It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
It was breezy. The smell of the salty air teased her nose, as the wind moved through the hair that kept escaping from her clip, whipping her hair in disarray. She kept trying to secure her hair away from her face. Ready to give up on any hope of getting her hair under control, she quickly grasped her hair atop her head, pinning it on top. With one last pat, she began observing her clothes.
A black t-shirt and shorts that were ragged and well worn is all she had. Still, she wiped her hands over her shirt, as if to iron out the wrinkles that the moisture from the sea had created.
She glanced down at her toes, wiggling in the sand. She lifted her toes upwards, trying to allow the cool water to rush in under them. When she lifted her feet up, the sand filled in, only to squish outward when she rooted her feet deeper into the earth. The foam from the ocean lapped around her ankles as each wave slowly rocked in around her. She noticed how deep the sand felt. It was coarse, and she could feel a tug from the ocean as one wave retreated, before steeling herself against the small waves that were edging first close, then slowly retreating back where they had came from.
Her head turned, looking over her shoulders. Each direction, she could see people standing along the beach. The sun was in her eyes, and she had to squint to see even those who were closest to her, standing along the sandy shoreline. They were all individuals, standing solitarily along the shore. She wanted to ask why but noticed that she herself was all alone. Her gaze lengthened further along the beach, noticing friends and family she recognized.
Her arm raised, waving frantically, as she smiled and called out to them. Faster, her arm, outstretched, pumped from side to side. Still, no one glanced her way. She cupped her hands to her mouth and shouted. Laughing, she bent over, her arms wrapping around her waist, giggling that she was alone, yet could see so many she knew and loved, but they could neither see nor hear her.
The smile on her face froze, as she realized that although there were so many she recognized and knew, some she even loved, she was all alone on this small area of beach and sand. Her head still turning from one shoulder, towards the other, she saw individuals, much like herself, standing and bracing against the waves. Some were standing back up after having been knocked down by waves. Others appeared to be bracing for waves that seemed to engulf them. She stood with bated breath, wondering how these waves were not hitting them all along the shoreline.
“Strange, I don’t see any waves near me.”
Again, the woman glanced out towards the horizon. The darkening clouds were billowing and building upon each other. She looked down at her feet, as another wave rocked against her legs. This one forced her to take a step back, as she hadn’t been braced or ready for it. She was still standing, and for that she was thankful.
She turned to walk away, but her legs wouldn’t carry her. Her heart raced. She realized that there was no turning away. With some sort of invisible guidance, her body was held tightly facing forward.
She tried lifting her legs against the heavy sand, but each step only pulled her feet deeper and deeper into the wet, rough beach. She saw the water pull away, and as her eyes raised in question, the wave hit her, knocking her to the ground.
Surprised at its strength and intensity, she looked for others to come help, but no one seemed to notice. She stood up, this time, bruised and bit battered at the strength of the wave.
Again, she tried calling out to those around her for help. Why couldn’t they see her struggling? Why did they leave her all alone?
Each person seemed to be fighting their own waves, some higher and some more gentle, only lapping at their ankles. Again, she glanced out towards the horizon.
If a wave was going to come towards her again, this time she would be prepared.
She bent her knees, leaning heavily on her right leg, as she stepped her left foot backwards. She would be ready this time. Chin raised, shoulders back, she was ready for the water as it pulled further away, adding height to an already powerful wave coming towards her.
The sun forcing her to squint, she tried leaning in, as the wave came roaring towards her. Her focus was intent, looking solely at what lay before her and this time, she refused to look beside her. She knew she needed to brace against what was headed her way.
The wind in her face, blowing tendrils of hair across her forehead, stilled for just a moment. The mist moistened her face and arms, as she had closed her eyes, too scared to see what was coming towards her.
It was shocking how hard it hit. The air from her lungs was forced out on impact. The wave forcing her backwards. The water, now over her head swirled above her, and she kicked, lungs burning, as she tried to reach the surface for air.
She was sure her lungs would burst from the pressure building, and still she kicked harder and harder, hoping the surface was found just above her fingertips.
