Author: theresawhitlockwild

Their lives are full of firsts!

First job..

First day in middle school..

First time trying something completely new… ( Like opening a locker in the hallway, with kids rushing and screaming all around you!  Or being bused to a building full of strangers and hoping you will find a place to fit in!)

With each of these new experiences, they will gain wisdom and insight, and hopefully learn about themselves a little.  However, the only way to gain perspective, is to live.  Each experience gives us hindsight.  And only time and life experiences can help us gain perspective.  It cannot be taught, it has to be lived.

I am learning that my perspective with Matthew and our lives with ALS, and who I am and what I am willing to fight for, and my children, and my life, have completely changed, and I think will continue to do so as time goes by.  Two weeks ago,for just a small moment, my perspective was,

“Poor me, I am all alone in this.”

I bitched and moaned and wailed about my hardships… (loudly, I might add!)

But then, a little time went by and I gained some perspective.

I learned, (which I have always known, but it is still nice to be reminded from time to time) that no matter what, it could always be worse.

I learned that as new challenges come my way, it makes me stronger.  I learned that although this life of mine has not always been easy, each challenge has given me insight and perspective to fight the next battles that have come my way.

Matthew and I have a lot to be thankful for.  Sometimes, I forget that. Sometimes, I get so wrapped up in all the expectations and priorities and demands on me, that I forget to simply be in the moment.  I need to somehow remember that when I have days like I did a couple of weeks ago, that those days will pass.  I will get through it.  It is temporary.

I need to be grateful for where we are today.  Because whenever I think this particular stage we are at is difficult, I only need to remember what it used to be like, how I felt then and how easily I was overwhelmed at the small changes that were the beginning stages of ALS. Now I know that I will find my new normal and we will make it work somehow.  I know in the not too distant future, I will be wishing for things in our life to be as easy as they are right now.  Do you know how I know that?  Because there was a time I was overwhelmed just having to help Matthew dress and tie his shoes every day.  Now, looking back, that part looks so easy now.  That is because my perspective has changed on what I find to be difficult and what I find to be easy.

I think my perspective of friendship has also changed.  I do have friends. My journey has led me to meet people from all over the country.  I have lost touch with some, but others have popped in and out of my life at times when I need them the most.  Each friend is unique in the gifts that they can offer me.  They have been there to hear me vent, often times on more than one occasion.  They have helped, or stepped up when I least expected it, and I need to remember that true friendships are not like those memes on Facebook. They are exactly like the friendships I have today.  They are women who are busy with their own lives, and maybe their perspective is to be a good friend by sending a text, or by carpooling my children at the last minute when they can.  Maybe its something as simple as standing next to me and laughing while we watch our children at practice.  The point is, they are there and my perspective changed recently when I was suddenly more aware of them than ever before.

I can’t help but wonder how my children’s perspectives have changed over the last few days.  Did they walk into school, scared, only to walk out and feel empowered for having made it through the day?

My oldest daughter who is 16 years old, has a lot on her shoulders these days. Today, she started her junior year of high school.  On this day, she also started a new program that is similar to dual enrollment. She will attend high school for three hours a day, then be bused out to the new technical college for classes. She will be learning about resort and restaurant management, along with various other expectations of what it means to be an adult.  She is doing this, at the same time she just started working her very first real paying job.  She was more than just nervous today, she was scared.  I have been trying especially hard to remind her over these last weeks of summer, that fear is often that which is unknown.  Once we walk towards it, it is often less frightening.

My middle daughter began her first day of 6th grade today.  She too,was more than just nervous today.  She was scared.  She remarked about the way her stomach was flipping and flopping.  She worried about her clothes and her hair (a newly developing habit that I have never seen before) and she was scared about how she would get to each class on time.

My son started a new grade, with new faces and new expectations.  He jumped right in, not really slowing down to take it all in but rushing past with excitement and fearlessness.  He has the benefit of not having an all new school still.  He is with old friends and comfortable surroundings.

Their perspectives are changing as they experience new things.  I can’t help but be a little jealous of their carefree lives.  I am still the person they lean on when things don’t go their way.  I am still the person they come to when life is not so kind, when plans don’t go accordingly and when they are hurt.  And I know that this will not always be the case.

I remember when they were younger.  The frantic rush to get them all out the door, the hustle and bustle of small children and work and chaos.  My perspective back then was,” I can’t wait for them to be older!”

Now…my perspective is different.  They are older.  And they need me less and less…and I wish they wouldn’t keep growing older.  I wish I had enjoyed them more when they were younger.

These last couple of weeks, the word perspective has floated in and out of my thoughts almost daily.  It has also helped me to reflect and gain wisdom.  Life needs to be lived, hindsight needs to be learned and perspective needs to be gained if we are ever going to grow and develop.

