Fake it till you make it…

I open my phone, staring numbingly at Facebook.  My finger moving the pictures down, one by one. Over and over, all I see are happy, smiling people.  They are boating, water skiing, or lounging on the rivers or lakes.

They are grilling, or cooking or visiting with family.

They are smiling…

The sun is shining…

They are happy…

They are celebrating…

 

I put my phone away.  Then grab it again, looking once again.

What am I looking for?

The 4th of July has always been one of my favorites! Yet, this year, I can’t quite muster up the enthusiasm or excitement I would normally be feeling.  This summer feels…. off. Actually, every year since the diagnosis, summer is getting harder and harder for me.

I start getting the kids and the snacks, and Matthew loaded up into the van.  The kids are so excited to buy fireworks.  They notice I am snappy with them.  I start the van and take a deep breathe.  I instantly feel guilty.  This is not their battle.

I try to make up for it by spending too much on fireworks.  The way I parent is completely different after the ALS diagnosis than it was before, but that is a story for another day.

I snap a few pictures of their excitement.  Of course, as soon as I whip out my phone to take a picture, their excitement turns to immediate, “Mom, why do you need a picture!” and then they either hide, turn away or frown.  I swear they were all smiles and happy about the fireworks three seconds before that!  However, it shall go down in Facebook history as them looking perturbed and irritated for even having to stand at a fireworks stand in the first place.

We load back into the van.  Immediately, Matthew and I hear bickering and fighting between the girls.  I am already tense.  My patience is the size of a walnut! (For those of you who have never heard this phrase, it comes from some random parenting book I read when my first daughter was around 3 years old.  It suggested always giving your children a visual, so they can relate to your feelings.  Some days I give them the visual of a watermelon, other days, a pea!)

However, I forgot to mention the visual and jumped right into threatening them with no pool, no fireworks…I may have even threatened to take their birthdays away.  I do that sometimes too.  I stop talking, pivot back to my steering wheel, and breathe…

I don’t really want to be going to the pool party.

Damn, there is the guilt again.

My bad mood has nothing to do with my children, and their bickering is very much a normal part of growing up and sitting in a space that is too small, and emotions that are sometimes too big for little people.  Excitement is such a great emotion!  I am just not feeling it on this day.

We drive to Matthews’ friend’s house.

This is a home where friends come to gather.  There are traditions here.  There are a lifetime of memories here.  The family and friends that come here to celebrate are friends that have been friends for a lifetime. Their parents were friends before them, and the grandchildren are growing up with these same memories.  It is nostalgic.  It is sweet.  And as usual, I feel as if I don’t belong.

I sit by Matthew, adjust what he needs adjusted, checking to make sure my children didn’t fling their clothes from one end of the pool to the other, and I sit.

My emotions are overwhelming me, so I sit with sigh and a flounce of irritation in my body language, and I am sure my face is squinty and looking sullen.  From time to time, people walk over to chat with Matthew.  Some for a moment or two, and others for a bit longer.  I am on the other side of Matthew, so I don’t speak much. I am trying to process why every time I am near these people I feel so completely overwhelmed by my emotions that I just sit there.  The alternative is that I will break down crying.

Now I am just pissed. I feel tears building.  I am angry.  I am angry at everyone there.  I am angry that I am sitting there, feeling sorry for myself, and sad for us.  I should have been playing with my kids in the pool. I should have been laughing and letting go in the sunshine.  Yet, I am so overwhelmed by my mirade of emotions, I literally count down the hours till we can leave.

There is irony in this situation. I am constantly lecturing my children.  I lecture them almost daily about situations like this, yet I am sitting here, not taking my own advice.  Someday, years from now, my children will say, “Mom always said, you can’t control how others behave, you can only control how you react.”

I am acting like a sullen spoiled brat.

We left after several hours.

I breathe….

Later, I would find myself sitting in my neighborhood, watching my children make new memories with new children.  We would be laughing and giggling.  I was more relaxed.  My overwhelming emotions are now leveled off.  I no longer feel like crying, and I am no longer sullen.  Matthew and I enjoy the rest of our fourth of July feeling much calmer, even after there were a few close calls, a few minor burns, (nothing too serious!) and happy children excited to see some really cool illegal fireworks that were very up-close and personal that evening ( I am already planning next year’s excursion for those lovely ones that cannot be bought at just any ole’ fireworks’ stand!)

So what was so different about hanging with friends and family at the pool versus hanging with the neighborhood friends and children?

I think it is because when we are around Matthew’s friends and family, I am instantly irritated.  We are two and half years into diagnosis, yet their life has continued with little to no interruption.  Should I logically be angry about this? Absolutely not!  Yet, we show up to their events, and I find myself irritated with them. In contrast, I have no expectation for my neighbors’ lives to have been changed due to Matthew’s diagnosis.

I see Facebook posts of his friends and family celebrating.  Yet, it is my children and I who are caring for Matthew, day in and day out.  They have no idea what our daily life is like, nor what it will become as more and more time goes by.  Logically, is it really their job to understand? Probably not.

