as if he never existed…


His birthday came and went, without so much as a mention, yet I am keenly aware of the day he was born.


Every year, as the date approaches on the calendar, there is a strong sense of something missing. I will try to move past it, over it, avoid it, but I am never able to ignore August 2nd. There will never be a Facebook notification to remind his friends and family to send well wishes. In fact, there is never even a mention that he existed. No memories shared, no one even spoke his name.


His presence is only known to a few, and he is seldom, if ever brought up in conversation.


As a young girl, there were no reminders placed around the home. Conversations were evaded. No keepsakes, and certainly no pictures. Maybe it was because the pain was too unbearable for a mother who had already lost so much, and it was easier to pretend he had never existed then to recognize he was truly gone.


I have an image of a young girl. Maybe eleven years old. She was tough. She was good at being cautious, choosing to wait and watch to see if the situation required her to shrink back, and remain unnoticed. It was safer that way.

Weathered by life and its cruelties already and untrusting of those around her, those sharp blue eyes knew how to scan a room in the blink of an eye, and feel it out.
Only if it felt safe would she let her guard down. Those moments were rare.


Yet this image is not of her with her armor built around her. This image is of her sobbing, wrapped around a woman sitting on a cheap kitchen chair, a rare occurrence even then. Mother and daughter entangled in limbs and blonde hair as that child held on, clinging frantically to the woman for comfort and the grief suddenly too much for that little body to continue to carry.


Her hair is swept back from her face into a ponytail, and her mother is stroking her back. An image of a woman holding a young child, maybe three or four would not seem awkward or even seem untoward. But this girl was too big to be sitting on her mother’s lap in such a fashion. Her body was too large for such a petite woman to be holding, but neither seemed willing to let go.


She had lied.


When asked about her brother by the new girl who just moved into the trailer park, she lied and said he was staying at his grandparents that summer. After all, the new child would certainly not be staying long in that desert hellhole. No one ever did. So the young girl with the tough façade and blonde hair pulled wildly back from her dirty face lied.


It came so easily.


It was so much easier to fall into make believe.


He was simply gone for the summer. But he would be back. She weaved all sorts of tales about his fun adventures for the summer and how she missed him, but he would be back in a couple of months.


That little tattletale ran off and started innocently talking about the girl in the trailer park; the wild one who rode fearlessly on her motorcycle, up and down the dirt paths and who seemed to be searching for something that was never there.


Oh, it was innocent enough, I am sure.


The little tattletale brat, with her short, ratty hair and missing teeth must have told her mother about a boy who was at his grandparents for the summer, but in fact, no longer existed.


When the mother sat on that rickety chair, asking why such a fearless young girl would lie…


I crumbled.
*****

I can remember his birthday, but I choose not to remember the date that he died. He was born August 2nd. He had a mop of messy brown hair, and sometimes when my son smiles up at me, I see pieces of that same boy looking up at me.


There are days when I don’t think about him. In fact, I did everything in my power to block any memory of him, choosing to use anger as a shield, and to ignore the date for as long as possible for many years around this time of the year. After all these years, the memory of him weaves in and out. There is still hurt and if I am honest, there is also still bitterness at the loss.


I am curious and want to know who he would have become. Would he have struggled and carried the hurt and the anger and the fear and let it engulf him, as so many others have? Would we have raised our babies by each other? Would he have continued to be my biggest protector and my biggest fan?


As my son approaches the same age as my brother before he died, I have an irrational fear of losing my son. They have so many similarities. Small for their age, reserved and guarded, choosing to watch and wait before jumping into a situation. They both share the same kind heart, and love for their mother, and strong dislike for school.


I can picture his gravestone. I am irritated at whoever decided he should have a motorcycle as a representation of his interests. That was certainly not what he was interested in.


He was 14 years old, with crooked teeth, and a small splatter of freckles across his nose. He wore his jean jacket as if it were an additional piece of skin. He loved the Beastie Boys and Weird Al Yankovic. He was learning to play the drums with any surface he could find. I would tell him to stop using my head as a drum and he would just laugh and walk away. Before he died, I was almost as tall as he was, which was beginning to bother him. It was often just the two of us, our mother, battling her own demons, was often gone.


The older we became, the bigger the messes we made. From cow tipping and chasing feral cats, to windmills and dissecting frogs on a broken-down farm in Kansas, to pick-pocketing drunks as they left the casinos in Nevada, to kinder memories of family gatherings in a small town in Wyoming, I let these memories take me away. Two siblings running wild through the fields, laughing, and sometimes fighting fiercely, but always relying on each other to get through another day.


*****

An older woman kindly asked me if I had any siblings. The usual pit in my stomach clenched, and I can feel my guard come up. The visceral reaction is all to familiar. It has been over thirty years and my body still responds the same way. All the voices in my head begin whispering loudly…”Don’t talk about him…Don’t tell anyone…It is nobody’s business… If they ask about him, just say that he died…it was an accident.”


Instead, I replied quietly,


“I had a brother, once.”


This time, I am standing as she sits. Her brown hair is not ratty, and she glances up at me. Her eyes are curious. She wonders if we were close. I tell her that we were the closest.


She smiles at me and says,


“I am glad you had him in your life.”


I pause. I had never considered it in that light.


I had focused for so long on what I lost, I forgot to focus on what I had!


I have to accept the pain, if I am going to remember the boy.


I remember so many little things…


He pulled thorny stickers from my feet and scolded me for constantly running around without any shoes on. He got into fist fights because of my loud mouth. We would mop the floor in our socks, with too much soap so we could slide around, falling and giggling at our ingenuity. He broke my collar bone because we were jumping out of the top of a closet and trying to do flips onto a bed and I got in the way. We had rips in our tattered Catholic uniforms because we slid down the roof of the barn and constantly snagged our butts on the nails that stuck out, as we fell into a pile of dry hay. The nuns didn’t like us, and often made us eat lunch on the steps of the school outside. We were often ostracized, but together, we didn’t seem to mind much.


We both loved watching Wheel of Fortune and he would call every night to try to win the puzzle that those watching at home could try to solve. Once, when he got through, there was a voice on the other side of the line, exclaiming he had won! But neither of us knew our address, so the prize went to someone else. He would roll his eyes at me because I loved to read but was secretly proud of me when I did good in school, even though he struggled with learning. And I always gave him the last bite of whatever we were sharing.


I would comfort him, and he would comfort me.


We were all we had. And for a short time, it was all I needed. And I loved him fiercely. I imagine I always will.


Maybe that is what life is all about. Feeling the good and the bad. Being grateful for what you do have, instead of focused on what you do not. And love….


