Stages and transitions…

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She jumps up onto the examining table.  Her tiny arms and skinny long legs she hasn’t quite grown into are dangling through the paper gown that is four sizes too big for her.  My son crawls onto my lap. I hold onto him, loving having him there.  He seldom cuddles like this, but I know at this moment, he is trying to be brave,  yet wants his mother to hug him and assure him that all is okay.  Neither of them want to be here.  Wellness checks are never fun for children, especially when shots may be included.

Both my children are being goofy to offset their nervousness.  The doctor walks in with a smile, and they sit up a little straighter.  My children have seen this doctor every year for the last six years.  I am incredibly grateful that they seldom see her for anything other than their yearly wellness checks.  They are seldom sick. I wonder if the doctor remembers us.  I can see her checking her memory bank and trying to recall details about each child.  There isn’t much to recall.  A dog bite and a bicycle accident four or five years ago for my daughter, and thankfully my son hasn’t required stitches or had a concussion lately either.

I am struck by how big my children suddenly seem.  They are no longer toddlers or small children.  They can answer the doctor’s questions, so I stay quiet for the most part, simply watching them. I jump in to help them here or there but for the most part, the conversation is now between doctor and child.  They blush when the doctor asks about their oral hygiene.  I think I may have blushed as well.

They are growing right on target, and their eyes are perfect.  I glance at the baby scale.  I remember when they were babies, feeling overwhelmed trying to gather up 3 children to bring into the doctor, to get weighed and measured.  The diaper bags, the toys and snacks to keep them occupied as we waited.  Dreading the immunizations, yet feeling super proud, because my children barely fuss at the needle intrusion.

Where did the time go?

How did I enter into a new stage of life and I didn’t even realize it? Isn’t there supposed to be some sort of monumental moment that stops us?  We should be given some sort of notice, shouldn’t we?  My children are now 16, 11 and 9.  I no longer have to haul around that bag full of items I may need at a moments’ notice.  That phase is over.

Why didn’t anyone warn me that these life stages would go by and I wouldn’t realize it when they were happening? I am struck by the differences in life stages and how we transition into each and this makes me recall the day before.

The day before, Matthew and I had walked into the local non-profit hospice center.  We had a meeting that would be held there. I really hadn’t thought much of it, until we parked.  Suddenly we are outside this beautiful building, with flowers of various colors, and a brick wall with names engraved on glass…”In Loving Memory”

It is not easy to walk into a place like that. Regardless of how beautiful it is, the warm and inviting colors and engaging staff members who try their best to make you feel welcome, there is still the knowledge that this is a place where people come to die.  These people are at the end of their life stage.  I wonder if anyone told them this was coming before they got there?

I assume more people know as they get to a certain age it is coming.  But what about those who are too young? What age is too young? Matthew is only 44 years old.  He shouldn’t be at that stage yet.  Maybe that’s why ALS is so unfair.  It seems to happen to anyone, and there is no warning.  There is no one to explain that they no longer get to experience all those life stages.  They have been cut off, and there is nothing that can be done to stop it.

We were given a tour, including how each room is designed with the family in mind.  I see some gentlemen at the end of the hallway.  Are they visiting a grandparent?  Or is it a parent?  God forbid it may be a child.  They walk by, giving us a slight nod.  I am sure they are just as curious of us as we are of them.  I look over at Matthew, trying to gauge his reaction to this place.  As usual, he shows nothing but polite curiosity.

I can’t help but wonder if everyone who walks into a Hospice facility feels it.  Does the energy stay here, or is this all in my imagination?  It is a quiet sadness that is permeating and ever present.  We eventually end our tour and head to a quiet room to talk about future foundation goals and work.  Thankfully, she directs us to the kids’ room.  I’m not sure, but I think Matthew is just as thankful as I am at being in a room that is less about death.  The board games, crayons and movies are cheerful. I sigh.  This I can handle.

Our meeting is over and I load Matthew into the van.  We both sit there quietly for just a second. Each lost in our own thoughts. I turn the key and back up, driving away. I look over at him and ask what he is thinking.

“I’m not supposed to be there yet.”

I give a half laugh.  I agree.

It is not a new thought.  I know the statistics are not in our favor and the chances of us being there sooner rather than later are higher than I want to admit to.  We both agree that the place is a well-thought out, beautiful facility.  It is filled with caring, gentle people who understand that that transition is just as important when a person leaves this earth as when they arrived.

