Dancing with ALS and Life

dancingwithalsandlife.blogspot.com Living with a terminal illness sometimes feels like a wild roller coaster ride. I’m at the bottom of the track and slowly up I go. Click, click, click, I make it to the top of the hill. Then, in an instant, I plummet at high speeds into the valley below. I start going up another small hill and back down again and then up ahead, I can’t see.  All of a sudden, I'm whipped around a sharp turn. This journey has so many facets, and it changes from moment to moment.  Initially, the diagnosis comes and whiplash hits. I'm trying to process things in a state of unbelief. I begin to mourn some of the losses, maybe check out for a little and then I have a choice to make: will I turn left or right or keep going straight? Depending on the choice I make, the result is the difference between feeling a sense of hope, purpose or maybe despair.  Some people‘s journeys are very short at this stage of the ride and others may be more of a lengthy one.  ...

dancingwithalsandlife.blogspot.com Time travel can be a way to connect and build relationships with people. In this blog, I will be talking about what my transportation experiences have looked like with ALS and my disabilities. However, before we do, let’s take a trip down memory lane. I remember the first time I got into a car with my drivers permit.  As a joke, my father put on a motorcycle helmet, looked at me and said, “I am now prepared to teach you how to drive!”  I laughed so hard, I almost peed my pants!  Looking back, he probably was pretty smart and realistic. My first car was a manual stick shift.  If you have ever driven stick shift, you know there is a learning curve to having smooth transitions between the gas, clutch and gears. After several months  of practicing my Mario Andretti skills, I officially passed my drivers test in 1988 at the age of 16.  I couldn't wait to get behind the wheel of the car and experience the feeling of independence...

                                            dancingwithalsandlife.blogspot.com   Most folks are as happy as they make up their minds to be”  ~ Abraham Lincoln 

dancingwithalsandlife.blogspot.com  After the initial shock of being told by my doctor that I have a terminal condition called ALS, the next step was to muster up the courage to tell my family, friends, and coworkers of the devastating news.  Sharing this information with others was a very painful endeavor.  Retelling it over and over again was overwhelming and emotionally exhausting not only for me, but for my spouse and my family who had to do the same with everyone with whom they interacted. I was soon ready to send certified letters in the mail so I didn't have to verbalize and relive the pain and grief I was experiencing. Not only was I facing my own grief, I was also facing the stress people felt when I told them the news. I never knew what type of response I was going to get.  Here are some of those responses. People put their arms around me and start sobbing for a long period of time. One person said, “Oh,” and walked away. I guess he didn't know what to say ...

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

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

dancingwithalsandlife.blogspot.com    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...

dancingwithalsandlife.blogspot.com  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 momen...