I am posting this a few hours early as I have a big ask at the end, and I would like it out before tomorrow.
April 14, 2020. Three years. That is how long it has been since my diagnosis. It’s hard to believe. In just three years, my muscles have revolted against my brain and have decided to no longer listen or obey. A lot like a rebellious teenager. Ironically, my brain is the only part of my person that still works, so really the joke's on my body.
I have now been married for 20 years. I vaguely remember my life before Kristy; in many ways, it is like peering through a window and just catching glimpses. The truth is, it’s hard to remember my life before her. In a strange way, that is how life before ALS is becoming. It is getting harder and harder to remember life before. I understand that this is my forever reality. And in many ways, I am okay with it; I am content. I don’t find myself wishing I could walk or drive or even eat. Now, there are times of course, when I am still overwhelmed with sorrow when I wish I could throw the softball with Zoe Moon or hug my kids and Kris or ride my bike to the grocery store. But for the most part, this is me and I get it.
In three years with ALS, I have learned quite a lot, as well as losing a lot, and at the same time gaining even more.
What I have learned:
Curiosity: I have learned to be curious; not judgmental. I learned this lesson from Walt Whitman via Ted Lasso. The thing is, I spent most of my life certain about things and judged anyone else who didn’t believe like me as wrong. I have learned that there is nothing scarier than a person who is certain of their beliefs, whether it be religious or political. Certainty is the killer of curiosity and absolutely the killer of love.
Conversation: I have learned that arguing is futile; however, civilized conversation over disagreements is an opportunity for restoring relationships or ending them if needed, but in a respectful way.
People: I have learned that people are amazing, and some are asshats but mostly people are beautiful and incredible. I have also learned that life is too short to spend it with the asshats.
Life: I have learned that there is no escaping life. Life is coming for us all. Since my diagnosis 3 years ago, I know of six families who have lost children, ages, 2 newborns, 9, 16, 17, and 31. Three in senseless car accidents. What is this world we live in? There is no rhyme or reason. It is just life, and there is no escaping it. I think we would all do better to cut each other some slack because, in some way, we are all going through something. Some of us, like myself, wear it on the outside, however many more are wearing it on the inside where it can’t be seen.
Magic: And yet, amidst the funk and chaos, I have learned that the world is full of magic and wonder and awe. Because I have also seen newborns who should die make miraculous recoveries. I have witnessed the unimaginable generosity of people. I have witnessed love from places where I thought love was dead. The world is a glorious place filled with love and joy and goodness.
Love: I have learned that love is the greatest force in this world. There is nothing that love cannot handle. There is no problem that love can’t fix. There is no bond stronger than love. We live in a world where hate and violence seem to be the preferred method of settling the score. I can think of no greater lesson in missing the point.
Things I have lost:
Function: Physically, everything. I can no longer walk or talk or eat or breathe. I cannot scratch an itch or kiss my wife or hug my kids or my friends. I can’t open my mouth or swallow saliva. I can’t move anything, and I can feel everything. I now pee through a tube that is inserted into my bladder. (Which honestly is quite convenient at JazzFest, the movies, on road trips and much more. I might have done this pre-ALS had I known how convenient it was). I eat through a tube inserted into my stomach. I breathe through a tube inserted into my throat. I’m pretty much bionic. I have lost everything physically except for my eyes. And it’s fucking weird.
Dignity: I made Kris promise me when I got ALS that when it was time for caregivers, we would only hire very ugly, caregivers. Instead, she found the cutest 20 something year olds and my friend Andy. So, now I have acquired three new daughters. But no matter what my caregivers look like, there is nothing easy about being a 46-year-old who has to have his butt wiped for him or his spit constantly suctioned out of his mouth or being showered by others or having to ask if someone could pick your nose for you or adjust your balls. It all sucks.
Touch: I think this is the greatest loss of all, the ability to hug or extend my hand to hold another’s. Just in the last month, I desperately wanted to hug one son who is going through a difficult time. I also have a dear friend who is going through a very difficult time and all I want to do is hug her and hold her hand. Nor can I shake the hand of a friend or a stranger. This crushes my heart. Not to mention how much I miss hugging Kristy and holding her and making love to her. This is hands down the cruelest part of this disease and the loss that I mourn more than any other. This is the part of the disease that is the greatest motherfucker to me. It has robbed me of my ability to express myself physically to others.
Things I have gained:
Weight: I have gained a considerate amount of weight since I take in 2500 calories a day. That and my exercise regimen has been off. I enjoy sleep so every morning my alarm goes off for my morning run, I snooze it away.
Relationships: I have rekindled many relationships of old. I have reconnected with many old friends. So much so that my high school girlfriend had a small hand in helping me plan my 20-year anniversary with Kristy. See, crazy stuff. Relationships I wrecked in the past have been completely restored. Not to mention the people I have met, only because of ALS. Alanis being one. She and I keep in touch, and I have not experienced that type of soul connection with a stranger, maybe ever. And then there are my caregivers. Andy, my neighbor and my friend. I knew Andy before ALS as we were porch drinking buddies, but now we are friends. And then there are Mary Kate, Britley, and new to the team, Gentry. Very much like daughters to me and incredible friends who love me and our family. It’s hard to imagine my life without knowing these girls. My life is richer, and my family is more whole with them in
our lives.
