slowly, they all just disappeared…

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You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.

Slowly, so slowly at first, it seemed almost as if you might be imagining it all.

First, the words of condolences.

“I am so sorry you are going through this.”

“I heard about the diagnosis. I am so sorry.”

Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.

It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.

The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.

You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.

You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.

The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.

You do everything in your power not to click on that icon, you try so hard to stay away from social media.

You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.

You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.

The connection is gone.

Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.

The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.

You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.

If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.

You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.

Nightly routines…

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It is the same process, every single night.

Mundane…sameness…always the same monotonous events that take place for bedtime.

  • Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
  • Wash his face, but only in certain spots. It makes him chilly to have his face damp.
  • Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
  • Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
  • One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
  • Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
  • Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
  • Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
  • Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs.  (The cough is weaker now. Nothing much ever comes out.  I can’t tell if I should be thankful for that or not.)
  • He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
  • Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night.  He gives me a pouty face, as I apologize…again.
  • My face turns red as I pull and twist the metal contraption over towards the bed.
  • Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.

Pay attention, Theresa!

  • Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it.  Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
  • Pull the straps and the sling out from under him.
  • He winces.
  • Place the bandaid over the bridge of his nose. It looks raw and sore again.
  • The mask goes on next. Hit the ON button. It screeches to life.
  • Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
  • Laying him slowly back, there is one more thing. Scratches…
  • Grab the baby powder by the night stand
  • Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
  • Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
  • Check for pressure sores. On the back of his legs and his buttocks.

I grunt again…I swear he is more square than he is round.

  • Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)

I give one more hard push…

  • “OWWW, I think you did something to my back!”

I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent

  • “I don’t think my legs work anymore!”
  • Then he giggles.
  • Rolling my eyes when I realize he was trying to be funny.
  • “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
  • “I’ll be right here!” He yells.
  • “Don’t move!” I yell back.
  • I shake my head with a little grin.
  • It is always the same thing…every single night.

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…

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…

When Santa came to visit…

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He looked like Santa Claus. That’s what I thought the first time I met him. Even Matthew said his blue eyes were twinkling and his cheeks were a little bit rosy. Ironically, he had no children of his own. I bet he has little children following him where ever he goes, wondering if he is the real thing.

That was over six months ago now.

He walked into our home, with his wife following slowly behind.
She was tiny, small-boned and looked as if a strong gust of wind would blow her over at any time. Her clothes were hanging loosely off her frame.
They seemed like one of those couples who were mismatched in every way. She walked slowly in, keeping her head down. Her shoulder length hair dull, and her face looked gaunt. “She looks angry,” I thought to myself. I can’t be sure, but I don’t think it was her idea to come over. He seemed to take up the entire entryway with his broad shoulders and loud voice booming down the hallway. I invite them to sit down for coffee.

They had that deer-in-the-headlight kind of look.

She had been diagnosed with Bulbar-Onset ALS.

That means she was losing her ability to speak. Although she looked perfectly fine, the disease was affecting her facial region. That means, she could walk her massive dogs around the block, and garden all day long if she wanted to. She could still care for herself, brush her own teeth, dress herself or cook a meal, but she was losing the ability to talk. The ability to chew, or swallow foods and liquids. The ability to have facial expressions.
The few times she tried talking to us, her words slurred to an almost incomprehensible moan. The effort to make her mouth form each word was drawn out…so slow… it was obviously irritating to her.
I remember Santa kept leaning in. His eyebrows drawn together, intently focused. He was trying to watch my mouth as I spoke. He was legally deaf. I tried not to groan in despair as he said this to us, a bit louder than normal, which makes sense, since he was reading my lips.
This was an awful combination and would become the biggest challenge for them.
Our ability to communicate was difficult, but we muddled through, and I took down some notes for them to remember for later. Advice about foundations and agencies to contact sooner, rather than later.
They left our home, and I don’t think we were able to lift their spirits or help them feel any better about the situation. Normally, I like to think that either Matthew or I can help one or the other feel a bit less scared. Or at least a bit less alone.

