Photo: Mason Kimbarovsky
Day 2924 – Day 3097
I’ve lost track of the days and weeks and months since I was last here. To be fair, I’ve lost track of the time period. I realized this weekend that I’ve lost more than 3 months of my life and I fear that I may yet lose more. I’ve been ill and the recovery is still ongoing. I’m back at work but I can’t work the hours that I did and even what I can do seems to be a daily struggle for me. Some days, I have to admit, I have felt hopeless. Because I’m at work, people don’t register that I am still ill and rather than accept what I can do as the truly heroic effort it has been on my part, I know that they resent I am not doing more. Unless you’ve been in the skin of someone with the old lingering C, you have no idea what a struggle it is some days just to breathe. When I’m not at work, I’m on bedrest. It’s not much of a life. And yet, here we are, at the same place this journey began.
When I began this journey of gratitude, I never anticipated that it would become a ten-thousand-day commitment. I was living one day at a time, accepting that I was ill and isolated and I had no control over when or if this would turn a corner and I’d return to normal. Life looked bleak, to be fair. Nobody understood except for the 6 women who were part of the same hospital study group and with whom I navigated a diagnosis that had neither a treatment nor a cure. The rest of my life could be filled with unpredictable disablement and the sacrifice of all energy to the necessity of earning a living to pay the bills. Some days, that cycle seemed a pointless pursuit of a life devoid of quality and filled with suffering.
And here we are again. Nobody understands. This thing comes in waves and is unpredictable. It is frustrating and people only see me when I’m well enough to leave my bed so they can’t imagine that I’m actually sick and I spend 16 hours a day in my bed, barely able to undertake the basic necessities of life. Somehow, I seem to have bent time and returned to Groundhog Day over and over again. Why do we never return to the happiest moments of our lives? I have no answer to that.
I’ve spent three months asleep and when I haven’t been asleep, watching videos on YouTube because that was all my brain could manage. I got curious about this Harry Styles dude and went down a rabbit hole of One Direction fandom for about a month. I came out appreciating the solo careers of each of the boys and realizing that music was much more soothing to the soul than most of the tat on YouTube. I started listening to music again and rediscovered my love for harmonizing that I lost, when Covid came, and we could no longer be present with one another to make music.
My world has shrunk even more than I thought imaginable after 2 years of isolation and distancing. It is just me. Just me. And my God.
I used to love travel and I’ve not been more than the distance to my city core in 4 years. In my delirium, I had many dreams where I travelled to new places and old beloved destinations. The dividing line between my waking and sleeping state these past 3 months has been almost invisible. When I would awaken from my travels, I was never quite sure – for several minutes – if I had actually been to those places. I’m not sure what happens to the soul when we die (who is?) but if we have a soul, I do know what happens to it when we are forced to sleep for long periods. We journey. I’m not sure that my journey has been pleasant but it has been profound. I don’t have clarity on where and why my soul journeys, but I trust that will come in time. Or, it will remain a mystery. I’d like to journey to Vienna. I miss my favourite city and it would be nice to go again, even if only in my sleep.
This week, I will be referred to a clinic for this particular malady. There is no cure. They really don’t know what to do but I will aid the research and be with doctors and practitioners that are motivated to support me and learn from me and others like me. Having been down this path before after a recurring viral pneumonia, I know there is not much on offer but a place to be believed. I’ve thought about my mortality and lamented that I’ve not accomplished this or that or left a legacy that I had planned. Oddly, that fell away. It seems to me that my intention has become to leave nothing behind.
My sister died just a year before I got so ill and I’m grieving the loss of her still. I’m also grieving the loss of my father even though he is still alive. There are many ways we lose an elderly parent before they pass on and I’m in a privileged position to experience the slow sorrow of it. Time bends and the loss of my mother becomes fresh again and I feel her here with me and grieve her, too, all over again. I don’t know why I’ve been gifted the early deaths of both my mother and sister and the slow loss of my father, but I’m choosing to see these events, and the opportunity to re-experience long term post viral complications, for a second time, as experiences that contain a hidden treasure.
I have anxiety and hair loss, debilitating fatigue, difficulty breathing and brain fog. My sleep is disturbed and my dreams are more disturbing. And then there are stretches where I feel perfectly fine. But then I’m slapped down again and the contrast is all the crueler. Although I label this as unpleasant, it is certainly an experience not everyone gets to have. I try not to envy the healthy who get on with living life vertically. I try not to get angry with the false virtue and lack of empathy of those who think I should pull up my boot straps and just get on with it like they did. Reacting to other people’s judgements wastes precious energy but I admit that I still do it. I’m human. I know there are hidden blessings of learning compassion for self and others who suffer, of letting go of the ego’s drive to accomplish and achieve, of dreamtime travel, of surfing the waves of panic and despair, and of focusing on every single breath. I may yet recover, over time. And, I may not. Either way this is a process of letting go, letting go, letting go. I suck at it. I’m petulant and prone to tantrums. This is a stage in the process of letting go and as uncomfortable as this anger and panic is, I will move more quickly through it if I allow myself to be present with the uncomfortable experience.
When the world shrinks, the aloneness is almost unbearable at times. Almost. Nobody said walking a spiritual path was easy. It is, in fact, a death. It can be painful or not. I suspect the difference is surrender. But, if there’s anything I’ve learned, it’s that I know nothing.
With these unwanted experiences, I am making the choice to find the small moments of gratitude: a cool breeze through the window, a beautiful piece of music, a few hours of undisturbed sleep and those moments where my breathing is easeful. When the world shrinks and time bends, even these things are sublime.
For what are you most grateful, today?
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