It’s what we do.

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Today is the last day of November. It is also the last day to recognize caregivers. November is the designated month to celebrate the caregivers in our lives.

And much like what it can feel like to be a caregiver, the month went by with little recognition. And that is okay.

Most of us don’t do it for the praise, or the pat on the back. We certainly can’t say we do it for the money or the fame. We do this for someone we care about, someone we love.

But, for just a moment, I want to give you a peek inside the life of a caregiver.

• We get interrupted sleep, and we seldom (if ever) sleep a full 8 hours.

• We eat our meals last, or even standing up, in a rush to move onto the next check item on our to-do list

• We juggle so many things at once, we have a hard time focusing.

• We coordinate, organize or rearrange our schedule to take care of everyone else.

• Sometimes, we want to think of ourselves, but then feel guilty for it.

• We worry…all the time.

• We sometimes feel overwhelmed at the responsibility of caring for another.

• We have a rash of emotions that spread over us quickly, and yes, sometimes they might seem irrational. Don’t worry, the feelings dissipate quickly.

• Showers become the only private time we get to ourselves…

• We are the advocate, and the voice and the warrior for the person we care for.

• We have moments of selfishness, of wanting to not to have to think of, or put another person over ourselves all the time.

• We remember how much we love the person we are caring for, and somehow, all those emotions, and the weight of what we do seems less heavy for just a while.

• We often feel alone.

• We cry in the shower because the sound of the water washes our tears and drowns out our anguish.

• We smile through the irritations, or frustrations…and yes, even through the pain.

• We can’t imagine not trying so hard.

• We live with guilt over not being enough…every.single.day.

• We know that this role we play won’t last forever.

• We hate being told it’s not about us….

• We get irritated when others try to give us advice but have no real-life experience with the same situation.

• Seeing our loved one smile can make the frustrations and hardships more bearable.

• We would still make this choice, if it means just one more day with those we love.

Remember, you will either be a caregiver or need a caregiver at some point in your life.

If you know a caregiver, show some empathy and compassion. It’s a tough job.

If you need a caregiver, show some empathy and compassion, it’s a tough job!

 Matthew Wild

ante up…

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The dealer looks to each player at his table. Shuffling, he asks for their ante.  The sound of the chips as they bounce in a pile is all the indication the dealer needs. He shuffles…eyeing each player as he slides the cards along the felt table top.

The players duck their heads low. Holding their hands over the top of their cards, they peek at what has been dealt to them.

Some of them silently groan.

Their cards don’t offer much. They will have to discard many of their cards, and hope for something better.

Other players are inwardly giddy. Their hands are set. It won’t take much to win.

Each player discards a portion of their hand.  Looking across at each other, some for the first time, they take in what each player is doing. Looking for each other to show emotion, a tick, a nervous twitch, anything to show or tell them what hand the other person has, as the dealer gracefully pulls the discarded pile away, and swiftly thumbs the new cards.

The players shift in their seats.

Some players had poor hands, but the newest cards have given them an advantage.

Some players had a fairly decent hand but would have preferred a better one.

Others, hanging their heads in shame, they throw their cards down with a heavy sigh…not willing to bet, or even try to bluff for a win.

The dealer raises his eyebrows.

Who will raise the stakes?  Who will show their “tell” and give it all away by a twinge of their mouth or a tap of a finger?

Most players throw a few chips in.

Not a word is said.

The tension is building.  Spectators have crowded around the table. Not brave enough to join in but enthralled with the daring and recklessness that these players have.

It is time for the reveal.

Who will win?

One woman holds a pair of nines.

An older gentleman, he had bet everything he had left…on his straight.

It was the young man though. The one who had been quiet and unobtrusive the entire time. He was holding a Royal Flush, yet to everyone’s surprise, he didn’t gloat. He stood, accepting the round of applause for his strategy and discipline. He then, walked away, leaving all his chips on the table.

A young woman, her eyes bright and sharp, chased after him. She yelled, “Sir, you forgot all the money you won!”

He turned back, and said, “It was never about winning. It was simply for the joy of playing.”

*******************************************************************************

Which player are you?

How are you playing the cards you have been dealt? Sure, you could hand in a few cards and hope for a better hand. But if you can’t find happiness and the thrill of living in what you have, what makes you think you can with an entirely different hand.

Can you play the game simply for the joy of living, or are you still searching for different cards to make you happy?

Something to ponder…

He waits…

 

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He waits…

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.

He waited…

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.

He waits…

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…

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…

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.

He waits…

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 waits.

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…

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 waits…

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…

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.

He waits…

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 waits…

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…

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…

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…

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 waits…

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

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 waits…

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…

And waits…

he said, she said…

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…”

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Exclusive Members Only…

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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….

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.

It didn’t.

I thought I could somehow prepare myself.

I couldn’t

“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!

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.

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Hey babe…

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Imagine….

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.

Tick..Tock….

Has it been an hour? It feels like it. You can’t take it anymore. You break.

“Hey babe…Can you roll me over?”

Damn…you lost.

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.

Oh no…

Your bladder sends a message to your brain.

Quick!

Decide….now!

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!

Damn!

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…

“Hey babe?…”