I was recently asked by a fellow encephalitis (e) survivor to share a bit of their journey with OCD which engrained itself in their mind and body from suffering from encephalitis at a very early age. I find writing about my personal experience rather easy, but describing someone else’s experience is a whole different kettle of fish. Two things constantly lingered into my mind as I wrote the blog:
1- Wanting to retell Paula's experience in a way that others not suffering from OCD could relate
2- Bringing Paula's personal story the attention that it deserves
Paula was diagnosed with herpes simplex encephalitis the day after her first birthday. All the memories of her childhood and adulthood are therefore tainted by the devastating effects that encephalitis had on her young developing brain. When we originally got in touch via Twitter, she was feeling sorry for the ongoing struggle that I have between the "old" and "new" me. Paula may not really have that aspect to juggle, but her whole life has been altered by this illness in ways that few of us experiencing encephalitis at a later age can ever imagine. See Paula has had to live with paranoias, depression, severe anxiety and obsessive compulsive disorder (OCD) pretty much her whole life.
Due to the young age at which she contracted encephalitis, Paula's never really had an old and new me. She's always been the same person and those issues have always been part of the person that she is. That being said, the links between those conditions and "e" were not clearly established until much later in her adult life. Therefore, since very early on, she was treated differently by the schooling system, her peers and often misunderstood by adults and health professionals. Her fear of having others hear her voice from a very young age meant that she never talked much to anyone and was often the quiet one in the corner of the room. As Paula described, "I was so quiet that nobody knew I was even in school". Her brain also operated and processed things differently and that led her to be a victim of extreme bullying throughout school...bullying none of us would ever tolerate on our kids, bullying no school should ever consider acceptable. The lack of empathy and several of the bullying acts have had for effect to increase tenfold many of the mental health issues that she works hard on managing to this day.
Her story is a succession of battles with a health system that failed to provide the right support to her and her family...and this applies from the very first day of school until adulthood. Her story is a succession of painful memories that no child, teenager or adult should ever have to navigate. As she communicated her story to me and explained many of the events that contributed to aggravating her profound OCD and clinical depression, I couldn’t help but thinking how admirably strong she is.
“I was never told I had a brain injury nor were my parents. I was shocked when someone eventually explained to me that I had an ABI and explained how it affected me”.
It’s important to note that it’s not until a few years ago that Paula and her family managed to get a profound understanding of how deeply encephalitis and ABI affected her whole upbringing and development. Gaining knowledge of "e "and ABI allowed them to better understand the person that she grew up to be. Due to the profound OCD that she developed over the years and the fact that her OCD went undiagnosed for years, Paula is now housebound. Her OCD is so intense that it often zaps her of all of her brain energy. Her OCD is such that ongoing justification of processes that she has to follow rules a huge part of her life. Her brain rarely lets go of the “what if’s” or “but what will happen if I don’t” which feeds not only her OCD but her anxiety...further depleting her brain of precious energy. Her OCD also often interferes with her sleeping obliterating any heathy sleeping pattern that would help her brain recharge. Any brain injury survivor will agree in me saying that low brain energy and poor sleep patterns calls for a massive catch 22 and downward spiral. That combination is often detrimental in maintaining a stable mental health in the average everyday person so one can only imagine how the wiring of a person who suffered physical and chemical changes due to a head injury would be affected. To help put Paula's OCD in perspective she has allowed me to share the following that she wrote:
"People would think that I work night shifts because of all the time consumed by showering and by my disinfecting compulsions. It is exhausting and draining and I often find myself compelled to perform all these tasks right before going to bed. And once this is all done, it can take me up to 3 hours before falling asleep. I am often going to bed when most people are just waking up and I often get up when most people have had their lunch and so on. I wish to god that I didn't have this horrible OCD and I would love to have a routine similar to everyone else. I hope to achieve this one day and I I am doing Cognitive Behavioural Therapy (CBT) to help with this and a zillion other fears."
In retelling me her story, I got to understand better how "e" and her OCD profoundly affected her life, the person she is today, her dreams and aspirations, but it also enabled me to understand the enormity of the challenges she has had to face due to the lack of support linked to poor awareness of "e", ABI, mental health and OCD. I’d like to think that our current society is way more up to speed now with all those issues however, the latest statistics from The Encephalitis Society reveals that 78% of people still don’t know about encephalitis and its long term effects. Although some forms of support may be more readily available nowadays, Paula’s story goes to show how knowledge, early diagnosis of certain mental health conditions and access to timely support can make or break a persons' life. No one should ever have to fight so hard to be heard and acknowledged.
In spite of all her ongoing challenges, I am in awe of Paula’s inner strength and desire to work on making sure that no one else goes through what she has and is still going through. In all her wisdom, I think the last words of this blog are best left to Paula herself:
“It is such a relief now that I know. I just wish I would have known years ago. This is why I want to volunteer some of my time to helping other children growing up with similar conditions. I'd like to be able to provide them, and their family/friends, with crucial information about their condition and inform them regarding the help and support that is now available. It was never available to me as a young child, but it doesn’t have to be this way anymore."
A little bit about Paula
Paula was always referred to as a "little fighter". As a child, she loved playing with her cousins, going for family days out, doing crossword puzzles, sunbathing in the garden and helping her mum with gardening. Her Nan introduced her to playing the piano at age 3 and that led her to achieving several certificates from The Royal Academy of The Royal Schools of Music. As she got older, music remained an important part of her life. She really enjoys singing, dancing and she's always loved watching programmes such as "Strictly Come Dancing" and "Stars in Their Eyes". Music has a way to always cheer her up! She also grew quite passionate about learning French. Paula became a member of "Team Encephalitis" where she volunteers some of her time to helping others. If you’d like to follow Paula on Twitter: @paulateamenceph