When we are invited to BBQ’s, and we show up and I just sit there, I logically understand that I seem  like a jerk for just sitting there.  It has nothing to do with not wanting to participate.  It has so much more to do with the fact that I am judged.  I know there are those who do not like me. That no matter what I do, it will be wrong.  I will never do enough or be enough or try hard enough in their eyes.   Yet, those opinions will always come to me second hand, certainly never said to my face.

So when we are around Matthew’s family and friends, I sit there,  constantly wondering what else was said about me or my children.  What I did wrong this time in their eyes, even though logically, I know that this person or these people will never understand what we are going through, or what it’s really like to do this every day, with no break.

Logically, should I feel criticized or let down? Absolutely!

I am capable of asking for help, but the pride I feel won’t let me.  The stubbornness inside of me stops me just as I open my mouth, because I feel that those who truly want to help will show up.  They will be a part of our lives because they choose to be, not because I asked for help.

The anger I feel may also be a bit of jealousy.  Their lives seem so carefree to me. Is it logical to feel this way? I think so? I remember not too long ago, not knowing what ALS was, or what it meant to someone who was diagnosed, or what it meant to those caring for that person.  It was just a few short years ago that I would play on the water, or take my children to do something.  There was no thought, we just jumped in the car and went. Summer was fun and carefree!

Now if I want to do anything, it has to be planned.  I have no help with my children and no offers for them to tag along.  They are missing out on boat days, and learning to ski, to go tubing or to swim or to play on the water.  They are not asked to participate with families and friends in their excursions.  My pride stops me from asking.  If people want to be a part of our life, shouldn’t they show up?  Why should I have to ask?

It was not that long ago that I was carefree.  That I could come and go as I pleased.  Now, everything is detailed.  If we want to go for a drive, we plan it around potty breaks and eating.  There is no option for Matthew to use a public toilet anymore.  Many times, he won’t eat if it’s going to be a long day. Traveling, even for the day, is thought out..it has to be planned.

It is easier for people to come to us, yet they seldom do..if at all.  Their lives have gone on…

Because of this, I feel alone and disconnected, even if I am completely surrounded by people.

Which makes me feel like crying….which pisses me off…I hate to cry.

So, I slap a smile on my face, and I fake it till I make it..

back home.

 

The strangest of dreams…

I dreamt of death.

I can’t recall all the details, but that people around me were dying.  Young and old.  I was waiting for them to die, because I had somewhere to be. It was almost frantic, my trying to leave but being stuck. In my dream, there was an old man.  I seemed to know him, even though I wasn’t sad that he was dying.  He was tall and lanky.  Maybe he was a family member or friend. I remember he was wearing a plaid shirt and jeans.  His ears were long, as old men’s ears and noses always grow with age.

I remember trying to pack my clothes in a hotel room full of people, needing to catch a flight.  Yet, I couldn’t go anywhere until this man died.  He kept pacing the floor, and those around me seemed to think this was normal.  His lips were cracked and dry.  His face was weathered and had deep lines, suggesting a life full of laughter and deep sadness that had been chiseled onto his face through time.

Someone said I needed to change his clothes.  I remember feeling anxious.  How do you get a dying man into clothes when he wouldn’t lay still?  Then I looked around and noticed there was a clay-like mud all over,  and this man kept wiping it all over himself. The other people in the room seemed exasperated that I wouldn’t keep this man clean, but I just wanted to leave.  I was trying to have patience, but I really didn’t want to be there.  I knew I would miss my flight if I didn’t leave soon and I was trying to find an excuse to leave.

Matthew woke me up before I came to the end of the dream.  I groaned.  Certainly not because I was unhappy from waking from that weird dream.  I groaned because I wasn’t ready to be awake.  My eyes are burning.  I blame myself.  I stayed up late with my daughter to watch “Footloose.”  (The original movie…not that crappy remake!)

I think I maybe got five hours of sleep?  Not all at once…I woke at least have a dozen times in those hours, but that is hardly new. When was the last time I slept through the night without waking up?  I lay there, begging Matthew to give me just a minute.  His leg is stuck.  He can’t move it, so I use my leg to lift it high enough for him to bend and readjust.

His left leg gets stuck more and more often.  He can’t roll over without help anymore. How long has it been since he hasn’t needed to wake me for help?  I can’t remember.  Its been at least a year, maybe longer where he has needed me to lift the covers, while he readjusts, or rolls over.  Several times a night.  His arms and hands no longer strong enough to lift the covers off his body.  The leg thing…that’s fairly new, maybe in the last month.

Matthew wants to get up.  He needs his trilogy mask taken off.  He is uncomfortable and wants to get in his chair.

I just want to go back to sleep.

But I get up.  One eye squinting, while the other refuses to open.  I stumble in to the bathroom, pulling the sit-to-stand hoyer lift from the shower, (the closest and easiest place to store it) and I wheel it back into the bedroom.