This couple…I don’t think that we helped them at all.

The man with the twinkling eyes has stayed in contact with me, though now it is only through email.
He often writes about his wife, her care and thoughts about future needs. I offer suggestions or contact information for people I think may be willing to help. I don’t think he has bothered with any of it. Hospice is involved now. She has given up. He seems lost.

I am sure she gave up as soon as she was diagnosed with ALS.
Only, he hadn’t recognized it right away.
Her anger and bitterness at the thought of dying this way has left him exhausted. It now makes me wonder if his cheery smile was all a façade. A safe place for her to lay her burdens down.
I know it must be draining him.
I meet many couples who are on the same path as Matthew and I. The diagnosis is the same, but the journey itself poses different obstacles for each person.
I find comfort in knowledge.
When I knew Matthew had ALS, I immediately researched anything and everything I could. I read every case study, medical journal and book I could find. I asked questions, sometimes repeatedly. I wanted to be prepared.
Nothing prepared me for the reality. But understanding some of it has been how I have managed to cope as the reality of ALS for us has been more gradually than for others.
Matthew was the opposite of me.
He waited to learn. He did not search for the answers until it was time to know. He was proactive in ordering every device and item needed to make my care for him easier, but he asked nothing about what he would be facing until it was time to face it.
I assume, as with any disease, one must navigate the path that they feel is right for them.
I try hard to respect those decisions.
After all, who am I to judge?
Yet, how can I stand back and witness the decisions people are making, knowing it is going to make their life more stressful. Often, waiting too long can mean the difference in how the patient will respond to every day ups and downs, and it can lead to depression and anger for everyone involved.
Instead of their last months filled with family and memories of being able to say what needs to be said, it turns into a nightmare of one bad decision followed by another, which in turn means one emergency followed by another. It is my worst fear and one that I will do everything to avoid. I can’t make others think this way so instead I try to gently point out better options if I see them struggling.

“Please submit a grant request for a ramp or a bathroom remodel.”
“Have you considered a support group?”
“Please reach out to as many people as possible for help.”

I guess I am trying to help ease a part of their burden, but what do you do when they will not take your advice?
What do you do when you see that they are losing faith, and the will to fight?

They have refused help.
They have refused support.
They have refused the doctor’s advice.

I am angry at the helplessness of how I feel right now….
It is just one more constant reminder of how little control I have in any of this. I am forced to not only be buckled into this ride for the duration, but also to watch helplessly as other victims crash along the way.
I can’t reach the wheel they are steering to move them out of harms way, and I am stuck to sit back in a ride that I can only vaguely remember jumping on.
And all I can do is wonder, “What is the point of all of this?”

 Matthew Wild

That week ended with a bang…

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I really want to tell you the rest of the week went without any more issues, buuuut I can’t. In fact, I am pretty sure there is a conspiracy against me. If it can go wrong, can be forgotten or needs to be addressed immediately, then it is going to happen to me…ALL AT ONCE!

After the smoke alarm fiasco, the next day was spent just trying to put out fires…figuratively of course.

That evening was spent with a couple of girlfriends, divvying up some pre-made meals, and some much needed conversations and giggling!

Thankfully, one of those friends happens to be taller than I am, and she helped throw several new smoke alarms in so I wouldn’t have to lug a ladder upstairs. And there was also that pesky problem of my plumbing issue that she helped me get taken care of, lickety split! (four hands are better than two when needing to push two pipes together and tighten the connector together all at the same time!)

I am happy to report the following evening, there was only one more smoke alarm that came to the end of its life….at 3 am…and in my stupor of trying to jump out of bed and figure out which one it was, I ran around the house, listening for the…

Beep beep!

Only to find the death had actually occurred in my own bedroom.

Hey, don’t laugh! I was sleep deprived! But I ripped it from the ceiling and would mourn its loss at another time. (To date, they are all now dead…I have replaced 5 of them, there are 4 more. The following deaths happened during the daytime and with little to no fanfare!)

