This video is from last Saturday's kick-off event for this year's Autism Speaks walk. Our walk chair had asked if I would share my story of why I walk, and I agreed. In part because I'm terrible at saying no to things, and in part because I think it's important, from an advocacy standpoint, that everyone in the autism community shares their story. Because it's a spectrum disorder, personal experiences vary widely, yet there are common things that link us all, and you never really know what someone needs to hear - either to inspire empathy and compassion and interest outside of the community or to give a verbal, I-see-you kind of hug to someone within. Playing a supporting role to someone with autism can feel quite isolating at times. My younger brother and I recently had a conversation about how we kind of wish there were Al-Anon type meetings for family members of people with autism. It's a hard relationship to try to explain to people who haven't been there - and let's be honest, it doesn't exactly make for excellent party talk.
When we were younger, Feff's school and residential facility hosted sibling workshops at the annual Family Day. I went to my first one when I was around 7-years-old. I was the youngest in the room (other than my sister) by 25+ years. The workshop leader asked all of us to share some of the challenges we experience with our autistic siblings on a day to day basis, assuring us that everything we said would remain completely confidential. My hand shot up (brown-noser, what?) and I said, "Sometimes I want to ask my mom for help, but I don't because I know she's busy with Jeff." I thought this was a fairly innocuous statement. The WL thought it was an adorably succinct revelation and relayed it as such to my mom. (Confidential my Aunt Fanny.) My mom thought it was a heart-wrenching reflection of her inability to give each of us everything she had at every second of every day, and immediately started crying. (Which, by the way, she tried so goddamn hard to do. [The giving us everything part, not the crying.] Hi, Super Mom.)
I decided to stop sharing after that. Okay, it wasn't quite that dramatic of a switch, but I did realize that my story is inextricably linked to my mom's story - and my sister's, dad's, brothers', yadda yadda - and that whenever I share my experiences, I need to be cognizant of their perspective and how they might be affected. And not even just my family - the entire autism community. (So it's usually easier just to, erm...not...share.)
Then this walk came into my life. Not only did it give me a platform from which to speak, that platform seemed to come with an imperative. I felt that if I were going to ask people to hand over their hard/moderately difficult-ly-earned dollars, I needed to let them know why this cause was/is so important to me. SO bit by bit, I have begun to open up about my family's journey with autism, but it's still very new to me. With each conversation or social media post, I feel like I'm walking a tightrope, emotionally speaking. A tornado of feels swirls up inside of me, threatening to ruin us all. (Er maybe just me/my carefully crafted composure.)
My reason for stating all of this is that, before speaking at the kick-off event, I didn't really realize that I've been unconsciously using this walk as therapy - so apologies to Feffs and everyone in the room for that. I'm still (clearly) a bit of an emotional wreck where Feffs is concerned, but honestly, I probably will be until we find a cure and he finally gets to talk. And THAT'S why I walk. I want to know what he thinks every day. I want to know what his experience has been like - because, my God, I can just not even imagine. I want to hear all those sarcastic zingers he's been harboring fly across the room. (Though I may not feel the same if/when I find myself the intended target.) I want him to be able to live on his own. I want him to travel. And forge relationships with strangers. And to experience all the many crazy, stupid, lovely things this world has to offer. I walk because I refuse to believe this future is impossible for him, and I want to do whatever I can possibly do to help make it a reality.
If you would like to help me help Autism Speaks help Feffs and other amazing people like him, click here to donate - or to sign up to walk with us on April 29th!! You'll get to meet the amazing Feffs himself - and the rest of the big-hearted Feff Fan Clubbers I'm eternally grateful to have in my life.