So this brings me back to watching my children talk to the doctor about the safety of car seats and seatbelts. My daughter grimaces but puts on a brave face when the doctor tells her she is due for two more shots.  She is at a new life stage.  One of emerging independence, along with her siblings.

I am sad at how quick time continues to fly by for me.  One minute, I am just like my daughter, trying to figure out what I want to be when I grow up (Something I am still trying to figure out.) The next, I am a new mother, with babies and feeling pressure to be everything to everyone and to do this well.  They seemed to always be in diapers, or crying or needing me for something.  Now, they are less likely to be crying, but they need me less and less.  I will soon be seeing my children leave home and begin their lives.

I am more aware of the gift of life than ever before.  For that, I can be thankful.  This experience with Matthew has taught me to be more mindful, to try to be more present.   I don’t know at what age my stage of life will come to an end.  The older I get, the more I hope that stage is still years away.  I have so many more things I want to experience in this lifetime.

I wonder if Matthew feels cheated or robbed of these experiences?  I do know that he seems content on most days and thankful for his memories as well as what he still gets.  This lifetime isn’t over yet, and he continues to show me that he is living, regardless of what obstacles have been placed in front of him.  He shows a grace and dignity at his journey that few his age would.

This is a reminder to me of how fragile life is.  There are no guarantees, there are no assurances that we will all be given the chance to enter each life stage to its fullest.  However, for those who’s lives have ended short, regardless of why, we should honor them by living each day to its fullest. Who knows when someone will be coming to visit us as we transition into our final stage.

One little crack in the dam…

anger quote

The music is loud and not at all inviting.  The band is the opening act, but their guitars sound more like they are being abused rather than played.  Still, we continue walking towards the noise.  The park is filled with people milling around, sitting and chatting with friends, and children jumping up and down or racing around the blankets sitting on the grass. It has been so incredibly hot this day, but the sun making its way closer to the horizon and the breeze coming from the lake is starting to spill over onto the crowd.

We walk up to the entrance, and get the customary ink stamp on our hands that says we paid our dues and are welcome to come and go as we please.  Matthew’s brother had extra tickets and wouldn’t let me pay.  Before I can argue or even say thank you, we are instantly seeing faces we know and many more of those we don’t.

I am scanning the crowds. I glance to my right, and I notice his legs first.  I don’t have to see much else.  The wheelchair and his limbs are so familiar to me, I don’t even have to know who it is to know.  He has ALS.

I have met this man before, but is has been a while and as always, I find myself jarred for just a second.  I have seen hundreds of pictures of people with this disease, and have met dozens of people with ALS. It will never get easier, regardless of the fact that I live with it every day. Each individual may look completely different at the beginning stages of the disease, however, this man has been living with the disease for a couple years now, and the quick glance of his frailty tells me so much in so little of a glance.

My eyes quickly sweep over him, noticing the tube protruding from his neck, yet his beard is neatly trimmed. His respiratory was affected quickly after his diagnosis and after a scary situation, he had an emergency tracheotomy done to keep him alive.  That was over a year ago. Now his arms and legs have the signature look of having lost muscle, the atrophy that is ALS has made his limbs not only weakened, but has shrunken them to almost skeletal proportions.  Yet his face appears full and healthy.  I can’t tell if it is the beard that gives him a fuller look.  I think I am shocked because this is the first time I have seen him in person in almost two years.  His facebook pictures were deceiving.  I hadn’t realized he had progressed this far.

I wave and smile. I am happy to see him out and hopefully enjoying the day. I know the music isn’t enjoyable at the moment, but this too shall pass, and the entertainer for the evening who is scheduled to begin soon is a beloved favorite in the area, so I can patiently wait till the screaming guitars come to a stop. I look around him and see he is surrounded by his parents, and maybe others who I would assume are friends’ of family.  There is no way to get closer to him to talk to him, the divider at the entrance, the loud music and the people sitting around make it impossible for Matthew and I to navigate over to say hello.

We have barely made our way past the ticket takers and volunteers when more people come walking up to us.  I look down at Matthew.  His own arms resembling so many others with ALS in those photos.   His arms have that signature look as well.  The muscle atrophy has shrunk his arms and his hands. His wrists are now unable to bend willingly back and forth.  His hands no longer able to clasp, or stretch out. They are permanently held in a half closed position.  He raises his left arm just barely, trying to reach out when people go to shake his hand and they in turn, quickly switch from right to left and do a quick little cupping of the fingers.