When she thought she could no longer hold on, the wave subsided, and she found herself once again, standing…toes wiggling in the sand.
Again, she glanced up. The sun, that had just warmed her skin only moments before was over shadowed by dark clouds that were moving in.
Her eyes perused the horizon. The clouds moved slowly towards her, ominously warning her. She wanted to run away, but she knew it was futile. This storm was meant for her, and only her, and it was headed directly for her.
She watched the speed of the clouds moving. She tried to gauge how fast it was approaching, and she was also trying to prepare. She knew there would be no one to help her, she had long stopped expecting to find someone to lean on. She had no choice but to face what was coming, alone.
She could dig her heels in. She could brace herself as best as possible, and plan for whatever may come…but in the end, it was up to her to decide if she would find the strength to beat this storm.
I would like to take just a moment and explain this short story. This story has many metaphors, and I hoped they were easily discovered. The inability to run away. The waves are problems that we must all face alone on our journey through life. Often, when we think we have support and help, when we look around, we find that, we are all alone.
This story is not necessarily a story about my hopes and dreams, it is something that I struggle with more and more as time marches on. I know what is in my future. I know it looks bleak and sometimes terrifying. I also am fully aware that this journey is mine, and mine alone.
I can only hope to make it through to the other side, without drowning from the sorrow of what life has chosen to throw in my path. Maybe, although I cannot turn away from my path set before me, or the storm that is clearly coming my way, I can at least prepare for it, brace for it. Really, that is all any of us can do on this journey called “life.”
I am a member of a club that is unlike any other club you have ever heard of. It is one of those exclusive types. I say this with more of a shake of my head than with excitement. I have never really belonged in a group before. I am not sure I feel any urge to be in one again. I guess I should explain why.
I don’t really fit in, I never really have. I wanted to be one of the cool kids in high school, but I always ended up just feeling like a loser. I was never the athletic type. Although, I was good at volleyball, my mother decided the one time she would parent me on any issues in my teenage years, it would be about this particular sport. She was too worried that the ball would hit me in the face while I had braces. She refused to sign the parental form saying that the high school would not be liable if something happened to me while playing sports or being transported to and from those games.
That meant that my freshman year I would not be playing any sports, and in an incredibly small town, there is only one way to stay out of trouble in high school.
Extracurricular Activities…AKA Sports
But my mother had put her foot down. That was my freshman year. So, I chose to get into trouble instead. Again, I was a bit of a loser back then.
By the time my sophomore year came along, it was too late. My English teacher, Mr. Wheeler hated me, and he also just happened to be the girls’ high school volleyball coach. I had formed a fairly big chip on my shoulder by that time and walked around as if I could care less what people thought of me and I certainly wasn’t going to go out of my way to be some sort of jock. Teenage angst was in full bloom, along with a full disregard to authority. When tryouts for volleyball were in full commencement my sophomore year, I thought I would be brilliantly sly and smoke a cigarette in the dark room! (Hey, don’t judge me. There were several of us who smoked pot in that room almost daily, and Eve Stuckey, the small and fierce teacher who I could never quite figure out what she taught, never seemed to be bothered to use her authority in those moments. It was only when I decided to smoke a cigarette, that suddenly, I was the bad kid and needed detention!) It also meant I had no chance in hell of making the volleyball team either.
Fast forward to adulthood. I have never worked a normal occupation, so I have no strong ties with any of my co-workers, in any of the states that I have lived in. Therefore, I don’t belong to any special groups of people there. Needless to say, even as an adult, I have never really belonged anywhere or to any one group of people.
I am a mother, but I could never quite fit into mommy groups. I was either too happy (AKA to ditzy) , too young, too old, or too laid back about my children climbing trees and eating dirt. I am divorced now, but I refuse to try to fit into that group. Nope, no groups, clubs or sororities for me. That was then…this is now.
When I think of those really cool clubs I would want to be a part of, I always think of sorority sisters, or fraternity brothers. Those people on campus who are impossibly sophisticated and elegant and can hold their liquor all while looking beautiful and composed. They wear their perfect little Abercrombie and Fitch sweaters, beautiful tan legs, and white teeth. By the way, this is not the kind of club that I am a part of either.
