Two weeks ago was Halloween. I wasn't able to see Jase in his costume before he went trick or treating. Holidays are always so important to me. I relish the memories of time off, even Saturday mornings. I wake up thinking about watching early morning cartoons and eating cereal. These are special memories for me. This Halloween, if it was with Jase, I could imagine going from house to house with him, going trick or treating and opening his bag for some treats.
I did have really a great Halloween, spending it with people special to me.
It’s just that not being with my three year old son on these important days breaks me inside. I feel like I'm frozen in my own broken body. I think that the Halloween mask I wore seems fitting.
I enjoy my life. Adaptation has always been the key to my resilience. Keeping strong, keeping good people around me, love, community, work, play, deep thoughts, deep conversation, and humor. These are essential to my life and have always been.
That being sad, my son was my source of joy. He is no longer with me and I can only look inside. The past three years, since his birth, I've been on a traumatic roller coaster ride. I could have just stayed and played with him every moment, but the roller coaster had already started. Since his birth, I went from conference to film festival to disability activist rally, showing my film to help support disability rights. I really believe that I was given a gift to share with the world so that others could see on screen my life with MS. I no longer see myself as only a documentary filmmaker, but I am a performance artist of sorts. So I went.
It was all paid for by the festivals and as hard as the trips were, finding a care aid wherever I went, peeing my pants on long flights, being carried up stairs at inaccessible venues, but I felt like it had to be done. Even before this Halloween party, I got directly off of a plane from showing “When I Walk” at the UNAFF in Palo Alto. My Halloween mask represents how I feel a lot of the time. I feel broken, traumatized, my bottom is sore from excessive sitting and my body is pushed and pulled around by whoever is helping me move from place to place. It’s like I am a piece of carry on luggage.
When I Walk won numerous awards and finally a coveted Emmy after three years. My body hurts, but I have to hope that it’s making a difference to tell my story and of people like me. I get plenty of likes, comments and messages on Facebook, which I'm unable to read or respond to because of my condition. But I have my assistants read them to me. It gives me a glimmer of hope that I am still on the right path, though I will always question my actions and decisions. I’m going off on a tangent. I just wish I was sitting with Jase watching Saturday morning cartoons.
