Or, What You See Is Not What You Get
People don’t really comprehend illness, disability or pain that they cannot see. So if you don’t look “sick” or “disabled,” if you look Fine and Normal, many folks have a hard time appreciating the fact that you are not what their visual assumptions have determined you to be.
I’m like the opposite of, As Advertised on TV!
Because so much of my time and energy go into coping with things that others are blind to, I often feel like I’m wearing a mask, or a full-on costume. It’s hard to breathe right behind those plasticy masks, and if there’s an elastic band, it’s always pulling on your hair or rubbing the tender skin behind your ears raw. That chemical perfume of synthetic/rubbery stuff makes your head hurt and feel too big. The get-ups never fit right. They’re either too hot and heavy, making you sweaty & sticky. Or the outfits are too skimpy, leaving you goosbumped and shivery, your toes and fingers, nose and ears going numb.
Some days I swear I’m going to have my name legally changed to One Of These Things Is Not Like The Others.
I feel like a book with a mismatched cover. Or, more accurately, I feel like an old, water-damaged, coffee-stained, dog-eared book with a broken binding and missing pages (that one edition with all the typos) tarted up in the latest glossy, colorful, glittery-blurb-filled cover.
How I look on the outside just doesn’t match who I am – what my life is like – on the inside.
I feel like one of those hotels that has a pleasant photo on travel websites but turns out to be a dump once you get there. I’m the Bed & Breakfast with gorgeous gingerbread detailing around the porch & roof eaves that has cracks in the walls and foundation, with plumbing, climate control & electricity that only work half of the time (if that). The sofa and back room smell like cat pee, the bathroom is mildewed and there are never any fresh towels; there are always dirty dishes in the sink; the window frames have swollen so the windows don’t work; you can’t open a closet door without a season’s worth of Hoarders falling on top of your head; there’s a loose floorboard in the hallway guaranteed to trip you up in the darkness. Plus, dang, that landlady is really Get-off-my-lawn! crotchety.
Which is all to say that I often feel as if I’m a fraud. Most of the time, with most people, I feel as if the “realest” parts of my life – of me – are invisible. Gosh, that’s a lonely feeling, ya know?
Please don’t misunderstand my intent. I don’t want people to pity me, to feel sorry for me. I just want to be seen, truly, wholly. Which is what I think we all want. Don’t we? To be known not for what we look like, but for who we are when what we look like is subtracted from the equation. Who are when pretenses, prejudices and misconceptions are lifted off of us.
I come here and share my experiences with you. I tell big stories and little stories. Not all, but many of those stories are shared with the hope of helping others (and sometimes myself) see a little clearer. And for those who already understand only too well, my hope is that you will experience that grace-filled feeling of not being alone in your struggling and suffering, that unmatched relief of being heard-seen-known, because somebody else “gets it.”
Seeing and being seen, understanding and being understood, knowing and being known – I believe those are sacred acts. When we bear witness, the watched and the watcher are transformed, they are connected. Stories – telling them, reading and listening to them – are about bearing witness. Stories are about making connections.
Writing this blog is about giving voice to what it’s like to live with MS. Or I should say, what it’s like for me to live with MS, because everybody experiences multiple sclerosis in a unique way. I’ve been thinking lately that I need to do a much better job (as a writer) of sharing in ways that help you (as readers) really understand. Which I know (because I’m both a student of and a teacher of writing) means being more specific, giving more examples, and better, clearer details. Context is helpful in moving toward understanding, too, I’ve found. Point is, what I’ve concluded from all of this thinking is that I need to share more (quantity), and I need to share better (quality).
Perhaps something I share one day will be a case of seeing for the first time, like watching while a photograph – of a place you’ve never been to, a person you’ve never met – develops right in front of you under the ruby glow of a darkroom light. Seeing things and people in new ways, seeing people and things for the first time, seeing new things and new people – all good. Maybe something I share will cause you to watch the people around you with different eyes, with vision that realizes we’re all, in one way or another, wearing masks, invisibility cloaks. We’re all mismatches of outside/inside. Whitewashed picket fences (Facebook photos & Status updates) can be so misleading.
It’s Different December (which I’ll explain later), so I’m taking action to make the changes I want to see in my life. Today, I commit to being a better storyteller. I commit to listening and seeing with more care. I commit to bearing witness – of you, and of myself. I commit to connecting. Because that’s what this blog is about. Because that’s what life is about. Connecting is what we’re born to do.
Beautifully written. Love you 🙂
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jodi flewelling said:
Thank you for your heartfelt postings. The more I read, the closer I am to tears with the knowledge that I am not alone in the mascaraed of normalcy while coping with an “invisible disease.” Mine is the genetic nerve disease Charcot Marie Tooth which translates into… ICKY LIFE SUCKING STUFF!!!
My husband and I found your beautiful blog through trike hobo’s site. We both ride recumbent trikes (my freedom)
I wish you nothing but joy in the simple things and the knowledge that you are making a difference.
I was just telling Steve – AKA Trike Hobo – that sometimes I wonder why I bother with my blog, because I’m not sure what I’m writing matters much. Thank you for reminding me that sharing – connecting – always matters.
I hope we get to ride together someday,