Dancing with ALS and Life

    “Tell me, What is it you do with your one wild and precious life?” ~ Mary Oliver  7/15/25 The choice is yours!

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 validating the terminal illness and or disab...

 "When we are unable to change a situation, we are challenged to change ourselves."   ~ VIKTOR E. FRANKL  10/4/24   

When diagnosed with a disease I was not familiar with, I began to read every book I could get my hands on, and I searched the internet to feel informed about what to expect as I moved forward. Prior to researching the only things I knew about my illness was Lou Gehrig, New York Yankees baseball player, the ice bucket challenge that captured the world and that it was not a good diagnosis to have. After completing my research, reading all those books and looking through websites with all the medical jargon, I still felt totally alone as if no one could truly understand what it was like to walk in my shoes. This was despite having a strong support system with family, friends and attending my first medical appointment at the ALS clinic.  One thing the information grossly lacked was it didn't explain anything about what it was going to be like to truly live with ALS. You know the daily nitty-gritty stuff people don’t want to acknowledge or share because it is too personal?  Yes, th...

Finger Lakes, NY- 2024 Enjoyed watching the beautiful mornings and evenings from the porch of our lake house rental. “There is a sunrise and sunset each and every single day, and they're absolutely free. Don't miss so many of them.”   ~ JO WALTON    

As a medical social worker for many years I would joke with my peers, aka Besties, that we need to write a book about some of the patient/family scenarios we dealt with because we would say “we can’t make this shit up.” I never imagined in my 50’s that I would consider writing a blog or book from the perspective of someone who was diagnosed with a terminal condition, called ALS. I’m not a writer, nor do I feel like I’m good at it. Honestly, I think this will never get published, and it would be more for my family and my closest friends to read if they are interested. Who knows, maybe it won’t be read by anyone. However, after thinking about the subject matter and sharing my idea with a few close family members and friends, their words of encouragement made it clear that I should move forward and give it a try. One thing I can guarantee you, my writing will be sincere, truthful, and from the heart. Since my diagnosis, there have been so many moments related to my disabilities that I fou...

Before I start my blogging, it is important to me that my readers understand the origins of my blog title. When I was diagnosed with ALS, I just wanted to control everything that was happening to me. During an ALS clinic appointment, I received sound advice from Dr. Alair Altiero, LPC, PhD. She told me, “Stacy, ALS is not something you can control.  You need to learn how to dance with it.” Her advice has always stayed close to my heart because it is how we should be navigating through life with or without a terminal illness.  We have the tendency to want to control everything in our environment until one day, we realize we are not in control anymore. That is where faith and reality intersect. The other reason why this blog title fits so well for me is because my daughters and friends know that I enjoy dancing. I’m not good at it, but as long as I have some leg strength left, I will continue to move my body or feet to the sound of music.  In this blog, I plan to post every...

 “Being strong isn’t about muscle, it’s about facing challenges head on” ~ LOU GEHRIG     I was diagnosed with ALS “Lou Gehrig’s disease” four years ago on July 15, 2021 at the age of 48.  It took me two and half years to get the news of this devastating diagnosis.  This date has a lot of significance in our lives therefore, I thought it only made sense for me to publicly open my blog on this particular day!  I personally want to t hank you for joining me on my blogging journey! Blessings ✝️,  Stacy