These last eight weeks are a blur. I spent most of October and the beginning of November in the hospital lying down. Once I got home, I slept for about two weeks. I have just started getting back into my chair, and that has proven to be difficult as I am trying to get comfortable and learn new ways of sitting in my chair. Positions that were previously comfortable are no longer options due to the loss of neck muscles and also the addition of new hardware, my trach. This is a game-changer. For obvious starters, it keeps me alive, which adds a whole new dynamic to our family. Things like, “Dad, can I go to so and so‘s party? And dad, I really want you to think about your answer because I can unplug you.”
In addition, showers are different, stretching is different, transfers are different, relaxing is different, riding in the van is different. If you can think of it, it’s different. In many ways, it feels like we are starting over.
I’ve been contemplating for weeks now, this new life I have. Am I 50% human, 50% machine, or am I 100% both? It’s weird knowing you’re being kept alive by a 20-pound box hanging on the back of your chair. Overall, I feel really good and am slowly regaining my strength.
The most exciting thing to happen is that we have two solid new caregivers. They do it all. Showers, sit with me, trach care, and the millions of other things that ALS demands. One is my friend and neighbor, Andy. We have a shit load of fun together. He actually does improv, so he is hilarious, and we mostly just laugh. The other is Mary Kate who was one of my nurses in the ICU. And well, she’s Mary Kate, I’m not sure if I’ve met a kinder human. For years I have held to the idea that the universe is benevolent. I feel like Andy and Mary Kate are proof of that. The reason for caregivers is that with a trach, I now need someone with me 24/7. More importantly, as amazing as the kids are at taking care of me, we don’t want them to have to. We want the kids to still be kids and not having to stay home on Friday night to watch me because Kris has somewhere to be. Caregivers also relieve an enormous amount of pressure on Kris and give her back a little bit of time to herself, which she hasn’t had in two years.
I’m glad I’m still here, though it demands 24/7 attention. Kristy felt up for it and so did I. I will say that I laid in the ER struggling to breathe because I had the flu, I would have been okay to die in October. I have lived a wonderful life. I am full and content. But when my doctor said “we need to make a decision. We can make you comfortable as you transition from this life to the next or we can do a tracheostomy and you will live the rest of your life on a ventilator.” And in the midst of the fear and pain and chaos and confusion, I felt fully in tune with my soul and the Oneness, and for a brief moment, I had clarity and I looked at him and said “I still have things to teach my kids, so do whatever you have to do to keep me here.” And they did. And here I am. And on this side of a very difficult and scary 40 days, I am happy to be here for it.
The only major issue right now is I am biting my tongue pretty bad when doing coughing treatments and when I yawn. And I don’t mean, “ouch I bit my tongue.” This is I’m biting my tongue and for reasons I don’t understand, I clinch down with full force and can’t undo it myself and someone has to pry my jaws apart. Besides being painful, I get very concerned about biting my tongue off because then how would I talk? Let that sink in and then, please laugh.
Now that ALS has taken away just about everything, the ability to move, eat, smell, and breathe, I have been reflecting on what I miss most. After discussing for an hour with my buddy Andy our favorite shrimp poboys, roast beef poboys, fried chicken, fried pickles, burgers, and more, for a minute I thought maybe eating is what I missed most. But then he stuck a vanilla formula in my feeding tube, and I got full and easily realized that is not what I miss most.
I have decided that the cruelest part of this disease is robbing me of my ability to touch. To pet my pup, to hug my friends and my kiddos, to reach across the table to take my friend's hand as she grieves the most devastating loss. I miss shaking hands and patting people on the back. I miss being able to reach out and hold her hand, I miss being able to hug her and wipe her tears. I miss coming up behind her and squeezing her as tight as I could. I miss being able to hold her in good times and shitty times. I miss finding her body under the sheets, a hand or a leg or foot or ass, just to know that she's still there. We are figuring out new ways, but I believe I will grieve this until my departure date. So, I miss the ability to touch the most.
In case I haven't said it lately, ALS is a motherfucker. But if you were to ask me if I would trade in this disease for the life I was living, I am not so sure I would take that trade. I am who I am