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, with an unexpected email I received one day in March, asking if there was any chance we could pull ourselves together for a trip to New Orleans and Jazz Fest. Rob was just starting a new job, and this trip would take place on week two. Scarlett’s spring break had just ended, and we would have to take her out of school. As for me, I was free as a bird, but a little less confident about flying.

It took us three minutes to decide we were in. We didn’t want to miss this opportunity to meet Steve, to see amazing music, to explore a new city, to see if Scarlett liked beignets (spoiler alert: She did not. But she did enjoy licking the powdered sugar off and then having a meltdown 15 minutes later during Paul Simon’s set. Great fun for all.)

And I flew! In a plane, which hasn’t happened since last May. I thought it might never happen again. The flight was uneventful, which is really all you can hope for, although my butt was hurting a lot during the end, and I think Rob was starting to get annoyed with me for hissing at him about it. If you have padding on your butt, just enjoy it. Don’t try to get rid of it. For me, sitting down often feels like I’m balancing on two ice skate blades. I never did have a good butt.

In another exciting turn of events, my youngest brother found out we would be in New Orleans, and decided to drive down from Chicago with his girlfriend to hang out with us. Total bonus.

And suddenly there we were, at a hotel in The Big Easy on Friday morning. And several hours later, there we still were, in the hotel room. It was taking forever to get moving. If anyone was at fault, it was me, because I was having ALS related stomach issues upon which I will not elaborate, except to say that if you dehydrate yourself for hours on end so as not to use the airplane lavatory, you will pay the price for it later.

I sat and tried to drink a cup of tea, while Scarlett played on an iPad that she had decorated with Team Gleason stickers, and Rob caught up on some work. But I felt frustrated, like we were missing something by not being out in the world of New Orleans at every moment. Then I looked around the room at my family, and I realized that there will come a time, probably for everyone alive, when they would give anything to sit in a hotel room comfortably with the people they love, and just do nothing. So I decided to go with that. Even though we’re no longer quick to go anywhere, even though my body loves to come up with new ways to slow me down, there I was and it was all good.

This is an ALS mind game I play often. It’s pretty simple and it works like this: something awful, worse than ALS happened, and I traded it for this life. I chose ALS. So now there’s no complaining, because I got what I asked for, and I can handle it. It’s better than the alternative, even if I’m not sure what the alternative was, and even though I know that life is not actually a fairytale.

Except, maybe in some ways it is. On Saturday, we went to Steve’s home, which was full of friends and family. At one point I was laughing so hard, I had to ask them to stop being funny because I was starting to get dizzy. When the rain came, and Jazz Fest was canceled for the day, no one cared. We ordered pizza, and watched videos of Steve’s best friend Tony prank calling everyone they know. Scarlett was in heaven playing with four-year-old Rivers Gleason.

We were whisked away to another land, we laughed and ate and made new friends. We had an adventure.¬†And while we were there, amidst all the smiling faces, Scarlett walked up to me and said “This is the life.”





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13 thoughts on “Jazz Fest, but not really

  1. Alina

    If you get a chance, please write about traveling with your power chair. How did it go? I haven’t flown with mine yet, but hope to in June.

  2. Sarah Coglianese Post author

    Hi Alina, I have a travel chair that I take on planes. It’s 165 pounds and comes apart into three different pieces. I just roll up to the gate and then transfer to the aisle chair. I made sure my battery was new for this trip, because the travel chair battery doesn’t last as long as the one in the chair I use daily. The travel chair is a little more rickety, so getting around on the street can be tougher but certainly possible. And it doesn’t adjust as much as my normal chair, so it’s not as fun to sit in for long periods of time. But it’s easy to take cabs, because you can take the chair apart and put in the back of the car. Let me know if you have any other questions about it!

  3. Kathy R.

    What an amazing trip for all of you! So glad you had a great time. The Gleason Foundation is an awesome organization.

  4. Vanessa Morrison

    You look beautiful! I just saw “Gleason” at the Hotdocs Festival in Toronto on Sunday. It was an incredible film about an incredible man. You are so lucky to have met him (and he’s equally lucky to have met you). Awesomeness all around.

  5. Alina

    Thanks for answering! I’d love to try to travel with my Q6 Edge power chair, but am nervous that it would be ruined. Plus, I’d have to rent a van on the other end. I have a scooter called a TravelScoot that I use, but it’s getting more difficult. (I have MS, not ALS.) I follow “Every 90 Minutes” on fb and he had a good post about traveling with a power chair…. But I’m still nervous!

    Again, thanks for the answer and for your enjoyable blog!

  6. Jessica Flemming

    So so glad you got a getaway and what a great gift of Scarlett’s comment.

    I really love your “this is my choice” mind game.

    Thank you for teaching me something with every post.

  7. Janet Bijur

    Sarah! What a great trip! So thrilled for you all I can’t wait to hear more about it. I love the story about you all being in the hotel room doing nothing. Love you take notice of the most special moments! And I love the mind game that it could be worse. Everything is relative! I love your writing you always make me laugh and cry. xo Janet

  8. Nana

    What a wonderful post. So proud of you and Rob for expending the energy to have a blast. Keep it up. Give Scarlett a big hug and kiss for me. Love always, Nana

  9. Susan Connealy

    What a wonderful trip! And I love the pictures! You look so pretty. Question for you? Do you know where I could look at and possibly purchase the wedges for my bed?. I have been sleeping in a recliner for months and thinking about going back to my bed but definitely need some different wedges. Thanks!

  10. Carrie

    I am so happy that you and your family were able to experience this together! Steve Gleason is a great man and does so many great things for people with ALS. Stay strong and keep on writing! I love reading your posts. You are an inspiration. Peace and love to you and your family.

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