Life should always be about loving those around us, even with the risk of losing them.


And from now on, I will be grateful that I had the privilege of having had the best big brother EVER!


❤ Matthew Wild

he makes it look easy…

145 Death Quotes

He makes it look easy…

A slow procession of a death march, with no end in sight. If death comes for us all, why are so many left shocked by its suddenness?   The grief of not having enough time to do the things that were desired, or the time to finish all those projects, where in the end, it mattered very little.  He seems to be at peace with his past, the experiences he did have and the little time he has left.  He has embraced the idea that his time is limited and views each day as an added bonus, when so many have passed through our lives and left, their time at the end was filled with immense sadness and despair.

The losses continue to pile up, and yet he moves through his day with a quiet acceptance of his situation.  He never complains, even if it would be an appropriate response to rage, or cry or wail at the slow and steady losses he has experienced all these years. He seems to accept the unfairness of it all because who ever said life was fair?

He is patient with those around him.  We see to his every need, and as those needs accumulate, he waits calmly, trying to explain in detail the exact spot he needs adjusted, or scratched, or seen to. The food that is carefully brought to his mouth, the bites smaller and the drinks taken more carefully from the hands that feed him.  The many times one of us were too slow and he is left mortified at his inability to control his bodily functions, as he apologizes for the mess.  Trying to assure him that it isn’t a problem, and quite honestly, it isn’t. Trying to find humor in a difficult situation is one we have all learned to master throughout the years.

He intentionally does everything within his power to make our life easier. Shouldn’t it be the other way around? When my patience has run out at the constant barrage of needs, he accepts that this is where we are and lets me find space to refill and recharge. When his patience has run out, he asks to lay back and meditate, pushing the negative away from him, and asks for the positive to fill his soul.  I am jealous of his strength.  And his ability to be still in a world filled with unease.

The immense guilt I feel at not being able to be more, do more, is often overpowering, and he will remind me that no one should have to be a caregiver 24/7.  No one should be expected to carry it all alone, and yet I feel like a failure because he carries so much, and I feel as if I am not keeping up my end of the bargain.  How can he be so accepting, and I am the one who feels such anger and sadness?  I never said I would become his caregiver, nor did he expect me to assume the role, but it is where I found myself.  

I did make a promise to be by his side throughout this journey.   In the beginning, I felt only I could care for him the way he needs. I learned a few years ago, no one should carry this alone, and this would become a marathon, not a sprint. I still struggle with asking for help, or creating boundaries for myself to stay the resilient one.  I have learned there are times to step away and let others fill the role of caregiver and take time to fill my soul so that when I return, I can continue to love him and care for him the way he needs.  I am learning to say “no” more often so that the bitterness and frustration are avoided later.

I have spoken and listened to other families experiencing our same struggles.  The sadness and the anger that is expressed by their loved one who is dying is just as deep as the person caring for them. Quite often that anger is directed at the closest people around them, which would seem by many outsiders to be a justifiable response during times like these, and yet he seems to have found a peace and acceptance from early on with this damn disease. 

I am horrified and appalled at the behaviors of both caregivers and the persons dying, and yet I am also often not surprised.  They are each carrying such a heavy load and feeling as if they are each marooned on separate islands. The loneliness and solitude felt by both are only experienced greater when they don’t communicate or don’t know where to lay those emotions down.  Each side feels grief, and guilt and a desperate urge for it all to be over…yet knowing when its over, the finality of it all feels daunting and unknown for both and fear is an unwanted addition.

I have felt the waves of intense grief, anger and despair.  Days where it engulfs me, and other days where these emotions pool around my feet. I lean on him, needing his strength and his calm.  It feels so unfair that I am not the strong one.

He makes it look easy…

#uncrushablespirit

its the little things this time of year…

75 Best Christmas Quotes of All Time - Festive Holiday Sayings

It’s such a small thing really. Insignificant. Not even worth the effort to think about in comparison to how this entire year has gone.

Yet, there it is.

One more chink in the armor. And just one more reason to wonder if life constantly takes instead of gives. 

Maybe this is just the way it goes? 

If I reach down deep in the memory banks, its there. That feeling that comes with nostalgia and reminiscing

The way things used to be.

Such a fleeting memory, fuzzy and hard to grasp at…

It was the early 1980’s. Smoke hung heavy in the air.  Music playing from a  large wooden console, the old-style turntable set into a curio or cabinet of some sort.  Open the cabinets and pull out records or an old photo album.  There were shelves of photo albums, and this is where the overflow of binders were shoved when family needed a place to set their drinks or plates down.

The tree was in the middle of the large window.  Cousins running everywhere, with aunts and uncles talking over the crescendo of the melody.  Grandpa sitting in his favorite chair, scowling and holding his beer, trying to listen in on the various conversations, but the noise simply drowned out the words, so he simply held onto his goatee with his three fingers, tugging repeatedly and looking as if he were deep in contemplation.

The missing fingers were always a source of anxiety for the smaller children.  That and the eye patch.  Grandpa looked like Colonel Sanders, yet instead of smile, he more often wore a frown.  I never did find out what made him so cantankerous, but thankfully, he never scared me.  His blue eye would twinkle when I would run up and hug him and give his cheek a quick kiss before I scampered off, showing off my dress, and I am sure the mud stains that came with a sister trying to keep up with her older brother.  Yet, Grandma… was an angel.  Always soft and gentle, and smiling at the chaos and commotion that were her children. All the babies, toddlers and little ones were drawn to her.  I was no different.

I was often reminded of how I was the baby of the baby of the family.  Somehow, I felt as if that meant I was different…special.  Then again, my grandmother had a way of making you feel as if you were her favorite.  And deep down, I genuinely believed I was.  It never occurred to my young mind that she had the gift of making all of her children, and grandchildren and yes, even her great-grandchildren feel as if they were her favorite.

Of course, clearing away the smoke, and the noise, and looking at the scene from an adult’s perspective, I can see the reality of what probably was.  The adults drinking whiskey, tired from working too hard.  The kids oblivious to the stresses of their parents and showing off their new Christmas treasures.  The smell of beans and stale beer, in a house that I now understand to have been so incredibly small.  Yet, when I was young, it certainly never felt that way.

I felt safe…and warm…and loved.  I felt the excitement of Christmas, and the tree and the family all together.

And that is what seems to be missing this year.

I can’t remember very many Christmas trees or holidays of my youth. Honestly, I think my mom tried for a few years after my father died, but it was never the same.  I can’t blame her for simply giving up after my brother died several years later.  I don’t think I could have faked a cheery holiday either.