However, Friday morning was spent something like this:
Cell phone rings…its 7:30 am..
“Mommy!!! I hit the curb and my tire popped!”

FML…

First, the teenager only calls me “mommy” when she needs something. Second, she claims to have been swatting a bug out of her face when she veered over and smacked the edge of the curb. I find this hard to believe. Third, the teenager has zero patience and was in an absolute dramatic tizzy over this…She was two blocks from school.

Okay, well, I can run over, grab a tire and get it replaced. That should only set me back maybe an hour?

I tell her to just leave her car in the parking lot where she had pulled over, and I would run over to get it taken care of as soon as the caregiver arrived.
Friend meets me there and pulls tire off so I can run it to the tire shop.

Tire shop says:

“You have to buy at least 2 tires, because we can’t sell you just one.”

Of course you can’t…I mean, why make this simple, right?

“Ok, I guess I will take two tires.”

He says, “I need the other tire, so we can mount them.”

I sort of stare at him blankly for a moment. This may be obvious to some, but I am still trying to process the fact that I am being forced to buy TWO tires against my will. I am a bit aggravated by all of this, so it took me a while to process that he would, indeed, need the other tire. I imagine telling him where he can go mount them, but that would be rude…Instead, I run back, where friend takes the other tire off..Oh, and the spare he had put on…yeah, that went flat in three minutes…
So, I take the other tire PLUS the spare to get fixed.

By the way, that will be an hour wait.

This tire fiasco took an additional four hours out of my life that I will never get back….

And that was the rest of my week in a nut shell. Not to mention I had the honor of teaching the incredibly impatient teenager how to put the tires back ON! After all, it’s her car. She should know how to do these things too!

I won’t go into the fiasco of soccer games all weekend that resulted in mass chaos because of the detrimental effects of having the wrong colored socks, or shorts, or (GASP!) the wrong number on the jersey..but that is a story for another time!

I will say this though…
I keep visualizing a moment… at some point in my life… when I am on a giant stage, with my crown perched a bit crooked on my head, accepting my “Mom of the Year Award” for my patience, and perseverance of handling teenage dramatics, soccer clothing mishaps, smoke alarms that end their lives at the worst times possible, juggling everyone else’s wants and needs,as well as all the ALS trials and tribulations, AS WELL AS all of my own drama. I can see it now…my children all cheering wildly for me, nodding their heads and shouting how awesome it was growing up with me as their mother…

I think I’ll just keep that one to myself…its gonna be a long time before ever happens…

 Matthew Wild

 

Beep Beep!

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1:45 am

Beep beep!

“What was that?”

I lay there for a second, not really knowing what he is talking about. Matthew hasn’t slept all night, and I can’t figure out if he is just mumbling or needs something.

Beep beep!

I hear it too…

I sigh…the familiar sound of the dead battery in a smoke alarm. I wait, secretly hoping it might stop, but thirty seconds later…

Beep beep!

I decide I better take care of it before it wakes everyone in the house.

I groan…I am perfectly comfortable and all snuggled in. I don’t want to get up. For a moment, I just want someone else to take care of this. Matthew has already woken me at least 4 times in the last 3 hours. I didn’t want to get up. But as is the case in every situation in my life, there really isn’t anyone who is going to take care of this for me. I swing my legs over the bed and make my way up the stairs to where that offense noise is coming from.

There is no choice, I turn on the light in my daughter’s room to see what I am doing. She groans, and glares at me. I look around her room and moan. It is absolutely disgusting! Clothes, shoes, and makeup are strewn around the room. And old coffee cups, and mass quantities of old wrappers, and containers of junk food that had been snuck upstairs and kept hidden in a teenager’s room. I tell her she seriously needs to clean her room, even though I am sure this probably isn’t the time to be having this discussion.

I am fumbling with the smoke detector, trying to find where the battery is hidden. I rip the face off.

Nope!

