Dancing with ALS and Life

AI ART, HE HAS US COVERED  When people think about ALS, they often imagine it as the biggest challenge a person could face. They see the physical losses, the medical appointments, the equipment, and the uncertainty, and assume that life must surely pause enough for me to process all of it. But life doesn't work that way. The world doesn't stop delivering heartbreak simply because I am already carrying more than most people could imagine. One of the most difficult realities of living with ALS is discovering that the disease doesn't exempt me from the rest of life's tragedies. Financial stress still exists, friendships can fade, unexpected crises can happen. Sometimes unimaginable losses appear in my life, leaving me trying to make sense of grief while already navigating a life altering illness. People often ask how I cope with ALS. What they don't always ask is how I cope with ALS and everything else. The truth is,...

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 Experiencing slow but continual motor function loss of my arms, hands and now in my legs, sucks!. Prior to living with ALS, I was very active with a busy life consisting of my career and family. For self care, I enjoyed hobbies to help me decompress from the world.  In 2021, my busyness came to a screeching halt going from 100 miles an hour to nothing and gave me unbearable whiplash. I just felt so lost when everything was being stripped away from me, especially all my hobbies that required using my hands such as gardening, baking, crafts, crocheting, and reading. Focusing on the losses just threw me into a tailspin of deep depression and self isolation. I would spend countless hours scrolling through webpages on 101 hobbies to try, hoping and praying for hook, line and sinker that would fit my new normal. I even googled activities/hobbies for disabled individuals. Funny thing is, the website said disabled individuals should try gardening, puzzles...

 dancingwithalsandlife.blogspot.com “The soul that gives thanks can find comfort in everything; the soul that complains can find comfort in nothing.” – Hannah Whitall Smith

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 am thankful for my family & friends who are dancing with me on this life journey! Who are you thankful for in your life? 8/10/25

dancingwithalsandlife.blogspot.com   “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