You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.
Slowly, so slowly at first, it seemed almost as if you might be imagining it all.
First, the words of condolences.
“I am so sorry you are going through this.”
“I heard about the diagnosis. I am so sorry.”
Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.
It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.
The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.
You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.
You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.
The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.
You do everything in your power not to click on that icon, you try so hard to stay away from social media.
You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.
You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.
The connection is gone.
Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.
The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.
You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.
If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.
You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.
It is the same process, every single night.
Mundane…sameness…always the same monotonous events that take place for bedtime.
- Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
- Wash his face, but only in certain spots. It makes him chilly to have his face damp.
- Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
- Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
- One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
- Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
- Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
- Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
- Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs. (The cough is weaker now. Nothing much ever comes out. I can’t tell if I should be thankful for that or not.)
- He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
- Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night. He gives me a pouty face, as I apologize…again.
- My face turns red as I pull and twist the metal contraption over towards the bed.
- Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.
Pay attention, Theresa!
- Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it. Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
- Pull the straps and the sling out from under him.
- He winces.
- Place the bandaid over the bridge of his nose. It looks raw and sore again.
- The mask goes on next. Hit the ON button. It screeches to life.
- Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
- Laying him slowly back, there is one more thing. Scratches…
- Grab the baby powder by the night stand
- Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
- Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
- Check for pressure sores. On the back of his legs and his buttocks.
I grunt again…I swear he is more square than he is round.
- Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)
I give one more hard push…
- “OWWW, I think you did something to my back!”
I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent
- “I don’t think my legs work anymore!”
- Then he giggles.
- Rolling my eyes when I realize he was trying to be funny.
- “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
- “I’ll be right here!” He yells.
- “Don’t move!” I yell back.
- I shake my head with a little grin.
- It is always the same thing…every single night.
There is not much more he can do these days, but to wait.
He knew the disease would slowly take his ability to move. A few days after his diagnosis, every website that explained the disease in gruesome detail explained to him what to expect. He would steadily become a prisoner in his own body. There would be no cure, no treatment to slow this process down, and no one with answers as to why this was happening.
The days would pass, as they often do. Lives go on, people come in and out of his world, but still…he waits.
He is locked inside what was once a six-foot two-inch frame, of broad shoulders and the strongest of legs…legs that had easily ran up mountains, swam in oceans, and walked with confidence through any door. His fingers have curled, the tendons and bones are all that are left to show hands that had once caressed his wife’s body. His arms lay at his side. He no longer fights the urge to raise his arm to scratch an itch.
Instead, he calls out for someone to come wipe his eyes, to reposition certain body parts, to adjust and to maneuver.
And he waits…
His legs spasm, not in pain, but in the normal progression of the disease. He glances down at his feet.
There is nothing normal about this.
His toes are beginning to resemble his fingers as they too, curl inward. The disease has ravaged his feet. He stares at his toes, willing them to wiggle, to move, anything to prove that he hasn’t lost that small little ability.
Nothing. No movement.
He glances up.
Rolling his head from side to side, he feels the heaviness that is slowly taking hold. He knows what is coming.
Soon, the weight of his head will be too much.
He stares out the window.
There is a bustle of noise coming from the kitchen. Pots and pans clanking, the scraping of spoons as they are stirred by someone else. Someone else who can move easily from one task to another.
The familiar pang of sadness at his loss begins to creep into his consciousness. He closes his eyes.
He has been waiting. Waiting and wondering when the time comes that the smells that come from the kitchen become intolerable. He wonders how long he will have to wait before he can no longer chew the food that someone else places into his mouth. His jaw is already sore. It is getting harder to speak, and to chew.
Someone calls out his name.
The footsteps grow louder. The door opens.
He has been waiting.
Waiting for someone to come and wheel the metal arm closer to the bed. To hook each loop into the bar, and effortlessly pick him up.
He glances at the reflection in the mirror.
Legs dangling, a large sling wrapped around his body, as he hangs helplessly from the air. He looks away. He knows what he looks like. He is naked, in the most vulnerable way a man can be. There is no covering him. He is long past embarrassment, but the vision of seeing his reflection staring back at him and being incapable of covering his most private of areas, is difficult to see, even for him.
Someone pushes and grunts and pulls to maneuver his body back into his wheelchair.
