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 wonder how they do it?
I wonder how doctors can look people in the eye, and tell them that they are going to die…
The doctor sits down and explains to the patient that they have ALS….and then what?
I know in the ALS community, there are teams of doctors and specialists and therapists who rotate into each room, greeting the newly diagnosed patient and their family member. Every doctor, specialist and therapist have a small window of time to discuss and answer questions, as well as take various measurements with various tools and devices.
These are referred to as an ALS Clinic.
These people are sent into the room to determine how much a patient has progressed.
These clinics are all over the country, the world in fact. And each one does exactly the same thing.
They diagnose…and then they chart the progression of the deadly disease known as Amyotrophic Lateral Sclerosis.
How do they cope with this loss repeatedly?
They meet a family, they get to know them, and they watch, helplessly from the side lines.
How do they find the strength to keep watching?
And they do this over and over with each patient they see. They may not know when, but they know, just like a freight train that is headed straight towards them, and there is no way to jump out of the way, that death is headed for each of these patients.
Today, Matthew and I learned that we have lost another friend.
And just like that, he is gone.
I can picture his face perfectly. His eyes, and how they twinkled. His smile, and the way he grinned like a little boy with such a mischievous look in them. I knew he loved his family. I knew he was a proud man, with an iron will and a stubborn streak t least a mile long.
I knew that he had progressed considerably since the last time I saw him.
I hadn’t seen him in months, but I knew.
Of course, I knew.
It was clear that he was struggling when I had seen him last. His shoulders were rising with each breath. He hated the chair he was sitting in. He visibly looked uncomfortable. He hated being sick…
And from the short time I knew him, it was clear he was stubborn and would handle this disease his way. I could relate to the frustration his wife felt about this. It is hard to let someone else take the reins of their own life and yet , as the caregiver, be somewhat responsible for their health and welfare.
Matthew drinks Coke. A lot of Coke..
He still chews tobacco…although now he has moved onto Copenhagen pouches to avoid the choking hazard of the tobacco grains going down the wrong way and causing pneumonia. But he still chews…
He eats too much fast food, and junk food, and he doesn’t care because he knows one day soon, there is a possibility that he will not be able to eat. So, my stubborn husband does as much as he wants to do, and I let him.
The man who passed was stubborn too…
He hated anything that made him weak, and he especially hated all the machines he relied on, and the medicines…and how weak he was becoming.
I am taking a huge liberty writing this, as I hadn’t gone over to visit him in so long.
I will forever feel sorry about that, and yet I hope they understood.
Matthew and I are on our own path of this destructive train wreck waiting to happen. I know it’s coming, and so does he. Yet, we are still able to find happy moments and to experience joy and laughter. I need to keep my own happy for as long as possible. I am grasping with everything I have on some days…
The years keep going by, and the people we meet have come into our lives, and many have passed. Sometimes suddenly, and others, not so surprisingly.
And I am detaching from it all…
This doesn’t feel intentional, it’s a sort of survival mechanism for my heart.
I meet these families, and I fall in love with them. And then I watch powerlessly as they struggle to find their new normal, and I am helpless to stop what is happening to them. And I become a bit angrier at each loss.
There are more people who have been diagnosed in our area recently.
Some have reached out to me, and this time, my wall is built. I am a little less willing to rush into their worlds and learn all about them. I am a little less willing to fall in love with their families, and then witness their anguish. I hide behind the walls of our foundation. I stick to the facts. I offer advice, but I pause before opening myself more.
Matthew is much the same.
This afternoon, he hid behind his screen. He hid behind whatever would take his mind off what is happening.
The freight train is coming…
We can hear it.
We can’t see it yet. We still have time. But the dread of what is coming is always there. It never quite goes away…It is dark and heavy, and we can do nothing but accept the path that we are on, and the journey we have been led to walk.
I wish his family peace.
I hope they find comfort in their memories of their time together…
And I hope they understand why I pulled away. Not because I wanted to, but because I needed to.
I am not always as strong as I like to think I am.
We are all cowards from time to time…
Imagine laying on the bed, a small blanket covering you to your waist. You try to pull it up, but it is too heavy. Your hands can’t grasp the edge and pull. You feel your arms getting colder. You lay there, forcing your eyes shut, trying to ignore the chill.
The blanket is warm against your legs, but it feels so far away. Such a simple thing, to reach down and pull it up, and to snuggle back into the pillow.
