By Taylor Carthum

When many people hear the letters ALS, they may think — isn’t that why I dumped a bucket of ice on myself in 2014? But for those who are friends and family of someone living with ALS, the acronym for this terminal disease (amyotrophic lateral sclerosis) evokes a different reaction. Right now, ALS is a death sentence. Once you are diagnosed, you are told to prepare for the inevitable loss of muscle to the point of paralysis, the loss of your voice, and eventually, the loss of your life. Most ALS patients are told by their doctors they will have approximately two to five years to live. In 1995, my dad was told the same thing.

My parents had been married less than two years when my dad was diagnosed. Of course, making a decision regarding whether or not to start a family was difficult at the time, but due to their faith and positive outlook, they chose to do so. Had they not shared the same optimism, my older brother John would not be here, and I would not be writing this today. To say that I am thankful for their decision is an understatement. My dad has had a long battle with ALS and is still fighting after 26 years.

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I am 22 years old — so ALS has always been a major part of my life. Growing up with a parent who is terminally ill is a little different. As a child, my parents did everything in their power to keep things as normal as possible for my brother and me. Unfortunately, I have very few memories of my dad when he was still able to walk because of how young I was when he lost that ability. However, I can confidently say that my childhood felt completely normal. We bickered on occasion about normal things like a normal family does. Our friends came over a lot. John and I were very involved in sports, and my parents were at every game (and even most practices) from t-ball to high school state tournaments. They went to every band concert. Every meaningful event I have had in my life, I am thankful that I have been able to look out into the crowd and see both of my parents cheering me along. 

ALS isn’t just a deadly disease – it is incurable. Most patients do not live even close to 26 years like my father has been able to. A lot of people ask — how has he managed to live for so long? If you ask me, there are a number of reasons — inner strength, keeping things as normal as possible, maintaining a positive outlook, having a fantastic support system, and fortunately, luck. Those are all things that have contributed to my dad being alive today. 

That being said, as I grew up, I didn’t know this would be the case, and every day I prayed for a cure and for him to be here the next day. When you are a family member of someone living with ALS, you are constantly grieving. I have been grieving for essentially my entire life. You grieve the loss of each thing as it happens — his ability to walk, his ability to speak, his ability to eat, our ability to travel, etc. This is while also grieving the bigger things…knowing that it is not a matter of if, but when my dad will die if a cure is not found. I struggled with the idea of this from a young age, as most would.

I remember the first-time things really felt real to me regarding my family’s situation. My dad became sick with pneumonia and was in the hospital for over a week. My neighbor (who is like family) and my aunt and cousin stayed with my brother and me while my parents were in the hospital. John was a sophomore in high school at the time, and I was in eighth grade. I remember sitting in one of my favorite teacher’s classrooms and for the first time, I absolutely lost it. My teacher had fun pillows in the corner of her classroom, and I remember sitting in that corner during her off period as I broke down. For the first time, it really hit me that there was a chance I may lose my dad.

As I mentioned, ALS has been a vast part of my day-to-day life, so I honestly do not talk about the hardships of it very often. All at once, everything set in. Luckily, my dad was able to heal from pneumonia, and things slowly became semi-normal again. This was a difficult time for our family, as we faced many changes we had not anticipated. When he came home from the hospital, he began using a feeding tube to hopefully prevent pneumonia in the future. Like always, my dad used his inner strength and mind over matter mentality to bounce back, setting small and large goals for himself. He was able to see me graduate from high school, and last May he was able to see me graduate from college. Those were huge milestones I wanted him to be there for, yet realistically I knew it may not be possible. Thankfully, here we are. 

To reiterate, I think my dad’s support system is one of the main reasons he is still here and able to fight ALS on a day-to-day basis. ALS is a lonely disease, for both the patients and caregivers, as they go through hardships those around them will rarely understand. My mom is his primary caregiver, and my brother and I help out as much as we can. Many people do not realize all of the hats that ALS caregivers wear — they are nurses, doctors, dentists, therapists, nutritionists, stylists, etc. My mom wears all of these hats on a daily basis while caring for my dad. She is a spectacular mother and wife, the backbone of our family, and none of us would be here without her.

My dad is the strongest person I know. He has overcome his physical limitations due to how strong he is mentally. Every day is a battle, and every day he fights hard. Those who know him can attest, he has certainly never lost his sense of humor. There are no adequate words to convey the grace he has displayed throughout his life since being diagnosed. He is truly thankful, and believes every day is a gift. Some days are worse than others, but he would rarely let you know. It takes a certain kind of faith, will, ambition, and strength to handle such a devastating diagnosis, and he has never faltered. 

Special thanks to Taylor Carthum and the team at The ALS Association Evergreen Chapter for allowing us to share this inspiring story. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.