Try not to imagine the golf course types. I am not classy enough to fit in with that kind of exclusive group. No, this club has no type of dress code or prerequisite to join. You are automatically in the club once you meet one simply criteria. It is literally that easy.
I didn’t know this club even existed. Yet somehow found myself as a member. There was no initiation, no drinking goats blood or running around a campfire naked to prove my worth. Although, when I think about it, maybe I would have preferred having to prove my bravery or self-worth to be in this club. Then I would know I was in the right place.
I would have liked to have passed “the test,” and known that I would be a fitting match or been given a code name as a way of fitting in. I certainly don’t remember having a friend refer me or that someone put in a good word for me. This club is incredibly selective, and few people are allowed in. Yet, here I am.
Now I belong in a club! But not just any club. This is a type of club that has so many perks, I don’t even know where to begin. This club is unique in its membership.
I remember the day it all happened. The man walked into the room. I was so nervous. I had never seen him before, but I knew his type. He was kind and gentle and intelligent eyes. He was balding, and his glasses sat on the bridge of his nose. He was getting close to retirement, and one could almost tell he really didn’t want to be in the room with us.
I knew what he was going to say before he even said it, but I guess I was hoping for a different outcome. He set his file down on the desk. I was so focused on his shoes. As silly as that sounds, I couldn’t look him in the eye. I stared at the sole of his shoes and wondered if they were real leather or the cheap version at Target. Probably real. I glanced up, gulped air in to my lungs as quietly as possible as I squeezed Matthew’s hand, and sat up straight.
No matter how hard you try, you will never be prepared to hear this. I thought if I looked on the internet and knew all about it, it would lessen the shock.
I thought I could somehow prepare myself.
“Matthew, I’m sorry to have to tell you this, but I believe you have ALS.”
I held his hand, and in that moment, I was immediately sworn in to the exclusive club. I just didn’t know it at the time.
I am his person. I am his caregiver. Not just any caregiver. I am now in the club of people who care for someone with a terminal illness.
Not just any terminal illness, but ALS.
Amyotrophic Lateral Sclerosis.
A disease so devastating, that most people turn away with fear and trepidation when they see us coming. Apparently, we make people a tad bit uncomfortable. But it’s okay. I’ve grown used to those people who lower their eyes and walk past. We are in a club that I hope they are never invited to be in. So, they can ignore us if it makes them feel better.
It has taken me a while to wrap my head around this drastic and sudden change in my life, but now, Matthew and I are a team. Where I go, he goes. We are a unit, a duo, a set, a pair. I am his person, and he has become mine.
I belong to a Facebook support group. Again, this club is so exclusive, we even have our own online support groups. I belong to a group for caregivers who are spouses. I know what you are thinking? They have support groups online?
Yes they do!
I get the pleasure of reading messages meant only for myself and the club members. Those of us who are in this club, we are there for each other. We support each other. There is no judgement, no ridicule, only love and support.
Every day I read messages like this one:
“I know its been a while since I have posted, but I just want to tell everyone thank you for always being there for me when I needed to vent. My husband, my hero, my PAL, is at the end of his journey. He will be taking his last breath soon, and when he does, I don’t know if I feel comforted that he will no longer suffer, or if I am scared to be all alone.”
Or like this:
“I JUST WENT OUTSIDE BY MYSELF AND I CRIED, I CRIED BIG CROCODILE TEARS, WHY , OH WHY , OH WHY …….!!!”
One of the more memorable posts recently was by a man who has had ALS for 30 years! He decided he could no longer go on living. The stress of trying to find a caregiver to care for him, ways to manage money as well as his health, and maintain some semblance of a life, all by himself, with little to no help, and only his eyes left moving in his body to communicate, was simply too much. So, he went online, said his goodbyes, and had the tube in his throat he used to breathe with, removed.
