When Internal Experience Does Not Match External Appearance
Prompted by a flurry of heartfelt Facebook notes from my POTS peeps regarding Invisible Illness Week, I had an opportunity to look deeply into the eyes that look back at me within the mirror and acknowledge my own deep longings or dark thoughts about having an internal experience that does not match my external appearance.
Whereas many of my friends dislike the puzzled inquiry of others, “But you look so good, how can you be sick?” I must admit, if someone says that to me, in my no make-up middle-aged gravity-baggy body, I enjoy the complement. I have no problem explaining the bifurcation between what you see and what you get.
Back in my college days, a mentor said to me, “Nancy, I don’t understand how you can be so bright, yet not be able to spell at all?” With conviction I replied “It is because spelling doesn’t have anything to do with intelligence.” And in much the same way that dyslexia does not correlate with our IQ, our appearance does not always reflect the state of our well being.
I sometimes tease with my friend who also has momentary lapses of her own divine nature and we chuckle that we must have gotten into the wrong line for this incarnation on earth. As apparently in my case the queues for Looking Good or Good Health were mutually exclusive and my spirit body picked the wrong option. Actually for me it was a package deal that included Good Humor, Great Sex and Gifted Kids … so I can’t beat my higher self up too much for not reading the fine print in the Invisible Illness Clause that I would have concurrent enrollment in during this lifetime.
My appearance of well being when the sunlight glows on my gray hair, is not the only conundrum of inconsistency in this cloak of chronic illness. My high-tech as well as artistic skills enables me to produce an eye catching web content when by chance I am having a hour or so of unimpeded workability. However, being able to blog when the planets align themselves ever so briefly is galaxies apart from being able to turn out a project within any given time line. There are simply so many things that I am good at, and that I would like to do for people from retro-vision boards to board room presentations, or trouble-shooting a computer program for a non-profit organization. However as it is, I simply don’t have the energy or the consistency of a body that will permit me to perform these tasks within a project timeline.
Even people who know me can sometimes misunderstand the nature of the beast. When they ask if they can come by for tea next week and expect that I’ll know in advance how I will be feeling as opposed to not even knowing a half hour before what will happen when the clock strikes tea. Well meaning, kind people, have even suggested that I “rest up” the day before so that I can be “well” for a special engagement. How wonderful it would be, if indeed we could store up our health in tiny bits that we tuck away, much like a health care cost savings plan that we draw upon when we need a co-pay. However, for me there seems to be no government bailout coming to save my chronic health crisis.
What there is … is this moment, when I can make a little animated gif that makes me chuckle and share a few scattered thoughts about what it is to live with an invisible life limiting illness and give thanks to all of those I have met along this path who are amazing, inspirational and generous. I am quite certain, I did in fact, get in the right line after all.