But that feeling, the one I felt all those years ago. That’s the feeling I try to recreate every year since I had children of my own. 

As silly as it sounds, it all starts and ends with a real Christmas tree.  Not just any tree will do either.  It has to be a REAL tree.  And there is a strict protocol of how to choose the perfect tree.  I have to smell it!

That’s all really.  It has to be BIG, to the ceiling BIG and fluffy and full… and it has to SMELL like Christmas.  No matter where I am, or what is going on in my life, when the holidays approach, it is the one thing that can pull me into the Christmas mood.

While I love hosting parties and dinners for family and friends, the holidays just don’t feel like they have truly begun until I have taken my three children to hunt down the perfect tree for the year.  They moan and groan about the process, but always seems to be smiling and into by the time we have it picked out.  Although, since my household is not considered a democracy, I always make the final decision about the actual tree we end up bringing home.  In my mind, its only fair.  When they have their own families, they get to create their own traditions. In my household, it is my sniffer that chooses the specific tree.  Through the years, we have tried various techniques of finding the epic tree each year; a tree lot where proceeds help families in need, a tree farm, and yes, one time we even tried to pick a tree from a grocery store (pure blasphemy in my mind!)

So really, in a year like 2020, it is just one more thing to have taken away.

This year, there will be no holiday parties.  No dinners to host, no wine by the fireplace, sitting in the dark and breathing in the scent of the forest, and remembering back to when, for just a moment in my life, I had perfection.

Why am I even sad? It really isn’t supposed to be that big of deal in the whole scheme of things.  After all, his heart was in the right place. Matthew wanted to ease my stress and burden by ordering a fake Christmas tree.  He said it would be easier, and less to worry about.  I grudgingly agreed.  This year has already felt as if it is taking forever to get over.  Why not do things the easy way this time?

I thought it wouldn’t matter.

Don’t get me wrong. Once it was put together, the lights already prearranged, it is a beautiful, large tree.  The kids even argued and fought over the placement of each bulb, just like years past.  But it hasn’t quite been the same.

Christmas is nearly here.  I am trying, really, I am.  I am digging down deep for some sort of Christmas spirit or joy or happiness, but it seems to be farther down than I have ever had to dig before.

Oh, I am sure I will pull it together soon enough.  I doubt the kids will even notice really.  I will slap a smile on my face, and squeal with delight as they unwrap the presents.  I will find gratitude that we have stayed healthy this year.  I will find joy that my children are happy and relatively unscathed by the collateral damage of this never-ending year known as 2020.  I will even be sort of glad I didn’t have to worry about watering the damn tree every couple of days, or the constant sweeping of the needles as the days lead to weeks of dried out dead limbs.

But for now, I just want to be sad.

I want to be sad at the people I have known, some I have met or spoken with and who have since passed this year. I have seldom gotten on social media these last several months, and each time I pop on for a quick moment, I see another friend or acquaintance, a person I never would have known existed if it weren’t for social media….and if it weren’t for ALS…and they are now gone.  I hate the constant reminders, and the constant losses, and the constant feeling of helplessness.

I want to mourn the fact that my children are almost grown, and I don’t have much more time with them before they leave me.  I hate that they will only really remember me as their mother who cared for their step-father who had ALS.  I want them to remember me as loving and fun and a larger than life, full of energy mother who loved them more than they could ever fathom…not someone who was constantly tired. 

I want to wallow in what a crappy year it has been, and while I have so much to still be grateful for, I really just want some good things to happen.  I don’t want to look at the news, or politics anymore. I don’t want to know what side of the divide everyone is on. I don’t want to see the injustices and anger and lies being spewed, and I certainly don’t want to talk about viruses, diseases or death.

And honestly, I just want to be pissed off that I didn’t get a real damn Christmas tree!

It is silly and stupid, and I know it.  And for just a moment, I just want to stomp my foot at the unfairness of life. Of how it constantly chips away and takes the little things.  And it has taken more this year than it has the right to take….not just from me, but from so many others.

It may just be a tree.  And yes, I know it is more than most people get, or will have this year.  I get it. I am beyond grateful at the ability to even be able to buy a fake Christmas tree.

But I need it.

I need it to remind me of the warmth and love that families have, and the memories that can be shared.  I need it to remind me of where I came from.  And what I can still help to create for those around me.

And honestly, I love the way they smell…it brings back happy, and sweet memories of when life was simple and kind. I need more of those memories now more than ever.

So, cheers to 2020…a year of many lessons, trials and tribulations.  May we do better, try harder and love deeper in the coming year.

But till then, I will be over here…pouting about a damn tree…

warriors…

Tonight is not about me. Tonight is not about my journey, or those around me…at least not in regards to ALS.

Tonight is about her.

Her bravery, her strength. Her beauty and love that shines through her eyes and her smile. She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.

And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting. They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward.

They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.

She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,

“Hello world, look at me!”

they shine brighter than any star. And she has always had a presence about her, the kind of natural charm that most women envy and men desire. But tonight, she stood up, and shone bright for all the world to see.

I am not moved to tears often and this one left me rocked to my core.

Kristina ~ I am so incredibly grateful you are in my life. You are all that any woman aspires to be. You are brilliant and kind, and you show grit and determination when others would have buckled by now. Trust me, telling your story is not vulnerable. It is gut-wrenching…and it is beautiful.

The world needs more women with your strength and your grace. I can only hope to one day shine as brightly as you do…

>>>>>>>Here is just a small piece of her story…>>>>>>>>>>>>>>>>

How do you get through two radiation treatments in one day? Two spa treatments, of course! That’s the positive side.

Here’s the ugly side. One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired. There’s no physical reason. It’s definitely mental.

Every day you go in, partially disrobe and lie down on a hard table. Arms are stretched above your head, goggles on. The entire time three to four people move about the room, aligning you, adjusting you, drawing on you, radiating you.

Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.

“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”

And repeat multiple times. The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t. When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.

I’m frustrated when I don’t hit the precise spot they want me to hit. So frustrated that sometimes my eyes well up. When I feel the water trickle down the side of my face I get even more frustrated.

“Hold it together.”

It’s become my inner chant.

It’s all quick. 15 to 20 minutes most days. But it seems longer. I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day.

It’s exhausting. I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold. Then I’m done. I hop off the table and wave my tingling arm.

“See you all tomorrow”

and I go put on my clothes. I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go. Some days I just walk out as if nothing happened. Other times I linger to dry my eyes.

I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself

“Hold it together.”

It works. I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God. That’s daily radiation.

