It was seven years ago today, 1st April 2009, that my 22 year-old son called to me down the stairs, “Mum, I can’t see” and a little voice in my head said oh so clearly, “From today your life is going to change”.
Never a truer word, as they say. First the GP surgery, then the Eye Emergency Dept. Right now as I write I can go back in my mind to where 7 years ago we were waiting in a row on the uncomfortable seats in the MRI unit, Sam’s head in his hands, trepidation in our hearts, knowing with all our medical education that raised intra-cranial pressure could only mean a space-occupying lesion in the brain… yet hanging on to hope against hope all the same. Waiting. Holding ourselves together and waiting for time to pass and things to be done and people to say things to us.
The scan showed large lesions – white patches in his right brain. He had no symptoms apart from the headache and double vision: absolutely everyone said “this cannot be a brain tumour!” It was unmissable, yet atypical… The ophthalmology consultant called the neurologist, they agreed that perhaps it was ADEM – a curable inflammatory condition similar in behaviour to Multiple Sclerosis. That was the ?diagnosis.
Sam was admitted to the emergency ward, given a lumbar puncture to measure and relieve the pressure, and steroids. I can still see him sitting on the bed beforehand trying to absorb the news – pale-faced, unbelieving, as we all were. It is not what 22 year old young men expect to happen to them. It was hell for his father – especially after he looked at the scan. I suppose I went numb – I always do.
So yeah – that was the start of a whole new life. Not all at once… he was treated, sent home, given regular appointments to have his visual fields checked. The high pressure in his head from the extra mass was the problem, damaging the optic nerves – especially on the right side. The lumbar puncture released that pressure for a while – until it built up again. He got into the habit, when the headaches got too bad, of asking for another needle to be inserted in his spine – he had about 3 during that year, I think – but that couldn’t go on: it was too dangerous. Sudden release of pressure from a swelled brain can pull it down sharply into the upper spine and cause death by ‘coning’. There came a time when it was no – “we have to investigate further, we have to do a biopsy”.
But we had 10 months thinking this was curable. A second opinion at Queen’s Square even backed up the ADEM theory! So we kept on living, going away on holidays – 2009 was a great year for holidays that we would never have taken if we’d known what was really going on… Funny how it all works out and how looking back you can trace a journey you never ever imagined was possible to walk. There was grace. Every day.
It’s a long story – perhaps the defining story of our lives. At this point I am considering making it into a book. That is my nod to the 7 years and this post may end up being the introduction to an anthology of blog posts, poems, reflections and photographs such a volume would contain. Sam deserves it and it may help me grieve. I am in the process of deciding whether now is the time to commit to that…
When a journey is shared it gives it meaning – and we all need a narrative to live by. I would like to think the lessons we learned can be given to others who, I hope, will never have to go through such times – and perhaps be an encouragement to those who are walking a similar path to our (so far) 7 year one.
We all need to learn how to both accept our mortality and stare down death. We all need to live one precious day at a time, fully aware of the gift of just being alive: I like to believe we have embraced that call, but the truth is I still need reminding. Sam’s story can teach us all how to be fully human – loved and at peace despite suffering and loss.