Jazz Fest, but not really

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>

Staying Home

Rob and Scarlett are going camping tomorrow with her kindergarten class. Although there are some moms going, it’s mainly a dads’ and daughters’ trip, so even if I didn’t have ALS, I wouldn’t be there. And that makes it easy for me to imagine what I would be doing this weekend if I wasn’t in this wheelchair.

A long run. A visit to my new niece. Maybe a drink with girlfriends. Sleeping in.

Certainly not having a caregiver arrive at noon on Saturday and stay until my family gets home on Sunday. To feed me, brush my teeth, put me in bed. I’m not trying to have a pity party, but I can’t help sitting here thinking this is too weird to be real. I used to have a life, and it didn’t revolve around needing constant care.

I’m glad they’re going camping, though. It will be fun for them to spend time together, away from the constraints of my reality. Nice for Rob to get to know other parents in an environment where he’s not worried about taking care of me. This is a theme that’s surfacing more and more often in my mind. I can’t escape from my disease, but that doesn’t mean my family shouldn’t be allowed to. Read More>