The last half of summer and the autumn of 2012 passed by as if in one long dream that I could never seem to fully wake from. Mostly couch bound…my body, in so much pain, was exhausted…with a new level of exhaustion I had not known before (with every level being one where I question the body’s ability to survive such a state, only to be succeeded by a deeper and more profound level of exhaustion...apparently the body survives). It wasn’t the light napping I had done in the weeks before leading up to this, but deep, night-like sleeps that I only half-roused from periodically to answer nature’s call or let the dog out or tend to my mom. As I reflect back on that time, I think perhaps that the sleep was a bit of a gift that I like to think of as a “saving grace”…that keeps one from fully realizing just how bad things truly are…or that we look back on with a “thank you” in our hearts for having been spared the details.
In the mornings it was difficult to get upright and my feet and legs hurt so much that walking was simply not possible. So, with what I am sure was some beauty and grace - not, I would roll out of bed onto the floor and crawl, both wrists and knees screaming, to the toilet. Mostly, thanks to the disease and its attack on the brain, I was pretty mindless about the whole thing…this is just what I did…and I did it without any thought. In reflecting back as I write this, I chuckle a little inside and think to myself, “but this is just exactly what the spiritual community lived for…achieving states of no-thought. Although, I bet that this wasn’t exactly what they had in mind,” however, either way I had achieved it for all that was worth…which did not seem like much...something akin to the let down in the Cracker Jack box as a kid when you were hoping for the ring with the secret compartment like the TV kept mentioning and instead got some fake tattoo that you put on with water.
However, on those rare mornings that I had a few brain cells firing, “good days” as others might call them, I would weep at my plight. Life just seemed so impossibly out of reach. Times like those, all the platitudes and cute little sayings seemed hopelessly lacking. And yet, every night, before drifting off…I would be the friend to myself that I so needed, and whisper aloud…“we will try again tomorrow.” And in a strange way, it was almost as satisfying as if someone else had said it.
Sometimes I cried because with just a little help I knew I could make it…and, again thanks to the brain dysfunction, I had no idea how to go about getting the help that I so desperately needed...much less how to ask for it because for whatever (idiotic as it seemed to me now) reason, I had spent my previous life being independent. There was a more aggressive treatment, but was told it would make me worse before getting better and without help (since I was already barely functional) I had no choice but to pass on the treatment. And this burned in me for I knew, on some level, that passing on the treatment meant that there was a chance that I may never recover…and the life I dreamed (mango trees and all the mangos I could eat to eat for breakfast…and health) would always only ever be that, a dream. Dark moments like this came over me like a cloud. In desperate attempts to restore optimism, I replaced it with a more immediate image that I could hold onto, “just let me live one day longer than my mom,” was my ever present plea. It felt to me as if I was in some strange metaphorical marathon-esc race with my mom, and I was trying with all that was within me to stay just one step ahead of her health-wise…that I could live out my promise to help her with her last wish, to remain in her home.
Caring for my mom was another one of those saving graces, it gave my life purpose…it made me get up each day, it is what kept me taking the countless numbers of pills that made me sick, it is what made me willing to endure the pain of eating…and it gave me the most important thing, for in times like these you find out what is truly important, something outside of myself to live for. Caring for my mom has been the absolute highest expression of love I have ever experienced and I felt blessed beyond measure to be party to and witness of it occurring…and so wonderful as to override any difficulties and challenges of the day to day tasks, and in the most wondrous way sustained itself...it was to my soul something to behold, like a seeing a mountain so beautiful that you never want to take your eyes off it. Over the years, using that as my model, I had learned to care for myself in the same loving way as I cared for my mom. And it was in this way that summer passed and slipped into fall and fall slipped winter.
Late Summer/Autumn 2012
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