It’s taken such a long time to be able to write. There are a few reasons for this. ‘Normal’ things, like life has simply been too busy – something that is amazing and that I will always be grateful to be able to say. But there is also another reason that stands out. Before I write I generally have my words worked out, albeit roughly. My final text might not end up how I thought it would, but at the start I always have an idea of what it is that I’d like to say.
But summarizing how I feel and everything we’ve gone through these past eight months in a short blog has felt impossible. There are so many emotions and so many changes and all of me wanting to look forward but also being sometimes – too often, I think – pulled back. The years on dialysis and my fears for my health and future have certainly – but understandably – conditioned me.
So in my life and my days, just like here on paper, all of this has left me slightly dazzled: an odd combination of being wildly, ecstatically optimistic about each moment and the future free of dialysis, while also being confused and unsettled about how I got here, and about what might be to come.
Though I realise this must sound obscure. Abstract.
Life after dialysis and with a new transplant – the psychological and emotional aspects and toll – really can be hard to know and explain. This is even to me, and this is my second time. Even writing this now, it’s as if I am holding up a mirror but all I see is a blur.
But if I can get this down here, focusing on the black and white and not the unknowable spaces between, does that mean that I’m on my way to figuring it all out?
Meanwhile I should say that this is my sixth time trying. I’ve drafted blog after blog since my transplant. So far none have been right.
The past eight months have been one of the most miraculous periods in my life. Life has been completely transformed, and in the most wondrous of ways. At the very top of these ways is that fact that we no longer spend four days each week – for up to eight hours a time – at hospital for dialysis. This time – together with now having kidney function and being well – enables me to do an amazing number of things. To work more. Exercise. Spend more time – away from hospital – with family and friends. To garden. See movies. Go out to dinner, and even have a cocktail before. To stop and really think about what we are doing tomorrow.
But still, in some ways the past eight months feels like the longest of times. As if by taking things day-by-day the days have stretched into years. In other ways, it feels like only a few days ago we received the call that a perfect match had arrived. Six months before my transplant we’d been told a perfect match was near impossible for me. Back then, we’d been told to expect dialysis for around another five to seven years.
And although several months after my transplant, we are also still not quite through the trickiest of times: the first year after a transplant is hard work. Constant tests and reviews. Medication changes. Creatinine – kidney function – spikes that send you on a whirlwind of stress and panic. All of this makes settling in and finding your new normal challenging. It has certainly taken me longer than I had thought it would.
But through all of this, you see so clearly what life without dialysis is like. It is so hard to sum up other than to say it feels so free. So much like a miracle.
This is perhaps in part another reason why the past eight months have been a little like a timeless time: I am euphoric with my luck and my chance to now do everything, but simultaneously not yet quite trusting this luck and time.
It often still feels like a good dream.
And like all good dreams there is the fear of waking up.
But every day I inch closer to trusting my miracle. And every day I am able to now embrace so many things, being free, which I would never have let myself even contemplate imagining before.
I will continue searching and imagining and dreaming and enjoying the thrill of living without dialysis. And while I know I will continue to be pulled back, perhaps one day I will look at it all – dialysis, my second transplant, my recovery and life as a whole – and I will realize, to my surprise, that I’ve been awake all along.
My fear of the dream ending will have become no more.