I hit the power button on the trilogy machine.  It makes one last screaming BEEP before it dies.  I hate that machine. I remove the mask as carefully as I can from Matthew’s face, I notice the indents the mask has made on his cheeks.  I know why he hates that mask.  I couldn’t sleep with it on me, and I wonder how he is able to every night.  Yet, I am sure being able to breathe with worth the uncomfortable feeling of something covering his nose and mouth.

I grab the remote control to his side of the adjustable bed and use it to incline him till it won’t move anymore.  I still have to wrap my arms around Matthew and sit him all the way up.  This is usually where I give him a hug good morning. However, I am still doing the one-eyed squint, and so today its a tug of war, as I try to sit him up without irritating my back.  It’s spasms regardless of how careful I am.

I move the hoyer lift in, adjusting his legs, wrapping the belt around him and I hit yet another remote control that pulls him into a standing position.  As quickly as possible, I maneuver him into his wheelchair, then hit the down button to slowly set him down.  In the mornings, his legs feel strong, so I have a bit more time.  I don’t need to panic that his legs will  give out on me today, yet that fear is always there. Now that his legs are getting even weaker, I feel my anxiety rise.

I wheel the hoyer lift back into the bathroom,, both eyes open now.  Matthew wheels himself out to the kitchen and turns on my coffee pot, as I flop back down on the bed.  I want to go back to sleep, but I make the mistake of picking up my phone and looking at Facebook.

The support groups for ALS Caregivers have been busy.  I put my phone back down. I don’t feel like reading any of it.  I lay there, wondering about my dream and what it means.  I  hear Matthew rolling around in his chair, doing his version of tiptoeing and trying to be quiet so I can go back to sleep.  I contemplate the idea, but my brain is waking up, so I guess I’ll get my body moving.

I won’t think about death today.  Despite caring for someone with ALS, its not something I think about every day anymore.  Maybe in the beginning it was constant.  Now, almost two and half years after the diagnosis, our days are filled with foundation work, kids, and everyday stuff. ALS is just a part of our normal every day now. I try not to let the negative pop in, and today, despite my strange dream, will be just another day.

Some days I lose this battle.  I have noticed I have to make a conscious effort at being grateful and present.  Yet, I think some would call this being mindful as well.  Today, I will find the positives, and I will stay busy, and I will not let my mind wander to that which I have no control.

But I think that dream will stay with me for a while longer…

 

The Epiphany!

I’ve had an epiphany!

First, let me backtrack just a little.  When I started writing my little “ALS Fact of the Day” posts on Facebook, they were meant to be informative in a fun little way.  I tried diligently to keep them light and carefree.  The beginning days of learning to live with ALS, and caring for someone with this disease, I thought I could help others learn about what ALS was, how it was affecting us, yet I could do it in a way that made people smile.  I thought I could do this with strength and resilience…I thought I would be different than so many others who had been on this journey before me.  Soon, the posts would lose their humor, as I would come to learn the realities of ALS myself. Now I know how truly naive I was in thinking I could go through this, by his side, and not have a mirade of emotions overpower me on a daily basis.

It went from mild loss of strength in Matthew’s hands, to eventually much more.  So slowly, that sometimes the losses were indiscernible, and wondering why his progression was so much slower than those around him.  But the clock has continued to tick, and his progression is still slowly moving ahead.

I would stop writing those humorous posts.  I would find that writing about my pain and loss were more the focal point.  The agony was more profound, and I was at a loss of finding the positives in each day.  And to be quite honest, I was also feeling sorry for myself.  I could almost hear what other’s were thinking, as if they were saying it to my face, instead of my imagination yelling it in my mind.

“Why are you so depressed, YOU aren’t the one dying from ALS?”

Then, I would begin getting comments from people, sometimes privately and sometimes not so much.   They would ask why I felt the need to write.

Because if I don’t I will drown in the overwhelming emotions of trying to watch someone I care about, die…slowly.

Others would feel the need to try to protect Matthew, telling me I was taking advantage of his situation, and that this shouldn’t be such a public display.  No one needed to read what I was writing.  Others even told me that it was too painful to read, and they wished I would stop writing.

So, I quit writing.

I thought I could find different ways to express myself.

Maybe I would write a book?  Yet, when I sat down, the words wouldn’t come.

Maybe I could start a blog?  And when I went to write in it, I froze.

The words wouldn’t flow past my fingertips..

WHY??

Then, last night, as I sat on the porch, drinking my third glass of wine, talking with Matthew.  I had an epiphany!

I quit writing because I was hurting others. I quit writing because I was afraid that the things I had to say would hurt family members or friends.  I quit writing because I was afraid…

So, this morning, I decided I would face that fear head on.

This journey is painful, and difficult.  Yet, this journey is ours. This is our story.  This is not just Matthew living and dying from ALS.  We are living this together. And it is beautiful, it is heart-wrenching…and it is ours to tell.

For those who want to learn about the story, or be a part of it, you are welcome.  For those who have judgement or anger that it is being told, and quite possibly not in the way you want it to be told, go tell one yourself.  But your judgments and anger are no longer my problem.  I will no longer feel responsible for those who feel it is too painful for them to read.

This is our story, and I will tell it.