This is the story you’ve been told: you walked at nine months, ran at ten, and by eleven were doing somersaults upon somersaults until you collapsed red-faced from the motion, but most of all from the giggling.
By thirteen months, you had stopped all of this. You sat in one place staring into the middle distance with the concerned look of an old woman for whom the world was changing too fast. At fourteen months you said your first words, which were “knee” and “ouch.” You were rushed to the hospital.
Of course this is all hypothetical; your first memory is sitting on the orange shag carpet of the living room and staring out the French doors, trying to will the clouds to let forth the snow you knew they withheld. You wanted to build a snowman. Your wrists and legs were probably swollen and splinted, but it was a long time ago, and who’s to say? Then you were seven and yelling at Legos and jabbing them repeatedly with the butter knife, desperate to make them come apart and failing and knowing that you would always fail.
Your father is a sometimes Catholic, your mother a wannabe Buddhist, animist, existentialist, and lover of Zen minimalist clutter objects. Your house is filled with cairns, and Zuni fetishes, and somewhere a rosary, and sand paintings, and small statues of the Buddha. If you try to talk to your mother about why you are the way you are, she will ask, “Who said life was fair?” for the nine thousandth time, and your father will pick up your stuffed animals and jiggle them in front of you, making them say silly things in growly, odd voices, because when you ask certain questions both of your parents think that you are asking them to fix something you don’t think of as broken.
You can’t explain and they can’t fix it, and so in this case, their terror makes them useless.
Even at seven, you know that all of this is delicate and huge and that God is someone you’ll have to meet on your own. You’ll have to meet him alone, and there is no time like the present, you think, trying once again to separate the blue eight-dot Lego from the red four-dot and failing and knowing that you will always fail and that this makes you somehow different from everyone else. And even though it hurts and you know that is sad, it’s still such a small thing. And it is also the biggest thing, and you don’t quite know how to approach it. So you make a list of all of the things about you in the world that seven-year-old you knows to be true:
You are funny. You are smart. You are coordinated. You can cross your eyes. You are friendly. People like you. You are small and cute like a mouse. You are a good artist. You are a good reader. You are really good at swimming. You are covered in freckles that mark where the fairies have kissed you to sleep. You can almost whistle. You like to sing. You used to be strong like an athlete, but now you have Arthritis. Last week you learned to yo-yo, and on good days you can hula-hoop. You aren’t afraid of spiders or heights or anything else. You are happy.
You stare at this list and picture an old man in the sky and think and think and think until your brain overheats, and then, with a shivering zap, you can see it from his perspective.
God is a busy man. There are so many people he has to make and they all have to be different and they all have to get along and this is a lot, even for him. You know something of angels; you’ve seen them on TV. People on the street sometimes stop you and tell your mother that you are one. Basically, you think, angels are like God Juniors. They do stuff that he doesn’t have time for. When people tell your mother that you are one, it confuses you because you’re pretty sure God doesn’t need someone to draw pictures of wolves devouring schools and hospitals, or sing the scores to musical comedies from the sixties, but that is a different story. In this case, you are picturing the God Junior sky angels from TV, not whatever kind of angel people think you are.
You picture a factory. A people factory. It’s like an assembly line, but also like an operating room. It is clean and efficient and lit by the faint flickering of fluorescent lights. Groups of angels stand around rows and rows of operating tables. They are dressed in surgical scrubs, their wings covered in huge wrinkly pale blue sacks like the hats nurses must wear, but scaled up for the task.
God is usually there, but he has worked so hard for so long and maybe he has a fever, or maybe the surf is good, or maybe there is a flood or an earthquake, and either way all he needs is just one day off. And there in the middle of one of the tables in the middle of one of the groups of angels is you, or the collection of star stuff that will become you. The angels are tired and it is late in the day and they are discussing all of the other people they’ve made and how to make you different. They say:
Make her funny. Make her smart. Make her coordinated. Make her able to cross her eyes. Make her friendly. Make her likable. Make her small and cute like a mouse. Make her a good artist. Make her a good reader. Make her really good at swimming. Cover her in freckles which mark where the fairies have kissed her to sleep. Let her learn to whistle. Let her like to sing. Make her strong like an athlete. Let her learn to yo-yo, and hula-hoop. Don’t make her afraid of spiders or heights or anything else. Let her be happy.
