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How My Life Changed After Reconnecting With a Friend Living With ALS

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I have known Anthony since seventh grade, when we used to walk home from school together. Our hobbies included skateboarding, boxing with our neighbors, and running in underground tunnels, hoping bats would not hit us on the way through. Back then, we both managed to survive middle school with just a few scrapes on our knees and only a few broken bones from playing football with the local high school’s varsity quarterback. We listened to Taking Back Sunday, The Used, and anything and everything. Our curfew was when the street lights turned on, when all of our neighborhood friends would try to beg our parents for two or three more minutes together in the dark.

Throughout the years, we have got through our own individual ups and downs. His mother was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Anthony filled the role of caregiver for her as her condition worsened. ALS essentially means the neurons of those who are affected start dying, leaving their muscles, sensations and actions unconnected from responses in the brain. Although his mom has been living with this disease for almost 20 years, statistics show that 95 percent of people die within five years of their diagnosis. She is currently still living with this awful, progressive disease but has found her strength and voice by being a huge activist and role model for others living with ALS.

In the meanwhile, I had moved out of town after a life or death incident left me begging for my life. After losing my virginity at the young age of 12, I left town to heal and to deal with my PTSD, but I always wondered what happened to my neighbor friend, who seemed to have only few Facebook posts after his photography career took off, sending him around the world capturing special moments for others. I could see he was happy and moving on with his life. A little over five years ago, I remember seeing on social media that he was also diagnosed with ALS. I sent him a quick message and cried the whole afternoon. I can’t even remember if he responded — who could response to so many messages from friends and family devastated by this news? For a while, he assumed his photography career was over.

Earlier this year, after having my hours cut at work, I saw a post: “Looking for a part-time caregiver,” from Anthony’s Facebook page. Although I was aware he was diagnosed a few years ago, we hadn’t seen each other in person for over a decade. I reached out to him in hopes of catching up over lunch and seeing what this part-time job would look like. When I saw him for the first time again, I was put back. He was always handsome, but now he was much thinner, a bit frail, and had the same exact smile I remembered from all those years before.

He explained to me that the job he would need filled was because he could no longer use the muscles in his hands and arms, that his disease was unpredictable and that he was at a point in his life where he was willing to accept more help then he was currently getting. As he talked and as we both collected tears in the corner of our eyes, I remember looking down and seeing how absolutely detailed his new tattoos were on his arms. When I looked up, we made eye contact and he embarrassingly asked me if I could put some French fries in his mouth and get him a straw for his beer. “I drink beer with a straw too,” I said, trying to lighten the mood. It was true, though.

Its been about five months of us hanging out daily. He has shown me how he has programmed his foot-controller to add apps on his phone that are able to control the different settings on his camera. Not only has his career as a photographer continued, but he’s chosen his focus to be street photography. Ironically, I have worked with the homeless often. We collaborate every day on how to make the world a better place. Some days are harder than others. Within just a few months, we have attended the Palm Springs Film Festival, the Emmys, and gone on a few weekend adventures to capture the best shot – the “aww” moment, as Anthony likes to say.

He has taught me so much about photography and has also given me hope in building my own skills. I remember the first time he told me he was building his own wheelchair. I humbly said, “Look, I am probably not the best at this. I’m not good at building things.” He looked on at me smiling, “That’s OK, I can teach you.” Just because his hands and fingers have trouble grasping things now, his brain and mind are sharper than ever.

I remember telling Anthony about my best friend flying into town. “I want you to meet him. Let’s all go to Palm Springs for the weekend.” Anthony was a bit dismay, “Oh, that’s OK, Micaela. Thanks for thinking of me, but not this trip.” I could tell he felt like a burden, but never once did I think that was true about him.

If anything, he was the friend who would remind me to eat lunch or to enjoy being able to taste it. Besides, he has been losing his ability to swallow, so every single meal is valuable to both of us. Two days later, when driving back from Palm Springs, I couldn’t get it out of my head that we didn’t bring him. My best friend already knew. “We are stopping at Anthony’s house on the way to the airport. Tell him we are bringing tequila.” As I messaged Anthony, he immediately responded, “Sounds good, straight down the tube!” He was referring to drinking tequila straight down his feeding tube.

Sitting in his room with him and two of my other friends, all I could think about was how lucky I am to have a “boss” that is so centered in his life that he doesn’t let the progression of his disease overcome him. He is constantly changing and re-evaluating how to adjust. Isn’t that what we all have to do? That afternoon, I had to drag my two friends out of his room because the four of us were having so much fun hanging out that no one wanted to leave.

Anthony may have ALS, but ALS does not have him. He is a fighter and he is the same as any young adult. He is constantly encouraging me to go after my goals, and I am constantly pushing him towards his, even on days that we might need to rest a little more or he may need to use his breathing machine.

Even though he has a terminal illness, his goal isn’t just to stay alive, his goal is to thrive and prosper while doing so.

I plan on holding him to his words, like any good friend would do. Besides, I know he would do the same for me.

Originally published: September 5, 2019
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