I can’t even imagine how wise I will be soon…with all this newfound perspective!

I like to think of this moment as if I were stacking cards.  Each card is a representation of a person, place or thing or thought, or situation.

When I imagine the setting, I am sitting at a table. A look of determination and focus on my face.  I am biting my lip as I stare intently at what I have created.  I’ve built the foundation, the bottom of the pile securely, and with each card I set on top, each layer that gets built, the more precarious it becomes.  I make sure every little thing around me stays far away from what I am building.  This is mine alone to build.

I’m still intent on keeping each card balanced.  I am still gingerly taking another card and piling them one on top of another.  I am so proud of what I have done.  With a bit of a smile, I turn my head ever so slightly, and exhale.  I grab one more card, and slowly, with steady hands, I reach to the top to place it to the next layer…they all begin to sway slowly.  My hand stills in the air, I feel the air catch in my lungs. I will the cards to stop moving. Maybe if I am completely motionless, the cards will become that way as well.

And just like that, all the pieces crumble…

That is exactly what happened to me yesterday.  It wasn’t just one thing that brought it all down.  It was a culmination of each card, placed just so…and then the last one was all it took.

I completely lost it.

One tear fell, and then another, and before I knew it, I was sobbing.  Gut wrenching sobs.  The kind that is ugly, red faced, snot running down my chin kind of sobbing.  And I couldn’t control it.  I walked as quickly as I could away from everyone, trying to find a place to hide.

I’m embarrassed and ashamed.  Now is not the time to have an emotional breakdown. My pile of cards are haphazardly all over, and all I can do is scoop them all up and try again.  You see, I began building this wall and trying so hard to build it perfectly.  I can’t even describe it in words.  It is literally a culmination of everything, and suddenly, every emotion that I try to stomp down, deep inside, came all to the surface at once.

There have been a few times that as I have built this house of cards, a few have fallen.  Yet, I have managed to quickly repair and rebuilt.  I don’t think about it, I don’t get discouraged.  I simply grab a card and keep going.  Yet this time, the entire thing has fallen apart and I cannot stop the overwhelming amount of emotions that are flooding through me.

I am angry.  I am angry at Matthew’s friends.  I don’t want to load my husband up into a van and drag him around to everyone so he can spend five to ten minutes talking with him.  I want them to want to come visit him.  I want them to realize that it means so much more when they make the effort to come to him, because that effort is getting harder for him to make.  I want them to offer to come take him somewhere instead of me being the chauffeur and the one who has to plan around their schedules to accommodate them.

I am unbelievably irritated when I see Facebook posts of his family and how their lives haven’t changed.  They still go out on the lake, downtown, or anywhere they want to go. No one asks me if there might be something I might have liked to have done. No one offers to come over so that I might make plans.  Or when I find out that family are in town, but have never once made the effort to swing in for even a minute.

I am beyond hurt that I can’t think of one time this summer where anyone asked me if there might be something I might like to do with them.  Where are these friends that I supposedly have?  Because I see them all out doing their thing, but I certainly never got an invite.  Or I get an invite in a future reference, a ” We should do this…” but time goes by and I see them all out doing it, yet I can’t help but wonder what is wrong with me that they never even bothered to see if I was available.

I am bitter when I see other kids getting to have time out on the lake or adventures with family, but my children were not even a thought. I have to plan to do anything with my children.  There is no more spontaneity in my life.  Everything has to be planned in advance.  Heaven forbid we inconvenience anyone else without giving them proper notice.  And heaven forbid their other parent actually step up and be a part of their life.

I am irate at the fact that everyone wants to act like they are there for us, but no one has ever asked me what I need.  Why should I have to ask?  Really?  Can’t someone just step up or show up, look around and think, wow, maybe she needs help getting the kids to an activity, or maybe she just needs a break from her reality for a while.

Then, I feel guilty.  Guilty for feeling the bitterness and anger.  Guilty for hating their ALS-Free lives. This is no one else’s problem, so there is no reason to involve anyone else.  I am glad everyone else’s lives have gone on.  I don’t want to burden anyone else.  I know Matthew doesn’t want to be a burden more than he has to be.  But somedays, I don’t want to tell everyone how great we are doing. Somedays, I want to scream that I don’t want to pick his nose one more time that day.  I don’t want to be the one rolling him over in bed, or getting him dressed and showered, or doing all the little things I do, day in and day out. I don’t want to talk about poop, or how Matthew won’t eat all day in most cases if we leave the house, in case he needs the restroom. I don’t want to worry about whether today is the day we finally go to the hoyer lift full time or if his cough means he won’t be able to eat or breathe soon.

