Most of the time I feel invisible.
There are dozens of hours of video of me out there. My quilts and Net.Art pieces have been in exhibitions around the country and the world. My books reside on shelves far and wide. My words have been disseminated in print and online across the globe. Yet, more often than not, I feel profoundly invisible.
That is the nature of having a chronic illness that others rarely see, that does not register on the spectrum of the visually manifest. It is essentially unseen (except, unfortunately, by my family). It affects every cell of my body, and has over the years twisted my minds into profoundly dangerous positions, but to the rest of the world I am well, typical, exactly as my surface would appear. The fact that that is not me, is not the case, leaves me to feel invisible even in my most visible moments.
And invisibility is another form of solitude, but one played out even in the midst of the ordinary world. Its confinement is not physical, but psychological. I leaves me, and so many others like me, at a perpetual remove, watching the world rather than plainly in the world. It is the invisibility of feeling irrevocably a step apart.
We all have our burdens. I would never compare mine to anyone else’s. Each and every one of our struggles is tragic; there is no scale of legitimacy. That is the nature of trauma; it is always real, intense, and individual. I don’t write of my struggles with my body (and mind) to elicit empathy (or pity), but to explain, perhaps just for myself. The words I write are a means to making sense of the life I live.
While I am grateful for the many blessings (a term I use without religious connotation) in my life, no amount of good can cover up or erase trauma. It is a scar, a wound (more often than not perpetually open) that exists and is carried independent of the rest of a life. My wife, my children, no matter how much I love them (and they, me) can never eradicate the reality of and psychological effect of my illness; the extraordinary good of them can never truly touch the existential centrality of pain, of radical difference, of brokenness. Clearly they are a balm, but being soothed is not the same things as being repaired.
And that is the ultimate truth of this invisibility; even they cannot truly see me because they can only access the after-effects of my core condition, the ripples my illness creates rather than the stone it is in the pond of my being.
And there is my truth: it is impossible to see me. My difference is played out at the microscopic level, with mast cells and ion channels, yet I must inevitably reside on this macroscopic plane, a place where who and what I am will remain forever invisible…