Patti Edmon Altered Attic: Seeking Sanctuary

Thursday, September 6, 2012

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.


Lynn Cohen said...

Thank you for sharing! In my day job I often counsel folks with invisable illnesses. Your story added to theirs simply makes me more aware, more understanding, knowledgable and glad that in some small way I am being helpful.

Your art is wonderful and I for one am grateful that your "free hours" allow you to do it! I will imagine that the rest in between is time that you are perculating ideas for the next "up time".

Again, thank you for sharing. We all need to be reminded and more aware that there are illnesses that cannot be seen.

Jill Zaheer said...

Dearest Patti,
What a moving post you've given us- a gift to see your "invisible" now visible, your pain, your suffering and yet your spirt of determination to achieve, live and feel as much as you are able. You have such courage to be the phenomenal person you are who is so inspiring and creative. Your writing is gorgeous, your art moving, and your soul visibly brilliant. You are a testiment to how one can live with such adversity yet still have such drive. I am always in awe of your talents. Thank you for showing us who you are on the inside- that which creates the beauty we see within the pages of your blog on the outside! Hugs to you! xo

Mary Helen-Art Saves Lives said...

Thank you! I have been living with Lupus for over 25 years and I look so normal.... you have given your readers real insight! Peace, Mary Helen Fernandez Stewart

Caterina Giglio said...

well, you know how I feel about it, so many of us, look so NORMAL don't we... ? your piece is wonderful! x

~*~Patty S said...

First let me say that art and life are intertwined so blogging about each and all makes good sense to me

I certainly do appreciate your insights and sharing more than I can express thought provoking and enlightening

Brightest of continued Blessings to you all ways
p.s. your art piece is very inspiring too...I just got 3 frozen Charlottes in the mail and they need to come out of their box :)

Sharmon Davidson said...

I missed national invisible chronic illness week this year; I wish I had remembered to post something. I admire your courage. The ability to share this insight with others is a gift that I just don't have- or you could just call it what it is and say I'm a big chicken. Thanks for being brave.

Bluefinch said...

There are no words... You are valid. And brave. And beautiful!


angi eharis said...

all i can say to that beautiful writing is "ditto"! i sometimes thought that it is a curse to look "ok" in everyones eyes, but those closest to us "know" and love us and that is really what matters, so much to be thankful for everyday, art, family and i look at the ocean everyday all day from my little shack in the jungle! aloha and love, angi in hana


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