interview with Ben Murphy

Kristin: Thank you for opening yourself up to be interviewed by our team at VBI! You may begin anywhere in your journey or brain injury journey, and just how it's been — you can start anywhere you would like, and how much you choose how you would like to share.

Ben: Well, my anniversary — a very small one — was a couple of days ago, on the 10th of May. It happened in 2009, and I was 12 at the time. I had a mountain biking accident. It was high-speed,  I had a severe TBI and was in a coma for two to three weeks. It caused a left-sided hemiplegia, meaning the entire left side of my body was paralyzed when I came out of the coma. I had no memory of what had happened. I lost all my memories from the first 12 years of my life. 

When I was in the coma, my parents were told I would not live. Then I came out of the coma, and they were told I would not walk. It was all of these intense things. In some ways, I was actually lucky to have it happen at that age because I was still growing and developing, and that helped with parts of the physical recovery while I was in the hospital for a few months. Eventually, after a few months, I went home. My Mom ended up quitting her job and cared for me full-time for a few years. I missed all of school for about a year and never went back full-time because of chronic fatigue. I was on a part-time timetable after that. 

I used to play a lot of football before it happened — I was on my school basketball team, swam and cycled regularly, and loved sports — running around and everything. That all stopped. I do not have a lot of memories from immediately after the accident, but I remember really wanting to play football again. That was my biggest motivation — I was football-crazy. I think that kept me going, in a way. It was really difficult being out of school. I had to re-learn how to feed myself, bathe myself, use the toilet, and talk. It was like a complete reset for my brain. I had to relearn how to regulate emotions. It was like starting over again from birth, but as a 12-year-old. 

It took four or five years to ‘recover’ physically. I was in a wheelchair for quite a while and eventually learned to walk and it built up over time through physical therapy. Because I was young and otherwise healthy, it aided the physical recovery, which made up most of the recovery by the time I was around 17. But the psychological and mental recovery kind of happened after that. I was diagnosed with clinical depression and anxiety, PTSD, and had a lot of mental health issues. I struggled to make sense of what had happened — especially as a young teenager. A lot of it went untreated and unspoken, and it kind of unraveled later. I was really confused and angry. Despite all that, I got into university and studied, but all the trauma was only just beginning to be processed then. I still had a young, somewhat juvenile brain, however, it was a lot to process and I was figuring it all out by myself. 

I have had a lot of therapy and some severe mental health challenges since then. The therapy hasn’t stopped; I still see a therapist now, which has been crucial. But I feel extremely lucky. I survived, and I was able  to play football again. Obviously not to the same level! I struggled with missing out on a lot of things as a teenager because I was in rehab and at home all of the time. I had awful insomnia and so much difficulty with accepting my disability. It was just... a lot. 

I did make it to university, and I think I had a pretty normal university life, I guess. Though I still faced challenges. I studied Geography, my favorite subject in school. I got into long distance running, and became the co-captain of the cross country team too. 

And yes, I have just always felt really appreciative of being able to use my legs, and they have this sort of wonderful ability to take me places that I had only dreamed of as a kid. They have done me pretty proud in that way! There is not a day that goes by where I am not cognizant of the fact that I went from not being able to use my legs to my present ability. There were several years where I could not walk up the stairs or further than 100m unaided. I went to university and it was like everything was okay. I was seeing a therapist… and then it stopped. And it was kind of like a lot of cracks were showing. 

Then I graduated and started a Research Masters. I think a lot of stuff just came up around 2020. That was the first time I started seeing a therapist again and getting help with some things. That was really life-changing. It has been a long process over the last five years. It is a process that will never stop.

There has been a lot of struggle around acceptance and coming to terms with things like chronic fatigue, slow processing, memory problems—things that are hard to define, hard to tell people about, hard to explain. I have always heavily masked these aspects of myself. But they are there every day. And I guess only you (yourself) really know what they are, what they feel like, and what they stop you from doing, or what they restrict. I have tried to be much more open about this over the last couple of years. But we live in a world where neuro-cognitive disabilities are misunderstood and unacknowledged. 

