The first time I ever heard of Carla was back when I had just started writing my blog in August 2008. My friend — and frequent commenter — Traci told me about this other recently diagnosed ALS patient who had this amazing blog that she thought I would enjoy and relate to. Well , Tra was correct on both accounts. Carla’s posts were often hilarious, usually quite thought-provoking, and always well written. Add to that the fact that she had the same crappy disease that I did I knew that I wanted to get in touch with her.
Because of my lurker tendencies I was a bit apprehensive to put a comment on her blog so I acquired her e-mail from a friend who had studied acting under Carla. I was very pleased to see that she had sent me a warm and engaging reply. In fact she had even read my blog. Her response prompted me to feel just a little less alone in this suddenly strange new world.
I kept up with her blog whenever a new post would appear but it wasn’t until I accepted an invitation to appear on KTVU’s Labor Day Telethon that I decided to contact Carla once again. I had read that she had recently taped a segment for the same program and I wanted to find out which questions the interviewer had asked her. Carla replied with a list of questions as well as with an offer to participate in an upcoming project that she was planning.
The two of us actually met chair to chair on Labor Day in KTVU’s green room prior to the broadcast. We talked like old friends about anything and everything. I got to meet her son Mac and she got to meet Emma as well as all of the members of my extended entourage.
I saw Carla a few months later in November when I went over to her home in Berkeley for a photo shoot. This woman — who was battling the same disease that I was fighting — had managed to plan and organize this monumental philanthropic endeavor: The Always Looking Sexy Calendar.
The scene at her house that day will never escape my mind. There was this undeniable buzz and energy surrounding all things Carla. She was in complete control of the proceedings yet the spirit of cooperation and corroboration was quite evident. The atmosphere and vibe felt incredibly supportive there that day and I could tell that it wasn’t a one day occurrence.
Carla and I were planning to make a Youtube video together showing us competing in a kind of ALS Olympic games such as eating and drinking and failing quite spectacularly and humorously. It would have been freaking funny. Sadly it was around that time that Carla started to not feel so well. Our plan to go viral unfortunately will never happen but trust me when I tell you had it happened it would have been cool and spectacular .
But then again so was Carla.
The Adventures of ALS Boy 
So sorry to hear about Carla. I’m glad you have some good memories of her.
Jason, I too followed her blog, after reading about her from your postings. She was an amazingly talented and graceful woman. I am in complete awe of the inner-strength from both of you.
I don’t know that words can take away your pain, but what I do know, is that you and Carla were both blessed beyond words to have shared a friendship.
xo
Nicole
ps….her son Maclen’s Eulogy honoring his mother puts anything I’ve EVER written to shame! 🙂
Simply Amazing!!
I can visualize that never-made video in my head and, damn, you two are hilarious!!
I’m happy I was able to help connect you with Carla, and even though I never actually had the privilege of meeting her personally, she was truly an incredible spirit, and I’ll never, ever forget her.
I followed her blog along with yours. I watched her last video and I can only imagine what you two would have come up with…but for all the suckiness, one can’t help but respect how she handled her life all the way to the end and I’m sorry that’s she’s no longer here.
I never met her, but I have a post-it stuck on my bulletin board at work that says ‘No pre-emptive worrying – Carla Zilbersmith 2010’ just to keep things in perspective when they start going crazy.