Damon McLeese – TRANSCRIPT
So my mom died last year. She was 90 years old; she had fallen and broken her hip.
By the time she finally passed, it was a relief to everyone. The doctors told us she had about a 50/50 chance of making it a year, and it turns out they were right. The last six months of her life were actually pretty brutal. She went from living in her apartment to the hospital to the rehab center to the nursing home, a place she had tried to avoid her entire life. And I went from being the son that was seldom seen to the primary caregiver, decision-maker, and power of attorney for someone I barely knew anymore.
You see, in addition to the broken hip, she also had Alzheimer’s. And like the nearly 6 million people in this country living with Alzheimer’s, she was slowly and methodically losing herself, her presence, and her mind. I believe at some base level, most people with Alzheimer’s understand what is happening to them and they are fighting it every step of the way. Their biggest fear is that they’re going to be forgotten, that they’re becoming a lesser version of themselves. When you become a caregiver for someone with Alzheimer’s, you get good at dealing with the immediate.
You’re always dealing with some sort of crisis. You’re trying to fix problems that cannot be fixed and solve things that cannot be solved. In effect, I felt like I was an extension of the medical team, just dealing with the patient, not with the person. The other thing about Alzheimer’s is you never know what you’re going to get from day to day. One day you could be having a perfectly lovely conversation about something that happened 20 years ago, and the next, the person may not remember you.
Very shortly before she died, I was called to the dreaded nursing home for whatever crisis was in store that day, and I stopped in to check on her. I said, “Mom, I can’t stay today.” I had a group of students doing a mural on the front of our building, and even though we had permission, graffiti is still very often viewed as an illegal activity, and sometimes the police show up. And she looked at me and she said, “I wish I could come with you. I’m so sick of doing coloring books, I could just spit.” And that really pissed me off.
You see, I realized she wasn’t talking about the cool coloring books that you can get at Barnes and Noble. Her only creative outlet was a children’s coloring book. We spend millions of dollars taking care of people in the last stages of their life, and the best we can do is children’s coloring books? I mean how many times as a child were you told to stay within the lines? I know I certainly was. But this really isn’t a story about me and my mom, nor is it even a story about Alzheimer’s.
It’s really a story about challenging assumptions. You see, I think every day about art, ability, and disability. My day job is to run a gallery for young people with disabilities to earn access to economic opportunities through their arts. Most of our students are locked out of economic opportunities, and we provide a place for them to come and create. Over the last 20 years, I’ve developed programs for people who are blind to take photographs, people who are deaf to dance, and people that don’t have arms to paint with their mouths.
Our programs have been recognized and replicated across the country and I’ve had the great honor of working with some of the most creative and talented artists in Colorado. In fact, the mural we were painting that day has become one of the most photographed murals in Denver. I realized I had never challenged my own assumptions. I had never thought about programming something for someone who may be cognitively challenged, people who may not be able to remember and build on what we did last week. So I realized the assumption that needed to be challenged was my own.
Maybe it wasn’t the coloring book, maybe it was the graffiti. You see I think with people with Alzheimer’s and people who do graffiti actually have an awful lot in common. They want to be remembered, they want to push back against what societies think they should do, and at the end, their biggest concern is leaving their mark on this big messy world. In fact, one of the first known taggers in New York City, Taki 183, his entire idea was to leave his mark in all five boroughs of New York City. Nearly 50 years later, Taki 183 is still remembered in New York City, and if you know where to look, you can still find his tag.
But the thing I love most about graffiti, it is constantly reinventing itself into new and vibrant art forms. So I asked myself, “What if we do graffiti with people with Alzheimer’s?” I wasn’t at all sure it was going to work, but I had to try. So I called my friend Courtney at the Assisted Living Center, and I said, “Courtney, how about if I come down and do graffiti with some of your clients?” And after the initial, expected, stunned silence on the end of the phone she reluctantly agreed. We had four brave artists that first day, and notice. I say “artist,” not patient, not client. You see, I believe we are all artists, and that our job is to leave our mark on this big messy world.
So after we got everyone comfortable with the spray can, made sure people pointed it away from themselves we got down to business. And our goal that day was to collaborate, to create, and to leave our mark. We have everyone start by developing a symbol, a tag, or a mark that they could recognize as theirs for that afternoon. Whether they could still remember to write their name or not didn’t matter. We just wanted something that for that brief afternoon, they recognized as theirs.
After we had been painting for a while, I noticed one of our artists, Freemond, had painted a caboose. And I walked over to him and I said, “Freemond, that is an awesome caboose.” And he looked at me with complete clarity and complete presence, and he said, “Yeah, I worked on the railroad for 40 years.” It was clear to me some of the people who worked with him on a daily basis didn’t know this about him. They fed him, they clothed him, they bathed him. But they didn’t know this about the person. I know Freemond left his mark on me that day. Since then, we’ve done this project several times. We’ve discovered some things along the way. First, we discovered this thing called water-based spray paint.
Yeah I’m a huge fan. But really more importantly, we’ve realized that by allowing people to focus on a new task rather than try and retrieve a forgotten skill, very often we’re able to open up some portal into the brain; we get a glimpse of the person that is still there. I recognize and freely admit, we do absolutely nothing to slow the progression of this awful disease. We’re not even making a dent.
But for a few brief hours, we’re able to create an environment where we can see some wonderful people. After our first session, we made it a point to always include caregivers in our projects. As I can attest, they need to take a break from the constant crisis-mode. They need to disconnect from the patient and reconnect with the person. We’ve met some really, really important people.
We’ve met doctors and lawyers, a fighter pilot, a master gardener, mothers, fathers, sisters, and brothers. At the end of the day, this very immediate and misunderstood art form has allowed us to creatively connect with people who are very often overlooked by society. I told you that they had a lot in common with graffiti artists. So I want to ask you today, what are you doing to leave your mark on this big messy world? Are you staying within the lines? I certainly hope not. Thank you.