On and on they went, letting the end-of-workday giddiness take over, until you were born — this hodgepodge collection of enviable traits. Time passed, and God came back to the people factory from whatever had called him away, and you grew and learned to walk and run and somersault until you collapsed with giggles and God looked around and said, “Who is that?”
The angels, smiling, replied, “She’s a little girl we made when you were gone. Isn’t she perfect?”
A worried look crossed God’s face and he inhaled deeply and paused in thought before the reply came. “She’s too perfect, and everyone else will be jealous and feel bad about themselves and be angry and sad! Something must be done!”
So God and the angels worried and paced in a big sky circle. They tapped their foreheads and they chewed the ends of their glasses and they pursed their lips and said, “Hmmmm” absentmindedly as they scratched their chins or stroked their beards.
“There’s nothing for it, we will have to kill her,” declared one angel, raising his finger to the sky.
The rest of the angels cried out, “No, no, no, no, no!” and, “Please no!” and leaned towards God, pleading with their whole bodies. “We really like her! Don’t make us start over!”
Again God paused. “No, it won’t do,” he said. “You see, I like her, too.”
Again they paced and tapped and chewed and pursed and said, “Hmmmmm,” and scratched and stroked their beards. They fired out idea after idea, creating a literal brainstorm that blanketed much of Europe in snow and shut down all major airports for several days. Unable to agree, they kept going, flooding the American Midwest with the sweat and tears of their argument. Causing hurricanes in the tropics, Santa Anas in California, and a haboob in the desert with the warm ferocity of their breath. When God finally looked down and noticed, he cried, “Oh no! Now I have to clean all that up and we still haven’t fixed our problem!”
He glared at his angels, fiery-eyed, and said, “As I see it, we have to take away at least one perfect thing from this girl, or everyone else will be too sad in comparison. I propose a ballot. All of us will write down the one thing that we are most willing to take away from her, and then I will do it.”
So the angels took hold of the pens and scraps of paper that had appeared in front of them and they crossed their eyes and squeezed their tongues between their teeth as they thought and finally wrote. When they were done the papers floated gently up and away, and with a tiny pop they disappeared. God shut his eyes and mumbled softly as he began to count.
“It’s nearly unanimous. If we make it so she is no longer strong like an athlete, she will still be mostly her, but people who meet her will be able to feel good about themselves instead of bad. They will be sad for her and tell her how brave she is when she does normal things, and this will make them happy for themselves, and she will be able to be happy and fearless and smart and well-liked and able to hula-hoop as she is now, with no harm to others.” He paused and looked inward. “I will give her Arthritis, and I will take this as a personal lesson to keep my eye on you numbskulls at all times.”
And with that the angels clapped their hands and danced around and hugged each other and God and congratulated themselves on once again fixing the world. God handed them each a broom or a mop and pointed to the damage their brainstorm had caused. He pulled a tiny pouch from his pocket and pulled an even tinier pinch of dust from it. He looked at the dust in his hand, and with a weary expression and a heavy heart, he turned to where you sat, closed his eyes, and blew.
Tags: arthritis, childhood, christine kathleen mcmahon, disability, health, stories
Crying at my desk. This was beautiful and so, so awesomely perfect.
Now I’m crying at my desk because of your generous praise <3 CKM (the author with an old school online pseudonym)
This is perfect.
Thank you! <3 CKM (the author with an old school online pseudonym)
“Make her a writer of perfect, heartbreaking prose.”
This is completely overwhelming praise, you’ve made my decade. <3 CKM (the author with an old school online pseudonym)
Stopped being able to even at: “lover of Zen minimalist clutter objects”.
