I am a member of a club that is unlike any other club you have ever heard of. It is one of those exclusive types. I say this with more of a shake of my head than with excitement. I have never really belonged in a group before. I am not sure I feel any urge to be in one again. I guess I should explain why.
I don’t really fit in, I never really have. I wanted to be one of the cool kids in high school, but I always ended up just feeling like a loser. I was never the athletic type. Although, I was good at volleyball, my mother decided the one time she would parent me on any issues in my teenage years, it would be about this particular sport. She was too worried that the ball would hit me in the face while I had braces. She refused to sign the parental form saying that the high school would not be liable if something happened to me while playing sports or being transported to and from those games.
That meant that my freshman year I would not be playing any sports, and in an incredibly small town, there is only one way to stay out of trouble in high school.
Extracurricular Activities…AKA Sports
But my mother had put her foot down. That was my freshman year. So, I chose to get into trouble instead. Again, I was a bit of a loser back then.
By the time my sophomore year came along, it was too late. My English teacher, Mr. Wheeler hated me, and he also just happened to be the girls’ high school volleyball coach. I had formed a fairly big chip on my shoulder by that time and walked around as if I could care less what people thought of me and I certainly wasn’t going to go out of my way to be some sort of jock. Teenage angst was in full bloom, along with a full disregard to authority. When tryouts for volleyball were in full commencement my sophomore year, I thought I would be brilliantly sly and smoke a cigarette in the dark room! (Hey, don’t judge me. There were several of us who smoked pot in that room almost daily, and Eve Stuckey, the small and fierce teacher who I could never quite figure out what she taught, never seemed to be bothered to use her authority in those moments. It was only when I decided to smoke a cigarette, that suddenly, I was the bad kid and needed detention!) It also meant I had no chance in hell of making the volleyball team either.
Fast forward to adulthood. I have never worked a normal occupation, so I have no strong ties with any of my co-workers, in any of the states that I have lived in. Therefore, I don’t belong to any special groups of people there. Needless to say, even as an adult, I have never really belonged anywhere or to any one group of people.
I am a mother, but I could never quite fit into mommy groups. I was either too happy (AKA to ditzy) , too young, too old, or too laid back about my children climbing trees and eating dirt. I am divorced now, but I refuse to try to fit into that group. Nope, no groups, clubs or sororities for me. That was then…this is now.
When I think of those really cool clubs I would want to be a part of, I always think of sorority sisters, or fraternity brothers. Those people on campus who are impossibly sophisticated and elegant and can hold their liquor all while looking beautiful and composed. They wear their perfect little Abercrombie and Fitch sweaters, beautiful tan legs, and white teeth. By the way, this is not the kind of club that I am a part of either.
Try not to imagine the golf course types. I am not classy enough to fit in with that kind of exclusive group. No, this club has no type of dress code or prerequisite to join. You are automatically in the club once you meet one simply criteria. It is literally that easy.
I didn’t know this club even existed. Yet somehow found myself as a member. There was no initiation, no drinking goats blood or running around a campfire naked to prove my worth. Although, when I think about it, maybe I would have preferred having to prove my bravery or self-worth to be in this club. Then I would know I was in the right place.
I would have liked to have passed “the test,” and known that I would be a fitting match or been given a code name as a way of fitting in. I certainly don’t remember having a friend refer me or that someone put in a good word for me. This club is incredibly selective, and few people are allowed in. Yet, here I am.
Now I belong in a club! But not just any club. This is a type of club that has so many perks, I don’t even know where to begin. This club is unique in its membership.
I remember the day it all happened. The man walked into the room. I was so nervous. I had never seen him before, but I knew his type. He was kind and gentle and intelligent eyes. He was balding, and his glasses sat on the bridge of his nose. He was getting close to retirement, and one could almost tell he really didn’t want to be in the room with us.
I knew what he was going to say before he even said it, but I guess I was hoping for a different outcome. He set his file down on the desk. I was so focused on his shoes. As silly as that sounds, I couldn’t look him in the eye. I stared at the sole of his shoes and wondered if they were real leather or the cheap version at Target. Probably real. I glanced up, gulped air in to my lungs as quietly as possible as I squeezed Matthew’s hand, and sat up straight.
No matter how hard you try, you will never be prepared to hear this. I thought if I looked on the internet and knew all about it, it would lessen the shock.
I thought I could somehow prepare myself.
“Matthew, I’m sorry to have to tell you this, but I believe you have ALS.”
I held his hand, and in that moment, I was immediately sworn in to the exclusive club. I just didn’t know it at the time.
I am his person. I am his caregiver. Not just any caregiver. I am now in the club of people who care for someone with a terminal illness.
Not just any terminal illness, but ALS.
Amyotrophic Lateral Sclerosis.
A disease so devastating, that most people turn away with fear and trepidation when they see us coming. Apparently, we make people a tad bit uncomfortable. But it’s okay. I’ve grown used to those people who lower their eyes and walk past. We are in a club that I hope they are never invited to be in. So, they can ignore us if it makes them feel better.
It has taken me a while to wrap my head around this drastic and sudden change in my life, but now, Matthew and I are a team. Where I go, he goes. We are a unit, a duo, a set, a pair. I am his person, and he has become mine.
I belong to a Facebook support group. Again, this club is so exclusive, we even have our own online support groups. I belong to a group for caregivers who are spouses. I know what you are thinking? They have support groups online?
Yes they do!
I get the pleasure of reading messages meant only for myself and the club members. Those of us who are in this club, we are there for each other. We support each other. There is no judgement, no ridicule, only love and support.
Every day I read messages like this one:
“I know its been a while since I have posted, but I just want to tell everyone thank you for always being there for me when I needed to vent. My husband, my hero, my PAL, is at the end of his journey. He will be taking his last breath soon, and when he does, I don’t know if I feel comforted that he will no longer suffer, or if I am scared to be all alone.”
Or like this:
“I JUST WENT OUTSIDE BY MYSELF AND I CRIED, I CRIED BIG CROCODILE TEARS, WHY , OH WHY , OH WHY …….!!!”
One of the more memorable posts recently was by a man who has had ALS for 30 years! He decided he could no longer go on living. The stress of trying to find a caregiver to care for him, ways to manage money as well as his health, and maintain some semblance of a life, all by himself, with little to no help, and only his eyes left moving in his body to communicate, was simply too much. So, he went online, said his goodbyes, and had the tube in his throat he used to breathe with, removed.
He didn’t want pity, so I won’t dare give him any. The sad part was that he didn’t have a person. He had to be in the club with no partner…
Being in this club isn’t all sadness and death and tears. There are times we laugh, and funny moments we share with each other about being a caregiver. We talk about poop….a lot! We comfort each other when one of our own has had to put their PAL on the toilet for the tenth time that day, or when their oxygen mask doesn’t fit properly and it takes 20 tries to make them happy. We rejoice when there are happy moments, and we cry when we feel helpless and too far away to be of much help. We all feel lonely at times.
Of course, many of us also get the added bonus of being caregivers while working full time, and/or raising children. This club has a vast array of people, of all ages and life experiences.
And for some strange reason, this club seems to alienate all other family members. It’s as if ALS is a great way to let all other family members off the hook. They get to go on vacations, and play on the boat, and go dancing, while we, in our exclusive club, sit with our person, and we stay.
Yes, this is an exclusive club…
I pray you are never invited to join.