I had a really nice trip. I'm so lucky to report that I have friends at work. Not only are they friends, they are also people I learn from, respect, and admire. My boss and other colleagues worked it out so that I didn't have to work the booth. This was a relieft on two fronts. First, it is strangely tiring. Second, I was able to attend sessions. The sessions were great since I feel I have a lot to learn about the communication aspects of my work and It also renewed in me a sense that I am on a learning curve with this position and this company. This makes me feel hopeful and curious about my work and about our educational mission. It's nice (and perhaps rare?) to step out of your routine and find good news waiting for you.
My sister surprised me in my driveway three minutes before I was scheduled to leave and offered to drive me to Logan and then my other sister and niecearranged to picked me up on my return.. How awesome was that? We had a chance to chat and I was able to organize my approach to this trip. I decided that if I was going to go and present if I could follow these two tennants: 1. I would not get nervous about presenting since I actually knowledgeable enough to talk about the topic and 2. I was going to own my disease and it's result on my appearance. It's simple but it worked. The presentation went well and for the most part, I did own my appearance. I wasn't comfortable but I wasn't freakishly uncomfortable either. People in the airport and in the conference center did look twice at me. And often enough, they made encouraging eye contact and smiled and gave me free coffee. It's not the equation I'm most comfortable with nor is it one I hoped for. But it's what I've got right now.
My sister told me that she thought me brave to go. I was considering this and trying to figure out how to accept the compliment and then I showed up in the conference center and looked around. This conference is an international gathering of parents, kids, teachers and clincians who use or are interested in how to implement assistive technology to improve the lives of people with disabilities. I'm always awestruck by the creativity and commitment of the people in this field. The families leave me awestruck-- what they face and how they adapt and strategize to make the lives of loved ones easier and more functional. For me, going to a conference bald is brave. But the kind of bravery you see around every corner at ISAAC is in a whole other echelon.
I got lost twice walking the four blocks between the conference center and the hotel and found myself twice walking by an old church that had posted this aphorism: YOU ONLY LOSE WHAT YOU CLING TO. I couldn't help, in that most egocentric way, to think that this was talking to me directly. I've been conducting a crazy vigil about my hair. I'm checking it all the time and convincing myself that it is growing back only to reverse my thinking in the next hour. I cling to vanity and it's debilitating and ugly, however, the inevitable is happening. I'm putting less energy around the baldness. Sometimes I'm too lazy for a scarf and a hat and just wear a hat. It's scary but it seems like some version of letting go. I realize how powerful the result of letting go can be. But the process has a kind of slow motion freefall to it. I guess all one can do is keep on keeping on.
Did I say this already? I'm on track vis a vis treatment. So far I haven't missed a treatment or a shot (which can happen if your blood work is off or you get sick, etc.). If all goes well, I'll have the last infusion on 9/13 with a smaller, day surgery following and then six weeks of radiation. This should all be behind me by Thanksgiving. That's the hope. I'm saying this so if you think about it, you can hope with me. I can't wait. It's August. I am moving along but I can't, can't wait.
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