He didn’t want pity, so I won’t dare give him any. The sad part was that he didn’t have a person. He had to be in the club with no partner…
Being in this club isn’t all sadness and death and tears. There are times we laugh, and funny moments we share with each other about being a caregiver. We talk about poop….a lot! We comfort each other when one of our own has had to put their PAL on the toilet for the tenth time that day, or when their oxygen mask doesn’t fit properly and it takes 20 tries to make them happy. We rejoice when there are happy moments, and we cry when we feel helpless and too far away to be of much help. We all feel lonely at times.
Of course, many of us also get the added bonus of being caregivers while working full time, and/or raising children. This club has a vast array of people, of all ages and life experiences.
And for some strange reason, this club seems to alienate all other family members. It’s as if ALS is a great way to let all other family members off the hook. They get to go on vacations, and play on the boat, and go dancing, while we, in our exclusive club, sit with our person, and we stay.
Yes, this is an exclusive club…
I pray you are never invited to join.
It was an ordinary day as most days are. Blue skies, a few clouds floating wistfully along their path, in no hurry on their journey. A busy weekday in a small, idealic Wyoming community. The house sits on the edge of the street on the outskirts of town. The newest sub-division of neat homes, edging ever closer against corn fields.
A little girl yells in frustration, trying to give chase to the boys in her home, but her big brother pushes her aside. He is too big to play with his “baby sister.” She sits down, grabs her doll and pouts. A young mother, peering through the kitchen cabinets, realizes that the ingredients she needs for dinner are not there. She sighs, knowing she will have to run to the store if she is going to feed these boys soon. She glances towards the ceiling, wondering yet again why she thought she could be Scout Leader to six young boys. Then she remembered. It was because of the look in her son’s eyes when he pleaded with her. There would be no Boy Scouts without a Leader. The mother, already frazzled, added one more responsibility to her long list of daily chores. Den Mother to six high energy nine-year old boys.
She walks into the living room, trying to organize the troop. Asking each child to sit with legs crossed, she explains that she will have to leave, but if they are good, she will be sure to make a yummy dessert to go with her famous fried chicken. Glancing at the clock, her anxiety is heightened as she knows she is running out of time.
Her step-son, Mitch, a teenager hiding in his room will have to be the make-shift baby sitter while she runs to the grocery store. Yelling that she will be right back, she turns the knob on the television, and says a silent prayer that she can return quickly enough to get the dinner done and the boys working on their next badge assignment before her husband gets home to a mess. Grabbing her purse, she motions for her baby girl to follow her.
A small girl, four years old, her blonde hair bobbing with each skip she takes, follows her mother out the front door. The slam of the screen door makes the little girl jump a little and she looks behind her. Through the screen door, she sees her brother and his friends, all in their crisp blue shirts and yellow ties, laughing and running through the house. She wants to stay and play with them, but she knows her brother doesn’t want her around.
She turns back towards her mother and jumps down the concrete step onto the pathway along the house. She pauses, and looks down at the edge of the driveway, noticing the beautiful yellow blooms that she hadn’t noticed the day before. She bends down, quickly grasping at each flower. Her doll Raggedy Ann, a trusted companion, tucked safely in her arm, as her mother scolds her for not loading up into the car quickly enough.
“Hurry up Theresa, I am already late!”
She glances up, wondering why her mother was frowning at her. The small child thinks it is perfectly normal to be picking the dandelions to present to her mother as a beautiful bouquet of flowers. Normally her mother always smiles and smells the flowers she picks for her. This time, her face looks upset. She looks down at her hand and notices she has bunched all the weeds into her small hand. Her bouquet doesn’t seem as pretty as the last time she picked flowers. Still grasping tightly to the dandelions, she quickly plucks more grass than yellow blossom.
Glancing up, the little girl see that her mother still has that frown, as she swings the door to the car open, arm outstretched and motioning for her daughter to get in the car. The young girl jumps up, a trail of grass, leaves and weeds behind her as she runs towards the open door. She holds onto the steering wheel as she kneels along the seat. Her little legs are moving as quickly as possible, knees scooting as fast as they will go. She knows better than to put her shoes on the seat. She doesn’t want to make her mama more cross at her than she already is. She finally gets to the passenger seat and smacks the silver knob down with her palm, locking her door.
