Updated: Mar 16
Unlike other diseases there is not one test that can determine if a person has or does not have ALS. 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 the slurred speech. You do not get to have answers right away like other diseases, you do not get to get blood work and find out right away what is happening in your body.
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, they are struggling daily to explain why and how they are feeling, they are feeling crazy.
The summer of 2016 was different than summers before, but it took us years to realize how different that summer truly was for our family. Ton was the king of the pool, the man who would vacuum the pool for hours, 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 extremely jealous. Summer of 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 huge fall. Ton fell and not just quick trip and cool rebound. I am talking about a fall that ended in a trip to the Emergency Room for stitches type of fall.
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 playing extra attention with what he was doing at that time because he was such a worry wart of this exact situation. Unfortunately, that was just the first fall. It was the first of many and the moment that 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 so I could attend a work holiday party. We lived an hour away and the moment he arrived he struggled to get out of the car, his leg hurt. Daughter guilt sets in immediately for making him drive to come watch my extremely active almost two-year-old. I came home from lunch a few hours later and he basically ran out the door. What?! I was so confused, so frustrated, so mad.
By the time he gets home I FaceTime him to ask him what happened, why did he run out, did Thor do something, did I do something? I was so confused. He was frustrated because he was in pain. His leg hurt, his back hurt and no one was understanding his pain. He was mad, I was mad and were all starting to get mad. He was starting to feel like he was crazy. At this point he had been to numerous doctors, stayed two nights at a hospital, went for massages, saw chiropractors and everyone said something different. He left every appointment more confused, feeling more and more lost.
Looking back, 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 the way it did with a terminal diagnosis. That year was hard on all of us as we all tried to figure out what was going on. My mom and I spent hours on the phone in tears discussing his latest fall, the newest injury, 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 as well? Do we ignore what we see? Do we pretend everything is okay? In our hearts we knew something big was going on but saying it out loud meant it was real and we were not ready for real.
My parents saw a neurologist at Rush where the doctor mentioned the possibility of ALS and set up the appointment in November that would ultimately diagnose Ton and change all our lives forever. I will never forget my mom calling me and discussing the symptoms of ALS and Ton checked every box on that list. At that point in his journey, he was like a screaming billboard for all the symptoms that 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 I have ever been before and the worst part was there was not a person to be mad at, I was mad at a disease that decided to pick an amazing dad and great person to decide 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 there 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 that had a happy life because I knew I was struggling so hard inside and hated feeling that others did not understand the pain.
Majority of people diagnosed with ALS are just picked out of a hat, no 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, to helping other families that are in the same situation, 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 had a conversation with a Chaplin on how to handle death especially around younger patients and his response was, “we are all put on this Earth for a purpose and sometimes the really good people are able to accomplish their purpose sooner than the rest of us so instead of looking at it like a punishment, look at it like a reward for being able to do your job on Earth quickly”.
That video changed my whole outlook on everything. Ton was an amazing dad; he had an amazing life and I need to not focus so much on him passing away at 64 years old and celebrate the fact that he had an amazing 64 years of life. I started to retell myself our story of ALS and how I want to remember it, do I want to remember the suffering or do I want to grow from the experience.
I started to have the realization 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 feel that I was placed in the situation to help others learn from my experience. ALS is extremely isolating, everyone tells you “everyone’s journey is so different” but that does not mean that you need to struggle to figure out that 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 at all, please know this- I am here. I made this page so that others would know they are not alone on their journey, that they would have someone they could reach out to that could help them even if their journey is so different. I might not have all the answers, I might not know it all, but I can promise you that I will try my best to find them.
We are all put on this Earth for a purpose, there is a reason that we struggle through experiences and in my heart, I believe that I struggled, that I 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 room 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 that 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..