Unlike other diseases, no test can determine if a person has or does not have ALS. You do not get answers right away like in other diseases; you do not get to get blood work and find out what is happening in your body. You do not get to walk out of one doctor’s appointment with an answer and explanation of why you have weakness, numbness, why you have been falling, or make sense of slurred speech.
It takes the average person about a year to be diagnosed with ALS, and usually, by the time they are diagnosed, their symptoms are prevalent. By the time an average person is diagnosed, they are frustrated; they are exhausted and struggle daily to explain why and how they feel. They are feeling crazy.
The summer of 2016 was different from the summers before, but it took us years to realize how different summer was for our family. Ton was the king of the pool, the man who would vacuum the pool for hours and spend the entire day with his nose covered in sunscreen while floating on a million pool noodles to establish a tan that would make the rest of us highly jealous. The summer o 2016 started with the everyday vacuuming, something Ton has done more than 100 times a summer for years at night point, but this time it ended differently. It ended with a considerable fall. I am talking about a fall that ended in a trip to the Emergency Room for a stitches-type fall. Ton fell, and not just a quick trip and cool rebound.
We thought, even at that time, how it was strange, Ton was far from clumsy, and the rules and regulations he had in place around the pool meant that there was no way he was not paying extra attention to what he was doing at that time because he was such a worrywart of this exact situation. Unfortunately, that was just the first fall. It was the first of many, and the moment that is, looking back, feels like the first time ALS told us it picked its next victim, that it found the best of the best.
December of 2016 was when my anger started. Ton came over to watch Thor attend a work holiday party. We lived an hour away, and when he arrived, he struggled to get out of the car; his leg hurt. Daughter gu lt sets in immediately for making him drive to come to watch my extremely active almost-two-year-old. I came home from lunch a few hours later, and he ran out the door. What?! I was so confused, so frustrated, and so mad.
When he gets home, I FaceTime him to ask him what happened and why he ran out; if Thor did, did I do something? I was so c fused. He was frustrated because he was in pain. His leg hurt, his back hurt, and no one understood his pain. He was mad. I was angry, and we were all starting to get mad. He was beginning to feel like he was crazy. At this point, they had been to numerous doctors, stayed two nights at a hospital, went for massages, and saw chiropractors, and everyone said something different. He left eve y appointment more confused, feeling more and more lost.
It breaks my heart to think how he must have felt back then. To know your body is starting to fail you and not have anyone listening to you, not have anyone understanding the pain, the numbness, the tingling.
We never knew what 2017 had in store for us, and honestly, I feel like even in our worst nightmares would have never planned it to end as it did with a terminal diagnosis. That year was challenging as we all tried to figure out what was happening. My mom and I spent hours on the phone in tears discussing his latest fall, the newest injury, and whether we should invest in a cane or wheelchair for a summer vacation to Indiana Beach. How do we bring things up to him? What do we say? How do we discuss the topic with someone who is already frustrated that his body is failing and does not want to hear how others are noticing? Do we ignore what we see? Do we pretend everything is okay? We knew something big was going on in our hearts, but saying it out loud meant it was real, and we were not ready for real.
My parents saw a neurologist at Rush. The doctor mentioned the possibility of ALS and set up an appointment in November that would ultimately diagnose Ton and change all our lives forever. I will never forget my mom calling me and discussing ALS symptoms, and Ton checked every box on that list. At that point in his journey, he was like a screaming billboard for all the signs she was reading to me, and while it felt good to know there was something real going on, it did not feel good to start learning more about what that entailed. There was such a wave of emotions after that phone call.
By the end of 2017, I was angrier than ever, and the worst part was there was not a person to be mad at; I was mad at a disease that decided to pick a fantastic dad and a great person who chose to take from the world. I would watch the news, read stories, look around while shopping, and wonder why not them. This dad is yelling at their kids. Why does he get to live? This dad is not even a part of his family’s life. Why not him? I was starting to get mad at everyone with a happy life because I knew I struggled so hard and hated feeling that others did not understand the pain.
Most people diagnosed with ALS are picked out of a hat without rhyme or reason. It does not matter how much you dieted, how you lived your life, how amazing of a person you were... it picked you, and your life was over. WHY TON, WHY HIM? WHY MY FAMILY?!
So, wondering how I went from there to being here writing about the disease that took my dad, helping other families that are in the same situation, and constantly being reminded about the sounds of the machines that were around during the last few months of his life… would you believe me if I told you it was because of TikTok?
I came across a video from a hospice nurse (@nursehadley) who talked with a Chaplin about handling death, especially around younger patients. His response was, “we are all put on this Earth for a purpose, and sometimes the good people can accomplish their purpose sooner than the rest of us, so instead of looking at it as a punishment, look at it as a reward for being able to do your job on Earth quickly.”
That video changed my whole outlook on everything. Ton was a fantastic dad; he had a great life, and I need not focus so much on his passing away at 64 years old and celebrating his incredible 64 years of life. I started to retell our story of ALS and how I wanted to remember it. Do I want to remember the suffering, or do I want to grow from the experience?
I started to realize that maybe just maybe, ALS was my purpose. I learned a lot during our journey with ALS, we had a lot of great experiences, but we also had a lot of struggles along the way. I was placed in the situation to help others learn from my experience. ALS is incredibly isolating. Everyone tells you, “everyone’s journey is so different,” but that does not mean you need to struggle to figure out the answer to your questions. You do not need to be alone in this journey, and If you are on an ALS journey or any journey, please know this- I am here. I made this page so that others would know they are not alone on their journey and would have someone they could reach out to help them even if their journey is so different. I might not have all the answers or know them, but I promise to try my best to find them.
We are all put on this Earth for a purpose. There is a reason we struggle through experiences, and in my heart, I believe that I worked and was pushed to my limits for my purpose. My purpose is to help others who sat where I sat, who will question what I questioned, who will feel a heartbreak that only can come with a diagnosis where a loved one dying gives you your first chance to breathe again because it is the first time in a long time that you know they are no longer suffering. That feeling alone gives families the strength to continue to have hope after you walk out of the room you said your last goodbyes in, the room you promised to continue to always have the last word in the argument in, the space you promised yourself that this was all for something in.
ALS- I am as stubborn as my father, a southside Chicago girl who will ALWAYS have the last word in an argument, and you better not think I will let down without a fight. I promised him back then, and I will promise those today that I will fight until the last word in my argument is CURE.
Here is the video from @NurseHadley that started it all.