a bit of normalcy

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There was conversation. There was camaraderie and a sense of connection. A piece of my day, with no illness to navigate, or arrange, or schedule around.

Just me.

A meal served as voices were ebbing and flowing like the musical notes floating through the air.

Beautiful glasses of wine, handshakes and hugs.

The banging of kitchen equipment, and a chef making his rounds, as servers carried trays of delicious food, hustling to deliver plates of deliciousness.

And I sat there, absorbing it all.

I had entered through the back door. There were two small steps before I gracefully pulled the door towards me and glided in. This time, there was no scurrying in the rain to the front entrance for handicapped accessibility.

I chose a seat close to the fireplace. In the middle of a long table in fact, with chairs crammed in as close together as possible.

I didn’t have to try to rearrange the seating for a wheelchair to fit. I simply made my way, and sat where I wanted.

How simple…and how easily I forget.

These moments are few, but so very precious.

A chance to reconnect with others, without the sideways glances.  A conversation with interruptions of jokes or inquiries of the Thanksgiving gatherings, and laughter.

A napkin in my lap, that wipes only my lips.  A glass with no need for a straw.

A quick jaunt to the bathroom, with no worry of space, or who may be in the men’s room. Is there anyone who can be on the lookout? Instead, I push the door that says, “Women” and it is a non-event.

No thoughts of illness…ALS…or caring for someone…

My brain slows. My shoulders are relaxed, and I feel my cheeks smiling, not forced, but a smile born of gratitude for this moment. I feel…..

Normal?

How silly of me…how selfish to want more of those moments.

Hugs goodbye, I walk back out into the rain.

I take my time. Twinkling lights are everywhere, as I feel drops of moisture on my upturned nose.

Being present, and appreciative for all that I have.

Sad the evening is over, but grateful for the home I get to go to.

Who needs normal anyway!?

 

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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The ending of a song…

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The music makes my body sway. The upturned faces, smiling, as they nod their head to the beat. Music fills the room, and the old, young and everyone in-between, are caught up in the moment, and their energy. Parents have their phones out, trying to video tape and take pictures in a darkly lit room. Grandparents are singing along, not bothering with capturing the moment on film, they are content to watch. Matthew and I had snuck in, half way through the show, standing along the edge of the auditorium, as there are no seats for those who have arrived late.
Finally, her choir comes on stage…
She is in the very back. ..the back of the stage where I can’t see but the tip of her head. The songs are sung back to back, with little to no break in-between. The singers are smiling, all wearing ridiculous renditions of what they think the 1970’s and 80’s styles were. I suppose a few of them aren’t too far off. Their dance moves are more for themselves than to show their skills, but they have pure joy on their faces.
I feel it.
I see it.
It engulfs me.
The audience has come to watch these children perform one last time.
I begin searching, reaching back into my memory. Was I every so carefree at that age? I can’t remember ever feeling like that, feeling so much joy? I must have, but it seems so foreign to me. I can’t remember my high school years being very happy ones. If anything, I was in such a hurry to get it over with. I often felt alone, as if I didn’t fit in. I suppose I often feel like that still.
Suddenly, I see my daughter’s face. It is lit up, blissfully radiant, as she has completely let herself fall into the rhythm and song.
When was the last time I saw her like that?
I am struck with fear and regret and shame and guilt. Every emotion comes rolling into me. She will be a senior in high school next year! But when I look at her, all I see is that sweet, innocent baby toddling down the pathway, her little pigtails, and her excitement at every new experience before her.
I can’t remember if I was ever so happy when I was her age, but I want to hold this moment for her. I want to tell her to lock it deep inside of her. To pull from it when she has lost her way. I want to hug her, and tell her that I will always love her, that I am so proud of the woman she is becoming.
I need time to slow down.
It’s going too fast! Please… I haven’t had enough time with her!
I haven’t gotten to enjoy who she is today yet!
I need to tell her how much she means to me, how much her laughter makes my heart burst with happiness and pride. I need her to know that I am harder on her, not just because she is the oldest, but because she has such naïve innocence, and such a trusting and open heart, that I am afraid that if she doesn’t learn fast enough, the world will swallow her up…and I am scared she will make choices out of fear, instead of searching for choices that suit exactly who she is, and who she will become. I simply want her prepared… because those were the choices I made. I was scared…and I was alone…and I didn’t know how wonderful the world could be…
I want her to know that I am here for her…even when she doesn’t do “life” the way I want her to. I want her to hold on to this moment..this exact feeling of freedom, and take it with her, to let it guide her on her way.

