God, that calculation between the increasing pain of standing and the professional need to participate in a department social event. The attempt to smile and make small talk while your body is screaming STOP. The way giving up and sitting down immediately exiles you to everyone else's waist level, the lone outcast in the middle of a crowd. You brought it all back so vividly. I got an unexpected reprieve from what I was told would be a lifelong condition, so I no longer face that minute-by-minute choice between isolation and pain at social events, but I remember.
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Beautiful writing. Please, more.
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Polio in babyhood is the gift that keeps on giving for decades. That's not a sarcastic comment. As mature woman, I understand physical challenges really are gifts,creating both self-awareness and empathy for others dealing with much, much worse. Wheelchairs, surgeries, canes and crutches (not to mention the orthopedic shoes and labored movements) aren't "me" any more than subsequent medical issues (cataracts, cancer, etc.) define "me." They're just what one has, like my freckles and curly hair. It's good these two friends can share their life experiences, as all friends do. They clearly are much more than their physical conditions.
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This is the truth: if you are not disabled, you are not disabled YET.
I came to disability late in life. People say 'you're are so brave': well, I don't think it's brave to live with a disability. It is simply 'brave to live', full stop. Life is hard.
I had to grieve for the loss of so many things: taking long walks, riding a bicycle, skiing, dancing, moving easily and gracefully through crowds, wearing shoes with heels. This list is endless.
Several back problems have compounded my sense of disability, but they may be over, for now. So I manage without a walker now, wearing only my beloved leg braces.
You are not disabled YET.
However, we will not accept disability easily, it is too frightening.
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This is beautiful writing. It is wonderful you found each other. For many years I worked to help people with disabilities then I became disabled myself with a chronic pain condition that changed my life. you speak eloquently of the effect pain has on a person's life. It can be so dispiriting. But I, too, thank God for my body.
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I don’t trust that student: he would say anything to get a woman to talk about her body.
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Thanks to you both for this beautiful and moving piece. I admire your strength.
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Nevison & Brown, thank you.
The image of a little baby, her legs in casts, clicking them together while she admonishes them - and takes control with baby words: the poet begins.
I worked for a while with people who had suffered disabilities -usually from birth, and have also heard Doctors talk coldly about the "procedures" that were necessary within hearing of the child, as if they were discussing car repairs.
The clueless student's blunt question may be a much better - useful - approach than turning away - making the entire you visible, but most of us don't ever face demands to explain what we have gone through in our lives as an opening remark.
I know a lot of people, like myself, now over 70. The incursions of disabilities, small and large, has made most far more aware of the demands of " normal" social expectations on those awkward, but necessary, loved and hated, bodies we inhabit.
They would probably gain a lot from your perspectives.
3
My ex-wife did not have a disability, but lost much of her hair during radiation therapy following removal of a brain tumor. She went to great lengths to comb her hair and powder her scalp such that it covered the boldness to a degree, but even when we were dating I would take offense to people staring, and would challenge them (to her embarrassment sometimes). She was stronger than I was. Finally, after much pushing by my mother-in-law and myself, she reluctantly went an got a very expensive wig, which required her to attend the wig place every month or so to trade for an identical wig and replace it with another. It was for us, not for her, that she got the wig. Years later, I felt bad for being so selfish and for being weak for not accepting her as she was.
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I relate in so many ways. Beautiful piece. I have MS and so frustrating going to parties or any events. I do have a dear friend who also lives with this disease and it absolutely helps us to talk. So few people understand.
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My 11 year-old daughter’s physical challenges are virtually identical to yours. I am continually striving to understand her experience and help her find words to express her feelings, both to herself and others, but I never feel like I am even coming close. I can’t thank you enough for so beautifully and skillfully describing your inner world, including, especially, your ambivalence. I will never be able to relate to my daughter like you and your friend relate to one another, but after reading your piece, I might come a little closer to helping my wonderful child find a friend in herself. That is one of my greatest aspirations as her mother.
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She's lucky to have a mom like you. When I was growing up as a kid with cerebral palsy, I had multiple friends who had it, too. We went through surgery at similar times. And we've reconnected as adults.
I've also connected with others who have CP and other disabilities and it really, truly helps. If you can find some kids in your area with disabilities for your daughter to meet, that might be helpful, too.
And as much as I thought I understood having CP when I was younger, I find I'm constantly recalibrating what it means for me because CP does change, even though they don't tell you that now. (Muscles start to change/weaken in the late 20s/early 30s, at least for me. Heads up on that one.)
Finally, thank you to the writers for sharing your connection so eloquently. I see myself in your words.
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What a gift it is, to find and keep a friend who truly 'sees' you.
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Incredible piece. Really well written and has opened my eyes to the things I, as an able-bodied male, take for granted. Thanks for putting into words how "explaining is an act of erasure" and the complex dual-mindedness you must experience every day. Great, great piece.
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I am curious about the author's age. I am 63, born with a spinal chord abnormality that went undiagnosed until age 39. No MRIs in 1954. After multiple orthopedic procedures to straighten the crooked or strengthen the weak, the chairless cocktail hour is not made easier by the libations. It does define me with strangers and adds layers to all relationships and experiences, just as this writer so eloquently details.
