Ten years ago today (24 July 2014) I woke up with a flashing square in my left eye, like the blinking cursor on a Commodore 64. It was the start of one of the most dramatic and terrifying periods of my life that has left me permanently scarred.
Trigger warning: This post discusses viral meningitis and includes a discussion about death and dying.
Eight days a weak
After eight days of poking and peeking by various medical professionals, it was finally decided that I may have contracted viral meningitis and I was packed off to Victoria Hospital, Kirkcaldy for some brain scans and a spinal tap. By this point my constant headache had been turned up to 11.
The flashing square in my left eye had grown to the point that I couldn’t see clearly, and my right eye had joined in too. I was effectively blind. If I lifted my mobile phone to within an inch of my right eye I could make out the blurred characters on my screen and I kept in touch with the world that way.
Eyesight
In September 2014, two months after this sorry episode had begun, I turned my PC resolution up to max and cafefully tried to recreate what my vision looked like. I created the image above.
Everything was blurred with the central portion of my vision gone, replaced with a rough black square. There were also a lot of flashing lights—at first, big blobs of white light that shone on and off like lighthouses in a storm. Then hundreds of multi-coloured specs of light that sparkled constantly whether my eyes were open or not. And finally what looked like a string of white plus symbols that moved constantly across my vision like a primative version of the computer game snake, slowly getting longer as the days went by. It was nothing if not entertaining.
Recent scans of my eye have shown me exactly where my eye was permanently and physically scarred by the virus.
Hospital
It felt like a long and lonely stay in hospital. My mum and siblings were unable to visit, I saw my then-wife and children once. Gary, a good friend from the University of St Andrews visited me and brought me a small LEGO model. And I received a visit from a well-meaning hospital chaplain who just wanted to tell me about Jesus—I had kind of already heard about Jesus what with me holding two degrees in theology and having been an ordained priest for nearly 15 years.
At one point, just to shift my focus over the long and solitary weekend, one consultant pondered whether it wasn’t meningitis after all, perhaps I had experienced a brain haemorrhage like my father had in March 1983. An MRI would give them answers. But not quickly: this was now late on Friday, I needed to wait until Monday.
You can read about my full experience from initial symptoms to a few days after getting home from hospital in the post Viral meningitis is a pain in the neck.
One night, during that long weekend, I was sitting up in bed clutching my knees, rocking a little to soothe myself and trying to gather my thoughts through the tears. It was around 2:00 am. “What if I have had a brain haemorrhage?” I said to myself. “What if this is it? What if I die?” Was I afraid to die? I decided that while I wasn’t afraid to die as such, I didn’t want to. But more importantly, I had an epiphany that during the previous 10 years or more, since getting married and getting ordained, increasingly I had become afraid to live. I made a promise to myself that I would say yes to life more. It’s a conversation I go back to often and reaffirm with myself.
Five months
I was off work for around five months mainly because my eyesight had become what I joking thought could be a feasible BBC Four ident:
The University of St Andrews and my colleagues in the digital communications team were amazingly supportive as I slowly returned to work on a phased return.
Legacy
Gradually my eyesight returned… mostly. I can now see more clearly with my left eye than my right which has a bit of a wobble that moves like a wave, like looking through old windows at the sea. I get my eyes checked annually and so far I am thankful that I am still able to drive.
It took longer for my energy to return. During my first week home from hospital, I was sleeping for around 18 hours a day. It took me a further 14 months or more for my energy levels to return to a level where I was able to function like normal again; which was the moment that my then wife asked me for a divorce. I don’t have the stamina that I used to have, but I have learned to rest when I need to, even if my sleep has been permanently disturbed by the disease.
The headaches … well, apart from a few weeks in July 2015 when they disappeared completely, those remained intense and constant for around five to six years. By that point, I lost count. Most of the time I was able to just accept they were there and ignore them. At times they gnawed deeply into my head and ground into my soul. I was on strong painkillers daily for over a year, codeine 30mg four times a day. But it only ever took the edge off. These days, I still have headaches most days but they are minor enough to ignore.
Another strange consequence of my post-meningitis life is that I am now randomly allergic to some foods. And I say randomly because I can be perfectly fine eating something one day but the next day, after eating exactly the same thing, it can induce me to vomit. It’s really weird.
And finding the right words when I am very tired can sometimes be a challenge. It can feel like one of those old films of a mechanical machine that clicks and whirrs and moves the pieces into place. Usually if I wait, the word will be brought to mind. I just need to be patient with myself and remember that I had a brain injury.
At the end of the day though, I’m thankful that I didn’t experience worse long-term side effects, but I do often wonder why me?! Why did I experience this? And I still grieve my better eyesight.
One of the greatest supports I’ve had over these last ten years is the Meningitis Survivors & Supporters group on Facebook, whether it has been answering my questions, simply listening to me, or reading other people’s experiences which has helped me to realise that I am not alone in this.
Onwards to the next ten years…