So many children, almost grown, all in the spot light, with their fresh faces and youthful innocence. I can see pieces of who they are, and who they are going to be. Some are so confident, yet others have no idea yet the strength they possess. The coming weeks, many of them will walk on stage again, this time to be handed a piece of paper that signifies the end of their childhood. They are rushing towards an unknown, and doing it with such excitement, I don’t have the heart to burst their bubble.
Each of them will fail.
They will fall again and again, and it will hurt. Most of them will stand back up, wipe the dirt off themselves, and take another step forward. The world is wide open for them, and their paths are unknown. I am excited for them… and I am scared for them. Mostly, I am scared, because this is the first time I have felt the intense sadness that this time next year, my daughter will be walking towards her own unknown.
I don’t understand. I am standing there, and I can remember being that exact age. Did I look like that? Did I have confidence, or was I simply placing a smile one my face, trying not to fall to pieces, as the world was suddenly larger than I thought, and there was no one I could fall back on when I failed.
Does my daughter smile, hiding her fears, trying to be brave…for me? Or for the world around her? Or both?
She gets that from me….because I am smiling as I sway along to the music. The song is almost over, as they begin slowly moving and bending, arms outreached, as they softly lower their voices and slow their tempo down. The song, “Stairway to Heaven” is almost over…and with it, the ending of a part of their childhood.

I forgive you…

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I forgive you.

It has taken me five years, but I can finally say these three words and truly mean them.

I forgive you.

It has been five excruciating years.  I have held on to this sadness and this rage for so long, I can’t remember what it’s like to look at you without feeling such grief.  Trust me, I have tried to move on, I have tried to let go, and still, there it is.

At first, I thought it was my fault. I thought I had done something to make you go away.  Maybe I said something? Maybe I didn’t say the right things?  I would lay awake, wondering how I could act better, do better, or say the right thing. Maybe I was too weak, and you couldn’t watch my struggles?

When he told you he was dying, you wrapped your arms around us both. We cried. We were all scared. He was dying. You wiped your tears away and looked at us both and promised you would be there for us.

You promised…

I don’t even know how it happened. It was so subtle. You were busy… Of course, you were.  You had to work, or you had obligations.  You always needed to be somewhere else.

At first, I made excuses for you. Because I knew there would be no way you would leave me to go through this alone.  I knew you cared. You were just busy.

But with every missed phone call, every text message left unanswered, you were in fact, telling me your truth.

You couldn’t handle it.

It’s okay now. I finally understand.  Every Facebook picture that showed you laughing, and smiling, each weekend out on the town.  The ski trips, the vacations…I saw them all.  I wanted to be happy for you.  I really did.  At first, I even made comments of how happy I was for you.  After all, you still needed to live your life. Sometimes, I would stare at those pictures…detesting you. You were so happy, and carefree…

You promised…

I stayed by his side.  I took him to every doctor’s appointment.  I kept notes, I kept files, and eventually, I kept sheets, organizing every medicine, every procedure and how to handle each situation, just in case you came back.  I wanted to show you what I was going through.  I needed you to see what WE were going through together. I needed you to see how overwhelming it was, the day-to-day routine of dying.

I began to hate you. Your text messages saying you would stop by with an old friend.  I would dress him and get him ready. He would pick out that shirt that he knew I couldn’t stand, the one with the holes.  But it was his favorite because YOU gave it to him. He would be so excited to see you. The excitement would slowly fade from his eyes when he realized you would be later than you said. He would wheel himself back into his bedroom, his shoulders slumped…hoping you were coming.