That wasn’t it. I finally flip it over and see the small slot that needs a screw driver to pry it open. I settle for a dirty fork from the teenager’s bedroom.

I pull the battery out.

Satisfied that it will shut up and everyone can go back to sleep, I go to step off the chair.

Beep beep!

I quickly glance up.

Seriously?

I step back up on the chair. The mutilated smoke alarm is mocking me.

I understand just enough electrical to think I am proficient. I am proven drastically wrong in this moment. I pull out the small attachment of black and red wires still providing electricity to the dreaded alarm.

BIG MISTAKE!

FIRE! FIRE! FIRE!

The entire alarm system throughout the house is suddenly screaming at me.
I am reaching above my head, my shoulders burning from trying to hold my arms up for so long, as I am trying to jam the wires back into the alarm.

Finally…quiet…

Beep beep!

Damnit!

I hear Matthew trying to yell downstairs.

“What’s going on?”

I run downstairs.

“I don’t know how to make it stop!” I tell him, as I walk towards him. He is stuck lying there, his mask on his face, mumbling.
I get my head closer to his.

“What?”
“I have to pee!”

I groaned again…

“You scared the pee right outta me!” He is giggleing, but I don’t find the humor in this situation.

Beep Beep!

I grab the urinal and roll him over towards me.

I am feeling a sense of urgency, but am trying to be understanding to his needs..but I really just want him to hurry up and pee!

Beep Beep!

“Go find batteries”

Sure! Simple enough. I roll him back on his back, sit his bed up and remove his mask. If I have to be awake, then so does he!

Beep beep!

I walk out to the kitchen. The dishes from the night before are stacked in the sink. Food bits are still stuck to the plates. The pots and pans are still on the stove.
The teenager had put the food away but didn’t help with the dishes. Nor did the other two. Oh well! The teenager had gone to school all day, worked and gotten home late. My mood is bad enough that I don’t feel like nit picking, and I was just as capable of cleaning the kitchen last night after all my running around adventures, and tuck ins and such.

Beep beep!

I open the junk drawer. It is referred to as the junk drawer for a reason. Screw drivers, bit and pieces of miscellaneous things that will never actually be put back together are lying in there, awaiting the day I realize they belong in the garbage. There are more batteries than any one family needs in there. But do you think I can find the one size I need? Nope!

Beep beep!
Beep beep!

I look up towards the stairs…
Matthew is trying to yell from the bedroom.
“You need a D volt!”
I know this. I know he knows I know this. At this point, I am sure my children are all awake, so I yell from the kitchen.
“I know!!! And we don’t have any!”
“Look in something that has one, and take it out”

Beep beep!
Beep beep!

I go back upstairs, confused why the beeping is multiplying.
Teenager’s smoke alarm is beeping….and now another one is beeping!
I run downstairs, grab my shoes and tell Matthew I will be right back.
There is no choice, I have to go to the store and get batteries.
I jump in my car, in an over-sized mickey mouse t-shirt, yoga pants and my hair piled on top of my head. I assume there won’t be a soul around.

I assumed wrong.

2:30 am

There are at least 6 cars at the gas station
At this point, I really just want to get in and out!
I duck my head, run inside and grab four D volt batteries! Just in case!
Did you know those damn things are six dollars a-piece!!?
Why I am grumbling about the cost is beyond me, but at this point I am seriously irritated and just want the beeping to stop!
I drive like a maniac home and run inside.

Beep beep!
Beep beep!
Beep beep!

What the…?

I glance in the bedroom to find Matthew is falling over. I have to go and pull him to an upright position.
There are now three smoke alarms going off upstairs. I run upstairs and start replacing the batteries. I am patting myself on the back for being smart enough to grab several packages of batteries.

One smoke alarm, done!

Beep beep!

Hmmm…

Maybe I need to replace all of them before they stop?
Then I hear another one beeping downstairs.
Matthew is yelling downstairs…

“There’s another one down here going off!”

