I don’t know where to start really. It’s a very long and complicated story, which has gone on for about 2 years now, but I’ll give you the shortest version I can.
My name is Catherine, I’m 27 and from the midlands. In around October 2009 I had just completed my masters in youth work and was working in the university registration office, enjoying not having to study for the first time in about seven years! Then all of a sudden, I was in Beaumont hospital’s neurological unit, in severe pain.
I had suffered from what is known as “Arnold-Chiari Syndrome” where the flow of fluid around the brain had become blocked at the base of the skull, causing my brain to swell, putting pressure on my eyes, neck, jaws etc. Apparently, it is common in children, but not people my age. Unlike many brain injuries, at the time there didn’t seem to be any obvious cause that triggered mine, it “just happened”. I still think it may have had something to do with leaping round at gigs, which I love to do, but I’ll never know for sure.
To be honest, the first month or two in Beaumont are very hazy. After emergency surgery to remove the blockage, I seemed ok. But it was only when I had a second operation to put in a shunt to release fluid and I failed to wake up for about 5 days that things became very bad. I remember none of this, bar waking up and seeing my aunt beside me and asking her for scones!
My family and friends were amazing during this time, even though it’s all very vague to me. My Mum and Dad travelled up from home every day (normally this would be over 2 hours drive on a good day), through the Big Freeze of November and December of 2009.
I was moved back to Mullingar for my birthday and Christmas. I don’t remember my birthday even though the staff gave my family and friends full run of a waiting room that they decorated and surprised me with. Apparently I asked my friends why they kept quoting Katherine Lynch, when all I had done prior to being sick was exactly that. I used to get jokes they made a few minutes after they made them and then kept repeating the same joke over and over again to myself. I think the nurses had heard the “see dat wall…” joke a million times.
From Christmas on everything is pretty much clearer. I missed my Christmas Day dinner, because I was on a drip and even though I had visitors and presents it wasn’t the same as being home, helping mum, watching The Sound of Music and going to midnight mass. I was moved back to Beaumont New Years Eve and spent most of January unable to eat anything because of the bad reaction to the medication I was given for my brain.
It’s odd what happens when you’re in hospital for long periods of time. You meet so many different types of people with different stories. I still think of the lady with the orchids or wonder what happened to the nice girl with the lovely little children. I think of them often, what are they are doing? How has their life changed? I suppose if I have gained anything from my experience it is to be aware of other people and their needs and how simple actions can change one person’s life forever.
I ended up having 6 operations on my head in total. I can’t say I wasn’t scared going to the last few. Being 27, it’s not your parent’s job to hold your hand anymore and as I’m single I often felt so alone going down to theatre. The longer my illness went on the more I came to realize “oh f**k, I’m actually really really sick”. I am by nature a very laidback person, but there were times when my patience became very very strained.
Eventually things started to improve very slightly. However, I had to learn to walk again as I had no strength in my legs and my balance was awful. Friends of mine though it was hilarious that I had a little walking aid to push around and “pimped” it up for me with stickers. I’d also lost my eyesight, which gradually came back over time. I still have no peripheral vision in my right eye, but wearing glasses and occupational therapy has helped a good bit.
I think it was 3 days before Easter I was discharged and I was so happy to be back in my own bed. I hadn’t lived at home for long periods of time since I went off to college in 2003, but I will always remember how great the homely smell was when I walked through the door.
After Easter I spent 5 weeks in The National Rehabilitation Hospital. I found the days long and tiring, with loads of phsyio and constant assessments from OT. I can’t say anything bad about it, the staff were lovely and so helpful, but a lot of the patients were much more in need of the services then me. Maybe because I am younger, but I felt somewhat out of place at times. But it was an experience I suppose.
It’s almost a year now since I left Beaumont and I would say I am not 100% back to normal, but I’m getting there. I can walk properly (just not in heels!), I’m very independent, deal well with crowds and public transport, have better eyesight etc. I go to gigs again, but I will never mosh around like I used to! It’s still hard at times, my life has changed and I now have to find a way around doing things the way I used to. It bothers me that I’m a qualified youth worker, but I’m physically unable to do that job right now. I really did think I had found something I was good at and enjoyed. But I’m starting a course in Graphic Design in September, so it’s just another way of getting around an obstacle that stops me from being a youth worker.
As I said before, I have an amazingly good and kind family, who are closer now then they were before. I suppose being ill has made me understand them more and they me. I sometimes feel like I get a bit of cabin fever living at home, but at least I have set moving out and moving on as a goal for myself. I think being strong enough to pull myself through physical pain and come out almost normal gives you courage. And what is normal anyway? Life is always changing and giving you hills to climb. Some are just a little bit bigger than the others.
Further Information on Arnold-Chiari Malformation can be found at: