It is the last day of the year. I am pretty much back in the game of life. I am tired all of the time, which I am not fond of, but it beats being dead. So, I’ll take it. I told my mom that I don’t know why I am so tired. She said it is because I have ALS. Old people are so wise. They’re like tall Yodas.
I used to enjoy December 31 because I would look back over what I achieved over the year. How many books I read. How many miles I ran. How many miles I swam. Things like that. This year I read Zero books. Intentionally. I ran and swam zero miles. Unintentionally. I did, however, survive 2022, so that felt nice. And I learned how to love more, and I wrote more than 70,000 words with my eyes, so all things considered, I think 2022 is ending rather smashingly.
When I was first diagnosed, I found others on Facebook, Twitter, and Instagram who had ALS to see how they were handling it. I, of course, started in my own backyard with Steve Gleason and found others from there. I quickly noticed that many of the people I was following were incredible advocates, like Steve, who were engaged in ways of finding a cure for ALS or finding ways to improve the lives of those with ALS. I have always struggled with comparing myself to others, so it was really difficult for me in the beginning because I thought I needed to do something big. But in my soul, I knew that wasn’t for me. I knew that fighting for legislation or finding a cure was not my thing. So, what was my thing? My thing was to do what was in my soul, what I had devoted the last 20 years of my life to. My family and others. No one is going to write articles about me or praise me for how I transformed the world, but then again, that’s never what my life has been about, so why start now? No, I have found my niche and that is investing my life in the lives of others, starting with my wife and kids. And then others all around me.
It's difficult to fathom what more ALS can take from me. I suppose more of my facial muscles and also some other internal things with my lungs and stuff. I don’t really know. But whatever. I’ve weathered this much so bring it on motherfucker.
I’m insanely grateful for our two new caregivers, Andy and Mary Kate. These two take incredibly great care of me and on top of that, they have given Kristy some life back. For the first time in two years, she is able to go to lunch with a friend or sit at a coffee shop and pay bills or take a nap. In addition, my kids are once again free to be kids again. Especially my teenagers. As for me, well, it has taken some real getting used to. There is nothing quite as humbling as having others wipe your butt or deal with all your bodily fluids or whatever. And I wish I could speak this part because then it wouldn’t sound perverted but instead, you’d be crying from laughing because this shit is funny as fuck, in my head. That sentence alone should be all enough reason to delete this story, but if I’m going to keep these updates honest like they were when I was high and did updates in one take with no editing, then it has to be said because it’s my reality with ALS.
So, I’ve already mentioned showering with Kristy every day was my dream. But the way it’s gone down is not what I had in mind. She stays dressed because there are always kids who need to come in. So can you imagine what I was thinking when we brought our caregiver, Mary Kate, into the shower equation? Kristy would train her. So, for three times in my life, I was showering with two women. Guys, just take my word for it. Pornhub is a liar in more ways than one. The truth is, showering with another woman is interesting. And let’s add Andy in there because he also showers me. It’s embarrassing. It is humiliating. It’s awkward. It is not natural. But I’m learning that vanity comes in many forms. I need help. This is my life from here on. Again, not what I chose. Not what some deity chose for me. No, it’s this thing we call life. So, I work once again on contentment and accepting this new life. And I’m now a very quick learner. So, it turns out I’m okay. Of course, I had to explain to them the same thing I told my boys in case they ever see me naked, a penis that is not used, shrinks. It’s a real condition. it’s called shrinky dick. Like shrinky dinks but different. Seriously, pause and Google it. I’ll wait.
Now that all the guys are Googling and it’s just a female and non-binary audience, what should we talk about? Overall, I’m well. I simply cannot believe this is my life. But here we are. I’ve never been much of a resolutions guy, so I won’t start now. I have two goals. Grow in love and live. And I only have control over one of those things. So, game on.
If I had to choose one thing, I learned this year more than anything else, I would have to say, surrender. Surrender to love. Surrender to life. I am in control of nothing. I now know what it is to surrender everything. There are lots of songs about surrender, but some have a bit more substance. Case in point. Alanis Morrissette’s song entitled ‘her.’ I now understand the wisdom if you want to find your life, then you must be willing to lose your life. People think these philosophers back in the day were talking about life after death, but for the most part, they were just trying to get people to think about how they experience this life, especially since it’s the only existence we are certain of.
As previously mentioned, our greatest news is that we have found two incredible caregivers, however this is where things start to get expensive. For those who would like to help in this area, we have broken down some ways to help financially with caregivers. At present we have two part-time caregivers and are looking for a third.
For one day. $30 x 8 hours = $240.
For one week. $ 30 x 8 hours = $240 x 3 days = $720.
For one month: $ 30 x 8 hours = $240 x 12 days = $2880.
For six months: $ 30 x 8 hours = $ 240 x 72 days = $17280.
For one year: $30 x 8 hours = $ 240 x 144 days = $34560.
As you can see, that’s just one caregiver. It will cost us over $100,000 a year to keep me going. Good times.
for those who would like to donate, you may do so here : https://www.thejeansonne7.com/donate-1
As always, we thank you for being here for it and for your meals, your letters, your love. Thank you.