The list of life changes that ALS has forced me to accept over the past eight years is almost as extensive as the ever growing one keeping track of Trump’s lies. Yeah, it’s that long!
First, it was my upper body strength. Next was my voice that started to weaken and then my ability to swallow. Which meant, bye bye food and hello feeding tube. My legs and lungs were both the last holdouts. At this time, I am completely immobile with the exception of my left big toe (the one that went to the market) and my eyebrows.
All of these dramatic physical changes have been gradual and at this point, I am pretty stable. I have accepted, leaned into these changes. All of them except one! I refuse to let this vicious disease take away my sense of style! I will continue to stand tall, metaphorically speaking obviously!
I have always been a shopper. A trait that was passed on to me by my mom’s half of my DNA. For as long as I can remember, I have always cared about my clothes, my style. I used to iron my clothes every morning in high school. I can’t remember more than a couple of teachers from high school, but I could probably rattle off ten different looks.
The same goes for college. I went to Arizona State University, and I don’t think it is a far stretch to say that that move only fed the beast. Tempe and its neighbor to the north were like Beverly Hills 90210 meets Yo MTV Raps and Keeping Up with the Kardashians. I arrived with a wardrobe full of Abercrombie and Fitch that was quickly replaced with Diesel and French Connection.
Then came my summer internship at Blender Magazine in NYC. That only injected my own existing style with an insane amount of confidence and creativity. After all, you can wear whatever you want in NYC as long as you commit to it. It’s the home of titans from fashion to finance and their corresponding styles. I felt right at home, and made my permanent move to the city two weeks after graduation with two suitcases, and no job or place to live.
Flash forward 16 years and one terminal diagnosis and not much has changed. I still think about my personal appearance and style every day. This is one of the biggest differences between me and my wife! And by big, I mean massive. I can’t stand to not match even if it is pajama pants and a t-shirt! She makes fun of me and it’s okay, because it is just one of those things married couples do. She has instituted one house rule. I am on a one-to-one shoe program. Meaning for every new pair of shoes I buy, I have to give one away.
This works out very well for someone! Considering the fact that my shoes never touch the ground! They remain in mint condition! My shoes are always on full display because of my wheelchair. Which is why I am especially proud of my latest purchase: a pair of custom-designed Air Force Ones that have my daughter’s initials on the backs!
People are always surprised to find out that anyone can create their own Nike kicks. The Nike ID program is really easy to use. The best part is that it is not any more expensive than regular Nikes. The only drawback is that they do take three weeks to arrive.
One other silver lining to this whole ALS thing is that I never have to care about what my butt looks like because it is never on display. Plus I could probably get away with only ironing the front of my shirts!