Although today I slipped in two glorious spa treatments … just because. Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight.

Thank you T. ❤️

So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer. I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors. I think about all the women who will go through this after me, not just the radiation but all of it. They don’t yet know it. But they will be warriors, too.

#igotthis❤

She has grit…

20 Quotes to Inspire Courage + Grit — Gillian Tracey Design | Branding and  Web Design Columbia, MO

She has grit.

I haven’t met her, but I can hear it in her voice. They are barely diagnosed, just over a month ago. She has small babies. This couple seems so young. Barely in their thirties. At least, they seem young to me.I remember how hard I thought it was to raise three babies before ALS. Now I envision just how much more difficult her life has become, and I can’t be the one to tell her.

She assures me she has a large support group around her. I try to convey how important it is that she learns to accept help now, before they need it. Because as the road becomes more difficult, many people who convince her of their support and love will no longer be able to help. And the idea of asking for help will become harder, as more and more people avoid the promises they thought they could keep.

Her baby is in the background, a small voice. Her patient reply, with love in every word.

Do I tell her how exhausted she will become? Do I tell her that I understand the weight that has been placed on her small shoulders.

Instead, I try for reassurances.

There are resources, and support groups. There are foundations that can help alleviate some of the stress, but really, this will all be for her to navigate.
I try to remind her that their mindset and partnership together will determine much of how this will affect them. That if they adapt to the challenges, and look for ways to still maintain some semblance of their lives, that they will learn to live with the disease instead of simply learned to watch as he slowly dies from it.

I recount the numerous travels that Matthew and I have ventured on, both with children and without. The escapades, both good and bad, that we have gone on have helped us find beauty in a difficult situation. I tell her that anything can be accomplished if you are willing to adapt to the situation around you. Do I even believe the words coming out of my mouth? I guess it depends on the day.

Her voice is strong.

She confesses to breaking down when no one is looking. He is wearing himself out, trying to remodel their home, and finish the landscaping while he can still move. He thinks he is doing the admirable thing when all she wants is more time with him. The projects around the house no longer seem that significant to her. Yet, for him, he now knows his time is limited. And the urge to suddenly complete all those annoying honey do’s seems more relevant than ever before.


I want to tell her this will be both a blessing and a curse. They will soon learn, perhaps finally fully understanding that his cards have been played and this is it. This is their journey. Together, yet completely different. They have the opportunity to let go of all the trivial stuff, to stay present, and enjoy each moment for how they were designed to be enjoyed. The toddler antics, including the temper tantrums will suddenly seem beautiful moments instead of something to be dealt with, or even tolerated through the day. The chaos of toys, and the never-ending piles of laundry will be thought of as enjoyable items that make a home. There will hopefully be more videos, and photos, regardless of her makeup, or weight, or his progression of the disease that will steal his image, creating in its wake a body that no longer resembles the person they once had been. They have the opportunity to lean in and be together for however long they have.

Yet the curse comes in not knowing the speed or the suffering that comes with this devastating hand they have all been dealt. The curse will be in the realization that their expectations of other people around them were misplaced. The curse comes as the sadness builds as she realizes that she will be forced to give up her own life, dreams, and goals to care for him. It will be expected of her, and no one else will step in to offer support. There will only be her. How she feels about that challenge will change for her week by week, hour by hour, minute by minute.

She has grit.

Now hopefully that grit sustains her for the long road she will be traveling down, as she will carry an unimaginable heavy load. There really is no other choice. And that grit will be the only thing keeping her going on most days.

Let’s pray it’s enough….

❤ Matthew Wild

His pride will be the death of him…

His pride will be the death of him.

He has ALS, but the struggles and the stress of the disease were only compounded by an ego that even still, refuses to accept the diagnosis.

He received the news two years ago. A strong, fit man who took great pride in his physical prowess, is tearing apart his family; the stress of the sudden caregiving and his quick progression are taking a toll on his wife. His refusal to ask for help, let alone accept any offers of support. He goes so far as to refuse support and care for his wife. She is seldom allowed to leave his side, and any suggestions for others to help is quickly taken off the table for discussion. His idea of what honor is will be death of the both of them.

Who am I to judge how someone navigates a death sentence?

My role in their lives is simply to listen. To offer suggestions, stories of possible outcomes and ways to alleviate the often-overwhelming medical jargon, equipment, therapists, and progression. When families reach out, my role is to soften the blow, and hopefully offer a ray of light while they are traversing through a blackened tunnel. I often compare and count my blessing as I listen to many stories, and todays was no different. I have heard of stubborn men, but this man may win the prize.

His independence will be the death of him.

His breathing and speech are quickly becoming problematic. Yet when there was a suggestion over a year ago to start learning about feeding tubes, he simply stormed out of the office. He didn’t need a feeding tube. He never darkened that doorstep again. Matthew’s situation was similar in that, very quickly into his diagnosis, it was suggested he have a feeding tube placed. “Just in case” was the suggestion. You don’t have to use it, but it is there if you need it. And by having the feeding tube placed early on in the diagnosis and progression, it becomes simply one more task to see to, but is definitely the lesser of the stressful tasks. Thankfully, Matthew agreed. Less than seven months after his diagnosis, his feeding tube was inserted, and after a half day stay in the hospital, we left and went about our lives. I flush the tube, clean around the tube and could probably replace his by myself if need be. (We have a backup tube in the closet….just in case)Her husband refused to even discuss the option, preferring instead to believe that he would be healed and that his diagnosis was a mistake.

Now, as he is months, maybe weeks away from dying.. choking on his own saliva, barely able to eat or drink for hydration, I can’t help but wonder if he regrets his actions. Does he wonder if maybe having a simple procedure such as a feeding tube could have prolonged his life? At the very least, maybe it could have kept him from starving to death, or dying of dehydration, or pneumonia brought on by choking and bacteria entering his lungs. There will need to be IV’s inserted to help alleviate pain if his veins don’t collapse from the dehydration. Maybe his stubbornness, pride and ego could have been spent on better battles?

His vanity will be death of him long before ALS.

His wife recalls walking into their living room, having left to go grocery shopping. There, she finds him doing wall squats, as his best friend is tossing a medicine ball for him to catch. He is straining, determined to gain his strength back. His refusal to accept the disease and limitations only progresses the ALS. He pushed himself beyond what his body could repair, and two days later, his legs simply stopped supporting his weight. He has never walked again. He has spent the majority of the last year in a recliner. His wife bears the brunt of his ego, and now physically moves him from the bed, to the commode and to a chair, with the help of a manual wheelchair. His pride once again stopping him from seeing a power wheel chair as a resource. He has refused all help to learn how to navigate and adapt.

