Well, it is January 31, and I haven't written my January update, so I'm going to do something I have not done before and post straight from my journal. So, this will be all over the place as this one entry was over the course of weeks.
Here is my update for January 2023:
The trach is wonderful. I don’t gasp for air anymore. The problem is it’s expensive because now we need caregivers. So, I don’t know how sustainable it is, but for now, we have it covered and I love them - Andy and MK and Britley. It is amazing because Kris gets time to herself. The most important thing to me is Kris and the kids. That’s why I’m still here.
And I don’t feel like a burden, and if I am, well, they need to all six enter the World Series of Poker once I’m gone. Set aside some of the life insurance money and go win millions, you bunch of bold-faced bluffers. I guess that is the thing with real, genuine, pure love. You can’t fake it. These are my people. This is my reason.
People with ALS, right here in Louisiana and the United States and Canada have found me on Facebook and asked me about the trach and living on a ventilator. Is it worth it? To which I reply, if you have a reason. They are my reason. I can’t imagine not being here to share life with these people. I just have to go the day before my life insurance policy expires. I think we have 19 years left. Insurance. What a scam. Bullshit. But I digress.
Now with MK, Britley, and Andy and maybe one more new one, Kris and the kids get a few hours of normalcy in their lives each day. And let us not forget those that cook for us and pick our kids up from school, and those of her friends who check on HER and not just me via her.
Now this entry is not in one sitting. I keep coming back to it. Tonight, it is 1 a.m. and my weed oil has fully kicked in. I had a huge breakdown tonight and just wept and wept about how unfair this is to her. She pulled our beds together and put my arm around her and my hand on her face while she holds my hands and she is asleep and she is twitching and if I go tonight, I go out the richest man in the world.
Everyone thinks I’m so strong, and the truth is, nothing in my approach is fake, but I have my days. I had an epic breakdown one night recently where I bawled for 2 hours and at one point, I told Kris, “I wish we were just a normal couple and could get what we fucking wanted. this is total bullshit and unfair. I don’t want to be a fucking inspiration. I want to be normal and be with you, even if we don’t have shit.” See. Just a normal dude. Just like everyone else.
The next day, Kris told me I’ve been off my Celexa for two weeks. Ah. That explains it. But the truth is, I am a feeler, and I need to feel the feels. Plus, I’m planning a mushroom trip soon (because science), and SSRIs have been shown to offset the effects of psilocybin, so I am just going to wait until I get back on them, so I’ll be way in my feels for a while longer.
In other news, Kristy got to go to Houston to see her friend for 4 days because we have caregivers who sleep over and make sure I stay alive.
Physically, there is nothing new. I think the disease has very little left to take from me, so I feel pretty steady Eddie right now. I really like my ventilator. We have become good friends as it keeps me alive, and I help it fulfill its purpose on the earth. I think I’m going to name it Simba based on our symbiotic relationship. I still have my tongue, so that’s nice. I still bite it a lot, but it is growing numb.
I do have one really good story. We had our weekly Diamond Dogs meeting, and this spontaneously turned into a 90-minute time of us just telling stories. Somehow, the boys stumbled into uncharted territory as the boys started talking about how my disease is forming them in positive ways. Unreal. They know ALS means we get less time together, and to hear them speak of their own formation in positive ways. Wow.
I’ve also been thinking about how I want to be remembered once I die the day before my life insurance policy expires. Side note. If you don’t have life insurance, get it. You never expect to get sick, but you have no control over it. Anyway, here are some hopes on how I’m remembered:
Life is a beautiful clusterfuck, and love is here. If people don’t know what they mean to me, it’s not because I didn’t try to show and tell them. He was just a normal dude stumbling and bumbling through life learning to live with his feet firmly planted in the soil of reality with a soul that knew how to fly. He lived like the very last word is Love. Thanks for being here for it.