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.
Comments
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.
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
I certainly do appreciate your insights and sharing more than I can express here...so thought provoking and enlightening
Brightest of continued Blessings to you all ways
oxo
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 :)
Rachel