Matthew texted me, just over a year into his diagnosis. “I am fine, please don’t worry.”

Of course, nobody in the history of being told not to worry actually doesn’t worry! I had been sitting in an evening class, working towards a bachelors degree. I rushed out of the classroom, refusing to even offer an excuse for the disruption. Matthew had fallen in the parking lot, and with my children witnessing his collapse and no way to help, Matthew simply decided it was no longer worth the risk or the potential trauma. He began using his power wheel chair to alleviate any potential falls, and he gave up his last aspect of health and independence. He stopped driving all together.

This man is now on Hospice. He refuses to let his wife utilize the respite care that is offered. Two times a week, she leaves for two hours to play tennis. It is her only outlet, her only reprieve. Matthew is a former Marine. I honestly don’t know what we would have done without the help of the VA. Within two years of his diagnosis, we received four hours a week in aid and attendance. The aid helps with laundry and dishes, and the caregiver helps Matthew urinate in a handheld urinal.

As his disease has progressed, we have gone through so many caregivers, I have lost count. But I know how incredibly lucky we are to have the help we have. I also know how difficult it must be to accept help from strangers for intimate situations such as using the bathroom, but I cannot always be there to lend a hand and it is nice knowing I don’t have to worry about him when I need to leave. I still do the majority of the care for Matthew. I feed him, bathe, shave and cut his hair. I still do almost all of the transfers, and usually push him to eat more often throughout the day than he would prefer. I nag him to get sunshine, and to rest. And I know how incredibly blessed we have been to have in- home health care; therapists that help with range of motion, and a caregiver four days a week for six hours a day. It allows me to run errands, spend time with my children, work from home, and meet families navigating this new world.

I honestly doubt if they had caregiving support daily that he would allow her to have a break…day in and day out. His disease is so far advanced he needs to use a computer to speak, his eyes straining against a foreign software program. He can no longer control his bowel movements and wears diapers to contain the mess. Every day, she cleans him up, repeatedly bathing him, dressing him and setting him back in his recliner. She tries to feed him but it is getting too difficult.

His stubbornness will be the death of him.

I wonder how she has cared for her husband for the last two years, watching the man she has been married to for over forty years slip further and further away from her and not feel such grief and loss. I wonder how she is not scared, after battling breast cancer last year by herself, including a mastectomy to remove any residual cancer, and jumping right back into caregiving, putting herself last, in order to put his care first. I wonder how she is not furious that they are facing foreclosure, losing a business, as well as learning her husband let his life insurance lapse shortly before his diagnosis, since he felt it was a waste of money…how is she not furious that when he passes, she will find herself having to go back to work at almost 70 years old having lost everything they ever worked for in this lifetime together?

His refusal to accept his diagnosis will be the death of him…

I work from home part time. I have income from a rental property. I know I will be ok, even after Matthew is gone. While we are far from rich, we get by. We are able to pay our bills and help others from time to time. I am grateful every single day for the help and resources we have. While not much, it is beyond helpful when I compare our situation to others. There is not a day that goes by that I am not fully aware of how lucky I am that we are not in that same situation. How does she not curl up in a ball and give up, when she realizes that whatever was left of their savings was spent on holistic doctors who “couldn’t promise a cure” but encouraged a three week stay to relieve him of heavy metals in his body. In the end, it only relieved them of the dollars in their bank account.

Matthew relied on his specialists to teach him about the disease. He listened to them and was unwilling to chase potential cures or treatments that had no scientific data to back it up. Her husband refuses to see a doctor, nor learn about ways to navigate and potentially extend his quality of life. During times when I am at my breaking point, I count my blessings. I am beyond grateful for Matthew. His quiet calm, his ability to think of others, and his willingness to learn new ways to adapt to the challenges that he faces every day.

I can’t help but feel my heart break a little when I think of what burdens that woman carries. She is alone in her struggles, even as she has been by his side.

His pride will be the death of him…❤

Freedom can wait…

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The little reminders were everywhere. With a turn of my head, I can see how my life is not like theirs. I am reminded how my life is different. This invisible line that divided my life from before and after seems starker and more pronounced than ever lately.

I can fool myself into thinking that this is normal, but as I drive through town, I can see what so many others take for granted.

The mountains rest gently along the lake.  There is smoke hanging low, refusing to let the tourists see all the beauty that is hidden behind that sheer curtain that has been our constant companion these last several days.  The tourists don’t seem to mind, nor even notice.  They walk the streets of our quaint town, stopping to window shop, or to find a table along the sidewalks for a bite to eat.

This is when I feel it the most.

I want so desperately to pull my car along the street’s edge and to walk towards the water.  To feel the warmth of the sun, and the carefree last days of summer.  To lose all sense of time or responsibility and to meander along at my own pace and on my own path. I want to walk along the pathway that leads to beaches, and children playing. The park where strangers smile at each other as they pass.  Those out strolling, a dog at their side.  The boys shooting hoops, or the teenagers rushing past towards the skate park on a precarious sliver of wood on wheels, to show off their latest attempts at fooling gravity.

I continue driving.  Each red light, I glance around.  There are new stores I hadn’t noticed before.  The local watering holes are full of regulars; bikers with their leather and fringe, the retired who have claimed their seats just short distance from their classic cars, their pride and joy. The ladies sauntering back and forth, hoping to catch an appreciative glance their way.  The families from out of town, managing strollers and diaper bags, hoping to shield their young one’s eyes from the dangers of that side of the street. Young tourists, holding hands and strolling along, imagining what it could be like to build a life in this idealic, small community.

I yearn to have the freedom to stop. To walk with those strangers on the sidewalks, to see the town through their eyes. It is not the people that I want to lose myself in but the freedom to come and go that I crave. The idea of being able to go where I want, with no agenda, or responsibility waiting for me. Instead, I quickly glance at the numbers on the dashboard.

I am late.

My son is chatting happily beside me, not noticing that I am frustrated with every red light.  It is a gift and a curse that I have, to be forced to stop at each and every damn light that I happen upon.  I should take the time to slow down, to breathe, to remember that this too shall pass.  Instead, my anxiety climbs with the ticking of every minute I am forced to wait, and to notice how my life is not like theirs.

Always, I am planning, adjusting or bending to what other people need or want.  I have accepted that this is my journey, this is my path. Yet the days when I get just a moment of respite or freedom from a life of ALS, I instantly feel it.  There are days when I feel as if I am confined in a tiny box, ready to escape at a moments notice.

