Day 309: Scenes From a Life

English: A simple wind chime
English: A simple wind chime (Photo credit: Wikipedia)

You are four years old when your grandmother gives you a name for this  thing that makes you different. Cerebral Palsy. As you get older you remember certain things from that day, the white coral wind chimes she brought back from the mission trip to the Philippines, the bookshelf sized carvings of the heads on Easter Island. These are the things you remember from that conversation, and as you get older you try to remember if you had any inkling that that phrase would have so much impact on your life. 25 years later you’re still not sure.

You are 21 exactly when you realize that your aunt and uncle have spent your entire life not knowing exactly why you’re in a wheelchair. You find this out because their daughters, the eldest who almost shares your birthday except that she is exactly one year younger than you today and her sisters have gone out with your sister and left you at the house, just like you knew they would. Your aunt and uncle didn’t see them leave and so when they realize they are gone they ask you why you didn’t go too, I mean, it’s just as much your birthday after all. You tell you tried and the girls didn’t listen They are mad, angrier then you’ve ever seen either of them and that is the best birthday present ever. The conversation that ensues reveals that somehow they missed the memo that your condition had a name. For 20 years the reason why you can’t walk, can’t dress yourself, have difficulty feeding yourself… Was a complete mystery to them, and they loved you anyway, without need of explanation or label. For your 21st birthday your aunt and uncle gave you the gift of true unconditional love.

You are  nine years old when you meet the boy  who will break your heart for the first time. The two of you  are as inseparable as it is possible to be when he is a year older than you and not in the same class. Which is actually quite a lot of the time since you both have physical and speech therapy during the school day. You overhear a fragment of conversation between your parents and his when they come to dinner and he stops eating to feed you the peas you have been chasing on your plate. Something about being glad the two of you are not high school age yet.

You are ten , two weeks shy of eleven when you move away. He cry every day for two weeks. Then once a month for the next six then at least twice a year for the next four years. When you’re 18 you find his name on one of those reconnect with your old classmate websites. You beg your mom to pay the subscription fee so you can message him . He remembers you, sort of. It isn’t until several weeks later reading his LiveJournal that you realize he is gay. There is still an indent in bathroom wall from where you punched it.

You are 16  when a boy who might be in love with you tells you you’re beautiful. You are 22 when a man who probably shouldn’t tells you the same thing. You believe the man but not the boy  who said it when you were 16. Why?

You are 27 when your best friend dies. You both knew it was coming . You said all the hard stuff. When you find out he’s dead you are still violently sick . You don’t sing at all for almost 3 years.

You are nine when you decide that you believe in capital punishment. A family friend has been murdered along with 15 other people by a fellow soldier who has a tendency to drink to the point of blackouts. When you find out the details from reading them in the paper you scream and cry until your throat is raw. You plot the murder of this man. Your mother take you serious enough that she insists you see the school guidance counselor, who doesn’t take you seriously at all. She calls your mom when you tell her that you consider your death acceptable collateral damage as long as you took the guy with you . Your mom tells her that this is the first and only time she’s been glad to disabled because he might actually do it. Later when she tells you that the counselor called you decide that it’s time to play along before the guidance counselor had you put in straitjacket.

You are 30 when you realize that love is a lot harder than it looks from the outside. Love is picking your battles and being willing to fight every single last one of theirs with them whether or not they ask you. Love is patient, but a patience that is at times not at all saint like. Patience can be a struggle but it is the willingness to undertake that struggle that is one of the hallmarks of love

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