Rob and I watched the movie Gleason last week. He was out of town when I attended the San Francisco screening, so this was his first time seeing it. Now that it’s on iTunes and Amazon, I highly recommend that everyone check it out if you haven’t seen it already.
Seeing the movie for the second time was eye-opening for me in new ways. The first time I watched it, I was very focused on the relationship between Steve Gleason and his wife Michel as they navigated ALS. It seemed like they came to the disease from such a place of strength and connection, yet it was and is an incredible challenge to maintain a relationship. Rob and I know all about that, and judging by the conversations I have with other ALS patients, we are not the only ones. So this time, I set the relationship stuff aside, and I just watched Steve.
I watched him as a strong professional football player, muscled and aggressive and fast. I watched him as a groom, and as a traveler. I watched as he fell while attempting to run across the rug of a church. Read More>
I’ve been trying to write a blog post for the past week, but all that comes out are the ramblings of a crazy person. It’s been so hard to collect my thoughts, and I’m not sure I’ve done it here successfully at all.
Case in point, I’d like to start with a completely random digression. I’ve known a few crazy people in my life. The woman in my college town who yelled at canned goods in a bus stop alcove. The guy in the same town who used to stand outside the bagel store in his Delta Gamma sweatshirt (according to him, he was a member of the sorority), hassling frat guys and flirting with girls. When I went in to grab a cup of coffee and a bagel, he would sit with me and talk about his upcoming wedding, which was probably imaginary. But it was a welcome break from studying. Everyone called him Scanner Dan, I guess because he used to count things. Dan was short, bearded and far older than the average person that I encountered on State Street. He would sit across from me at a round table, his grubby fingers and greasy hair setting him well apart from the rest of us. Still, he was a part of the college experience. The word at UW Madison was that there was a psychiatric hospital across the lake and that when people got out and went to halfway houses, some of them just started hanging out on campus. It makes sense, I suppose, and is probably something I could confirm with a quick Internet search. But there are crazy people everywhere. Anyway, I don’t think I’m one of them, I just think my latest unposted blog efforts have seemed a little… unhinged. Read More>
I am overflowing with words and nothing can keep up with me. Definitely not my own mouth, not my dictation device, not my energy level, that last whittled down by a late-night arrival into San Francisco after a trip to New Orleans that feels almost like it was a dream.
It’s May. It’s ALS awareness month. That’s worth discussing for an entire blog post. But not today. Rob just got home from work. He said there are two huge boxes outside, and then brought them in. Wedges for my bed, sent by Team Gleason when I was clearly envious of Steve’s. A kind gift on top of a weekend of kindness.
For anyone who’s not familiar with Team Gleason or Steve Gleason, the quick story is that Steve was a safety with the New Orleans Saints, and was diagnosed with ALS in 2011. Since that time, he and his organization have worked to make life easier for other people with ALS. Steve focuses on technology, and on being proactive in the face of the disease. Through the Adventures side of his team, people with ALS have been invited to experience the kinds of things they might have assumed were beyond them post-diagnosis.
That’s where we come in Read More>