 

An hour…maybe two would go by before you would finally appear.  The knock on the door, and the loud jovial booming voice, the announcement that you had arrived.  Maybe you didn’t understand that we had nothing to do besides wait for you.  You would bring another friend, and it was clear you had been drinking, and having fun. Making plans to continue your carousing. We were just a quick stop on your way onto your next adventure.  And just like that, you would be gone again.  His smile would fade, and he would turn inside himself, wondering why you wouldn’t come around. I started to despise you.

You promised…

You promised I wouldn’t have to go through this alone. Where were you when he became weaker?  Where were you when I had to learn about suction machines, and oxygen rates?  Where were you when we discussed bolus feedings, and then gravity feedings?  Where were you when he was choking?  I would pound on his back and scream, as his face would turn purple.  I would be shaking, wondering if the ambulance could get there in time, or if I could help him breathe in time…Where were you?

You promised…

I would cry.  I never did that in front of him. I saved that for the times he couldn’t see me.  Standing, with the water running down my back, my hot tears matching the stream swirling through the drain. I would let myself cry, folding my arms around myself, and rock. Where were you when I need someone to wrap their arms around me and tell me I would be okay, that we would get through this? I needed someone to be there for me…

You promised…

We would try not to become too hopeful if we heard about a “breakthrough” or “new therapy.” We would try…I began loathing those who found optimism in every ALS walk, or those who rallied to raise money.  Why? What was the point?

I began hating Facebook.  Suddenly, ALS was everywhere, and everyone knew how to cure him.  Where were you when we would get article after article sent our way? Would you have demanded people stop sending snake oil cures? Would you have intervened when those well intention people mentioned traveling to Israel or South America for the latest Stem Cell Therapy? Would you have rolled your eyes with me, as we read yet another well-meaning person’s attempt to convince us he had Lymes? Disease, or it was simply a misdiagnosis?  Maybe others wanted to find some sliver of hope as well? I had lost mine long ago…

You promised…

Five years has come and gone.  Your visits were short, and few, maybe a handful of times. It must have been so uncomfortable for you to see him like that.  To see the tubes, and the skin hanging where muscles used to be. To not be able to hear his voice anymore. I know it bothered you when he lost his voice. I could see it on your face.  You kept trying to talk to him, but he could only grunt…and when his lips couldn’t contain the spit he could no longer swallow, it fell slowly from the edge of his mouth, onto the towel I always had placed under his chin.  I saw it then.  The look of panic in your eyes.

Did you finally see us? The exhaustion on both of our faces? Did you feel regret for not coming by more often, or did you just want to run away again, to escape looking at someone you claimed to love, to get away as fast as possible?  I wanted to run away too.  Did I ever tell you that?  I was scared, and I was so alone, and I had no one.

He had me though…

Because I promised him I would never leave him.

And I kept that promise…

At the funeral, when you tried to hug me, and I walked right past, I am sure it must have stung a little. I don’t think at the time I could have mustered up a fake smile. I have built my wall.  I no longer need you.  I handled everything, alone. I wonder if you regret that?

But I kept my promise.. 

Everyone told me. You know how small towns are.  They all had to make sure I understood what you were going through.  They told me how distraught you were that he was dying.  You were so sad, it was tearing you up from the inside.  They would shake their heads in pity, obviously so worried about how you would handle it.

But I have lived with a grief unlike anything you will ever understand.  I hope you never understand it.  I have also gained so much from this experience. You left, you chose to walk away when it became too difficult for you. But I chose him… I still choose him, even knowing everything I know now.  I still choose being right there by his side.  I made a promise and I kept it.  And for that, I have no regrets. I can now walk away, with my head held high, knowing I loved him and cared for him the best that I could.  I am tired. I want to close my eyes and find peace, and I cannot carry the burden of his disappointment in those who let him down. I do not want to feel grief or sadness anymore.  Not towards you, or him, or anyone else.

I forgive you…