An ALS Story

Lissette Grey, as a child she was an innocent, goody two-shoes type of girl. Always getting marvelous grades, never disappointing her parents. She was a follower, never the one to stand up for herself, or speak out of turn. She was the kind of girl you would think never deserved any sort of pain or setbacks in life, but little did she know that was right what was heading her way, waiting to attack. When Lissette was a teenager in the 1990’s all she did was live her life. No worries, no pain, no need to stress because she was just living her life. Not only did she go to a couple parties, and have a few boyfriends but she traveled the world with no plans ahead of her. She gave back to others in need and handed all her homework in on time. Lissette was the girl everyone aspired to be like, to have no boundaries in life, no one saying “you can’t do it.” No dead ends signs ahead of you. This girl always managed to stay on top of things, and find a way out of even the hardest situations. So never did anyone suspect what was coming straight for her, but we are not there yet. Lisette’s family would always go to church on Sunday and she always knew she had God standing humbly by her side at all times. If something were to go sideways in life Lissette knew that she had someone there to talk to, a helping hand if you will. However I am not saying that Lissette never came across difficult times through her journey of life. She had experienced a devastating loss of her uncle, who had struggled with cancer and himself and sadly lost the battle. She also lost one of her best friends in high school, to a car crash. Her life was not perfect, but she herself was doing well, and was as selfless as they come. Never taking the easy way out, or trying to make it all about her. Of course, everyone has their bossy sides and Lissette surely had her’s. When it came to planning Lissette went overboard trying to get more and more involved in what was going on, she never wanted to be left out and always wanted to have a good time. Although on top of her bossy side, Lisette was also tremendously shy as a child. Always making someone else speak for her at restaurants, or public places, not wanting to be the laughing stock of the crowd. So this was Lisette, selfless, generous, grateful, loved, kind, humble, with just a hint of shyness and bossy in the mix.

However that was then, the past, back then, gone and now just a beloved yet distant memory fading slowly further, and further back into the corner of our minds. The real story begins 2016 may 9th in the roaring city of LA, California. “Come on mom, were going to be late for school, you know I have a massive math test today mama!” Cries Lucy, Lissette’s daughter. “Get in the car Lucy, my coffee’s just about ready.” “I will be there in a minute, but are you sure you didn’t forget to pack anything?” Lissette called back. Lissette was always caring for her children first before herself. Even with a potentially life-changing doctor’s appointment ahead she wasn’t phased by anything. “NO Mama I have everything don’t worry, I’m the organized one remember?” Lucy was her mom’s biggest fan. She loved every single thing about her mom and was proud of who had raised her so well. On the way to school Lucy suddenly remembered that it was Monday and she had ballet class after school that day. Out of the blue Lucy shrieked, “Uhhhhhh Mom I think I forgot my Dance bag……again. I’m sorry” “Ugh come on Lucy, you know I have a very important doctor’s appointment today and I cannot be late.” The car sharply turned back towards the Grey’s

household with a whir. Lisette warns her daughter “You are ten years old now, this better not happen again, ok?” “Ok. I’m sorry mom.” Lucy responded. Although, Lucy knew in the back of her mind that this would definitely not be the last time this would happen to them. Nonetheless she felt terribly for making her mom late for her appointment, and would try to be more responsible next time. As Lissette frantically ran up the stairs of their beautiful, huge big blue house she noticed the painting on her wall. This painting had always been there ever since they moved in, it was not exactly pleasant looking, but her co-worker had made it for her. You could say she was kind of guilt-forced into hanging it up.

As she passed the painting on the way up the grand, shiny hardwood stairs she sensed something was different. She felt as though the painting had been captured and locked into her memory for that day. Walking up the stairs and grabbing Lucy’s dance attire she could not stop pondering on what it might mean to her. She immediately felt different, and knew it had an important meaning, but had no idea what that was yet. Lissette made her way back to the car a little confused and cautious, as she had never experienced anything like this occurrence before. After dropping Lucy off at her school, Lissette continued on to her doctor’s appointment. She made the last call she would ever make before her life changed but of course she didn’t know that yet.

Lissette called in on the substitute that was filling in for her at her school. Her name was Mrs. Deka, Mrs. Deka had been a faithful friend to Lisette ever since she had started her job as a kindergarten teacher. Teaching little children was the dream job Lissette had dreamed about since she was a little girl herself. “Is everything going alright Susan?” Lisette asked. “No problems here, we are having fun!” Mrs. Deka replied enthusiastically. “The class is very well behaved today.” “Great! Thanks so much again, I’m just pulling into the parking lot now about to go inside, thanks again!” Lisette said. As soon as the phone call ended she hopped out of her car with her wrist that would not stop hurting her. That was why she was at the doctors in the first place, nothing except for a little hurt wrist. “Well it happens to the best of us.” Lissette mumbled under her breath as she climbed out of her car. She was expecting that the worst it could be was potentially carpal tunnel, however not everything is always how it seems.

“Hello, Brenda!” she exclaimed to the office lady as she made her way to the waiting room. She checked her phone for the last time before the appointment to see the time. She acknowledged her home screen more than she ever had that day the four bright and happy faces that glowed like a beam of sunshine through the screen and reflected back at her. It was her family, her loving husband, and two great children. The day so far had gone quite smoothly, at least for a busy family like the Grey’s. Lissette was enjoying her relaxing day off, however all good things must come to end right? Circling back to our date 2016 May 9th, this is a date that will stick in Lisette’s head like gum to a shoe. As she sat there in the chilly, stuffy and pale doctor’s office unexpectedly the doctor informed her that they would be testing her hand for ALS. It was a muscle disease that was extremely rare, and almost never got diagnosed. As she sat there in the office at precisely 2:47pm she heard the words she wished she never would have to hear. “The results have come back positive, I am so sorry.” says the doctor. In that split second Lissette Grey’s life had completely flipped a 180. She had just been diagnosed with ALS. (ALS is a muscle disease that slowly deteriorates your muscle until you are left unable to walk or talk.) Her heart dropped, her breath had cut off, she felt as though there was a never ending wave crashing over head with no way above water. Her first thoughts wander to her children, then to her husband, then to herself, I did mention that she was selfless.

Lissette walked out of the doctors office, and to say that she was overwhelmed would be an understatement. She was feeling a sort of pain that she never thought imaginable. The day where the dead end sign popped up in front of her, finally did. Although in all of her weakness and sorrow, she swallowed her tears and said to herself “I am Lissette Grey, I have ALS but that will not stop me from living my life.” Lisette was in despair, but suddenly felt a sense of relief and belonging as she said those words to herself. She felt that God was by her side, and nothing would stop her from living her life. Out of the corner of her mind she remembered the painting of the old woman, and the young woman on her wall at home.

She had finally found the true meaning of that painting. To Lissette the old woman represented sickness, fear and darkness. However, on the flip side the younger lady, who was faced away from the older lady represented her, Lisette Grey turning away from the darkness and fear of her sickness. It was a sign that from that day on she would not stop fighting until she won the battle over ALS. Lissette is the most kind, bold, generous, and not shy person I know. I can tell you this truthfully, because I am Lucy. Here I am 7 years later. Today the date is December 17, 2023, I am the daughter of Lissette Grey, and my mom has beat ALS. I have finally decided to share my mom’s story for others to hear. To spread awareness that anyone like my mom can beat sickness, knock it to the ground, and say goodbye to it forever, just like my wonderful mom did herself. 2016 May 9th, this is not a date to be forgotten but to be remembered. Because on that day doors that were once closed, had been opened and my mom experienced strength like she never had before.