I spent most of the summer finding my happy in my every day.  No matter how mundane.  When I would feel upset, I pushed it aside.  Don’t get upset, find things I can still be grateful for.  And I did a pretty good job of it.  Until I look around and wonder how my life got to this.  How did I become the sole provider and caregiver for three children and a terminally ill husband?  How am I suddenly responsibly for everyone’s happiness and health and well-being?  How did I get to be the adult in charge?

I worry.  I worry every day.  I can’t turn it off either.  I worry about how this is effecting my kids. I worry about the events that are out of my control and how they are impacting my children’s lives.  I worry I am not doing enough, trying hard enough and that there is only me, and that that will never be enough.

I stress about whether my house is clean enough, or if my garage is organized enough now.  I have panic attacks that my car isn’t clean enough, or that if someone stops by, they will find fault in what I am not doing, and they will tell everyone what a failure I am.  Then I immediately get angry that I would dare let someone have that kind of control over me.

I wonder when things are going to get really bad.  I don’t say “if” I say “when” because that is the reality of our situation.  “When” things get bad…”When” Matthew gets sick, who will stay with my children? Who will try to keep their life as normal as possible?  There is no one that has built a connection with them or a bond, and I am expected to ask for help from the very people who don’t even make me a consideration.

This is the rabbit hole.  This is where the guilt and the shame compile on top of the anger and the bitterness and the jealousy.  This is where I want to stop feeling this way, but I can’t.  I don’t want to feel alone, but I am. I don’t want want to be angry at others, when I am probably just as responsible for not asking for help.  How can I make people understand that asking for help is one of the hardest things I will ever have to do in all of this?

I know tomorrow will be better.  That this constant feeling of needing to cry, that I can’t possibly handle one more thing, will be go away.  I need to fall down to get back up.  It’s just taking me a bit longer than usual to find my spunk again.  If it sounds like an angry backlash at those around me, then I suppose it is.  However, I also know that these feelings ebb and flow.  For that, I am thankful.  But I can’t help but wonder…

I wonder what next year looks like…

I wonder, I worry, I think…

I put those cards down, one by one, for each person, each thought, each situation that runs through my mind.  I built my house of cards.  And with each card, I kept telling myself that I was okay, that I was happy, that I am strong enough to get through this, and that I am enough.  I am enough for my children and Matthew.  I don’t need anyone else, I can do this…

Until yesterday when my house of cards came crumbling down.

Tomorrow…..tomorrow I will pick up my cards and start building again. I need to be okay with that.  I need to let all these emotions go, but some days, its like an additional bag I carry around with me. The only solace I have is when reading the support group posts.  Then I realize I am not the only one who feels this way. I am not the only one.  I get a glimpse into other peoples’ lives who have it much worse than I do.  So, I hang my head in shame, feel guilty yet again for feeling this way and I will make tomorrow a new day.

I will pick up those damn cards and begin rebuilding.  The only thing is that I know they will come crashing down again.  I just won’t know when…

 

 

 

“Hey bud, let me give you some advice.”

“Matt!  I know…you already told me!”

Matthew looks a little disappointed that Kaden won’t listen to him.  I lean over, trying to gently remind him that Kaden is just nervous.  This is his first time playing tackle football.  I look in the rear view mirror. His shoulder pads look entirely too large for his little body.  He stares out the window as we drive towards the football field. I look at Matthew.  He seems just as nervous as Kaden.

Matthew is beyond patient with my children.  Having no children of his own, I know that he is enamored and intrigued by them.  He has known them for four years now.  He has seen them grow and change.  He has seem them at their worst and seen them at their best.  He is more supportive and encouraging of them then most fathers I know.  And he is beyond excited that Kaden is playing one of his favorite sports.  A sport he grew up playing, a sport he helped coach and one he is still passionate about to this day.

We pull up, trying to find parking. There are few options nearby, as its a football field surrounded by homes. Parking consists of anywhere a car can maneuver a spot along the curb.

Matthew unloads from the van and we are trying to find a place for his wheelchair to get over the curb.  It’s an older field, so handicapped accessibility wasn’t a well thought-out plan in those days.  He takes to the street till he finds a break in the curb.  I have to follow Kaden into the shop area to get his helmet adjusted and to find his coach.  There are parents everywhere, kids taking to the field. I have no idea where I am going or what I am doing.

It’s chaos. Parents, mostly mothers, who are gabbing, excited to see other moms they haven’t seen since school ended, are standing in their circles.  Dads are grabbing their son by the face masks and shaking their heads up and down, side to side.  Thankfully, I know one of the men who organizes the league.  He pulls my son over, and does the same ritual.  Making sure my son has his gear, we head out to find our team in the sea of helmets and pads.

