I always wondered what it would be like to set up a meningitis anonymous group, you know, ‘Hi I'm Jonathan and I'm a meningitis survivor’ we could call it Meningitis Anonymous. Now you’re thinking what planet is he on and why on earth would you want an anonymous support group? Because I'm bloody angry that’s why.
Yes I am a meningitis survivor. I will forever be eternally grateful that I survived being the very small minority of people who have the viral strain so seriously that it’s near fatal and lived to tell the tale. I know what I've been left with isn’t half as bad as the things other people have to put up with but I'm human.
I was a fit and healthy 39 year old when I caught the disease, my brother coincidentally had viral meningitis four months earlier than me although the cases are not connected. I was racing triathlons, had a great job with an amazing employer, was (is!) married to a wonderful woman and had (have!) two gorgeous daughters. Just when you think you have it all…….
For ten days before the attack I had a headache and kept losing my balance much to the amusement of colleagues and family since I would just suddenly and for no reason fall over, even standing still. Then followed hospital, blue lights, sirens, lumbar puncture, being discharged too early, rushed back in three days later with veins collapsing, heart rate and BP dropping to dangerous levels, again and six months off work. That’s six months I can barely remember although for some reason I do remember my mother in law wondering how she was going to get home from our house as I was being loaded into the ambulance the first time….not sure why I remember that!
Now I haven’t lost any limbs and I look healthy and for that I am grateful but my life will never be the same again. I'm angry about what’s going inside.
So how much can viral meningitis affect you? Well I now have seasonal affective disorder, irritable bladder syndrome (sorry about mentioning that one but who’d have thought that one possible), a metabolism which has a mind of its own, no really it does; I once metabolised 5lbs of body fat (from muscle to fat apparently) in a week for no apparent reason, I am intolerant to cocoa following a brush with my brother’s industrial strength version just made with water and high grade cocoa (I was warned that I might develop strange intolerances if I had some foods in too high a concentration), I'm intolerant to orange juice, I have Mollaret’s meningitis, when I'm tired my body is caused to twitch by a brain still under strain, I am very sensitive to caffeine, can’t drink certain squashes, energy drinks, sports drinks (I'm still a triathlete), have a constant headache, suffer pins and needles in my lips and face at times, had to have five years off strenuous exercise, have short term memory problems with names, routes and directions, behave like I'm drunk when I'm tired even though I don’t have alcohol (no I can’t have that either) and periodically my brain has a Microsoft moment, it just drops out so that I don’t know where I am or what I'm doing for a moment a bit like ‘this brain has stopped responding, please reboot (go to sleep) or contact creators (parents) for advice on how to proceed’, constant pain behind my left eye, I don’t see my brother in law anymore (no hang on a minute that’s a positive thing) and I get confused easily even if marginally tired.
Yes but, people say to me, you’re still alive. Well unless I'm writing this from beyond the grave yes I am and I know lots of people don’t make it and lots of people have much worse visible symptoms. I know all that but, me, I, personally I'm bloody angry that a disease can do all this, affect me so much and leave me like this. Why can’t I be angry, why do I always have to be eternally grateful all the time as if the meningitis did me some sort of favour by not killing me? I survived principally because I was fit and my system could take the battering the disease gave it.
So I think my message is that whilst it’s good to be grateful it’s also OK to be angry so maybe that support group introduction should be…..’Hi I'm Jonathan and I'm an Angry Dad.