3 Simple Letters That Changed My Life Forever

Have you ever had an experience or a moment so impactful that you can remember the day so vividly. What you were wearing, where you were, how you felt? Well, I can tell you that for me, I remember everything about the day My Sister Roz held my hands and said “Cyndi, I have ALS, I am so sorry.”

It was over a year that Roz had started to experience some strange symptoms. She had begun to trip a lot, dragging of her left foot, trembling hands, muscle spasms. It was slow at first. I remember making fun of her every time she tripped. Asking her if she needed new shoes, watch out for the cracks in the concrete, try not to trip on the invisible rocks, did she need a walker. You know the things little sisters do, to torment their big sister. It was funny at first, but then we started to notice other things happening, it was no longer a joke, and we became very concerned. Doctors first said she had Rheumatoid Arthritis and that it was affecting her legs, then her hands. But once she started getting the muscle spasms where she would drop her coffee cup, cutting something with a knife became challenging, we knew this had to be something else. She was referred to a neurologist who began the year long assessment and testing for what we hoped would be something simple. Something that could be treated easily with some concoction of pills. As the year passed, the symptoms became more aggressive. She would have long bouts of muscle fasciculations on her thighs. The tripping was constant, and she could no longer hold a knife steady. She couldn't drive any longer and cooking wasn’t an option for safety reasons.

I thought for sure she had Muscular Dystrophy or Parkinson’s. I did all the research, I had prepared for the diagnosis, the challenges ahead, what would she face, what would we face as a family. How do we help her live the best life that she possibly can. Although there are no cures, there are a plethora of medications, treatments, clinical trials that she could try. People with MS and Parkinson’s, live long lives. Some of them symptom free for a while. I was ready, or so I thought. You see, when you know someone that you love is sick, you never think it’s fatal. You never think that in this day and age, where we can clone sheep, conceive babies with IVF, freeze embryos etc., that your loved one will have a diagnosis that is terminal. You always think that with all the medical advancements, that there is something that they can try to help extend her life for several years. Well for me, that was just a silly dream. A lie, I made up in my head. There is a disease that till this day, no medical miracle can heal or even help prolong life for a few more years. Just something that can possibly make them more comfortable for a few extra months.

I was entering my home when I saw My Sisters car parked in front. She came out of the car with her husband, and she gave me a hug. They quickly chatted with my husband and son. My husband took my then 7-year-old son inside with my brother-in-law. I remember we were now standing in the garage, and she started telling me the results were back for all the different tests they had been doing for several months. She then said, it’s not this, nor that, it isn’t this and it isn’t that. I then felt like I was stuck in a silent movie, where her words came out her mouth in slow motion. Cyndi, I have ALS, I’m so sorry. Those 3 simple letters. I felt as if someone punched me in the gut. I lost my breath, I couldn’t see, I didn’t hear her correctly. Those 3 letters lingered in the air like puffs of smoke, as if they were spelled out by someone who had just exhaled cigarette smoke. I remembered how my knees buckled, how she held me so tight. How she continued to say I’m sorry Cyndi, I’m so sorry. Sorry for what? For what’s to come, for the unknown and for how this will change our lives forever. She knew, nothing would ever be the same again.

You see Roz and I were as thick as thieves, we fought hard and argued like crazy, but we LOVED BIG. Roz and I are 7 years apart. She wasn’t too happy when I came along, as she was an only child. She said she was dethroned. But once she saw my face she instantly fell in love. Those were her words not mine.

I couldn’t imagine my life without my big sister, my partner in crime, my confidant, my go to, My Person. I have had her in My life, My Entire Life. All of my first memories are wrapped up with her in it. How do I make new memories where she’s not in them. These are all the things I struggled with then and still do till this day.

The next 7 years would change all of our lives. This disease impacts everyone around you. For those of you that don’t know, ALS is a disease with a life sentence. Average lifespan after diagnosis is 2 -5 years. Roz battled ALS for 7 years like a true warrior. We celebrated every little thing; we missed no birthdays or holidays. We designed a life around Roz to ensure that we soaked it all in, that she soaked it all in. A life well lived, well loved, and well served. Well Done!

She was diagnosed Monday, October 6th, 2014, and she was called home on January 3rd, 2022.

My heart still aches, my heart is still broken, but my soul is at peace knowing that she is free from pain and enjoying everlasting life in a beautiful place called heaven.