Dancing with ALS and Life

dancingwithalsandlife.blogspot.com AI ART, “Every Rung Matters” These are a few things that happened while I was still able to walk and had some mobility in my arms and hands. I will sarcastically say that the “fun” part of having ALS is never knowing what to expect. Every day I wake up, I may have lost the ability to do something I was just able to do yesterday. Or, I can go for long periods of time without any changes in my functional status. Then when I start to come to terms with the loss of a particular function and give myself a little pep talk: “Stacy, you got this, girl.” Something else happens. I joke that having ALS sometimes feels like I’m being robbed  because in a blink of an eye I feel like something else is being stolen away from me. This becomes a bit of a dilemma because I’m constantly needing to readjust my thoughts and actions. My tendency has always been to be helpful when others are in need of assistance. However, I now need to constantly remind myself of the r...

dancingwithalsandlife.blogspot.com AI ART, “Godzilla Mayhem” The first time Godzilla came crashing into my home, he didn’t come from the ocean or a movie screen—he came through my front door and straight into my life, leaving a trail of destruction behind him. In the summer of 2025, Godzilla—with his flame-throwing atomic breath, long, powerful tail, and destructive force—arrived in my neighborhood. This gargantuan creature came into my house, breaking things and tearing my home to pieces. And when I say breaking things , I literally mean breaking things. He bent the legs on tables that my husband had to hammer and screw back into place. He knocked standing framed pictures, table lamps, Alexa speakers, makeup, and knickknacks onto the floor. He ripped off door and entryway trim and grabbed the legs of our dining room chairs, dragging them down the hallway and nearly gouging chunks out of the drywall. Moving at high speeds, he terrified the dogs, nearly stomping on their paws, while my ...

dancingwithalsandlife.blogspot.com I try really hard to remain positive and to focus on all the good things that are in my life. And I try to live day by day and not think too far ahead in this shitty situation called dancing with ALS and life because I have been on this journey with symptoms starting six years ago. I learned early on constantly thinking about what I am losing or what will not be, takes me down a mesmerizing spiraling Alice in Wonderland rabbit hole, and I land in a very strange world that I don't recognize nor know where I fit in. When I do land in the strange world, I am determined to claw my way back up and out of the spiraling bunny hole.  I really hate when I feel like I'm wasting even one of my remaining days of life that God is giving me, because I'm just focusing on the negative shit! I find it is imperative to keep my mind busy to avoid further rabbit holes or strange lands.   However, I'm not always successful, and every once in a while, when ...

  As a teenager, I loved growing up in the 80’s.  It was an era when everyone seemed to have fun.  No one was uptight about things such as being politically correct about everything you said or did. It was a time when you could have a Halloween party and not call it a fall fest or celebrate Christmas instead of calling it a holiday celebration. I especially loved all of the 80’s music from Prince, Joan Jett, The Go Go’s, Pat Benatar, Bruce Springsteen, The Cars, and Madonna. Mostly, I was obsessed with the launch of MTV and when they actually played music videos not reality TV shows. I remember I couldn’t wait to get home from school to check out the next new music video.  On the weekends, I’d stay up past midnight watching all those videos. I loved my walkman and purchasing music cassette tapes, then a cd player, using the money I earned from my waitress job. The 80’s were also known for blockbuster VHS/CDs and movies like Breakfast Club, Sixteen Candles, St. Elmo’s...

dancingwithalsandlife.blogspot.com  I began to take one step forward and then one step backward and I start moving forward again a.k.a. dancing with ALS because it is constantly robbing me of something. For example, I can no longer drive, take a shower on my own, bring a glass to my mouth to take a drink, dress myself and hug my loved ones.  The list becomes endless when living with ALS. These things are all happening while I am keenly alert and aware that the disease will progress . After time marched on and death didn’t come as soon as I thought, I had a choice to make.  Do I continue to remain in the dark spaces, or do I use my faith and decide to start living the life that I’ve been given even with all the nasty things that come along with it? The next fundamental question that presents itself is what is my purpose? Everyone needs to feel a sense of purpose and hope in their day.  It is vital part of our mental health.  Ironically, this was a conversation I ...

dancingwithalsandlife.blogspot.com  I started working at age 15 waiting tables at a local restaurant and helping at my father’s business.  I completed high school, and then I was off to get my bachelor’s degree in social work. During my college years, I had few other small jobs for spending money. With all of those jobs combined, it tallies up to 35 years of earning a paycheck, paying into Social Security and saving for my retirement.  I loved my professional career as a social worker supporting individuals with intellectual disabilities and most of those years, serving the elderly in my community nursing homes. I was forced into retirement due to my ALS diagnosis and the disabilities that came along with it. Because social workers make a modest living, it meant, in order to make ends meet, I had to  apply  for disability benefits.   Applying for disability is a very interesting and long process because it requires tons of paperwork from the doctor val...