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Thank you for sharing your story. I was born with my legs turned in and my feet touching each other toe to toe. My mom tells me stories of how I would lay in bed clicking my casts together that I had to wear as a baby to straighten my legs while talking to them as if they were separate from my body. I remember the embarrassment in middle school from having to wear special shoes that would encourage my feet to turn outward. Orthopedic shoes are not stylish.
As an adult unless I'm really tired you would never know that I struggled with walking like a normal person. Unlike you I don't have scars because I didn't require surgery so I can pass most of the time. But fatigue gives me away. I start to walk with a pronounced dragging limp and people assume that I'm in pain. Ironically it hurts more to walk normally but I do it because it's less stressful for those around me.
The funny thing about such disabilities is that you develop a sense of humor. I can still walk with my feet turned completely inward. Adults find it creepy but kids think it's totally awesome. Honestly it's just me being me.
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Thank you, the dynamic duo. More, please.
5
I've only been disabled for about 11 years. I had a partial spinal cord injury due to a MRSA abscess on my spine. So I had 50+ years as a non disabled person relatively healthy and I spend my time trying to figure out how not to be bitter about my circumstance. People make all kinds of assumptions about my disability since I can still walk somewhat and I don't "look" disabled. I wish I could find a friend who would text me something on the order of "legs are the worst" I really need to have more humor and empathy in my current life.
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Cathie, you need a dog. If you can't have a dog, consider volunteering at a local animal shelter. It will change your life, and theirs. And, Dog people are the best. You will make friends. Best wishes.
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What Phyllis said. As a Facebook meme I read long ago said:
"God sent angels down to earth in the form of dogs with notes saying 'Don't judge, just love.' They ate the notes but they are still trying to deliver the message."
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I came down with bilateral osteoarthritis. Some days are better, some are worse, but all days are bad, really. People don't realize that though you are not in a wheelchair or have canes, every step is a struggle or at the very least, a pain. And yes, I walk dogs. These daily walks have become my exercise as not all classes around me offer restorative help. And yes, "legs and feet" are the worst. And yes, people, unless there are experiencing it, don't get it.
4
Sitting here by lantern two months after Hurricane Maria kicked the heck out of St Croix,, I skipped past the "disability" story. Who could blame me? No power. No running water. Still driving to well & siphoning water into plastic jugs.. My puppy had surgery 3x in the last week... But I did read it.
And Molly McCully Brown, you are one heck of a woman and terrific writer, but best of all, a beautiful truth-teller!
Katie Flynn-Melone
PS Looking forward to reading companion piece, but I've got to stop now. I'd put my cell in my car to charge, as is the norm now, but tonight car won't start. Your beautiful piece gave me a lift at an end of a challenging day.
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I am so happy that you two women have become such great friends. It's such a wonderful thing to make a friend who is on your wavelength. Once in a very great while we are blessed with this experience.
Looking forward to reading your collection of poems.
7
I'm so glad you found each other and then I found you both. Your words here today really spoke to me. Being at a party and trying to look like a "normal" person with a "normal" face, while the pain is causing serious static in the attic. How to sit, but not for too long....really I have not seen so much of myself reflected in something like this. I'm truly moved. Thanks
14
Beautiful writing. Thank you.
5
I was not born with any physical disabilities, but due to age, some heredity, and a few other random things, I now have significant pulmonary problems. I'm 74 which doesn't help a lot. I now also use supplementary oxygen. I'm now treated as if I'm old. But then I AM old! I don't let this bother me.
And I have learned humility. I am delighted to use those scooters with a basket at the grocery store, or anyplace they are available. I always ask for wheelchair assistance at the airport. I rented a wheelchair last April when I took my son and two grandchildren to London - no way I could do all that walking anymore. And yes, a wheelchair CAN be folded and fit in the front seat of a London taxi!
I have turned down invitations to parties where I know if will be too far to walk - huge crowd invited and I can't walk a block from the nearest parking place to the house. I don't go places where I know I must stand. If I find myself in such a place, I find a place and sit down. Eventually, someone may come over and sit with me. If they don't, I leave. What I cannot do is expect the rest of the world to revolve around me and my mobility/standing issues.
My limitations are what they are. I'm just very grateful I can still see and hear. There are always people in worse shape than I am, and I give thanks for what I have. I refuse to be defined by my limitations. But then, I am also fully aware that I was not born with them - they have come on with old age.
10
Moving. Intimate. Humbling. Thank you both. You're amazingly beautiful beings.
7
Why in the world would anybody go to a party where they would be in pain the entire time. I have a minor disability and would not do that. It is called a disability because it makes some things more difficult.
2
For the same reasons everybody else goes to office "parties." Truth be told, we are all technically in pain while there, but not going isn't really an option for most employees. Plus, if someone is already perceived to be disabled, they may not want to stoke the impression that they are too impaired to attend a routine work event, as excruciating as it may be.
This woman isn't asking for anything more than to share her unique experience, which she elegantly described. How will we learn about one another if we don't share our stories?
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