Yet I also know what that means. I know what happens when I am no longer caged, bound to the ties around me. I know what happens when I am no longer living a life that is shrinking smaller and smaller with every year that passes. When I am finally free, it will be with a broken heart.  I will have lost something precious once that freedom is gained.  Instead I continue to fight these feelings of discontent when they pass over me. Instead, I choose to stay…and I will remind myself that these feelings are temporary, this part of my life will one day be over.

One day, he will be gone, my children will be grown and I will have the freedom to come and to go at my leisure. No one needing me, or calling out for me to take care of their needs and their wants.  One day, I will have nothing but time to focus on me. One day, I will no longer be needed. 

And this thought terrifies me…

The sacrifice we all make

Gayle Forman Quote: “Sacrifice, that's what we do for the people ...

Welcome to our world!

Please, come in and make yourself comfortable. Now I realize that at this very moment you might be feeling a bit out of control.  All the feelings floating throughout your body are completely understandable.  After all, you have been told that there is something that is out there… Something that is completely unseen, but it is deadly.  And this will, without a doubt, completely affect the rest of your life.

These are difficult times, for sure.  I can also relate to some of that fear you might be feeling.  The fear you are feeling is similar to what we were feeling that February, late afternoon, all those years ago. Matthew was diagnosed with ALS five years ago. A disease that is still untreatable, uncurable and unstoppable. No matter how much I read, or tried to prepare, the fear was still there.

Five years?  Can you believe it?  Time kept marching on, whether I wanted it to or not.  And still, the silent, and invisible disease known as ALS, is unstoppable.  It continues to move silently, wreaking havoc on his body, as well as the thousands of other bodies around the globe. Matthew has passed the “average” time that most people live with ALS. The average lifespan for someone diagnosed with ALS is three years.  He is now in the 10% of people who live past five years.  Only 10% percent of patients live past 5 years.  Only around 5% to 7 % live past the 10 – year anniversary.

This time might be a little uncomfortable for many of you.  Trust me, it’s not every day that you are told that the chances of you losing a loved one are so high. This unknown has the potential to affect you, and everyone around you in some way, in the not too far distant future.

This time is scary, no doubt about it. Thankfully, you do have some control in how this plays out. Unfortunately, for caregivers and people with what they call “underlying conditions,” our anxiety just shot up about a million times higher.

We already live a life of quarantine.  We stay away from people who are sick, even when we risk offending our family members and friends who may not understand that a simple cold or the flu bug can potentially kill the person we love.  We seldom went out in public for months before this virus became the sensational talk of the town. The effort it takes to go out wasn’t always worth it.  To make matters so much worse, there is now something out there that is deadlier than a flu bug or cold that we have to prepare against. So our days of going out are far less than ever before.

I have reached out to so many other ALS families, asking how they are doing.  The almost funny part about this entire situation is that if you are a caregiver or a person living with a terminal disease, or suffer from a compromised immune system, then you know our  life really hasn’t changed all that much.

I imagine for most of you, the idea of being cooped up in your home for weeks seems impossible and horrid. I stopped being excited about Friday or Saturday nights years ago.  Depending on the weather, the season or even if Matthew was fatigued or feeling anxious about being in public, we were housebound. Over the last two years especially, our life has increasingly become more and more reclusive. Some of that is because of the disease, and some of that, I assume is because of how we are mentally handling all the parts that aren’t talked about when it comes to a terminal illness.

I picked up the phone to call a dear friend the other day. I asked how her children were doing. Her answer; the only difference in their lives are that they aren’t going to school. Other than that, they have been housebound for years!  YEARS!  At one point during her husband’s illness, she was begging to leave her house for one hour a week.

Yes, you read that right.  ONE HOUR A WEEK!

She spent years housebound, caring for her dying husband and her children.

I have another friend whose husband was so stubborn that he refused to use a power wheelchair.  Even though he had lost the strength to safely walk long distances. To compensate for his stubbornness, she would maneuver him carefully and slowly, every single day into his recliner, help him eat, use the restroom, and attend to his needs at his beck and call.  She was housebound for years as well. She would hire caregivers to help out, but the process of the paperwork, and training someone to care for her husband, and what to do if he choked and could they safely help him without hurting themselves or him became a serious point of contention. I imagine it was tedious as the wife, because after all the effort of hiring new caregivers, it often resulted in them leaving after a few weeks, if they even made it that long.  Once he finally agreed to using a wheelchair, they found a little freedom for a short while, at least.  And for a short while, photos of their family enjoying restaurants and some lovely drives to look at the scenery were once again on their Facebook feed.

They are back to being fully quarantined, while she is the only caregiver, and mother of two young girls.  She sees to all their needs, and no one will be able to cross their threshold for quite some time.  Maybe it’s a good thing she was already well trained in being housebound for weeks at a time?

Several other families said that besides worrying about a shortage of toilet paper, they really don’t have the opportunity to go out anyway, so a quarantine situation simply means that they can’t allow anyone into their homes.  They hadn’t really changed anything else in their lives, and no one really came by to visit anyway.

Where am I going with all of this?

Your world is turned upside down.  You are being asked to completely rearrange your life.  You are shut off from your friends and family and there is no where to go. You might be angry, even disbelieving what is happening.  There has to be a better way, right? Maybe you are sad at the thought of your livelihood completely changing, and you have no idea what this will look like once it is all over.

Trust me, I get it!

Once Matthew was diagnosed with ALS, I had this set of preconceived notions.  I thought I knew how people would react, how they should help and how the disease would progress. I planned for every possible scenario…and yet, no matter how much I worried and stressed about all the possible outcomes, it still never played out the way I thought it would.

I am scared.

This virus will absolutely be fatal to my husband. No doubt about it. ALS has affected his diaphragm, and his lungs are only functioning at about 30% of a normal person’s capacity as it is.  I have a very vivid imagination, and the thought of an ambulance taking him away and I would never get to see him again or be there for him is petrifying.  Add the absolute panic that this will affect my children, and I am beyond a doubt, not liking the images playing through my mind daily.

I am scared for my children and my parents and for all my loved ones.  I can absolutely admit that with no shame.

However, I have learned that I have little control in how this plays out.  We are only letting a select few enter our home, and even that may come to an end soon.  We are trying to give scientists time, and the people who know what they are doing precious time.

Time.

It has always been the enemy for us.  Because as the years go by, it means Matthew would be that much closer to becoming a statistic for an ALS chart. But now, we are hoping and praying for time to slow down once again. Not just for us, but for all of those who are out there, trying to protect, and to stall an invisible enemy. Time for resources to become available, and time for people to rest and heal, come together, and most importantly, work together.

