“1, 2, 3 Strikes ALS Is Out” Chapter 84

“Hey Laura, we just got an invite to the Nats vs Mets game. Let’s go!” Easier said than done, but I sent a response back thanking Tara from the local ALS Org Chapter, and we put it on the calendar.

Since 2 June 2021, The ALS Association has celebrated Lou Gehrig Day by Major League Baseball (MLB) in ballparks across the country. This is a day to help spread awareness and raise funds for people living with ALS and their families. This year was the second time we were invited to the game.

Now that we had a date, we had to start the planning process. Getting a PALS ready for the day takes planning, and depending on the stage he/she is in, it could take many steps. So when the “Good Idea Fairy” whispers in my ear, I have to strategically figure how and when to ask. I have found asking while using the toilet or after a long day is not the best timing.😂🤣

So when I do ask, I have to take some things into consideration that are not on everyone’s checklist. When was the last time I pooped? I don’t want to be the old guy that 💩 his pants at the event and everyone talks about him later. “Clean up in isle poo.” How has my breathing been? Although this was a greater issue in the past, I have to be careful. How far away is the event? I feel comfortable within an hour and a half, but haven’t pushed past that. Lastly, I have to plan for my wheelchair and look at all of the possible routes. You would be surprised how a threshold or a small step is forgotten when asking the staff at a venue.

These are the questions I help with, but they're nothing compared to what my family needs to plan. Food, toiletries, medical supplies, medical equipment, extra batteries and power cables, time needed to get to the event etc, etc, etc. They have to pack up all the supplies and then carry three bags and drive me around. So going anywhere is a lot of work, and I really have the easy part.

Having said that, we decided to go to the game. As I've said before, proper planning is everything. The initial plan was to use the Tolt (I explained in chapter 83) to drive and communicate. I worked out a plan with my daughter to get me in and out of the van and to take over the wheelchair if I get stuck. Initially the plan worked out and when the sunshine interrupted the eye gaze, she took over. As I was driving at the ballpark, people started doing what people do: running in front of me without a care in the world, so my daughter took over again. First I want to apologize to anyone who I might have cut off in my past before ALS. Now I want to ask you to please give the right of way to anyone in a wheelchair if you so happen to find yourself in the same situation. Lastly, I am grateful my daughter took over because the Devil was in my ear screaming “You get 5 points for everyone you take out, 10 for Mets fans “ and in my head I was adding them up.👹

Once we got to our suite and settled in, the first pitch was thrown by my friend Brooke from her wheelchair and it was game on. It was great to watch the game go back and forth, even if the Mets won in the end. I am a Yankees fan myself. A foul ball landed in the seats near us and one of our CALS got it. It hit the wall above our heads - six inches lower and I wouldn’t be writing this. The team does a 50-50 raffle during each game and the proceeds for this game supported ALS. The Nats ballpark is excellent for wheelchair users, and they even allow the bags and supplies needed.

We met up with several friends - both PALS and CALS - and even made new ones. This was the best part of the whole evening. Unfortunately the Tolt speakers were not loud enough with the stadium noise and we didn’t bring the Tobii Dynovox, so no one could hear what I was saying. Because of this, people who engaged me sat patiently by my side and read off my screen. As the game went on and without planning, friends and family rotated around me all night and it was beautiful. My new friend Jon and I chatted about many topics. My good friends Omar and Nicole made sure I had anything I needed, which allowed my family to enjoy the game, too.

I had never been a big fan of mingling in the past, but on this occasion, I talked my eyes 👀 out. When the game was over and we said our goodbyes, my eyes were so tired I had to ask my daughter to drive the wheelchair again and it was great. The Devil was gone and I didn't care if someone walked in front of me or not.

I learned a few lessons that night. It’s not the people who walk on by that matter, it’s the ones who take time to say hello. I am better in social settings now than I was when I could stand up and speak. Lastly, I don’t get upset when something fails. Instead, I take time to learn and enjoy the failures as much as the successes.

Love and Blessings.

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