Life: The truth is, when I walked out of my doctor’s office three years ago today, I fell to the ground in the corridor. Kristy fell with me, and we hugged and cried for 30 minutes together. No words. Just tears and embrace. I thought my life was over. Little did I realize that my life had just begun. The last three years have in many ways been the hardest and yet best 3 years of my life. I have grown more as a person over these last 3 years, and I have honed in with laser focus on who I am and what I’m for. I had glimpses of this before, but now I know, and I live into that reality every day.
Love: My heart is full. Of course, I am no saint and there are people that I still don’t like or have respect for, however, there is no animosity or hard feelings. I have adopted a lifestyle of love and I am more convinced than ever that regardless of one’s religious beliefs, it is all garbage without love. It literally means nothing without love and acceptance and inclusiveness. Otherwise, it is just a big pile of stinky shit. When it’s all said and done, love wins.
Clarity: I know who I am and what I’m for. I am a part of the Oneness of love and beauty. I am a pastor but not in the religious sense. My life is for others. I care immensely for the holistic well-being of others. Starting with my Kris and my children and extending to all of those in my life. I spent my life as a pastor in the religious sense, but the problem was that I always had an agenda for people’s lives and honestly, it held me back from being the kind of pastor I wanted to be. Now, I get it. I have no agenda other than to give myself to others and walk beside them as they find and begin to live from their soul. I am working on a book, and I have some other things I would like to accomplish; however, these things are not what I’m for. I am here for others, and I choose to spend time with others before anything else. So, if the projects don’t get done but people are loved then I will die feeling I accomplished my life purpose.
Wisdom: By wisdom, I mean for the first time in my life, I know that I don’t know anything or as Ruth from Ozark would say, “I don’t know shit about fuck.” I have life experience and that is all I have to give, and I finally have the wisdom to know what works for me doesn’t mean it will work for you. You have to find your own path.
Quality: One of the absolute greatest things to come out of ALS is the quality of my relationships, particularly with my kids. I always wondered how we were going to navigate having a senior, junior, sophomore, and 8th-grade boy at the same time. I wasn’t as worried about Zoe Moon being in 5th, (although, I should have had this on my radar, as little girls are a complete mystery to me). But the bond between me and my boys is stronger than anything I could have ever imagined. Somehow ALS allowed us the opportunity to bypass the rebellious phase, and instead enter into a sacred relationship of mutual respect and love during their teenage years. We don’t deal with the typical teenage boy fighting against everything we say. It’s nuts and it is beautiful. Now, Zoe Moon has no problem telling me to fuck off, and walking out on me, so it’s not all popsicles and unicorns, but we’re working on it. Just don’t judge us too hard as I was diagnosed when she was 8 and we’re actually doing the best we possibly can.
I am not happy that I have ALS. And I am not angry that I have ALS. I just have ALS, kind of like I have a bald spot, which is why I started shaving my head at 28. I understand that life doesn’t always go the way we planned, and we can either become bitter or we can show up and play our hand. The truth is our moms were right when they told us life’s not fair.
I remember this one time at the IP Casino in Biloxi; I was dealt 3, 8 off suit - a hand you don’t play. This guy across the table from me was incredibly cocky and had my number all night, but I thought I finally had him figured out, so I decided to play the hand and raise $25 pre-flop. Everyone folded except for him. The flop came with 3 spades, one of which was an ace. I had no spades, and I knew he paired his ace. I checked. He bet $25 and I raised to $75. He called. The turn came, I checked, he bet $100, I called. The river came. Now I could have had a flush, a straight or a set, and I knew all he had were aces or two pair at best. And I knew all I had was jack shit. I checked. He bet $100, and I came over the top and pushed all in with my final $300. He pondered for what seemed like hours and then folded. I then showed him my 3, 8, and he lost his ever-loving mind. He went on tilt, and I took the rest of his money on the next hand with a full house.
In poker, you don’t have to play the hand. You can fold. But poker is as much about playing your hand as it is playing your opponent. So is true in life, except in life, you don’t get to fold your hand. So, if you get dealt a 3, 8, you have to play it. But you also have to play your opponent, which in my case is death. So, I am playing both. I am not afraid of death nor am I ready to die, but I have stared death in the eye, and I have already won because death knows it has no power over me.
From the beginning, my goal has been to make it to 2030 when Zoe Moon graduates. Now with the trach, I truly feel this is attainable. Which means I should have at least 84 more updates in me. However, there is a very hard reality that comes with living that long and that is the cost. It will cost us on average $120,000 a year to keep me around. The cost is for caregivers and out-of-pocket expenses for things Medicare deems non-essential. I suppose no one at the Medicare office has ever had ALS, as caregivers aren’t covered.
Our team has come up with the idea of an annual way to raise funds that we hope everyone can participate in. People have been very generous since April 14, 2020, and many have given to our family in many different ways.
We are hoping that on April 14, together, we can pull all of our communities together to raise a large portion of the annual expense. Our goal is to raise $80,000. Imagine if we are able to spread the word and get a lot of people to all contribute a little. This simple donation would be life-giving.
We are asking you to personally contact 10 people. Not just post it on Facebook, but text 10 of your people and ask. This is what you can ask of those 10 people.
Financially support TheJeansonne7 by giving $14 (or more!) via Venmo (@TheJeansonne7).
If you feel so inclined, I humbly ask that you consider donating. I truly hate asking for support, but the truth is, this is the only way we make it.
In addition, if you see us taking any trips, that is because someone gifted that to us. So, we keep moving onward, forward. My life at 46 is not what I thought it would be, yet in many ways, it is better than I thought it would be. Like I have said before, my life is a living, breathing juxtaposition.
Life is a beautiful clusterfuck, and love is here. I appreciate you being here for it.
Love.