And now, this time…. You are getting a small snippet of what it is like to become a full-time caregiver. You are getting to experience just a little bit of what it is like to live a life caring for someone else. To have no ability to leave, no one else to lean on. To lose connections with your friends. To have your world shrink.

The only difference is that this time, we are all living the same experience.  Many caregivers had watched the lives around those around them continue, as theirs had progressively shrunk. They watched with envy, maybe even jealousy and a bit of anger, as those around them continued with their lives, unaware, as the caregiver watched from the sidelines, coveting their freedom. This time, everyone around us will be making sacrifices, and it will not be an easy transition.

This time, you are now in it with us.  And I can’t tell you how sorry I am that you are experiencing this. That we are all experiencing this together. And I can only hope that in time, we will see that this sacrifice was worth it.  The same sacrifice that every caregiver makes when they can no longer simply walk out the door or walk up a flight of stairs. To come and go, to experience life in all its beauty, that so many take for granted on a daily basis.

Keep searching for gratitude, look around you and remember the blessings you have. And remember your “why.”  Offer help if you can, and snuggle in with those in your lives.  Who knows how long this will go on. But remember, it will be worth it if you remember why you are doing this.

We sacrifice to be there for those we love the most.

❤ Matthew Wild

a man and his dog…

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He was sitting against the wall, a blanket spread out beneath him. His dog sitting next to him. Maybe you didn’t see him. He was just another fixture, among the pumpkins and the vending machines.

Maybe, when you did notice him, you got that uncomfortable feeling in the pit of your stomach?

Without making eye contact, you changed your the path you were taking ever so slightly, so as not to intersect with his. A subtle move, but this way, you can look anywhere but towards that direction, and head into the warmth, safety and comfort of the grocery store chain, pretending not to have seen the homeless man sitting near the entrance.

I did notice him.

I walked towards him.

The crisp air has that bite to it. It is going to rain. My feet move faster, as I try to get under the protection of the building’s overhand. As I get closer, his dog gets up, slowly, as if stiff from arthritis, tail wagging at my approach. I kneel in front of the old dog, scratching that spot on her back, the ever out-of-reach area that all dogs enjoy getting some added attention to.
I smile, letting the dog break the ice between us.

“Her name is Allie!” He tells me that its short for “Alcohol,” because she is a “liquor.” I give him one of my sideways smiles, it’s hard not to when I can see he is giggling at his own inside joke.

“Can I get you anything from inside?” I ask him.

The dog looks well fed, but I offer to feed her as well.
The toothless grin widens, as if in disbelief that I stopped to offer him something. That I noticed him.

“Maybe a cup of coffee or a cup of soup?” He seems as if he may be asking for too much and doesn’t want to offend me. His face is apprehensive.

“What about her?” I ask, jerking my head towards his dog.

His smile widens even more, the wrinkles around his eyes deepen as he tells me she has plenty of food. Judging by her extra padding, I nod my head, chuckling with him in agreement.

I make my way into the store, grabbing the shopping cart. I never remember to write down what I actually need, which inevitably leads to my overspending and grabbing items that aren’t necessary. Wondering if I should grab him a beer or a pack of cigarettes, I scoop up a to-go container of chicken noodle soup. Grabbing far more crackers than are actually necessary, I pile it into a haphazard stack on the child’s seat of the cart. I wonder if the cashier will make me put some of these saltine crackers back, as they spill over. I make my way around the store, grabbing what I came in for, and items I don’t really need, but I fill my cart anyway.

I grab a bottle of water and glance around for something else that might tide him over. Without teeth, I imagine it might be difficult to eat the sandwich I picked out. I grab it anyway. And a package of M&M’s.

I ask the cashier to bag these items separately.
She inquires if its my lunch break. I simply tell her no. I don’t feel like telling her my motives of packing a lunch. She does tilt her head, questioning me, as I grab a $20 and stick it inside the bag.

The great pile of pumpkins greets me as I exit the store.
I feel slightly panicked when I can’t see him.
What if he was asked to leave? Maybe the manager asked him to get off the property?

No Loitering Allowed!

I make my way around the concrete pillar, and there are his boots, legs stretched out in front of him. Worn and tattered, along with his old cargo pants, he slowly comes into view. This time, the old dog just wags her tail, too lazy to stand and greet me again.

I kneel beside them, as I hand him the plastic bag full of goodies. He glances up at me, looking astonished at the items in the bag.

His name is Joe.

He has blue eyes, and a scraggly face that is kind. His hair is thinning, and its dirty, matted to his head. He has a warm jacket on, but I wonder if the cold from the concrete is seeping into his bones yet.

He tells me how he was living over in the trees across the street. He points with twisted fingers, to the lot near the intersection. Unfortunately, the owners had the trees thinned, so he had to move again. There is a “pallet paradise” up the road a way, that he and his buddies built. He shakes his head in disappointment. He knows all his effort will be for nothing soon, as all the vacant lots are being cleared for new growth. He tells me that there aren’t many places left for him to pitch a tent anymore. He likes to hide in the trees, where no one can see him. It is getting harder to find nooks and crannies to make a camp.

If you are wondering if he has been homeless long, the answer is yes.

He has been homeless for years.
I ask him if he has tried any of the shelters.
He laughs, shaking his head, more out of disgust than anything.
Every shelter tells him he is welcome, but that his dog is not.

“Would you give up two of your children? Because that is what they are asking of me!”

I agree with him.

I understand more than most that when you have very little, the things that you do have will have more significance and meaning in your life.

I tell him about several of the shelters I do know of, asking him if he has tried them. He tells me of the ones he has tried, and unless you are willing to follow their exact protocols, they will not accept you. I ask about the place on 2nd street, if he has gone in there, to at least get some food.

Again, he tells me that he has made the effort to venture in, but that they kick him out in the evening. I ask what he does to stay warm. His shoulders pull back with pride. He stays warm because he has a heater in his tent. He smiles that toothless grin again when he sees my astonishment.
Not many of the homeless people have means for additional warmth.

I glance over my head.
A man on a bicycle is riding by.
They give each other the perfunctory nod.
A silent gesture of hello.

I realize that the man on the bike is more than likely homeless as well, though he looks far cleaner than Joe.
Music is playing quietly on his little radio he has sitting next to him, and he pulls out a pouch, stuffing his pipe with tobacco. Most of his belongings are stuffed into a duffel bag beside him.
I introduce myself, shake his hand and wish him well.

Who am I to judge if he is happy or successful?