😀 <3 CKM (the author with an old school online pseudonym)
This is so beautiful. If you haven’t read Christine’s other autobiographical piece along this line, it’s also really, really excellent, and I’m posting a link, because what if you’re friends with someone really spectacular, you have to brag a little. http://www.theactivityreport.com/mind/body/2015/3…
Thank you! Both of you.
🙂 <3 CKM (the author with an old school online pseudonym)
Hahahaha, thanks Kristen, you friend brag a lot! It is one amongst many reasons that we will, most likely, be friends for another solid 26 years or so, give or take. 🙂
Thank you for this.
Today I am fighting a nasty bit of depression; even if my fibromyalgia wasn’t diagnosed until I was an adult, my sister’s disabilities were almost all congenital or showed up in her first year or two, and today your words…found me, through the haze of physical and emotional pain. Which I say out of the selfishness of depression but also to try to lend force to my thanks.
Elysia, thank you for your kind words, I send my solidarity to you and your sister alike. Keep going! <3 CKM (the author with an old school online pseudonym)
I can’t add anything to what others have already said, but this is just really remarkable.
🙂 <3 CKM (the author with an old school online pseudonym)
you’re pretty sure God doesn’t need someone to draw pictures of wolves devouring schools and hospitals
No, I’m pretty sure God totally needs someone to do that.
Geez, now that you’ve said it, I think I may have to resurrect the tradition <3 CKM (the author with an old school online pseudonym)
That’s pretty awesome. I would think it was awesome even if I didn’t have depression/ADD, even if I didn’t have a former girlfriend with rheumatoid arthritis, 2 really good friends with Crohn’s, a best friend who was legally blind…shut up, gregm, this is not about you.
(And co-sign to God needing wolf drawings.)
Thanks for the kind words gregm! Solidarity to you and your friends <3 CKM (the author with an old school online pseudonym)
I love the story and I just wanted to share that this bears eerie similarities to how to a story I came up with to describe my life when I was a child.
God, as everyone knows, is perfect and only makes perfect things, But one day God was careless and made a mistake. God was creating a wonderful perfect soul of a girl, ready to bring into the world. But days before the girls birth, God realized a mistake had been made, and the soul of the girl was caught in the body of a boy. Unable to rectify the body at this late hour, God decided it must be destroyed, and smited the child as it was born. The baby fell deathly ill, and God was relieved that no one would know of the mistake. However, by some miracle of the Doctors, who worked tirelessly to save the child, or trickery of the Devil, eager to show the imperfection of God, the baby defied the odds and clung to life, freeing itself from the wrath God placed upon it. Battered and scarred and very very imperfect but also very very alive, the soul of the baby and her body continued to grow and flourish, in defiance of the fate placed upon her.
A bit more detail added but basically the story I had come with as a child. Less positive than Christine’s, but also quite similar
Thanks for sharing <3 CKM (the author with an old school online pseudonym)
because when you ask certain questions both of your parents think that you are asking them to fix something you don’t think of as broken.
Wow.
Thank you <3 CKM (the author with an old school online pseudonym)
I’m sobbing now. This is beautiful and you are beautiful.
You are beautiful 🙂 <3 CKM (the author with an old school online pseudonym)
You (both the amazingly insightful seven-year-old version and the pensive, thoughtful current writer version) are wonderful. I can take comfort in the fact that the reason why I had to change into something ‘different’ was because my perfection was making other adults sad– it just took a little longer for God and the angels to decide what to take away from me.
Thank you.
Thank you for your kindness. <3 CKM (the author with an old school online pseudonym)
I feel like i should say something big here. Do something remarkable. this story rings with so much truth for me, it like your heard my heart. I often joke with my mother that I want to “complain to the manager” whilst pointing upwards to God. or “send me back to the shop, I want a new one” I see myself as something faulty, like a tv with bad wiring. If only I could find the right electriction, everything would be alright.
That this story resonated in such a deep way with you has me all full up with gratitude and humility. Thank you for reading. Stay strong. <3 CKM (the author with an old school online pseudonym)
Oh this is BEAUTIFUL.