Her mother gets in, turning the key in the ignition. The little girl tucks her doll into her left arm as her right hand grabs the door handle. The car still has that brand-new smell, and her little feet swing up and down, too short to reach the floorboard and too short to reach the glovebox. Her mother moves the stick by the steering wheel down, her body pivoting to glance behind her, her face still scrunched up in worry. Her foot pushes down on the gas pedal and the car is jerked quickly in reverse.
It happens so suddenly, both mother and daughter are unaware of what is about to happen and there is no time to plan or even anticipate what can only be described as a “freak accident.”. As the car is moving quickly backwards, the passenger door swings open, and the little girl, whose hand is still holding tightly to the handle, is yanked out. The car continues, the mother not having enough time to react to what has happened in that split second, is still pressing her foot into the gas pedal.
As the little girl is falling out of the car, the front passenger tire is continuing its path, and she has been yanked out head first by the car door. The little girl is pitched uncontrollably out and down, as the front tire continues its backward momentum. Her legs are split, one still dangling upwards, as the tire runs over the other, and sucks the little girl up, her body unable to prepare for what happens next. Like the ragdoll that had been in her arm only seconds before, her body is thrown carelessly up and over and then under the tire.
The mother slams on the brakes, puts the car in park and jumps out of the car, quickly looking under the car. She screams as she sees her little girl’s body contorted around the front tire, and the weight of the car on her little body. The mother foolishly tries lifting the car at first, but it doesn’t move. On all fours, she peers under the car again, feeling helpless. She can see her daughters head, and there is no movement. She hears the smallest of whispers.
“I can’t breathe.”
As fast as she jumps out of the car, she quickly jumps back in, shoving the stick into drive and moves forward, hoping she made the right decision in going forward instead of backward. She swings the door open, running around the front of the car. Her son is standing at the edge of the house, his eyes huge, watching what is happening.
The boy turns to run into the house, his legs pumping almost as fast as his heart. The mother comes around the front of the car, she sees blood smeared along the driveway, and sprawled out is her baby girl. Her body freezes, glancing around not knowing what to do. She wills her legs to move closer towards her daughter’s body, scared of what she will see. Her sobs caught in her throat, as she sees her little girl’s body isn’t moving, but she gasps when she sees her daughter’s face. One half of her face is gushing blood, her ear hanging down by her neck, as the blood is soaking the ground beneath her.
The little girl’s eyes are open, and she is gasping in shock. There are no cries or whimpers, just blue eyes gazing at her mother. Suddenly, her mother is inches from her face, tears dropping onto her. Time has slowed down, and the little girl can’t understand what is happening to her. It is as if everything is in slow motion, and people are all around her, motioning their hands wildly in the air, or yelling.
She can see that her mother is screaming and crying.
“Why is mommy so upset?” the little girl wonders.
Then her friend, Police Officer Fred is there. He looks worried too. Then her grandmother is there.
“Why is everyone crying?” the little girl wonders.
She hears her grandmother yelling at her mother. Grandma never yells. Fred is holding onto her mother, and then even more people are gathering around her. An ambulance crew begins carefully lifting the little girl onto the gurney. The boys are on the front door step, not moving and the son is sitting on the stairs, his arms wrapped around his body, as he rocks back and forth. He is chewing his bottom lip, trying not to cry in front of his friends. His little sister looked like she was going to die. His grandpa walked over to him, and ushered him inside, along with the other boys, all staring and not knowing what to do.
“The helicopter is ready. Don’t worry, she is in good hands.” The EMT turned to leave.
“Wait, I am going too.” Panic in her voice, she notices that they are taking her daughter away from her.
“No, ma’am. I am sorry, but you can’t. We need to leave right now, and there isn’t enough room in the helicopter for you too. You will have to drive and meet us there.”
The mother glances around her, confused. She doesn’t know what to do. Her eyes look down. Raggedy Ann is laying on the driveway. A bouquet of dandelions that appears to have been bunched into a ball lays next to the doll. The ambulance drives away.
The young mother crumbles to the ground.
