Today is World Meningitis Day. This is my story….

I don’t remember much past the muffled music of CD UK and vaguely insisting to my Dad that I was in bed whilst I was actually laying on the bathroom floor. My Mum had been visiting my Nan who was terminally ill in hospital and came home at 8 o’clock. She found me unconscious. My Dad thought I was sleeping. She called the family doctor who called an ambulance and I was taken to hospital. I don’t remember anything for another week.

The only memories I have of that time is knowing that I was in a room that was dark, that I couldn’t see properly and there were also whirring noises in my ears. My Mum, Dad, and sisters were in the room with me wearing gowns and masks. I could have been an extra in some post-­apocalyptic zombie-fest film. I do remember trying to convey that my older sister had to leave the room because she was pregnant at the time, so I was obviously aware that there was something wrong.

I always say that I knew I wasn’t going to die but I’m not sure if that’s true. Is it just something I say because actually I have no idea what happened during those days?
When you’re 18 your ‘grown up’ life is just starting, the fun, friends, relationships, boys, going out, getting drunk, being wild and crazy, and I had started a little bit on that journey and then it was snatched away from me.

I spent a few weeks in hospital. Initially my parents were told that I would die and then the Doctors changed their minds and said that I wouldn’t die but that I would be paralysed from the waist down. I remember the doctors scraping that thingamajig stick on the bottom of my feet, I’m not sure if I did feel it? Slowly the feeling did come back. I do remember the whole ward cheering the first time I got up out of bed and went to the toilet rather than use the commode, assisted by my Mum and a nurse I might add. The doctors said with physiotherapy my legs would get stronger and I wouldn’t need walking aids. I’d like to add that those nearest and dearest to me would probably suggest otherwise as I am very clumsy and am always the one who trips and stumbles, sometimes over a twig, leaf, or air, sometimes my own feet. (Hence my recovery now post hip replacement being ‘slightly’ tricky.)
My hearing and my ears were a different thing.

Having a sense taking away from you overnight is traumatising. To go from perfect hearing to imperfect. All those songs that I loved. All that music that my sister and I would listen to in our bedrooms and dance to. All those heavy beats playing out in the clubs me and my friends had started going to. Lucy my cat purring. Watching TV. Conversations with more than one person.

All that changed for me.

It’s really hard to explain to somebody when you have imperfect hearing what it is you can actually hear. When people tell me to turn the volume up, that isn’t always helpful, clarity is important. When people joke and say do we have to have subtitles on whilst we watch television, my reply is, no let’s just put the TV on mute and then you’ll be able to hear what I hear. I make my own lyrics up to songs if I do listen to music. Pre hearing loss I was a huge hip hop and R&B fan and it’s music which is so hard to listen to now and I can never understand the lyrics. I never listen to music.

Things that happen when you’re partially deaf…… get shouted at. A lot.

I’ve been told I’m stupid, rude, ignorant, stuck up, not interested, etc, because I haven’t heard someone. Someone once told me that I should just try harder at listening…….
This is who I am and this is my life and I get on with it and I cope how I can.

I don’t want to go to the theatre because the minute that actor or actress turns round and I can’t see them then I can’t hear what they’re saying.

I don’t want to go to a venue where one person is talkng on a stage and maybe 200 people are in the room and I’m at the back because I can’t hear what they’re saying.

I don’t want to go to a dinner party with 10 other people because I can’t hear what everyone is saying. I don’t want to go to a gig and listen to a band because I can’t hear what they’re singing.

I will go to the ballet.

I will go to an event which is small.

I will go to an event that is small and that I can be near the front or right at the front to hear better, I don’t sit at the front because I’m a swot or nerdy, I sit at the front so I can hear.

I will go out and dance to music I know pre hearing loss because I can remember those lyrics.

And these things are so important.

Please don’t whisper to me.

Please don’t put your hand over your mouth when you talk to me. Please don’t shout when you talk to me because it distorts the mouth and makes it harder to lipread. Please don’t turn away when you talk to me.

Please don’t ever say so it doesn’t matter if I didn’t hear you even on the second attempt.

Please don’t think I’m stupid, rude, ignorant, stuck up, not interested because I didn’t hear you.

BE AWARE. Know the symptoms.


Today is World Meningitis Day. This is my story….

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