Chatting with my family one evening, my dad asks someone to pass him a side dish. They don’t hear him, and he is an impatient man, so he goes to grab the food himself. He uses his right hand. He tries to lift the bowl, but it slips. It falls and he knocks over his water as well. He gets upset and starts cleaning it up, trying to appear as calm but you can tell he is upset. Imagine being his child. You wish this wasn’t a common experience, you wish it was just because he’d had a bad day, but you know it’s been building. Ever since his diagnosis a year and a half ago things had been different.
He didn’t tell his kids until months after he knew, because it had already been a stressful year and he didn’t want his kids to be scared for him. But in the summer after freshman year, I was told my dad has Amyotrophic Lateral Sclerosis (ALS). Anytime I share this with someone, I get one of two responses. They either ask what ALS is or nod along like they understand even if they have no idea what I’m talking about.
In case you don’t already know, ALS is the same disease Stephen Hawking had. Essentially, it causes your motor neurons — what tells your muscles to move — to weaken and eventually die, causing your muscles to deteriorate and eventually shut down altogether, ultimately collapsing the chest muscles and can prevent breathing. It is hard to imagine that happening to someone you love.
His right arm had been becoming weaker and weaker over time, causing slight annoyances. Nothing serious, just less grip strength which makes basic tasks like opening a can or bottle more difficult. If anything, the disease has taken a more psychological and emotional toll.
Because my family is being faced with a rare disease, which we have never had to deal with before, nobody really knows how to act. My dad is stressed out and upset about the short end of the stick. My mom only wants to be there for him but she just doesn’t know how. The most important thing is to just be there, and it is not like the disease is spreading at an alarming rate. My family still has time. But that does not mean they are not still worried. That doesn’t mean my dad’s temper is not shorter than it used to be. That does not mean my mom is not constantly on top of his medication to make sure we are being as careful as possible. It just means we can breathe a little longer.
Regardless of the discomfort and unease within my family as a result of my dad’s diagnosis, we have also become closer from it. And not just my parents, but my grandparents and my aunts and uncles and cousins all have checked in with me and my parents about how we are doing. And they share with us any update they see about ALS. Being faced with your loved one having a rare, incurable disease is one of the hardest things you can do. But it can be made better by allowing yourself to talk to others who are in it with you, as long as you don’t let it isolate you. Let yourself be helped, and people will always be there to help.