He waits patiently for the metal arm to slowly place him into a sitting position in his wheelchair. A blanket has been laid gently on his lap, his teeth are brushed, and his pills have been swallowed. One of the pills catches on the way down, causing him to cough and choke.
Quickly, someone grabs the small machine and hose that is never far from reach. The machine is meant to simulate a person coughing.
He waits and tries not to feel claustrophobic as the mask is tightly pressed against his mouth and nose. He couldn’t protest if he wanted to. The machine forces air so hard into his mouth and lungs, his cheeks swell against the mask. A click of the machine, and the reverse happens, as the air is pulled, almost violently from his body. It is the only way his body can cough. Over and over again, this procedure is done, the machine straining, as it forces air in and back out again.
His airway clear again, he can breathe.
The momentary adrenaline rush at the lack of air moving fluidly through his body slows as his heartbeat returns to normal once more.
He is wheeled out into the kitchen. Someone has prepared dinner. His meal looks less than palatable. Soft foods so as not to choke again. He sighs…He waits while someone sits down next to him, grabbing a fork and begin to gracefully place the food onto the prongs and then lift it to his mouth. He opens his mouth…chews the food, moving it around his mouth, a bit of anxiety and hope that he can swallow this bite without choking again. Small bites. Slowly….he swallows.
He needs a drink. Watching, he leans forward with his head, lips outstretched towards the glass.
The effort is exhausting. He shakes his head. His jaw is tired. The water dribbles down his chin.
He waits for someone to grab a napkin and wipe up the droplets hanging, threatening to spill beside the bits of food he had been unable to hold in his mouth, that are now laying in his lap. He waits for everyone around the table to finish their meal.
He maneuvers back into the bedroom to watch television. Someone else needs to get ready for the day. The children are all running, a cluster of excitement as they get ready to leave and go about their busy lives. He positions himself in front of the screen.
He waits for everyone to say “goodbye” as they run out the door. A quick kiss to the forehead, and the door slams behind them. He listens to the stillness of the house.
The caregiver walks in. She swiftly picks up the remote, points it towards the wall, and clicks on the tiny buttons to the channels he prefers. The television has become his only outlet and escape from this disease. It is all he can do to pass his time now. He can lose himself in make believe for just a while. For just a moment, he doesn’t have to think about what he needs, what others do for him. He wants to go out. He feels trapped…trapped inside the house, and inside his body.
He watches the hours pass. Eight more hours before someone else comes to tell him about their day at work or running errands. Nine more hours before the kids arrive. Ten more hours and everyone will gather for another meal around the table. Twelve more hours and he can go back to bed.
He waits for a text message, an email, a phone call. Anything that shows that he is still participating in his life. He seldom hears from those who had once been so close to him. He wonders if they think about him. He understands that the world kept turning, he just isn’t turning with it.
He waits for visitors that never come. He wants to ask them to stop by, to sit and tell him about all the new experiences they are having. He supposes they feel guilty. He knows he makes them uncomfortable now. If, and when an old friend pops in for a visit, it is always the same. Big smiles to hide the awkwardness as they lean in for a hug. They complement him on his inspirational strength, but the smile falters. They fumble for words, for stories, and things to talk about. They feel guilty for still living, as they sit across someone who has so little time left. They glance at their watch. They need to go soon, but they promise to come again soon…But they won’t, and they both know it.
He waits for conversation…but the caregiver is busy taking care of him. The caregiver is not there for companionship. They sit out in the living room, staring at their phone. Too busy counting the hours before their shift is over so they can leave. He understands…he is counting down for their shift to be over as well.
He has to use the restroom again. He calls out for help. He waits until someone is finished doing their chores before they stomp in to help…again. He tries to hold it and tries desperately not to lose his patience. He hates asking for help, but there is no choice. He wonders what is taking so long this time.
He waits for hands to touch him, but the only caress comes in their efforts to be efficient. He misses reaching his arms around a loved one for a hug. He misses breathing in their scent.
He doesn’t want to ask for help again. It feels as if it is constant. The need for something, the constant requests for drinks, food, adjustments. He feels like a burden. Time is ticking by, and his requests grow more frequent with every passing day.
He wonders how his life came to this moment. The limbo of wanting to live but waiting to die.
He looks out the window…
He said, “Wow! It’s nice to meet you!”
She said, “hello….”
He said, “We have a mutual friend.”
She said, “She invited me to come listen to the music with her.”