Matthew is stuck.

Not literally, however, he can’t get anywhere on the field.  The handicapped area has a three inch drop onto the ground.  The sun is hot and this is where I get grumpy.  I completely understand that most people take for granted curbs and edges.  They have no concept of the difficulties of what it takes to get a wheelchair from point A to point B.  I do understand, and sometimes, it gets beyond frustrating.  Something so minor, can end up being such a hassle. Thankfully, a friend lives across the street and came over with a plywood board for Matthew to use as a little ramp.

I had every intention of getting my son situated with his coach and then leaving.  Two and a half hours seems like a long time to sit and watch nine year olds run drills.  However, this is where my bad parenting gets overruled. Matthew is adamant that we sit and watch him practice. I would prefer to leave and come back.

Matthew loves going to see my kids play in their sports, or perform in their activities.  Sometimes I think he enjoys it more than I do.  Don’t get me wrong. It’s not as if I don’t like going.  I adore my children and love doing things with them.  I just have three kids. Add all of those things up over time.  That’s a lot of activities!  Then when you add a husband with a wheelchair, and certain needs, and its a lot to take on some days.

Like taking your son to his first football practice.  No big deal. Now add to it that nobody thought about wheelchairs, and it becomes…complicated.

But, as I have learned throughout this journey, it’s easier to go with the flow than it is to get pissed off about the things I can’t control.  And things have a way of working themselves out. Sometimes, you just have to have a little faith…

Whether its the friend who happens to have the right size of plywood to make a quick little ramp, or the league coach who helps tuck my son under his wing and helps me out with gear and equipment I know nothing about, knowing I am one of those moms and am completely lost.

Or when a little boy is all sweaty and tired after his first practice and Matthew offers one last tidbit of advice and this time, he listens…

“Ok buddy, the best time to let one rip is while you’re in the huddle!  But you can’t laugh, you gotta keep a straight face!”

(I’ll bet you can imagine the glimmer of mischief in that little boy’s eyes and the giggle when he realized he has practice again tomorrow!)

I had every intention of writing all summer long. Each day I was going to devote time to mastering this craft.  I would be driven and focused and use my time wisely!  I would blog daily, with quirky phrases and deep insightful wisdom for all who travel along the ALS journey.  And yet. days have passed and other priorities have popped up, each one more pressing than the last.

First, I had to reorganize the garage.  It was incredibly important that everything had a place, and the items collecting dust be donated.  That was in June.  Then I had to get the girls’ rooms decorated.  Then I needed to reorganize the pantry.  Then there was the trip we took and the backyard that had to be landscaped!

Then I thought that if I had my own office, I would have my own space to write.  That was it!  That was all I needed.  So I moved my son’s room upstairs so that I could have my very own space to call my own.  My very own refuge.  A vacation oasis that would by my place to sit and write those next best sellers, or to blog about ALS.

Well, that was several weeks ago…

Now my excuse is that the office isn’t quite my oasis yet…but once I decorate it…then! Then it will be perfect!

I’m beginning to see a pattern here…that needs to stop…

So, I have decided to start making my writing a priority. Just like I have started making me a priority again.  It isn’t easy.  There are mass feelings of guilt and shame.  It will be a daily struggle and it will require some serious time management on my part.  It will be arguments in my own head that I will need to face.  And I need to listen to myself when I tell the guilt-ridden part of me that its okay for me to do things for myself!  That I don’t need to constantly be taking care of others and that this is good to have some time just for me.

When I began writing these little ALS facts of the day, I had big intentions.  I would write daily about our life, so others could see what it was like to experience this.  However, I let people put me down, and I let my own insecurities get in the way.  And..I let my life get in the way.  So while in one way I should be mad that I let even more time go by with nothing to show for it, I refuse to feel bad for that.  At least I have been busy living! Which is more than I can say for most.

My fear is that these ALS facts will simply turn into an avenue of me complaining in a poorly written diary.  That is not what I want this to be.  However, maybe there was a reason I couldn’t come up with a wittier name. Maybe it truly should be just about little facts about ALS every day and what our lives are like now, with those three letters looming around us all the time.

So, hopefully I can get out of my own way and start writing more often.  For those of you who may follow me, I hope you enjoy the new  approach.  I promised personal and I guess it’s time I deliver on that.

After all, why sensor it?  It is messy, and ugly and dirty.  It is beautiful and funny and at times endearing and heart-wrenching.  It is also a journey worth writing about.

So I guess, tomorrow?  Same time, same place?

 

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.

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…

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.

 

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…

 

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.

 

 

It will be vulnerable…

It will be raw…

It will not always be easy, but it will be worth it.

Please follow me as I write about living and dying with ALS.