Finally, you can’t take it anymore.
“Hey babe….Can you cover me up?”
They reach over, pulling the thin, electric blanket up, and the soft snoring can be heard again within minutes.
Soon, you wake again. This time, as you are laying on your side, your hip begins to ache. You need to move to your back. You know that you have already woken the person beside you several times and its only been a couple hours. You stare at the back of their head, see their body move ever so slightly with each breathe. How long can you hold out?
Sleep is not coming. Instead, your mind wanders. Back to past memories. Like a black and white sitcom, you play them over and over. Remembering the smiles, and hugs from family members. The holidays. All those firsts. Then it turns to the sadder times. You remember scenes from each moment as if they were on repeat. The angry words thrown at loved ones, in anger and in pride. Suddenly those moments that seemed so important, now seem trivial.
Your hip is throbbing.
Still, you refuse to move. You try to make a deal with yourself. You won’t call out until they move first. Remember that game? The one where you would stare and not blink first? Doing anything and everything not to blink or look away. You always won that game! You can do it again.
Whoever moves first, loses. Ignore the pain. Ignore the tingling and sharp needle like pains running down into your leg. You can win. Just don’t think about it.
Has it been an hour? It feels like it. You can’t take it anymore. You break.
“Hey babe…Can you roll me over?”
They groan slightly, moving so slow. Please hurry…
Finally, they sit up, legs go over the edge of the bed, they stand. Why are they moving so slow? Don’t they know how long you have laid there, in excruciating pain? Don’t they understand how long you held out?
The floor creaks, as their feet shuffle.
Finally, they come to the other side, taking the blanket off of you, and grab onto your legs and shoulders, to roll you.
Your bladder sends a message to your brain.
Do you have to pee or not? Because they are up, and if you do and they lay down, you are going to have to hold it…
They turn to go lay back down.
“Hey babe? I need to pee.”
You hear the feet stop. You can tell they are irritated. They turn, mumbling. You don’t ask. You can tell its not something you want to hear anyway. The blanket gets whipped off, a little less gently this time. They grab your leg and shoulder again, this time rolling you the opposite way, and if they aren’t steady, you’ll fall to the floor like a bag of potatoes. Something cold touches you. It’s the cold plastic as they press the urinal against you.
Damn. It doesn’t just happen like that!
You need a few minutes.
Finally, right when you are sure their patience can’t possibly hold on much longer, you feel your bladder cooperate.
Several more minutes later, your pillow has been readjusted, your legs and arms are covered, and they lay down again.
You immediately feel guilty. You know they have to get up soon. You lay there thinking about how much is happening for the day. You know each day the work load gets heavier and heavier. Your guilt builds. How much more can they handle? How much more sleep deprivation and stress can they take.
You can feel your skin itch. You try to move your arm, but your hands aren’t strong enough and it only makes it worse.
You lay perfectly still, trying to breathe through it. Trying to think of another childhood game where you can’t move, you think of freeze tag. Don’t move or you are out…
The back of your head itches. That one is easy enough. You shake your head from side to side, digging your head into the pillow.
Sweet relief for just a moment!
Now the mask over your face has moved from your damn spastic head shaking. Before you can decide if you should call for help, the alarm sounds next to you.
You look to your side, just in time to see them jump out of bed, running over. Their face full of worry.
“Sorry babe, the mask needs adjusted..”
Their eyes go from worry to irritation.
They reach over, pushing the off button. Fiddling with the straps, they get it placed back on, and before they turn, you ask if you can lay on your side again.
With the finesse of a WWE wrestler, they quickly roll you to your side. Adjusting your legs, and blankets and pillows, they stomp back to their side of the bed.
You lay still, trying not to make any more noise than you have to.
You wonder what time it is? How much longer before you can have them get you up and put you in your wheelchair? At least then, you can move a bit more. You hate being in bed.
You hear them snoring again.
How can they do that? How do they fall asleep so quickly?
Then you remember. It’s been years of this. Every night. Some nights are better than others, but every night, you wake them up.
Your mind wonders to Chinese torture practices. Is this how they do it? Wake a person up every twenty minutes? Can a person go crazy?
How long can a person go without sleep? You wonder if you are going crazy?
You giggle, because this isn’t funny, but it is either laugh or cry.
Then the giggle turns to a groan. Okay, this definitely isn’t so funny anymore.
Your hip starts hurting again. You wait. You really try to. Until you can’t handle it anymore…