This weekend, Scarlett and I went to the Hardly Strictly Bluegrass Festival for our 4th year. The show—a free concert in Golden Gate Park—has been a San Francisco fixture for 13 years, made possible by underwriting from a generous music lover named Warren Hellman, who passed away in 2011, but made sure the festival funding continued.
Like other things we’ve done on an annual basis, this one made me think about all that has changed in our lives. HSB was Scarlett’s first concert, when she was 6 months old. That year, 2010, the three of us walked a mile from our house into the park, and the first act we saw was Emmylou Harris. A free concert brings a very large crowd, and it becomes overwhelming, which is why Rob is sleeping in this photo. But Scarlett loved watching all of the people. Plus, back then, we were nimble. When it was time to leave, we simply ducked out. Walked home.
The next year, I was having trouble on my feet, but I wouldn’t miss the show. I drove us there on a Friday, parked as close as possible and pushed her in a stroller to the stage where M. Ward was performing. Afterwards, we met my brother-in-law, RC, who popped open a bottle of wine for the Chris Isaak session. Scarlett was in her running phase, and the two of us took turns racing through the crowd to retrieve her. When it was RC’s turn, I sat and thought about that Friends episode where Phoebe tells Chris Isaak his voice is a little girly.
The following year, I had been diagnosed with ALS. I was not prepared to take on Hardly Strictly. The problem back then was that I had the initial symptoms of a disability, but it wasn’t obvious. That means no special treatment; everything was hard. That summer Rob and I went to the Outside Lands Festival in August, also in Golden Gate Park, and also a multi-stage affair. I limped along on his arm, going to see acts like Beck, Of Monsters and Men, Jack White, Sigur Ros, Stevie Wonder. It was incredibly fun, but the days where I could bring my little girl to go see music, just the two of us, were clearly over.
Then, in 2013, when Hardly Strictly rolled around, I decided to just do it, any way I could. I was using a walker, and I had a handicap parking placard. I knew I commanded extra help, even sympathy. Though I hate the sympathy, I’m not an idiot, and I can use it when it works to my advantage. My dad, Rob, Scarlett and I set out for the show, parked in an area designated for accessibility, and waited for 45 minutes for a shuttle to drive us two blocks. How patient my family was! They could have walked straight into the show. When we eventually got in, we saw Bonnie Raitt cruise by us on a golf cart and take the stage.
This year, everything was different. The Friday of the festival, my sister picked me and Scarlett up and drove my van into the park. She bypassed the traffic leading in, and turned into a private parking area, because she and her husband were running one of the stages at the show. Their new company, Bandwagon, is a mobile stage: like a food truck, but for music. Just drive it anywhere, open the side, pop a band up there, and you have a show. (It might be a tiny bit more complicated than that.)
But the point is, I suddenly had fringe benefits on top of fringe benefits. We were golden. The van door opened, and I wheeled out. We cruised easily to the Bandwagon Stage, set in a sunny corner of the park, threw a blanket down and experienced the festival in a way that was wholly new to me. When Ryan Adams took his spot on the nearby Banjo Stage, we flashed some badges, and headed into a VIP area, where I kicked up my feet (and by this, I mean that I pressed some buttons and elevated my foot rest) and thought about how sometimes things just aren’t so bad. Sure I would rather have been dancing with my daughter than been the receptacle for all of the things she brought and didn’t feel like carrying. But I was at the show. Again. And it’s something I’m thankful for.
In conclusion, if you want to have awesome experiences, be ready to roll with whatever life throws your way. Also, have a brilliant family. It’s really that simple.
Back to All Posts
Love it! We traveled to Paris and Venice with my 83 year old mother who had early stage dementia. I’ve never had such luxury treatment! Golf carts in the airport, early boarding, private vehicle to drive us out onto the tarmac in Italy. Loads of handsome security people who fell under my mothers charms and offered her their arm like so many Prince Charmings. At one point we went to a private lounge and had a cup of tea so she wouldn’t have to wait with the riffraff at the gate. The whole trip was magical.
There are an awful lot of bad things about having ALS. Like you, I try to be thankful when something good comes along. Well done!
Sarah,
You continue to amaze me with each post I read. A remarkable example of what the best people in this world are made of…You make the choice to be grateful and enjoy the gifts you have been blessed with!