Brian Jeansonne - Finding Beauty and Love in the Chaos

 

 

Good evening, good people. My name is Brian. I happen to have ALS known as Lou Gehrig's disease, a very rare neurodegenerative disease, that affects less than 1 out of every 11000 people in the US. No need to fear. You are all safe. [audience laughter] I am the one in the room. You're welcome. [audience laughter]

 

Now, I am not much of a public speaker, and I am nervous AF. I literally feel like I can't move. [audience laughter] I'd like you to imagine a world with me before COVID. The year is 2019. It is a beautiful morning in September. I awake early and head to the gym. Following my workout, I lace up my running shoes and begin my morning run. On this day, it's just a short three miler. My pace is brisk as I run along Bayou St. John in the heart of New Orleans, the morning breeze cooling the beads of sweat rolling across my freshly shaven head. 

 

At the one-mile mark, I notice something wrong with my gait. My left foot is not making its full stride, but instead is hitting the earth beneath me as it tries to make its way through. Eight months later, after more than a dozen doctors’ appointments and multiple MRIs in April 2020, exactly one month after COVID broke the world, we finally got an appointment with Dr. Edwards, a neuromuscular specialist. We arrived at his office. 

 

There were no administrative staff, no nurses, no other patients. Dr. Edwards literally turned the lights on for us. After examining my body for about four minutes. He put his instruments down, placed his hand on my knee, looked me in the eyes and said, “Mr. Jeansonne, I am sorry, but this is ALS.” And then, told me I had two to five years to live. I was 43 years old. 

 

As we left his office, I fell to the floor, feeling like a piling in the shaft of a pile driver. I had been smashed to dust. My wife, Christy, fell with me, held me and we wept in that corridor for what seemed like hours. Once we were able to get our legs back under us, we made the five-mile trek from the doctor's office to our home to see our kids, who at the time were ages 15, 14, 13, 11 and 8. I had just been handed a death sentence, and I felt as though my life was over. 

 

It didn't take long for ALS to destroy my body.In just two years, I had lost the ability to walk, to talk, to eat, to move, to bathe myself. Actually, the bathing part excited me, because I knew that meant more showers with my wife. [audience laughter] However, when I realized, she was going to keep her clothes on, [audience laughter] it suddenly became less thrilling. [audience laughter] 

 

I had lost all autonomy. Every morning, someone would give me an enema and return a few minutes later to wipe my butt. I could no longer hug my kids or squeeze my teenagers tightly when they would stand in front of me crying, because their life is difficult and I can't do anything. And a dad should be able to hug his own kids. I could not use my voice to tell them that I love them. 

 

Before I lost my voice, I wore those three little words out on them, even making sure the last words I ever spoke were I love you to each kid and Christy. I could no longer enjoy my favorite foods, fried shrimp, po'boys or my mom's chicken and [unintelligible [00:37:36] gumbo. I couldn't smell or taste that delicious black coffee from my neighborhood coffee shop. I could no longer savor cigars or sip on a wonderful bourbon like Hancock reserve with my buddies. I could no longer smell the love of my life, or taste her kiss or make love to her the way she enjoys. I could hear my daughter in the backyard playing basketball, bounce, bounce, bounce. But I couldn't go out and play with her, like I could with her four older brothers before I got this awful disease. 

 

So, as I was working through the grief of so much loss, I was still breathing really strong. And then, in October of 2022, I got the flu. We were out of town visiting a friend where I stayed in bed all weekend and high as a kite to keep me relaxed as I gasped for air. Upon our return home, on October 10th, 2022, I journaled “I am in a really dark place. I'm legitimately scared for the first time. I am fearful. Episodes like Thursday night and last night and this morning, I literally feel like this could be it, because I can't breathe. And then, I start sweating and then I am having a panic attack. And it's dark. This morning, I felt like tapping out, and that scares me.” 

