He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Thursday, May 3, 2012

Scene and Be Heard

Note: After reading this post, you will be completely sure that James' perseverative anticipatory anxiety is genetic.

I love The Colgate Scene. As soon as it arrives, I sit down and read it cover to cover. I read every article and story, always so impressed with what my university does and who is affiliated with it. I stare at the photos, soaking up the atmosphere and recognizing old friends. I squint a little to read the captions and say with a huff  "Really? This girl wasn't even born when I was there!" but I remember it all like it was yesterday, so am genuinely happy for her to be there today. I read all the class news, even those where I don't know anyone. When I read my own class news, I see my friends' faces still at 19 years old, and always cheer their achievements and try to envision more of what their lives are like today.

So when my friend, our class news editor who must have been deep into that bottle of wine that was her muse, made me sound much more interesting than I am in one of her updates, the editor of The Scene contacted me and asked me to tell our story as part of  "The Passion for the Climb". I was terrified.

This is how the series is described:
"Passion for the Climb" — it's what exemplifies the spirit of Colgate people. You share a thirst for a life of accomplishment and the will to do things right. In your academic, professional, community, and personal endeavors, you relish the effort, the process, the journey, and care deeply about how you lead your lives, as much as you care about reaching the top. As the Colgate song "In 1819" reminds us, our community pushes ever higher, "up the hill with profound determination."
Yeah, no pressure there.

It's so easy coming over here. I feel like I'm just writing an email of what I've been up to, and how James and Johnny are doing. I know you are here reading it because you know us. And autism. You know what a big deal a blown kiss is.

But to tell my story to everyone I went to college with? That was daunting. The schoolmates I read about in each issue of The Scene who went on to be teachers, CEOs, rocket scientists and published authors? Some classmates are helping to save the world. Literally.

Classmates who haven't seen me since back in the day when... well, actually some things are better left unsaid and I'm just glad Facebook didn't exist back then.

I wasn't sure I was ready to tell them our story, because I was afraid they wouldn't get why a simple drive through Boston is such a huge deal to me, and how these seemingly little things that I write about are as important to me as landing on the moon.

So I held my breath and told the editor what I was afraid of. But Rebecca didn't laugh at me or belittle our story. She told me it was important and she would help me tell it. She was insightful, encouraging and, most of all, patient. She had read my blog and knew James through the stories. She knew what I wanted to say and helped me figure out how to tell it. All in 800 words.

But even though the finished essay has my editor's blessing (it was so incredibly cool to get to work with an editor that I had to say that just once!), I've still been holding my breath all this time. I didn't want to tell anyone it was going to be printed, in case I led someone to the story and they didn't think it was worthy of being there. I would feel like I failed James if I wasn't telling his story in a way that everyone could actually see how incredible he is, and how unbelievably proud I am of him.

The Scene must have gone on line recently, because a few nights I got a message on Facebook from a friend I lost touch with after graduation. She said she searched me out after reading our story, because it meant a lot to her.

And as soon as I read her note, I let my breath out. She got it.

Then I realized that many of the schoolmates reading the essay are my friends, and they are going to get it, because they get me. And I was reassured that I'm not failing James, and I need to keep telling his story. If this is the only note I receive about the article, I'll feel like I did good.

And here it is. The Colgate Scene Spring 2012. Please go check it out -- Rebecca did a lot of work to make it print worthy and she deserves to have it read ;) Or, if you are like me, you can wait for the print edition to arrive in the mail so you can read it cover to cover.


Diane Foote said...

The print SCENE landed in our mailbox a few days ago, and I can't tell you how grateful I am to you for sharing your and James' story. When I read things like "I was afraid they wouldn't get why a simple drive through Boston is such a huge deal" I think of all the times I picked up our son Steven from his therapeutic preschool after I quit work, and he went bananas when I didn't drive home exactly the same route the nanny had. He doesn't have autism, but he does have SPD (one time he described it as "It's raining in my brain."). It really helps to know there are others out there, so thank you, and this family TOTALLY gets you!
--Diane Bailey Foote '89

krismac said...

Oh my gosh Diane, "Raining in my brain" seems like a perfect way to describe it. There must be SO much moise and constant attacks. I've also heard SPD kids say their brain won't ever shut down, and I imagine both of those descriptions apply to James. The SPD and anxiety pieces are SO much of what is debilitating for him. I'm so glad you saw the essay and that you reached out. I think most of the battle is feeling alone on that road. If we have eachother to talk to and lean on as resources than we will be in a better place. I'd love to keep in touch, my email is barefootkicks@yahoo.com and I'm on facebook as Kristin McCarthy Macchi (and have a FB page Running to be Still. Thanks again for reaching out, and hope to talk to you soon!