I switch two more batteries…
Still no change.
I run outside, and to the breaker box
I start flipping the circuits, trying to find which one is responsible for bringing electricity to the smoke alarms. No label…nothing…

I try the foyer, the bedrooms and bathrooms.

Beep beep!
Beep beep!
Beep beep!
Beep beep!

The beeping won’t stop!

I am Youtubing videos trying to figure out why. They are less than helpful. I am seriously at my wits end! I am texting some friends, apologizing for waking them, but at a complete loss of what to do. Poor Matthew is trying to give me advice, but he can’t look and see what I am doing, so he just tells me to do what I have already tried doing. Google! I attempt googling the brand. I am looking up the brand of smoke alarm. It says cut off the power supply. I can’t find the power supply!
If the batteries are replaced and they keep beeping, it means the smoke alarm is at “END-OF-LIFE”

Are you freaking kidding me?

Four smoke detectors are at the end of their life?
I didn’t even know they could die!
If I unplug them, the entire house starts screaming at me:
FIRE! FIRE! FIRE!
At this point, the kids just went back to sleep with a pillow over their head.
I am completely at my wits end…

3:00 am

I call 911…

I think this may be one of the most embarrassing moments of my life..

“911- what is your emergence?”

“Hello, this isn’t an emergency. But I can’t get my smoke detectors to stop beeping and I have tried everything”
I am pretty sure I am hanging my head in shame. The dispatcher makes me tell the entire story from the beginning. Yep, I feel like an idiot!

“I will send out a man to help now”
I hang up, feeling sheepish. Matthew tries to assure me that they see situations like this all the time.

Then I remember!

OH MY GOD! The dishes are piled all over, and I made salmon last night!

I don’t have a sense of smell. Yes, you read that right. I somehow lost my sense of smell in the last couple of years, but I am pretty sure the house probably wreaks like fish!
I scramble to start cleaning when I hear the knock at the door.

Damn!

I go to open the front door, and there are two huge guys at my front door, and a massive fire truck parked right in front of my house.

I am literally groaning inside!

The beeping hasn’t stopped but to add even more chaos to the situation, I closed the door, but of course there is another fireman walking in! I now have three huge firemen in my entry way, and my two dogs are going crazy! My old dog, who would let a burglar come in and never make a move, is now vehemently snarling and barking at these men, as the other dog is yelping and barking as well!

I am trying to calm them, but they are going crazy!
Two firemen walk upstairs…while the other one is trying to calm the dogs. Then, one of the dogs decides to pee all over the fireman!
Between the constant beeping, and the dogs barking, and Matthew asking what’s going on, I am literally just turning in circles.
The younger fireman of course walks into my kitchen.
He wants to help clean up the dog mess with paper towels.
I don’t have paper towels!
I am pretty sure I can’t be more embarrassed than I am right now…
Then I look up and realize that two of the firemen have just seen my teenager’s bedroom…
I.AM.Mortified!

At this point, I am pretty sure that if it is going to go wrong, tonight is the night for it to happen.

Suddenly, the beeping stops…

THANK YOU!

3:45 am – firemen leave…

4:00 am – I finally fall back asleep…

6:00 am – middle daughter wakes me up to talk
UGH! It is going to be a long day!

****
Long story, I know, but there is a lesson to be learned here!
Smoke alarms can actually die!
Three out of the four were seven years past their expiration date! My house is only 7 years old. That means the contractor put in old smoke alarms. Here is another helpful tip… put a carbon monoxide detector down low at an outlet. Carbon Monoxide stays low, and if the alarm goes off, it may be too late, as they are often installed too high to make a difference!
Another lesson learned…
Just do the damn dishes…especially if you cooked fish the night before. Those poor firemen. They were above and beyond polite, but inside, they had to be gagging!
I will be hanging my head in shame until the trauma of last night fades from my memory…but if it made you chuckle just a little…well, I guess there is that!

 Matthew Wild

waves…

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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.”

Exclusive Members Only…

Image result for sayings about belonging

 

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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