People had been telling me I should write a book/start a blog/document my life in some way for many years. I hadn’t done so until now for two reasons; a) I feel embarrassed about being in the spotlight in any situation – self-promotion does not come naturally – and b) the very thing that they have been wanting me to write about has been the very thing that has prevented me from doing so.
I didn’t actually think anyone would be that interested, to be honest. I also prefer to just get on with things when I can and not have to keep dredging up any difficult times. The ‘thing’ that’s prevented me up till now from doing this and that everyone finds so interesting is hydrocephalus. Pronounced ‘hydro-KEF-alus’. Try saying that with a mouthful of cream crackers without spitting any crumbs out; it’s great fun. The ‘KEF’ bit is in caps because people tend to emphasise that part of the word. I think it can be pronounced ‘hydro-SEF-alus’ (I gather many people in the States pronounce it as such) but personally I prefer the ‘K’; it’s a bit harsher, which to my mind fits the condition. There is nothing soft, gentle or fuzzy-edged about hydroKEFalus (I’ll start spelling it properly from now on. I don’t think it’s a good idea to intentionally misspell words for a long time). It’s a challenging condition to live with, yet many people don’t really know what it involves. You can read exactly what it does involve here.
When I got diagnosed (in March, 2000 – I got a headache after a gym session one evening and 18 years later, I still have it) there weren’t the resources around which exist now.
I didn’t even have internet at home and was too ill much of the time to make it to the library to book myself in at a computer. So I felt as though I was the only one in the world who had it. After many, many hospital stays and surgeries I started to meet others who knew what I was going through. Sharing stories with them helped SO much. So I thought that maybe if I wrote about how it had been for me (I’ve had 20 brain surgeries since my diagnosis) it might help others who, like me when I was first getting to grips with it all, may not be sure where to turn.
I didn’t want to sugar-coat this blog. Hydrocephalus can be really crap sometimes. Having brain surgery after brain surgery after brain surgery, for years and years takes its toll not only physically. It impacts on every area of your life, from work to socialising to relationships. It is a challenge. So blurring the experiences I didn’t feel would be helpful to those going through it. Honesty from doctors and others has really helped me over the years; I don’t want a surgeon to tell me it won’t hurt if it’s going to make me want to kick the walls. So I just write honestly. From the many emails I receive, I know that readers appreciate honesty, pleasant or not. So this blog is for anyone dealing with hydrocephalus or indeed, any chronic condition – much of the advice on here can be for anyone struggling with their health day-to-day. I do try and focus on the positives though; I’m a glass-half-full kinda gal! Drop me a line on the Contact Me page if you have any questions/feedback/opinions.