“All My Friends Are Dying “ Chapter 87

As we age, it’s inevitable that the friends we have will pass on. Our network grows smaller as we get older. Before my mom died at the age of 92 this past January, she told me something I won’t forget: “All of my friends have died and I have no one left here. I am ready to go see them again.”

Looking back to 2021 when I was 54 years old, I certainly wasn't thinking of dying anytime soon and my friends were still alive. It was not until I was diagnosed with ALS that I started thinking about dying and had to look at death differently. It was not something far away anymore, but only 2- 5 years away. Of course, that’s the average lifespan for a Patient with ALS (PALS), but it’s not my plan.  So, why should I bother to take the time to make new friends?

As you may already know, I started this blog to document my ALS journey for my family and hopefully help others along the way. What I didn’t expect was all the incredible people I would meet along the way who were also dying. It wasn’t until I decided to LIVE with ALS that I started meeting some of the most amazing people who have become my friends.

The best way to describe it is like being on a sports team. One of my favorite movies is “Remember the Titans.” The team was being integrated for the first time and going away to a football camp. The individual players didn’t like each other because of their race. At the beginning of the camp they fought each other and were mad at the situation they were in. Over the course of the camp they started to get along and became friends. When they arrived home on the bus sitting together and enjoying each other’s company, they arrived to their families screaming and pissed off. It was maddening and all the players separated going home for the weekend. Over the course of the season, the families and friends saw the team not only fully integrated, but also getting along and winning. They didn’t let their differences interfere with building new relationships. Their example tuned the crowds from anger at the situation to cheering them on as a team. Does this sound familiar? No? Let me explain.

When a person is told they have ALS, that individual and their family are pissed off that they’re forced to integrate ALS into their lives. The PALS then goes off researching and learning about ALS, joining groups online or in person, and seeking out other PALS. Slowly they see others LIVING with ALS and becoming friends with them knowing ALS is still not yet an accepted reality for the people who love them. When they “get off the bus,” their families and friends are still pissed off because they are still forced to integrate ALS into their own lives. Over time as everyone accepts this is as their new reality and start to cheer on their PALS rallying behind them at ALS events. Thinking this way makes me want to meet new friends.

Over the past two years, I have met many PALS and Caregivers of a patient with ALS (CALS) virtually and in person who I now consider my teammates. One of those people is David B., who happened to be the father of my daughter’s boss. We spent time texting and getting to know each other. He was a Vikings fan (which I grew to accept), played the drums, and taught Karate, but mostly he was a husband, father, and grandfather. He unfortunately passed away a few months ago, but was a good friend.

I also met several friends through my blog. A single mother of three beautiful children who recently reached out to me for advice on feeding tubes. A gentleman who lives on his own with slower progressing ALS who just wanted to chat. He and I check in on each other quite often. I have also met several friends through online classes, and we also check in on each other. When you have teammates to talk to with ALS it’s different than talking to someone without ALS. It’s like we say in the military, “you were in the shit together” and have a special bond.

There’s one thing I learned about PALS - we don’t just lay down and die. The founders of “I am ALS," “Team Gleason," and other programs started after they were diagnosed. I know three PALS who wrote books using eye gaze and a young lady using social media platforms to raise money and awareness about ALS. That’s what we do... we get fired up to help others and LIVE.

Yes, all my friends are dying and some will die sooner than others, but my life is enriched because of them. I don’t want to live in a box and die alone. I want to LIVE outside of the box and celebrate every teammate I have.

I pray you are LIVING well my friends.

Love and Blessings

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