It’s been twenty years since everything changed for me in terms of my health.
1997 was the last year of my ‘normal’ life.
2017 was the twentieth year of my chronic illness wheel-life and I’ve found myself (maybe understandably?) nostalgic in writing this, my 22nd health update post, reviewing my 2017.
I think the nostalgic mood is not just because surviving – which hasn’t been a given – to the twenty year anniversary feels significant to me but also that D’s mum died in April, my young cousin in December. I’ve found that major loss in life, as with illness of our own or those close to us, does make us all look back, reassess and consider what’s to come.
So, rather than documenting what was, for me, an average – so a good – health year with just two major relapses (and hospital visits), dealing with the ongoing pressure sore problems, surviving our domestic chaos and planning forward to make life better, I thought I’d share a significant memory of mine from the past … a transitional moment, something I’d written a few years ago on a writing course and looked up in my process of reassessing the past twenty years of ill-health.
From August 2001: I remember …
I remember that day so well.
I remember the time of my appointment. It was at two o’clock in the afternoon – after the morning clinic, before rounds. We still had to wait to be seen. We were used to that by then.
The office was ugly. They were always so ugly. Chipped paintwork. Broken blinds. Cheap furniture. Poorly lit. And crowded, so many people to watch and listen and observe. We were used to that too.
“We have done all the tests and tried all the regular treatments. There is nothing more we can do … no definitive diagnosis … uncertain prognosis … experimental treatment … severe side effects. This happens more often than you might think. You must not give up hope but you do need to consider the possibility that …”
I asked questions. We both did. Tears ran down my face but my voice was steady and gaze clear. I ignored the tears, expecting them to do the same but they were uncomfortable. They wanted to help, were discomfited by their helplessness. They expected uncontrollable sobbing but I was numb really, apart from the tears. It was so very final. All those tests and it had come to this. Expected but unexpected. How to go on?
Outside, it was a sunny summer day. We walked across the road to the garden square. It was one of those small oases that you find, unexpectedly, in London, slap bang in the middle of quiet roads and high Victorian buildings that were once residential, now, offices and hospitals.
Light, bright trees and intense blue sky.
I remember those most clearly. There were flower beds, with flowers but I have no idea what; paving – uneven and broken by the roots of the trees; dry, patchy, green foliage, against the iron railings on all sides; and, park benches, worn silvery grey, many with dedication placards to those now deceased. I imagine that they, like me, had once been grateful for this space.
There were living people too. A few were sauntering tourists hoping to find hidden city treasures. Some, city workers, late lunching, rushing through with no thought for moment or place. Others, like us, existed only in this moment and this place.
I remember the dappled sunlight, flickering on the ground. There was no noise, no breeze. A glistening spider’s web reached from the back of the seat to the bush behind.
I remember looking up and seeing the interplay of light and leaves reaching high into the blue sky. It was beautiful. I guess I didn’t want this moment to end. If I could just stay here, in this place, in this beautiful moment, no other reality would touch me. I would be safe and life would be beautiful. No ugliness. No destruction. Just blue light, green leaves and freedom.
I banished all from my mind and senses, sucking in only that elemental beauty as if my life depended on it. Perhaps it did. It felt like energy, strength, succour to me.
Of course, it was not. It was but a momentary reprieve from my new reality.
I remember it now, it was a blissful moment.