 

The next morning, I found myself in the back of an ambulance being rushed to the hospital, having no idea if I would ever return home, seriously wondering if I had just seen my kids for the last time. After being stabilized in the ER, I was transferred to the ICU. The next day, my favorite doctor and one of the most beautiful humans I have ever met, Dr. Kandro sat next to my bed and said, “Brian, we are at decision making time. We can either make you comfortable as you transition from this life to whatever is next, or we can do a tracheotomy in which you will live the rest of your life-on-life support. It will be incredibly difficult and very expensive, but you will still be here with us.” 

 

I figure most people would say that is a no-brainer, but the truth is, 90% of ALS patients decide not to get trached. The reason being, this is a challenging way to live. You are basically a fully cognizant human being who is incapable of doing anything except thinking. So, when my doctor asked me the literal life or death decision-- I was hopped up on all kinds of drugs. I was ready to die. But in the midst of the pain and fear and chaos, I had a brief moment of clarity where I was fully in tune with my wife, my own soul and the oneness. 

 

I whispered to myself, “Micah, Jonah, Nate, Lucas, Zoe Moon.” I looked at my amazing doctor and I said, “I have five kids at home who are waiting for me and I'm not done imparting myself to them. So, do whatever you have to do to keep me here.” That is the last thing I remember. I woke up 14 days later and asked Christy, “When is surgery?” And she replied, “Baby, it's done.” You are trached and you are back.” 

 

Six months later, I am hanging out with my four teenage boys, a meeting we have together every Sunday night. We call ourselves, the diamond dogs. I am in my bed. The boys are situated around my room. One is in bed with me, two are on the sofa to my right and one is sitting in a chair at the foot of my bed. The room is dimly lit by a lamp with an Edison bulb in the corner. 

 

Somehow, on this particular night, unprompted by me, the boys stumble into uncharted territory and start talking about how my disease is forming them in positive ways. This is one of those moments when you don’t know what is happening, but you do know that whatever it is, it sacred. Micah, 18, said, “I think ALS has made me more understanding towards what others are going through and it has brought me and you closer together.” Jonah 17, “ALS has taught us to cherish all the moments we spend together.” Nate 16, “ALS taught me how to deal with unrequited questions and how to embrace what may not be there tomorrow. It is also teaching me how to love what seems unlovable.” And Lucas 14, “ALS is helping me learn to be patient, and it's taught me maturity in a form that is important at my age. 

 

They are teenagers. They know ALS means our time together will be shortened. And to hear them speak of their own formation in positive ways left me speechless. It was the most validating moment of my life that the way Christy and I chose to parent might actually work. I mean, who are these humans and how did I get to be the lucky guy that gets to spend part of my life with them? This was one singular point on the timeline of my life, when beauty showed her face in the midst of the chaos in the middle of the clusterfuck in the black burnt ashes. I am, however, a man who also values authenticity and balance. 

 

So, a few weeks ago I chose to face one of my fears and ask my daughter the question. Remember, she was eight when I was diagnosed. She is 12 now. I was sitting in my chair as she stood in front of me. And with my computerized voice, I asked “Zoe Moon, can you think of any good things that have come into your life because of my ALS?” She thought for about 30 seconds. “Dad, I don't really remember life before ALS.” 

 

As I began to weep, I was heartbroken to hear her say what I already suspected to be true, that my daughter would never remember a time when I didn't have ALS. She would not remember my hugs or our tickle fights. She would not remember all of the times we walked home from school together hand in hand. On the ever-growing list of things that life is teaching me is that even in this, I trust that something good will spring forth, because in the chaos, there is always something beautiful to be experienced. 

 

Sometimes though, you might just have to hold on for dear life before you experience the beautiful. So, I hold on. I have now been living with this 20-pound black box on the back of my chair for almost two years. It is an incredibly difficult way to experience life. But I am here with my wife, my kids, my neighbors, my friends. In the life that ALS was determined to burn to the ground, there is beauty in love rising from the ashes all around. No matter where your life takes you, always remember, life is a beautiful clusterfuck and love is here. Thank you. Love. 

 

[cheers and applause]