How did you find Voices of Brain Injury? (VBI) 

Ben: I found VBI after looking at Reddit threads for TBI survivors and I started spending more time on Reddit. I have been encouraged to not just internalize everything, to not retreat, to reach out. I have been going through a whole period of acceptance. I have been realigning my life, I guess.

I had a pretty big relapse in my chronic fatigue a few months ago. I had to be inside more. I have not been great at managing it or accepting it. 

I have a weird relationship with telling people about it. At school everyone could see a very visible disability . But I did not want that to be the main thing people knew about me at university. So I did not tell people for a long time. And in my family, it was a very… “hush” situation. A generational thing. Like, if we don’t talk about it, it does not exist. 

I have tried over the last few years to be more open. And that has helped me understand and accept. 

If comfortable, can you share any part of your childhood after the brain injury and what it was like developmentally? 

Ben: I had a huge cognitive and developmental disability. I was like an infant again at age 12. I lost all of my memories. I had to relearn so many things. Catch up in school. Honestly, that is one of the hardest things to accept—what that period of my life was like. 

Most people you speak to have typical teenage experiences, but mine were vastly different. And that can be hard to wrap your head around. 

There has still been a lot in the last few years, even in my late twenties. Moments of, “This is something I should have learned as a teenager or in my early twenties.” But that development path became so stunted. 

It is hard because society is so age-centric. There is pressure to do “X” things before you are 30, or you are told relentlessly how your brain stops developing after 25. All of that gets internalized. It creates pressure to be a certain way at a certain point, which is physiologically impossible for us with TBIs. My childhood, my brain… are wildly different from the supposed norm. 

What has really helped you heal? What therapies helped you turn a corner?

Ben: I started seeing a child clinical-psychologist when I was 15, three years after it happened. She was amazing. I do not  remember a lot, but I know I had CBT (Cognitive Behavioural Therapy) and EMDR (Eye Movement Desensitization and Reprocessing) therapy for a while. 

They saved my life. I was struggling with everything—not being in school, being very disabled. I did not have a lot of friends. I had no energy. I was only in school two or three hours a day. I missed out on a lot—education and socializing. Sports were also amazing. They are the reason I’m here today. I know they are not everyone’s thing, but having something to focus on really helped at that age. 

My family was amazing. I am really lucky to have the Mom I have. She stopped everything and took care of me. Gave her whole life to me. I was insanely fortunate in that sense. My Dad and sister were incredibly supportive and patient too. 

In the last few years, it has been really difficult in ways I did not expect. There has been a lot of trauma processing of the actual accident. I was not ready earlier in my 20s. I was not in the place mentally to understand the impact of the coma, of not being in school for a year, of PTSD, going into school in a wheelchair, being bullied, feeling different, and feeling outside my body. A huge amount of masking and dissociating happened. And that causes harm too. It needs its own understanding. 

So I think really sitting with what happened, revisiting it in whatever way people can. I looked back at medical reports, and photos of myself from the aftermath of the accident. And looked at the science and learned the terms behind everything that happened medically. I know it is extremely difficult, but I think it is extremely necessary. I think for people to do that is really important - when you feel ready. And I think all the things that happen after the initial injury can help (even if it is a decade and a half after the traumas), if they feel dedicated enough it can help. 

I think if I had started doing that any sooner, I do not think it would have been as effective or beneficial for me. That process of acceptance—of realizing everyone’s brain injury is different, and so the impact and life afterward is different—is really important. Accepting that life, and accepting the limitations that come with it. 

I really like to be here, and I feel lucky in many ways. But I also feel quite unlucky that this happened to me. And it is okay to feel all the emotions—anger, sadness, confusion, shame, grief. Especially as a teenager or young adult, it is a lot to feel.

Therapy has been... not a huge, singular event, but a nonlinear process. I had therapy that was more compassion-focused for a while, and I think it worked. The problem is it felt like I had not gone back far enough. That therapy was very focused on the present day. It helped short-term, but long-term there were still things below the surface that needed addressing. In my day-to-day life, I love routine. I am a morning person. My sleep is a bit better now, though I still struggle with it. So I try to build a life that makes sleep easier, though that is not always feasible. Structure helps. Getting a lot of fresh air is crucial for me. Finding activities that are regenerative. Sometimes hanging out with friends or family boosts me massively. Other times it is too much. My social life is really up and down. That can be hard. 

