Friends you haven't met yet

Friends you haven't met yet. I guess that's all of you who read this.  Hello friends. 

About a year or so ago I agreed to participate in a study/research project. The grad student Chris Wienberg, is a computer scientist and for reasons I still do not completely understand, was interested in talking to people who blog frequently about their personal lives, which I certainly do. It has something to do with accuracy of mathematically based predictions based on the data scooped up in these blogs by who knows who or what. 

I think my participation, and I suspect others, is based on the fact that we don't know or care what data is scooped up. We are the fallible - and I hope undefinable - humans behind the numbers. I pity the fool who thinks they can target me with any products based on the stories I tell/told about Maggie. Of course it's more complex than advertising, but it's way beyond my pay grade. Chris and his team arrived with cameras and conducted an interview. It was pleasant, but after they left I don't think I heard another thing besides a thank you for participating. I didn't really expect to either.

Then yesterday I received an email advising that the film they made from these interviews is complete. It is entitled "Friends You Haven't Met Yet"  and it has been accepted to premiere at the Dances with Films Film festival at the Chinese 6 theaters in Hollywood on June 3 (my mother's birthday).  He sent me a link to the trailer which is at this website https://vimeo.com/86141216  but of course I had to download it. Hopefully you can watch it below. You can see me opening my front door and hear my voice. 

I have no idea what the movie will reveal. Perhaps we are crazy dinosaurs and the meteorite is heading our way.  I am going to go watch it on June 3. I figured I better get down there for my Hollywood premiere, which will coincide exactly with my Hollywood swansong. 

I'm gonna load up the truck and move to Beverly. Hills that is. Swimmin pools. Movie stars.

Taking Part

Maggie is fairly well known in the education and medical circles in San Francisco. I am not talking famous or anything, but her extensive disabilities and medical problems mean that we interact with many professionals in both worlds. Because we live right in the city close to the medical center and the universities, we are accessible to those professionals when we need them and occasionally when they need us. This week we were needed. And we take part whenever we can. It's important to pay back the people and systems who have helped us.

On Monday, I participated in a study through UCSF regarding the impact on families caring for disabled teenagers and plans for the future. This was part 3 of this study. It was interesting and thought provoking. Looking ahead is something I do very rarely and with great trepidation. I did realize, however, that my outlook has changed since Part 1 of the study eight months ago. Maggie’s health is far more stable now than it was then. My thoughts about the future are not as grim as they used to be. That is a good thing.

Tuesday I took part in the Family Advisory Council meeting at UCSF. We meet regularly, every month or two. They want family input on various issues, for the past year, it has been input the design of the new children’s hospital. We actually had impact on several things, and that felt good.

Wednesday we had a speech student from San Francisco State University. He had to interview a family dealing with AAC. (AAC is Assistive and Augmentative Communication – that is what Maggie’s communication device is, but there are many many different things that fit into this category.) Unlike the UCSF study, this focus was now, the present, not the future. He asked good questions that were difficult to answer. For example, does Maggie ever communicate her frustration at not being able to do what other kids do? The answer is easy, no. She does not communicate it, and in all honesty, I do not believe she feels frustration.

But now it’s in my head.

Those of you who know Maggie know that she is a very happy kid. I may be delusional, but she is happy with her life, at least when she is at home and not in the hospital. Remember, this is the only life she has known. I think she views her situation differently than we do. We are projecting our own fears and desires onto her but she does not share those. In fact, I from her viewpoint that is not a wheelchair, but a throne and she is the queen. We are but the subjects here to do her bidding.

But now I have to wonder.

Damn college kid, making me think.