Seeking Sanctuary

Next Week is National Invisible Illness Week - so along with posting another Frozen Charlotte piece that is part of the Seeking Sanctuary series, I wanted to address life with chronic illness, as I do every September. 

I have read that it's not good to mix messages on a blog, that the content should be consistent, i.e., I have an altered art blog, so I should post altered art. However, the art wouldn't have happened without the illness and it a big factor in who I am... so, I'll understand if you stop reading!

The placement of the accent is the only difference between ‘in-val-id and its heteronym in-‘val-id. I don’t consider myself an invalid or invalid; however, both are quite apt descriptions for the initial years, those spent gathering pieces of a life scattered after a diagnosis that, while thankfully not terminal, in many ways has been interminable.

Those hazy, first years of ending one way of life and grappling to assemble another felt invalid in many ways. Before 2004, life was solid albeit fragmented. I’d been running a business, writing fiction, riding horses competitively, involves in my children’s school, social events. As it crumbled beneath me my identity slid away with the debris. In a philisophical light, identity means sameness, whatever makes an entity definable and recognizable. Without a wakeup call, it’s all too easy to consider ourselves products of what we do, sort of an evolving nametag. The buzz phrase, “we’re human be-ings not human do-ings” was the result of the tendency to over-focus on the doing. Mother, writer, business owner…  until that identity cracked I had very little awareness that I wore titles that described the things I did rather that me as a person.

Losing that identity that had served me well was, without a doubt, the most difficult part of learning to live with chronic illness. Particularly one that is nearly invisible, mostly imperceptible. The first years spent on the medication roller coaster did alter my appearance; anyone who has been on a high dose of steroids for a long period of time is certainly familiar with moon-face! And, while it was extraordinarily difficult to suddenly wear 3-sizes-larger clothing than I had the year before, at least I looked sick. The beginning of my transition to a low dose of prednisone translated to a loss of 50 lbs. in a relatively short period of time. And people noticed! Along with the whispered ‘are you ok?’ and compliments (especially from the many people who hadn’t known the ‘real-size’ me) came the conclusion that I was better now, doing great, finally!

Though it’s difficult not to reciprocate the enthusiasm, the fact was, and still is, that I was suffering from inflammation, joint pain and exhausted beyond belief. That the new, slim version sitting in the church pew, coffee shop, at the kitchen table, is in some ways a sicker me than ever. After smiling a gracious thank-you, what I didn’t add was that winning my disability case also meant the end of Tier 4 drugs - without the biologic I need,  this is as good as I’m going to feel. Gone were the eyedrops, how can eyedrops be so expensive?!, which eased the inflammation in my eyes and after 30 minutes my vision is often akin to a diver underwater without her mask. No matter how thankful I am for several good hours a day, part of me still mourns the loss of several more to this illness.

There are times, and many situations, when it is a challenge to remain positive and grateful. Missing another social gathering, spending several hours – or days – in bed after another stretch of filling in for my former self; but, I don’t hang on to that, instead I try to let it flow right on through me, it has become the river that I paddle day after day, no matter what. Yes, despite the negatives, I do not waste precious time feeling sorry for myself. At times I feel guilt, for not being ‘enough of a wife’ or a mom who sews costumes or cooks dinner every night… and the isolation can be difficult; however, the invaluable lesson I have learned is mindfulness. I care deeply, love abundantly, create passionately, reach out often and with sincerity, live with a genuine sense of gratitude. These gifts that have made me a bigger person than I ever imagined possible back when I was valid. Yes, it is ironic that invalid and invalid are spelled the same, while carrying vastly different meanings. My wish for you, if you are reading this and living with the burden of invisible illness, is that you can find the means to validate your life so that every ‘good’ moment counts.