Thank you! <3 CKM (the author with an old school online pseudonym)
I just learned last night that my friend’s 3-year-old is currently being tested for what may be juvenile rheumatoid arthritis. This piece is somehow both reassuring and heartbreaking (and beautiful) in light of that. I may send it to my friend, depending on what happens with the tests.
I hope all the tests go well! I was diagnosed with a very similar illness when I was 4, so if you think it would be helpful for your friends to talk to someone on the adult end of going through those test, reply here and I’ll send you my email address.
Beautiful gesture Dangerfield5. Now I’m all teary <3 <3 <3 (coloredlights, I’m here for your friend as well) <3 CKM (the author with an old school online pseudonym)
Send your friend and her child my love and empathy. They are lucky to have you. <3 CKM (the author with an old school online pseudonym)
I have two daughters with spina bifida. I keep a file of things I think they should read when they ask me questions I can’t answer, or when they are old enough, or just ‘cuz. This is going in that file. I’m working hard at not crying right now.
Sending your daughters my love and strength. That is a rough road, but never forget to encourage them to play, waste time, and goof off in whatever way suits them best. The hardest thing in my childhood was often feeling like being sick was my only occupation. That this story might be of some help is deeply humbling. <3 CKM (the author with an old school online pseudonym)
I gave up and am sitting here with tears running down my face. This is amazing and you are amazing and I will remember this story for a long time. I’m very glad you wrote it.
Thank you!!! <3 CKM (the author with an old school online pseudonym)
I wish I had someone to tell me this type of story when I was a little girl with NF. So beautiful.
Thank you! <3 CKM (the author with an old school online pseudonym)
This is so wonderful – beautiful and heartbreaking and funny and wonderful. I’m saving it to read again and again.
Thank you, thank you, thank you! <3 CKM (the author with an old school online pseudonym)
This is gorgeous, in every way.
Thank you! <3 CKM (the author with an old school online pseudonym)
Great post. This story is very wonderful , beautiful , heartbreaking and funny . I’m saving it to read again and again.Christine Kathleen McMahon, thanks for sharing this heartbreaking story with us.
Dear Christine. I enjoyed your story very much. I had heard of your journey when it started many years ago. My father developed R.A. as an adult and our family saw how devastating it can be. You have always been very strong, I am told, and I applaud your writing, your courage, your honesty, your strength, and especially your wanting to help others who face the uncertainty that you did. I was a healthy child growing up but as an adult I have faced many different challenges as life goes on and I will take your positivity with me. I think it might be the stubborn Irish in us that helps a bit as well. Continued strength and God’s love. Sincerely, Laureen McMahon Bodenbender
so this was gorgeous, and i want to thank you for writing such a piece. this gorgeous creation mythos brought tears to my early-morning eyes. when i was 10, i was diagnosed with the same thing, but my mom was a borderline hypochondriac and my dad had stopped being able to relate to me at the age of 9, so while they loved me and wanted to do the best, it was really hard to breathe through the constant weight of hospital, endless medication, therapy, my own 10 year old fear of my body, and my parents smothering. and my jra affected my entire organ system, so it was almost misdiagnosed as leukemia or lyme’s, which set my mother on overdrive and my dad to mourn a daughter he hadn’t lost yet. and i grew up in the church so my favorite person was one of my pastors, and this coupled with the sweetness of your piece just sort of hurts but in the good way.
so thank you for this. thank you so much.
I was born with severe scoliosis…the chronic pain and complications from surgery will affect me for the rest of my life. I also have arthritis, of the osteopathic kind, and sometimes all my joints feel like they are on fire. Thank you for writing this lovely, whimsical, beautiful piece, to remind me that the things which were taken from me are not more than the sum of who I am. The important things are left.
I was born with severe scoliosis…the chronic pain and complications from surgery will affect me for the rest of my life. I also have arthritis, of the osteopathic kind, and sometimes all my joints feel like they are on fire. Thank you for writing this lovely, whimsical, beautiful piece, to remind me that the things which were taken from me are not more than the sum of who I am. The important things are left.