So I think it is really about finding what works for you. For a while, yoga and meditation helped a lot. Eating well is another really big one. None of this is particularly surprising, but they make a difference. 

And I think having people in your life that you can talk to—people who meet you where you are—makes a huge difference. I am incredibly grateful to my current partner for all of their support and listening. I could not really talk to my family for a long time. I did not feel comfortable talking to friends either. Only recently have I had more people I feel able to talk to. To really say, “This is what my life is like today.” That has really helped. 

If you can have a few people around you, or find them online or through different ways, that makes a huge difference in finding support. 

Even just us connecting—it is so meaningful.

 Ben:  I have never actually spoken to anyone else who’s had a brain injury. You are the first in my life. I only realized when we got on this call. When you are a teenager, and you go from being very active, intelligent—all those social boxes ticked—to being in a wheelchair, semi-nonverbal, and needing support at school, It builds a lot of shame. A lot of guilt. Anger. And I did not want to be associated with being disabled, or having a brain injury. I think that is a totally valid and understandable response for anyone, especially at that age. There was so much unspoken thought and feeling growing up. I think it is vital that folks find an avenue to express whether that is words, music, dance etc. Having somewhere to let some of these emotions come out is the biggest piece of advice I could give people. I did not and it has just exploded out of me - not always in the healthiest of ways - over the past few years.

So I did not seek out support groups. There were charities and groups in Scotland for people with brain injuries and disabilities, but I did not want to accept my brain and body. I did not want to associate. And I do not feel bad about that now—it was my way of dealing with it. Everyone is different. Hopefully everyone arrives at that stage of acceptance eventually, but it is unique for each of us. So this—talking to you—this is quite new for me. And it’s really nice. Thank you. 

I am happy to connect and hopefully we can continue to stay in contact! I did want to ask you something more specific about sleep. It’s a symptom a lot of people ask about—and neurologists discuss it a lot post head injury. You may share as much or as little as you wish. For you, are your sleep disturbances related to calming the brain down for sleep? And if you’re comfortable talking about it, if you could share your experiences concerning sleep? As well, what helps and any suggestions for others. 

Ben: Of course. Sleep has been a big thing. I used to be a great sleeper as a kid from what my parents shared. Probably because I was so active. But pretty quickly after coming out of the coma, I was prescribed melatonin because I could not sleep. I only found out recently that melatonin is meant to be prescribed for a maximum of two months. I was on it for 10 years. It helps you fall asleep but doesn’t help you stay asleep, and it worked for a year or two but it stopped working after a couple years. 

And then came the night terrors. Horrendous. I would wake up screaming. I would sleepwalk and sleep talk. My mom would sleep on the floor next to me. I had recurring visions of a man in the corner of my room trying to kill me—not a specific person, just a shadowy, faceless shape. I think it was a manifestation of trauma, a deep fear and having come so close to death.

That night terror has come and gone throughout my life. It flared up last summer when I was processing the accident deeply. I was shocked because it had been several years since I had experienced it like that specifically. 

As a young adult, I really struggled to fall asleep. I could not get my brain to turn off. I would wake up at 6 or 7 a.m. regardless of when I went to bed. For a long time, I survived on four or five hours of sleep.

Eventually, I was told to stop the melatonin. Since then, I have slowly reset things. Now, if I get seven hours, I am really happy. That feels like a win. 

But going to bed is still hard. It is a sort-of traumatic space for me. There are so many negative associations. So now I try to talk to myself, and say to my brain, “Sleep is good. This is a safe place.” It’s a process. It’s an enjoyable  thing to help process going to sleep. 

In terms of help, the best thing is getting fresh air and exercise. That has always been true for me—even before the brain injury. I prioritize it every day, even if it is just a 20-minute walk. I am also a qualified mountain guide. I love camping. There was a study I read that said camping can reset your circadian rhythm—I have found that to be true. I sleep better outdoors. Here in Scotland, the long summers and short winter days affect things too. I try to follow seasonality—wind down with the dark and establish a routine that way. 