Those who know Matthew wave, or come over for a quick hello.  I am used to this.  It is hard to go out in public without running into people he knows.  He was born and raised here, and these functions around town are some of his favorites.   I often times just stand there smiling.  If I am lucky, I remember some of their faces, if it’s a really good day, I can remember their names.

Eventually, the main entertainer for the evening begins his show, and people start two steppin’ and line dancing anywhere they can find space. I say this often, but I sure miss dancing with Matthew.  We were hoping to win a prize or two or even a basket from the raffle items, but our time was limited, so we started heading back the way we came.

The man we know who also has ALS had left by then, but his mother came over to visit with us. We asked how he is doing.  We know a little about his story and while his story is far from unique it is still sad to hear.

He was diagnosed with ALS after also having been diagnosed with MS for years before that.  His wife left him last year. His parents care for him, even though they are both in their seventies, there is little money for a caregiver to help. It is a very stressful situation for everyone involved, but my heart especially breaks for his teenage son.

These kinds of stories are no different than the ones I read every day on my support groups on Facebook.  Those private groups are meant exclusively for caregivers of someone with ALS.  It is meant to be a safe place to vent and say the things that need to be said so the person caring for them feels supported by others who are going through the same thing.  It is a place to cry, to ask  for help and to ask opinions.

This man’s situation is not much different than about half of the other’s I see on these sites.  He is angry.  He is bitter that this is his story.  He wants a different outcome.  He probably feels cheated.  If I had to guess, he chooses to live for his son, but maybe a part of his anger fuels him as well.  I don’t know.  I haven’t talked to him personally. I can only piece together my opinion by what I have read from others or have heard about his story along the way.

I am sad for his family as well. These will be the memories they are left with.  Yet, I can also relate.  People always ask me how Matthew is doing, and I tell them that Matthew handles this situation better than I do.  And its so true!

I need to backtrack just a little to a conversation I had with Matthew the other day. I was frustrated about something, now I can’t even remember what it was.  I was venting to him and I asked him why he was always so forgiving and calm about this whole situation.  I asked him why he never got angry, or why he wasn’t like so many others who were cursing people around him, or even cursing that he got this damn disease.  What he told me made so much sense.

He told me to imagine a dam.  His emotions are behind that dam.  As soon as he lets one thing break through, like disappointment in how he is treated by someone, then the dam leaks.  If he continues thinking about the things he can no longer do, that leak in the dam will only get bigger. Eventually, thinking about the negative, about ALS, about dying, about wanting to have deeper relationships with family members before it’s too late, about alcohol abuse, about friends that have come and gone, about not walking, about not being able to dance, about not being able to hold me or help around the house….All these things are cracks in that dam…. and he doesn’t want that dam to break.  So he focuses only on what he can still do, and the things he still enjoys and the people he does have in his life, and the experiences he is thankful he still gets. This in turn keeps his dam of emotions protected, with no cracks.

Now let me return to when we were visiting with this family. I felt so much sadness but also guilt.  She told me she wished she had the support that we had.  She is caring for her son who has ALS, and I am caring for my husband.  However, the difference isn’t in the amount of money we have versus them nor is it about the caregiving support that we have provided by the VA versus their family who has to pay out of pocket.  I am sure that it would help tremendously if they had that kind of help, so I don’t mean to downplay that part at all.  I can’t imagine how scary it would be to have so little resources to care for someone you love.

What I mean is the difference in attitude and spirit.  Matthew handles this with far more grace than even I give him credit for.  It must take tremendous strength of willpower to focus everyday like that on only positives.  It must take extreme fortitude to continue to move forward everyday, knowing what lies ahead.  We have both seen the road, and it is going to be rough.  He often tells me that I have it worse than him, because all he has to do is sit there, I am the one doing all the work around him.  It certainly validates my feelings when I am feeling overwhelmed!  Yet, he always shows me how much he appreciates me, and he always tells me how grateful he is to have me in his life, caring for him.  Sometimes, I think I get so wrapped up in my own sorrow, I forget how strong Matthew has to be every. single. day.

As we walked away, I looked down at Matthew. It is cooler now, the intense heat for the day is now a memory. The sky is filled with the beautiful hues from a sun ready to set.  The lake and mountains in the distance are just as calming to see far away, and as always, helps me feel centered. I can see he is looking around, taking it all in.

I asked him what he is thinking.

“I can’t imagine being angry like that.  I am just so thankful to be alive!”

And for a moment, the cracks in my dam seal up, and I am thankful that my situation doesn’t seem that bad…

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.