Billings, Montana –
The young mother doesn’t remember much of the drive. What normally takes an hour to drive to the small city, took much less than that, but it still felt like a lifetime for her. Her husband was driving, and the cars following them were family, all needing to lend support and help in any way they could. She glances at her husband. He showed no emotion except the ticking of his jaw. He doesn’t speak to her, and she says nothing to him. She just kept staring, willing the car to go faster. Looking into her hands, she held the little doll. It was her only lifeline to her daughter. Tears continue to stream down her face as images of her daughter laying there on the ground continue to haunt her.
Her baby was all alone.
Before the car can even come to a complete stop, the young mother opens the door. Running inside the ER, she frantically looks for anyone for help.
A nurse at the desk softly assures her that the little girl is sedated and stable. The x-rays were still being done, so all they could do was wait. The young mother takes a seat. Her husband chooses to stand and refuses to look at her. His brothers arrive, their wives comfort the young mother, and the brothers take vigil. Soft voices are spoken in assurance. Of course the little girl would be alright. The little girl had been life flighted to one of the best hospitals. The doctors are some of the best in the area.
The waiting room was filled with smoke and foot tapping. Nerves stretched taut, and about to break. At last, the doctor walks in, eyes searching for the parents.
“Mr. and Mrs. Whitlock?”
Quietly, the parents approach the doctor, as family step back respectively.
His eyes hold sadness. This is one of the hardest parts of practicing medicine. Telling family there is no hope.
“I am sorry, but your daughter is very badly injured.” He looks towards the father, knowing that if he looks into the mother’s eyes, he will be unable to finish the diagnosis. “The x-rays show that her spine was crushed at the base of her neck. Several of her vertebrae are crushed. We will have to clean out the gravel from her cheekbone and reattach her ear. I don’t foresee her having any hearing problems at this time, as the damage to her face is cosmetic.” The doctor took a deep breathe, needing to pause before he continued.
“Doctor, what about her spine? What happens now?” The father asked, his eyes looking willing at the doctor, silently pleading for him to fix his little girl.
“I am sorry, but your daughter will be a paraplegic. She will not be able to move from her shoulders down, ever again.”
The young mother screams.
An accident, by the very definition of the word, implies that it is unintentional. An event that happens that is unexpected, unforeseen, unplanned for, and otherwise surprising. This moment, this accident is forever engrained in a young girl’s memory. The images have grown hazy, and time has softened the edges.
The little girl remembers laying in the hospital bed, trying to move her legs, her arms, but her brain won’t make her legs work. She remembers her mother crying, her father looking angry. She feels sad for making him angry again. Her uncles try to make her laugh, but her face hurts and she is sleepy. She can’t seem to keep her eyes open.
Days go by. She can’t remember how many, but her brain always feels fuzzy. She thinks she dreams a lot. She remembers one dream. The doctor coming into the room, and his face looks excited. He is holding a file.
“You have to see this!” His face is full of excitement. “I don’t understand how or why… The x-rays! They are different!” He opens the file folder and pulls out two sets of x-rays.
“Look here. This is the first x-ray. You can clearly see the spine at the thoracic region, # 1,2 and 3 are clearly crushed.”
The doctor sets it down and pulls another x-ray from the folder. Holding up the black and white film, he raises it, hands shaking.
“This is the x-ray from this morning.” He pauses, glancing at the parents as they try to make sense of what they are seeing.
“Don’t you see? Her spine is perfectly normal.”
They can only stare, grabbing each one, comparing.
“I don’t know how, or why. But your daughter is healed.”
The leaves are weighed down. Droplets covering every space available. Each leaf is hanging low, and the branches even lower. Somehow, it seems fitting. As if the trees are also feeling every emotion that I am feeling. The sky dark and gloomy, the ground soaked. Today is full of sadness and the earth feels it too.
I have taken a hiatus from drinking, but I wonder if maybe this is a mistake. The only time I can cry is if I have had a few, and now, all the emotions that I feel are just sitting in my chest. I want to get them out. I am squinting my eyes, trying to cry, but nothing comes bubbling out of me.