And I try not to fight it. If I only get five hours, I will adjust my expectations the next day. I will do fewer things. Be kinder to myself. That mindset helps. Be kind to yourself and limit activities for the next day if you need to pace due to lack of sleep and energy. 

I have not found the “standard” sleep hygiene advice—like no caffeine, no screens—to make a big difference for me personally. I am very tall and active, so I eat a lot, and I have found I do not sleep well if I go to bed hungry. It is important to be aware of your patterns and work within them. Knowing your own body is crucial to sleep I would say! So I think the biggest thing is learning what works for you. Trying things out. Observing. 

As for supplements—I do not take any now. Honestly, I have been a little scared of anything after relying on melatonin for so long. I try to come back to food. Eating a lot of fruits and vegetables. I was vegan for five years. That worked for me for a while, though now I am not. 

I think in some ways it really worked — I mean, I ate a lot more fruits and vegetables. You can do that as a non vegan as well as a vegan. So yeah, I am not going to push anything — different things work for different people. But I have stayed away from medication and supplements for sleep. I have used lavender oil to help a little, but then it kind of stops helping. I have not found something that is like a magic bullet, unfortunately. I wish I had!

I just tell myself, “Today, I am going to do the basics.” If I get a couple of things done, it is all good. Just adjusting your expectations and limits — that is where it helps if you have accepted your injury. Within your own brain, there is only so much you can do today, and that is absolutely fine. And maybe just check in with yourself each day: “How did I sleep?” because that is going to change how today goes. I love to-do lists — but I have realized every day is so different. So the lists need to be flexible too. Every day can be so different when living with a brain injury. If people can prioritize finding what works for them, it really does make a difference — to your energy, your productivity, your mental health. If you can get good sleep, it really helps. It is worth putting effort into it, trying out different strategies. 

Would you want to add anything about where you are at today — your goals or what brings you joy right now? 

Ben: Something that popped into my head earlier — something I want to hear from other survivors too — is the balance between accepting your injury and not letting your TBI become an excuse. For me, it is really difficult to balance — I have fatigue, I have memory issues, but I also have expectations of myself, just like everyone else does. You have to balance acceptance with kind of getting on with things. And that is hard. If you go too far one way, you start dismissing yourself. If you go the other way, you get nothing done. That balance is something I want to understand more with practice. 

I can really relate to that. It is a greater conversation — a process. That piece between “What am I missing out on?” and “How can I still feel included in life?” It’s a deep philosophical question. I did not even start thinking about this until I accepted the injury myself. Then, as the years went on, I started to grieve — the ambiguous grief. As well, there are often huge life milestones lost— But then you do the “internal work” and work on reframing new milestones and come to some kind of radical acceptance. And I think the biggest piece is not feeling alienated. Not feeling like you’re wrong or there is shame around the shifted trajectory of your life. 

Ben: That makes sense too. One of the hardest things about brain injuries is how different they all are. For a while, I remember as a teenager, they had never seen my specific injury before. They had to fly a specialist from England to diagnose me and figure out a rehab plan. And as a teen, I was like, “Whoa, this is kind of cool.” But now I am like, “Whoa, this is really something.” And you are just left thinking, “Where do I turn to?” Because what happened to me — no one else in the world has experienced the same thing. And while that individualizing can go too far, there is truth in it. But brain injuries are really absent from media and public discourse. With other kinds of trauma, there’s more public awareness and places to go. With brain injury, it can feel very isolating.

What has really helped me — and this is where therapy and reading comes in — is realizing that the impact of those different traumas, even though the causes are vastly different, the psychological outcome and the healing process are often very similar. There is a lot of overlap in the kind of therapy that works, the language we use, and the process of recovery, mentally. It is actually similar to other traumas. 

So yeah, even though brain injury is very unique and individual, it is really helpful to draw parallels and make connections to other lived experiences. That is where I have found a lot of material, support, and understanding — using terms I never thought applied to me (inner child work for e.g.  and masking/dissociating). Again, it is that balance between accepting and acknowledging, and getting on with it. 

I just wanted to say thank you. I really appreciated talking to you. It is nice to feel like I do not need to explain everything — you just get it. 

Thank you for sharing a significant piece of your journey from childhood to your present day! You are a warrior and I believe your story will help educate others in our community.