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 about 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.
Â
So, if you have someone in your life that you love, squeeze them tightly. 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 because of this disease. My kids and my Kris are who they are because of this disease, and in case you don't know, they're fucking amazing. What a predicament. That's why I say, life is a beautiful clusterfuck and love is here.
Â
Love.