Portrait: Joshua
In 2017, I sustained a traumatic brain injury from a fall in the Rocky Mountains and fractured my occipital bone, which is in the back of my skull. This caused my brain to bounce off the inside of my skull resulting in three large brain haemorrhages, nearly fatal cerebral oedema or swelling of my brain, loss of my sense of smell, and several new disabilities.
A little bit about Josh
My name is Josh. In 2017, I sustained a traumatic brain injury from a fall in the Rocky Mountains and fractured my occipital bone, which is in the back of my skull. This caused my brain to bounce off the inside of my skull resulting in three large brain haemorrhages, nearly fatal cerebral oedema or swelling of my brain, loss of my sense of smell, and several new disabilities. I developed epilepsy, which led to fractured bones and surgeries due to seizures. Except for periods of aphasia or the inability to speak during some seizures, I was able to retain my cognitive function. This offered the opportunity for learning more about the brain and sharing my refocused knowledge as a neuro-trauma survivor.
A dual perspective of brain injury
I also have a PhD in neuroscience from MIT, which allowed me to experience both the patient perspective and the brain researcher perspective. I feel very lucky to have this dual perspective. Retaining my cognitive function made it able for me to continue research and teaching psychology from this new perspective. I had been a trained neuroscientist and psychology teacher for many years, but the experience of the injury, subsequent seizures and mobility difficulties helped me realise the need to expand our understanding of brain function and psychology as it relates to people that have been affected by neuro-trauma and related psychological difficulties. The people that cared for me also experienced many psychological lows and strain while going through the process of my rehabilitation. This motivated me to become more empathetic, understanding, and learn more about the people around me and the stressful psychological impact it had on them as well.
Social and emotional challenges
Over the years since my injury, I have also learned more about the social and psychological impact on myself of having a brain injury. I did not realise the significance of feelings of loneliness and altered social interactions that often affect those with brain injuries. Brain trauma is a condition which often can’t be seen directly by others.
Sometimes only the side effects can be seen, and people cannot always know the important cause of the side effects. For example, I walk with a limp due to breaking my hip at least five times from convulsive seizures, yet broken bones are often caused by many common reasons other than brain trauma. This is one reason for loneliness because I often feel misunderstood and isolated in knowing my full situation while others may not completely understand the extent of my injuries and the very extensive, long-term impact it has on my life.
Another important impact on my life is how social interactions are often altered. Sometimes I am treated by others as if I am very fragile and need extra care, when the reality is I have been progressing very well and am very excited about continuing with the life that I want. Luckily, I have my puppy Teddy that treats me as the same friend no matter what! I want to be the “Same Me” and hope everyone will realize that I am. While still being eager for people to understand the truth about my injuries, I want to be treated normally. I don’t want to stop being the person that I was to the degree that I am able. One important goal is to go back to graduate school at one of the three universities that have already accepted me so I can keep learning. The other is to ride my bicycle across the United States for a third time!
My hope for the future
I also have the goals of helping others with brain trauma, being an advocate, and increasing the understanding of our true experiences of having a brain injury to improve all our lives. I realised the extent to which brain trauma often comes with psychiatric side effects. Luckily, from a neuropsychological perspective I was able to contribute to understanding the brain function of those with mood and anxiety disorders, which can accompany brain trauma, by working directly with patients at a psychiatric hospital. While these patients were not necessarily brain trauma patients, this helped increase our understanding of psychological side effects that can also accompany brain trauma. I also found positive opportunities to get to know others like me.
I was able to participate with several organisations of people affected by brain injuries through hospitals and nonprofit foundations. This is very important because now I am learning about my experiences from other people in similar situations. This is also important because it results in a bidirectional learning opportunity where I learn from the experiences of others, while also being able to share my understanding of social, cognitive, and emotional aspects of brain trauma from my experience as a brain researcher and educator. Not only are we learning much from each other, but lasting friendships were created.
I want to continue the process with others of understanding our brain, ourselves, and all those that are affected by our neuro-trauma related disabilities.
Advice for other survivors
I recently attended a weekend event for people with brain injuries at a ski resort in the Rocky Mountains. The best thing that I learned was how many of us there are and how great it is to spend time with each other, while knowing that there are many more positive experiences ahead for us. The best advice I have is to simply meet other patients, caregivers, and families, and learn as much as possible, while being an advocate for people like us. I look forward to helping and participating with SameYou in any way possible. Thank you for helping us!