Recovering from Meningococcal Meningitis: A Rare Patient Story, Part Two

Continued from Part One

 

With time my speech improved and eventually I could speak fluently again. I also worked with an occupational therapist who helped teach me how to shower and dress myself. Because of my brain injury, I now have dyspraxia, which is a brain-based motor disorder. It affects fine and gross motor skills, motor planning, coordination and sometimes cognitive skills; I have had to find alternative ways to compensate for this. I have also had to relearn basic things that most people don’t even have to think about, from the alphabet to the days of the week.

After almost a year in rehab the staff thought it was time for me to move on. I had progressed greatly, but they had taught me everything they could. What I needed now was education, but there weren’t any teachers. After that I began working with a tutor and then attended an adult literacy class which helped me learn how to read and write again. I had to start with the very basic children’s books and progress from there. Eventually, I was able to read most things and could start enjoying books of my own choice. That’s when I started to read the Harry Potter books. These books enabled me to escape. I became submerged in this magical world, leaving my own life and struggles behind.

“Sometimes we need fantasy to survive the reality.”

I learned a lot from these books. When I read Hagrid telling Harry “I am what I am, I’m not ashamed,” I learned to never be ashamed.

This meant a lot to me as I had always felt ashamed of what had happened to me. Reading this made me realise that there is nothing wrong with being different; in fact, I should be proud of it, because it shows I’m brave enough to be myself and not someone else. Reading these books was and still is what helps me during difficult times. When I read Dumbledore telling Harry that “Understanding is the first step to acceptance, and only with acceptance can there be recovery,” I needed that more than I ever knew.

For a long time I hated what had happened to me and I didn’t want to accept my new life. I would wish for my old life back even though I couldn’t remember it. I needed to forget about my past and instead focus on my recovery; I had no choice but to accept my new life, my new brain and everything that went along with it. One day without warning I started to have OCD symptoms. I started to frantically wash my hands until they were raw. Eventually, with a lot of hard work, I started to be able to manage my OCD, but by no means was I cured.

Then the coronavirus pandemic hit the world. I became obsessed with washing my hands all over again. I was being tormented by the need to wash my hands. My consultant believes that my OCD is a delayed reaction to encephalitis. I have been referred to many different places for my OCD but nowhere knew how to help someone with a brain injury. Although it has been a challenge physically and mentally to tell my story, I was determined. I’m tired of having to hide my flaws and insecurities. “It makes no difference if you have acceptance from millions of people, not when they don’t mean anything to you.”

Having the support of those who do matter is what is most important. This journey has made me realise who my real friends are, the ones who have been with me every step of the way throughout my recovery. I am hoping that people will read this and remember that not all disabilities are visible. Strangers see me as a normal 25-year-old, but that isn’t the case. If someone has lost a limb or is in a wheelchair, you know they have difficulties, but I have a hidden disability. You can’t tell that a person has a brain injury from just looking at them, and you certainly can’t tell to what extent it affects them.

I hope in the future to help people who have also been critically ill, because I know that you don’t just get out of the hospital and get back to life as normal. I have struggled throughout my journey and I wish I had someone to talk to then who would have understood. I hope to be able to support others that need it. “Life doesn’t get easier, you just get stronger.” I am also hoping to learn sign language as I know myself how awful it is to not be able to communicate with anyone. Everybody deserves to be heard, even if it is in a different way. Life is at times still challenging for me, but this is my story. I was left with a severe brain injury, completely wiping my memory and robbing me of the future I had planned. I won’t let my brain injury define me. Be who you are and say what you feel, “because those who mind don’t matter, and those who matter don’t mind.”

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