Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.
Sometimes it’s funny, other times it’s frustrating as hell.
All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.
Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.
With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.
It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.
I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).
I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.
I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.
*if I can find it 🙂