It seems to me that a man, with a loyal dog and his beautifully carved tobacco pipe, may have more happiness than many of the strangers rushing into that store, refusing to acknowledge him, simply because he doesn’t live by their rules.

I feel a twinge of sadness that he must adapt in order to be considered worthy enough to be helped. Then again, isn’t that the way of the world?
We adapt, or we don’t fit in.

Joe is an outsider. He thumbed his nose at those who would give him charity, but charity by their rules and requirements. He is loyal to his dog, an animal that he told me has kept him safe from other humans and animals wanting to do him harm.
He will never leave his trusted companion simply to look out for himself.

Many people probably view him as crazy, mentally ill perhaps. And maybe he is. I imagine many are scared when they look at him. He doesn’t act like everyone else. At the very least, he makes people uncomfortable and on edge.

His needs are far simpler than most. I don’t know his story. I don’t know what choices he made, or what situations life threw at him to have put him in the situation he is in. I simply offered a smile, a conversation, eye contact to let him know that he is human. He is worthy of being noticed on a chilly fall afternoon.

We are all worthy of being noticed…

 Matthew Wild

and still, she persists…

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And still, she persists…

The buzzing of the alarm is heard off in the distance. Her children’s eyes grow large with worry.

“Hurry Mom, dad needs you!”

She rushes into the bedroom, grabbing the silicone wedge off the nightstand. As gently as possible, she pries his teeth open and off of his tongue. All the while, his eyes are burning in anger at her. She didn’t come fast enough. His face doesn’t move, but it doesn’t need to. She can see his frustration in his eyes.

After she fluffs his pillows and readjusts his body, seeing to all of his needs, she can hear the children in the kitchen.
Moving from one fire to another, she rushes out the door to see what the next emergency is.

And still, she persists…

They are crying. Looking up at her with tear-stained cheeks. They want to understand why their beloved pet had to die. Her heart breaks. Not because the cat was killed on the road in front of their house, but because she knows that soon, these faces will be searching for an answer as to why their father had to die. Will she have the right words or be able to comfort them when that time comes?

And still, she persists…

Her eyes are bloodshot. Its after 2 am and finally, the dishes are put away. Her husband is sleeping, the children are tucked in and safe. She remembers that the only food she has had all day are the few bites from a package of crackers her baby had nibbled on, and the constant flow of Zipp Fizz, the only source of caffeine that keeps her moving.

She pours herself a bowl of cereal. Stifling a yawn. Her head heavy with exhaustion. She can’t remember when the last time was that she showered. She contemplates skipping her only meal of the day to take a hot shower, but her stomach is growling, her head is pounding, and she needs to lay down soon. The kids will need her in the morning as they get ready for school. Four blessed hours of sleep, if she is lucky.

And still, she persists…

Pulling and twisting his lifeless and limp body, she maneuvers him to an upright position. Trying hard to avoid pulling the hose that is attached to the mask, that is attached to his face; she uses all of her strength to pull him up and over to the wheelchair. The bedroom is small. So little room to guide the chair around. The bathroom, even smaller and more difficult.

The sweat beads along her brow.

She grunts, using her back, her arms and her legs to pick him up and place him on the toilet. Trying to maintain his dignity, she wrestles with his body, and the damnable hose. Wishing he could remove it for just a moment but knowing that his body no longer takes in air without its assistance. Trying to find a different solution, but knowing he will simply refuse her suggestions, she lifts once again, and repeats the entire process.

And still, she persists…

The voice is monotonous, but it doesn’t matter. She knows him well enough to know that he is angry. He is always angry. He hates this disease. He hates how he feels cheated. He wanted to do so much in this lifetime. It isn’t fair.
He takes out his anger on her. He uses words like a killer wields a knife. Piercing her heart with razor sharp words. He places the blame on her. He points his frustrations out on her. As if she were the reason he was diagnosed with ALS. As if it is her fault that the doctors never took his symptoms seriously. As if it were her responsibility to keep him happy and healthy, and she has failed him once again.

And still, she persists…

Was there a time when they were happy? She can’t seem to recall anymore. She can recall their wedding. She married a man, who was still so much a child in his inexperience, and his desires. Wanting to please him, she put her dreams on hold. Knowing that to make a marriage work, there had to be sacrifices that needed to be made. She never saw that she was always the one making the adjustments, in order to keep the peace, and because she loved him with every fiber of her being. Now, there is anger. She looks for the happy memories. The flashes of happiness, Traveling and exploring, his excitement with every new toy: a gun, a four-wheeler, or even the snowmobile. He was happy when he was out doing things…anything. Now, he lays in his bed, staring at a screen, pushing the world further and further away. She tries to show her love, with a caress, a smile. But still, he pushes her away. Every day, she tries again. Hoping this day will be different, and he will see how much she loves him, regardless of the disease that has ravaged his body…and stolen his happiness.

And still, she persists…

ALS has taken so much from them both, and yet she still searches for joy and gratitude in her day-to-day routine. She is exhausted but smiles when her children are excited in their adventures and discoveries. Her children are happy, and even though their father is bed-ridden, she continues to create a lifetime of happy memories. She manages to keep them occupied and distracted from the world that is just down the hallway from them. She hugs their hurts and washes away their fears. She carries a heavy load, but you will never hear her complain.
Her smile would break your heart if you understood what kind of sorrow and sadness she hides from the world.
Someday, she knows her life will look different. Someday, she will no longer be a caregiver to a man who cannot find beauty in his small world. She tries to encourage him and to remind him that there is still joy to be found, but he pushes her away.

And still, she persists…

Someday soon, she will have to look for a new routine, and find new dreams to dream. Hard work doesn’t scare her. In fact, she looks forward to the day when she can leave the walls of the house she is trapped in, and to have goals and aspirations once again. She catches herself feeling the familiar twang of guilt when she imagines the life she might have after…She stops herself just short of going too far in her daydreaming…knowing what that means for her husband.

And still, she persists…

She is the strongest person I have ever met. Her heart is pure, and she is beautiful, both inside and out. She doesn’t realize her strength, and she can’t see her potential. But someday, she will look back on these moments and realize that she accomplished more than most people will in a lifetime.

Long after the ALS memories and painful struggles associated with the disease have subsided…only then will she see what I have seen all along. No matter what life throws her way, I know that she will continue to do remarkable things. Her children will one day understand her sacrifices, and they too, will stand in awe of the strength of their incredible mother.

And hopefully one day, when they are grown and living lives of their own, they will know their own strength because of one woman who continued to push and fight for them, regardless of the incredible task set before her. Until then, she continues to get up, weary and almost to the breaking point.

And still, she persists…

 Matthew Wild