Another glance outside, and the rain is pouring out of the sky. Where are my tears? Why won’t they come? I feel like a good cry would do me good, but it won’t show through my face. I guess I could get up. The thought drains me. Matthew is laying beside me, the whisper of breath that is forced through a machine, along tubing and through a clear mask attached to his face. I take comfort in the sound, even though I hate the machine and what it means.
This week has been so full of emotion, I just want it to end. But my daydreaming and memories won’t subside. Eyes that are full of sadness and despair. Stories that are full of pain. Moments that are so intense, I wonder why I paid to sit there and listen to them.
I thought going to sleep would rid me of all this emotion, but it hasn’t. Instead, I wake up stiff and unyielding. The memories are flooding through me.
I went to a therapist. I suppose it was time. He listens, he tells even more stories. I am not sure I can listen to anymore stories, but I do. I sit with a smile on my face, listening to him as he tries to help me find the lesson in all of this. I nod my head, but inside, the emotions are still piling up. Surely, I will break and begin to cry, right? I don’t need wine to break down my defenses, do I?
Then I remember.
I have spent a lifetime acting. I have settled, I have smiled, and I have done what is expected. Of course I need something to break down my walls and let the emotions flood through. Instead, I do not reach for the bottle. There has to be a way to feel without alcohol or drugs… I am a con-jumbled mess today. Nothing seems to make sense.
The anti-depressants are doing their job, a little too well. They keep me from expressing too much. All the emotion is in there, but there is something keeping me from letting them all out.
I remember what the therapist said yesterday. He says I am, “Accepting.”
This stops me.
A new word is added to a list of adjectives to describe me.
I have never heard this word as a description of me before.
He is right..but he is also so very wrong.
I am accepting…of everyone I meet. I am full of understanding, and compassion because I know that there is always a “why.” I know that if I search hard enough, I will see “why” someone behaves the way they do. Often, they are heartbreaking reasons. So I will accept each and every person who crosses my path, because it is not my place to judge.
But he is also wrong..
I am not accepting of myself.
I cannot accept these emotions inside of me. I am angry that they are there and I cannot get them to go away. I cannot push them down, and I cannot get them out. They just build upon each other, and it is tiring, and it is heavy.
I cannot accept or forgive myself. Every memory suddenly feels as if I am the leaf, and those droplets are weighing on me, and I am bowing from the pressure of it all.
I do not know how to find acceptance in who I am.
Instead of pondering this..I will lay here, looking out at the dark sky, full of rain drops. I will look at the leaves and the branches and imagine myself hanging low from the weight of all of these thoughts that have nowhere to go.
I wonder if I can find acceptance in all of this…
There are significant moments when I am reminded why the foundation that Matthew Wild and I began shortly after his diagnosis, means so much to me.
Why we fight to not only build awareness around a devastating disease, but to help families navigate the ups and downs of the financial and emotional toll this disease can have on everyone affected by it.
Yesterday, towards the end of a 3-day immersion class I was in on campus, we stopped for a quick break. I glanced down at my phone, of course clicking on Facebook to see posts and pictures. It was then that I read a post.
I know I have written often enough of how hard it is to see loved ones posting that their PAL has passed, or is close to the end. I read about their struggles, how tired and helpless they feel as they care for their loved one.
But this post..this one was different. I was reminded, once again, that there are those who battle ALS with no family or friends to help alleviate their daily struggles. Or, they lack resources and tools to help them as they deteriorate. Their battle is much greater than I could ever fathom as they also battle loneliness, and hardships…and they do it alone.
I cannot imagine having to make this decision, and it only strengthened my resolve to work harder. No one should have to go through this alone… Every single person deserves love,dignity and independence.
This is the decision that one man came to yesterday. While I have only known him through Facebook, never having met him…up until this point, his posts were always full of hope and strength and determination to take what life had thrown at him, and to face it with courage and grit….
I have reached a decision that will disappoint many and I am sorry. The quality of my life has deteriorated to a point that no matter how hard I try I cannot find thankfulness in this life. Living independently with ALS is the only way for me. Combine independence with a budget then the trouble begins. The quality of life now as a result from cancer reconstruction surgery and the constant struggle to find decent help I have decided to go off life support.