He said, “I am glad you could make it”
She said, “Thank you. I don’t get out often.”
He said, “Can I buy you a drink?”
She said, “no thank you”
He said, “Its been months, how are you?”
She said, “The summer went by too fast”
He said, “Can I buy you a drink this time?”
She said, “Sure, I would love a water!”
He said, “It’s loud in here”.
She said, “WHAT?”
He said, “Do you like live music?”
She said, “Yes, It’s my favorite!”
He said, “You came with her again?”
She said, “I’m her designated driver.”
He said, “Here is your water.”
She said, “Would you dance with me?”
He said, “yes”
She said, “You can DANCE!”
He said, “Wow, so can you!”
He said, “Will I see you again?”
She said, “Maybe…”
He said, “I haven’t seen you in weeks, where have you been?”
She said, “My life is complicated….
He said, “What do you do?”
She said, “I go to school”
He said, “would you like to go dancing?”
She said, “ok”
He said, “Are you seeing anyone?”
She said, “No…and I want to keep it that way!”
He said, “Why?”
She said, “I am recently separated.”
He said, “I was married for a long time too”
She said, “I have children”
He said, “I bet they are great!”
She said, “You aren’t my type”
He said, “I know, but can we keep dancing?”
She said, “Yes, I would like that…”
He said, “We have been dancing every month for almost a year now!”
She said, “I just want to be friends…”
He said, “I know…”
She said, “I’m not ready for a relationship.”
He said, “I understand. I am happy just being your friend.”
She said, “Thank you for being such a great friend to me”
He said, “Who are you here with?
She said, “I am here on a date tonight”
He said, “Do you like him?
She said, “I don’t know yet”
He said, “That guy shouldn’t be flirting with your friends”
She said, “I guess he wasn’t that into me”
He said, “He’s an idiot”
She said, “Thank you”
He said, “You deserve better!”
She said, “I agree..”
He said, “I like spending time with you”
She said, “I need to take things really slow”
He said, “Of course”
She said, “I think you are looking for more than I am ready to give.”
He said, “I have all the time in the world.”
She said, “What’s wrong with your fingers?”
He said, “Nothing, I am sure it’s nothing”
She said, “I am not ready”
He said, “I’ll wait.”
She said, “Please go to the doctor.”
He said, “Go to Cabo with me!”
She said, “I am a single mother, I can’t go to Mexico!”
He said, “It would mean so much to me!”
She said, “Will you go to the doctor?”
He said, “Of course, as soon as we get back!”
She said, “Its beautiful here!”
He said, “Thank you for coming with me.”
She said, “What did the doctor say?”
He said, “He wants to run some tests…”
She said, “It is going to be alright…”
He said, “I have ALS”
She said, “I know”
He said, “I’m scared.”
She said, “Me too”
He said, “Maybe you should leave?”
She said, “I promise I will stay”
He said, “Will you spend the rest of my life with me?”
She said, “Yes”
He said, “My legs are getting weaker…”
She said, “We need to find a new home”
He said, “I want to marry you and dance with you on our wedding day.”
She said, “There isn’t much time.”
He said, “I am sorry we are rushing things.”
She said, “I am sorry that the last time we danced was on our wedding day…”
He said, “I don’t want to use the wheelchair.”
She said, “It’s there when you are ready…”
He said, “I can’t lift my arms anymore.”
She said, “It’s okay, I am right here…”
He said, “Don’t worry, we are going to be alright…”
She said, “I don’t know how to ask for help”
He said, “Neither do I”
She said, “I don’t know if I can do this alone.”
He said, “I feel like a burden.”
She said, “You are not a burden.”
He said, “Happy Anniversary!”
She said, “It’s been 3 years?”
He said, “Its going by too fast”
She said, “I feel so alone”
He said, “So do I…“
She said, “I never get to go out or do anything anymore”
He said, “Neither do I”
She said, “I didn’t think it would be this hard”
He said, “Neither did I”
She said, “I miss being held.”
He said, “I miss touching you.”
She said, “Where did everybody go?
He said, “I don’t think they can handle this.”
She said, “I am so angry.”
He said, “I know.”
She said, “I had different expectations.”
He said, “I think it’s just you and I.”
She said, “You are my person.”
He said, “Thank God I have you.”
She said, “We still have so much to be thankful for…”
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.