COMMUNITY

There is so much in the news today that makes the head spin, the heart ache, and the stomach churn. The internet is alight with people (and bots) spewing hate, demonizing one another, and throwing personal insults. It is difficult to remember a time in my life that current events were as polarizing as they are right now.

The other day, a good friend of mine said: “I feel like it’s the beginning of COVID all over again. We are all sitting at home, listening and watching the news, while we wonder what will happen.”

Here is what I think will happen: we will remember that humans are all a community. We all live and we all die. The days seem long and the years seem short. When the doors of perception are cleansed, we can see the world as it is: infinite.

That, of course, is Aldous Huxley, not me, and is also where the 1960’s band The Doors got their name. Although Huxley sometimes wrote that the sky would fall if humans are not vigilant, I find the thread of community running through several of his works. Huxley is one example, but there are thousands.

Community. Your family is one, your neighborhood, your school, your church, your friends, your workplace, and every bond that you share, on purpose, or by chance, with every other human is a community.

You help to build them, nurture them, maintain them, and grow them. You aim to be received, accepted and respected by the communities that you belong to.

This was (and is) my approach to communities that I have led in my life. First in my teaching career, and now in working with children and adults that live with chronic illness. The threads become tapestries that hold strong bonds.

My classroom looked and felt like a clubhouse. Posters and album covers all over the walls, student art, quotes in frames, and, when I was allowed, a Beatles mural painted on one wall, and Jake and Elwood Blues painted on the door. Kids came in first thing in the morning, during study hall, at lunch and recess, and after school to hang out, practice their instruments, read, and/or socialize with friends. Band lunch was a big thing that helped the adolescent community bond and learn about life.

In college, I had a wonderful music teacher named Robert Perry. Dr. Perry taught high school music and band for 27 years, and had made the leap to instructing younglings like me make the jump from college classes to teaching in “real school.” He always told us that we should teach life through music. That quote stuck with me, and still does. As my dear friend Gerry likes to point out: Music is the vehicle…..

Dr. Perry and Gerry are spot on. Music is the vehicle that I use to teach about life, and build community. I can hold a whole room of kids (or adults) by sharing musical knowledge, but I also slip in points about kindness, caring, responsibility and giving more than you take.

When I retired from teaching in 2023, the end did not go as I wanted it to, but I already had my sights on another community that has always been in my heart: people that look like me…..the disabled.

As if directed by the universe (actually, I believe it was, but that’s another story), I became the advisor and director of a group of adults living with muscular dystrophy. When I stepped into this role, the community was already working toward advocacy and education. Building on the work done by my friend Annie Kennedy, who was the brainchild of this idea, I have helped this group grow from 12 members to 60 since 2020. I have helped them craft bylaws, elect group officers, plan and speak at disability conferences around the country and shining a light on the fact that we are the “experts” that live with this condition, and so our voice must be front and center.

We call ourselves The PAAC. This stands for PPMD (Parent Project Muscular Dystrophy) Adult Advisory Committee. We are PAAC-ers. We are PAAC-men (and we have a few Ms. PAACmen too). We go on PAAC ATTACK when we advocate for our rights, and we voice PAAC SMACK when we are playing fantasy sports. Our planning is, of course, the PAAC TRACK, and we give out our swag in a….you guessed it….PAAC SACK. We are a PAAC-AGE. (package!)

All joking aside, this community has taught me so much about life, that words do not describe the strength and bond that we all share when working together. I feel as though I am a talent agent for every one of these humans, and I try my best to exploit their strengths and connect and network with and for them, so that we may give more than we take. It’s PAAC LIFE. We are not much different than the music community that I was involved with as a teacher. I speak with many of these guys several times a week and we are developing more ways to be social, even though we are in different time zones. One dear friend, Gui, is in Brazil, and has started his own group like the PAAC in his country. When I hit the lottery, I am going to build an accessible community and call it PAAC LAND. We will all have our own PAAC SHACKS.

Recently I learned that no one else has a group quite like this in the rare disease space. The PAAC and I have been invited to create a presentation and a photo gallery for a friend who has space in Manhattan. Stay tuned as we create a PAAC MAP for other rare disease organizations to join in. It’s all about community. WE are all about community.

I promise you this: if you are lucky enough to live to be old and are surrounded by your loved ones (community) as you leave this life, no one in the room will give a shit if you were a democrat or a republican. You will likely be encircled by people that value you as a part of their community.

Stay safe, stay awesome, and stay tuned. An extra shout out to my friends Jay and Paul, as well as old students Rob and Mike for welcoming Vanessa and I into a local brew pub community. We have open seats…it’s on Candia Road in ManchVegas, N.H.