The thought of thirty more years of struggle like the last three decades is a thought beyond comprehension. I am beyond exhausted and have been for years. You know doing the same thing repeatedly and expecting a different outcome is insanity. I’ve proved I’m nuts, but it was the best I could do with the tools I had.
I wondered if my strength would ever give out. It has and I’m surprised it lasted so long. I am happy to say after all of this my heart is still full of love. I love everyone I’m just too tired to do this anymore. I gave it my all. I hope I helped more people than I have hurt.
I want to thank all the wonderful family and friends that have been there for me through the years. I wouldn’t dare try to name everyone it would take years. Thank you so much from the depths of my heart. You brought light into this living hell.
I am in the process of making arrangements to do this. I don’t like drama I will just get it done. I’ll see y’all on the other side. I love you!
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.
ALS Fact of the Day~
Today may be significant for some of you. Or the hours may have ticked by just like any another day. Maybe you didn’t give much thought to today, but you have been making plans now that summer is coming, and you are looking forward to the things that include BBQ’s, fireworks, sunshine and water!
It is the first of May!
And just like every year on this day: It is the national day to kick off the campaign for ALS Awareness…
This is also the third time I will be reminded of this date’s significance.
I’ll be honest…I will more than likely do what I do every time it is ALS Awareness Month. I will make resolutions to do something to bring attention to the disease Every.Single.Day! And just like every year, I will make it about a week or so before I have petered out, and my attention has been lost.
Please don’t take that personally. I do care about ALS, and all the families this disease has affected. But I also care about other things as well.
So this month, I will once again attempt to write something every day…(knowing myself well enough to know that the chances of me following through with that resolution is about as good as me saying that I will exercise every day, no matter what! Or the times I tell myself I will quit drinking wine…only to start again at least a couple months later…or the time I told myself that I would always fold the laundry immediately after I remove it from the dryer…yeah! I know! It’s never going to happen!)
Here is what I can do:
Today, I will write a little something about ALS. Tomorrow, maybe I will, and maybe I won’t. I’m not going to think past these two days…But today, I can give you a few facts about what I have learned along the way…
Today’s fun little facts ~
Fact~ You have no control over this disease until you choose to control your thinking about the disease.
Fact~ This disease affects people all over the world. It does not discriminate. It can affect a woman in her sixties, as well as a young boy who is ten years old. At this moment in time, there is absolutely no control over who will be affected or how to stop it.
Fact~ You will never be ready for all the challenges that are thrown at you, either as the caregiver, or as the patient.
Fact~ As soon as you accept that you have no control over the disease, it will stop controlling you…
Fact~ I have been incredibly blessed these last three years. I know this. I am beyond grateful for how much easier my life is compared to so many others. I try incredibly hard to give back as much as I can in other areas, because I understand how lucky I am. Gratitude is practiced…every day…One person is not born with the ability to be grateful all the time versus another person who can never find it.
Practice Gratitude…every day!
Fact~ No matter how good or bad your situation is, you can still find things to be grateful for. You are still in control of how you respond. (Don’t believe me? See the fact listed above!)
Fact~ What you say, how you say it and how often you say it WILL affect your thinking. Maybe that is why I try my hardest to never say “F*ck ALS”
I mean I say a lot of swear words…daily but saying that only feeds the anger and rage at something that is out of my control. Why keep repeating and reminding myself… I get it! I live it..
Fact~ Many things suck in this life. So what! What are YOU going to do about it? Are you going to swear and get angry at the things you have no control over? Sure..get angry for a while. Kick, scream, cry…fall to the ground, punch a pillow! Do what ever you have to do in the moment…. But don’t stay there….Don’t keep that anger inside of you…
Fact~ You cannot get through this alone…so don’t try.
Fact~ There are always options. No matter how bad it gets, how horrible and rock bottom you think you have hit….there are ALWAYS options!
Don’t believe me?
Read the book, Man’s Search for Meaning by Viktor Frankl.
There are always options…even if the only option is your attitude about having no options…that is still an option! 🙂