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Paul W's story

10th May 2019

Forty-nine-year-old Paul, from Loughton in Essex, fell ill with flu-like symptoms in 2010. He has little memory of the days leading up to being admitted to hospital, where he was put on end-of-life care and treatment stopped

Paul W's story

Amazingly, he survived, but meningococcal meningitis has left him profoundly deaf and with other lifelong effects. He tells his story here.

“I was a teacher at the time I became ill. It was during the October 2010 half term that I first started feeling unwell. I thought it was just the normal crappy feeling us teachers suffer when we go on holiday.

“I was out and about in the high street with my wife Charmaine on the last weekend of the half term break when I told her that I couldn’t continue with the shopping. I had to get home. When I got home I got under the covers on the sofa. I remember a very bad headache, and feeling very cold. School resumed on the 1st November. I returned to my post, teaching and doing everything that I was trained for. The same thing the next day. And the third. But the third turned out to be very, very different.

“I left school early (there was a tube strike that day), said my goodbyes, but instead of going home I went straight to my doctor, close to home. Home was about an hour from work, via tube and bus. Within a very short period of time, I was admitted to Whipps Cross hospital and hooked up to machines keeping me alive.

No memory of this day

“I have no memory of this day at all. In fact, I have no memory of anything since the time I told my wife that I needed to get home from the shops. Nothing. No memory of teaching, travelling, talking. That realisation was quite scary.

“At Whipps Cross, diagnosis took a while. I was in ICU for a few days. Then, after no response, I was moved to a palliative end-of-life ward, my wife was asked about organ donation and told that they were removing life support, which they did. I continued breathing, albeit in a comatose state.

“During this period, end of life, no treatment was forthcoming, no food, no water, just a little sponge to wet the lips. I wasted away very quickly, my weight plummeting to 55kgs, a loss of about 15kgs. Miraculously, I survived, opened my eyes and was then rushed back to a general ward. A period of rehab was next.

Profoundly deaf

“I can’t remember if I could hear anything when I woke up. I seem to imagine I could. But I probably couldn’t. My wife asked me if I wanted to watch TV. I said ‘yes’. She handed me the headphones, I put them on and then I said ‘no, these headphones aren’t working, give me another set please’. She tried the headphones and said ‘Paul, these headphones are working’. I tried again, ‘nope they’re not working’. My first frustration at being profoundly deaf.

“I remember a doctor telling me, it’s probably wax, but I knew that it was bad because I couldn’t hear anything! I can’t hear myself breathe, or talk. Both cochlear were completely destroyed through ossification. At first I thought maybe it’s temporary, maybe I’ll get my hearing back.

“My balance was also very badly affected, and I had to learn to walk again. It took months, and I spent a year doing physio. I was examined for a cochlear implant and had my first in 2011. Because of ossification in the cochlear the insertion of the electrode array was not good, so it never worked optimally. I now have an auditory brainstem implant which provides a semblance of sound. I rely almost exclusively on lipreading now.

Attempt to find out what happened

“Because I have no memory of those initial days, I attempted to find out what exactly happened. First, I had to find out the name of the doctor at my surgery who saw me. Unfortunately, she had left the local practice. Thank God for Google! I managed to find her about 80 miles north of London. My wife and I planned a little road trip and I made an appointment with her at her new practice.

“She told us that when I came into the practice, it was not open yet, and the receptionist told me that I had to come back later. But the doctor was also in the office area and overheard and told me that she would see me as she could see I was agitated. Then in the space of a few minutes I changed completely. I started scratching around and became aggressive. Fortunately, she realised something was seriously wrong with me and called for an ambulance. If she hadn’t been early that day and in the office area, I wouldn’t be here today.

“I am fortunate because I am still alive, even though my life is more of a challenge now. Before, I enjoyed my job and interaction with colleagues. I’m now at home. Unemployed. I can’t teach any longer, so it has been a very tough experience, not just for me, but my wife and children too. My friends as well. I think loss of income has been the greatest impact, and of course loss of hearing affects everything. There are dark days, I feel worthless and I wish I was more productive, but I am essentially an optimist. I believe in better.”