For many of us, among the most difficult parts of the “Stay at Home” orders we face because of the COVID-19 crisis is the isolation. We miss going out wherever we want, doing whatever we want, seeing whoever we want to see. It is unusual, and uncomfortable, and more than a few of us are going more than a little stir crazy because of it.
But for people with ALS, much of this is all too familiar. The isolation and “self-quarantine” we are trying to deal with is every day for them. A member of our staff recently saw a post on Facebook from one of the families we serve that brought this home to us in very personal way. We reached out to them and here, in the words of Summer Nolen, is the story of her father Kent and their family:
What a year it has been. Just think that when the clock struck midnight and we rung in 2020, probably none of us knew the word “Coronavirus.” And yet here we are in April, and it seems like everyone in the world is losing their mind. How can they make us stay home and not be able to go anywhere? How will we make it? Many of us are out of jobs and income. How will we care for our families?
Days, weeks, even months without hanging with our friends, grabbing dinner, or having some social drinks. Now, imagine living that same life for 19 years. The better part of 19 years trapped inside of your own body, by ALS. Unable to walk, talk or eat. Unable to easily perform (and sometimes not at all) the normal day-to-day activities we do without thinking, like breathing.
Imagine having an itch you can’t scratch, or that craving for a chocolate milk shake but you’re not only unable to move or walk, you can’t drive to get one, and you can’t eat anything by mouth. Think about how badly you want to gather this Easter Sunday and go to church with your family, and then maybe all join together for an Easter lunch. Now imagine not being able to do that, not just in COVID-19 quarantine, but not ever. That is the cruel reality for my dad, Kent Nolen. For the greater part of the last 19 years, 60 minutes an hour, 24 hours a day, 7 days a week, 365 days a year, he’s been held captive within his own body by ALS. Within the first few years losing the ability to walk, then losing the ability to drive, then losing the ability to care for himself, and lastly losing his ability to eat and breathe on his own. For him, this is living with ALS every day, and it will be his life even after we are all once again allowed to go back to “normal.”
We don’t realize how much we are actually capable of doing until we meet someone like my dad who no longer can do anything for himself. It makes you stop and think about just how many things we do daily that we take for granted.
And also, people with ALS are stuck in the “high risk” category, so while you might not be personally worried about catching COVID-19, people with ALS have to be worried every minute of every day about it.
So think about that the next time you get frustrated about the current situation, and you want to ignore those “stay at home” orders. Our situation is temporary…My dad’s isn’t. When all blows over, he will still be stuck in his own isolation. Quite literally, self-quarantined.
Thank you Summer for sharing your dad’s story. It is a reminder that while we all have challenges now, the challenges for people with ALS have not gone away. You can learn more about what our Chapter is doing to meet the needs of people with ALS during this challenging time, and how you can help, here. Please stay safe, everyone.