loss – ALS Fact of the Day~

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

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…

an impossible decision…

Quotes about Decision and love (120 quotes)

The moving truck has already come and gone. By now, they should have reached their destination outside of a suburb in a large metropolitan Texas city. They will have already begun unpacking boxes and assessing the situation. Having shoved various items haphazardly together, she is probably wondering if it will even be worth the time to unpack everything, or if they should simply choose the bare essentials.

It was a last-minute decision. Even down to the day the truck was scheduled to arrive, they still hadn’t fully committed to going back. The worry was not in asking their renters to move on such short notice, as they found themselves with an impossible decision and needed a landing place if they were to move back. After all, even up until the very last moment, the situation of whether they could rent their home out or not would be the least of their concerns. If they chose not to go back, they could always find new renters.

It was leaving here that would be the difficult decision.

She would be leaving a piece of her heart behind.

I have spoken to her several times over the nine months. She has been carefully weighing her options and waiting. Maybe somewhere in the dark recesses of her mind she was hoping that the situation would not be as grim as it slowly came to be.

When the final diagnosis was given, the reality that something would have to be done came to the forefront of her mind.

Her mother was dying from ALS.

She tried to look for signs, something that would push her in one direction or another. She called me, asking if we had a home available.

We do not.

She asked if it would be easy to care for her mother in a home that is not her own, and because of that, would making changes to the floorplan even be an option.

It was not.

When her husband was laid off from his job, and her employer demanded she work remotely, she took it as the final sign. They would move back to Texas to care for her mother. Between a world-wide Pandemic, and the uncertainty in her husband’s employment in a small North Idaho town, it seemed maybe this would be the best decision.

But was it?

Her teenage son is navigating his senior year during a time of stress and precariousness in every possible way. He wants to attend school, because online learning is hurting his GPA, and he misses the social interaction with his peers. He is even willing to wear a mask all day, every day, if it means he can enjoy this last year of school.

He has lived in this small town for eight years. Long enough to fit in, and to belong, and long enough to have created life-long friendships.

If he left now, what would that mean for him?

The rights of passage for every young adult leaving behind their childhood is meant to be fun. Some would say this will be the best years of his life. However, the prospect of ending his final year of high school with such finality is detrimental for both he and his parents.

It is doubtful this year will hold treasured pep rallies, fundraisers, or lectures of the dangers of drugs or drinking, that most teenagers scoff at or roll their eyes at, yet every adult hopes they take to heart. Nor will there be the customary dances such as homecoming, or even prom. Besides the previous year’s graduates, it is doubtful his final year of high school will compare to any of those students who come after his class. These graduating students will have missed out on all the lasts of their high school experiences.

So when his mother made the announcement that they were going to have to move back to Texas to help care for grandma, you can imagine the heartbreak and intense feelings of desperation he must have been experiencing.

He was already navigating a world of loss.

Now his family was asking him to sacrifice even more. To leave his high school sweetheart, friends and his first job. To leave the comfort and beauty of their small town and return to the hot, dry and busyness of city life once again.

He hadn’t cared for it as a child, and he knew he wouldn’t care for it now. And he was determined not to go back.

His mother was now forced to make the most impossible choice.

She chose to leave without him.

The decision to let him stay was not easy, and she second guessed it even after that moving truck was pulling out of the driveway. All she can do now is trust that she raised him right, and that he would carry the weight of this new responsibility as well as possible. She prayed and prayed some more. There was no easy option. Then again, ALS is never easy.

It would be too difficult to move her mother up here. They would have to find new doctors, and potentially buy another home during a risky economy and unknown futures. While I tried to assure her that we have an excellent care team, support groups and incredibly caring families that can help pitch in when the difficult parts were upon them, there was another dilemma that had to be addressed. A stepfather who is also sick and will need care and possibly chemotherapy. It was too much to ask them both to move over a thousand miles in the conditions they are in, and one would not leave the other behind.

This woman made the only choice she knew to do.

She chose to leave a piece of her heart behind, with the hope that he will be happy, and to experience what little of a senior year he could. She chose to uproot her entire life to travel to another part of the country to care for the other piece of her heart.

The guilt either way will wear heavy on her.

With no family to ask to watch over her son, she is relying on church members to check on him from time to time. Her newly eighteen year old son is being thrown into adulthood, and she has now become the caregiver to her mother who has already lost her speech, and ability to move more than a few steps.

She made the most heart wrenching of choices to leave her child behind and to launch herself into the new found role of being a full-time caregiver, praying she has the strength to watch her mother slowly deteriorate in front of her. The worry and stress will be compounded as she is faced with the disease and what it steals. Instead of worrying from a distance, it will become all too real. And she will now have the added worry of all the things that could go wrong while she is so far away, with little support for her son and trusting in others to help watch over him.

There is no right or wrong way to handle this. There is no easy way out. All they can do is rely on each other to get through what they each need to get through on this journey, and hope to come back together in the end, stronger than ever.

Like I said….an impossible decision.

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…

When angels have to leave…

“Mama passed away”

It’s six am, and I am eight hours away from home. This is the text message I wake up to. I set down my phone and lay there.

The hotel room is modern, with sharp edges and a cold surface. It seems colder now.

I turn my head. Laying next to me is my baby boy. He is not so little anymore, but when he sleeps, he still reminds me of the baby I held all those years ago. His little upturned nose, long dark lashes laying across his sweet face. His mouth is open slightly, and his hand is near mine. I reach over and gently touch his cheek.

She is gone.

The thought seems foreign to me for a moment.

I didn’t get a chance to say goodbye.

I had seen her the month before, but it was a whirlwind of people and activity, so visiting with her was short. Matthew said she was having difficulty breathing, but I still refused to accept that she could be close to the end.

I quietly rolled over to glance at Matthew.

He is laying in his wheelchair, pillows tucked around him. Blankets piled on top of him. Not much is seen except his head poking through. His mask moving in and out with each breath the machine pumps into him.

How will he take this news? A tear slides down my cheek, and I flash through the memories of when I had first met her and her family. So many smiles, so much laughter, even in the painful moments.

Anticipatory grief is knowing what is coming, being helpless to stop it, yet still feeling the heart break, even after you have prepared for it.

This time is no different.

I knew she was in Hospice. I knew she was tired of fighting. She was in pain. She was hurting. And selfishly, I wish she would have held on.

She was so loved by so many. A mother to many, and a woman who was known for her friendship as much as for hard work ethic, her love of family, and her laugh. Her sweet and caring nature was easy to love.

I doubt I will ever be immune to the sting of hearing when someone has passed. I have seen it almost daily on Facebook for years now, another angel has gotten their wings from this disease called ALS. This may be why I don’t visit the support groups anymore. I meet them, grow to love them, only to lose them.

This family is another one I have come to know and love, and it makes the loss that much harder.

I had the honor and the privilege of watching a family come together during chaos and sadness and hold each other up.

To say I was jealous would be an understatement.

The strength this family possesses, and the love they have for one another has been inspiring to watch.

I witnessed a man, weary and worn down, still get up every day. Even at times where he probably felt he couldn’t muster up the strength to continue, they circled around him, supporting him, so that he could care for her in her last years. Eyes that hold pain, but shoulders that continued to carry the burden and grief of it all.

Her daughters cared for her with comforting hands, helping with showering and dressing. But more than, they were pillars during times when the disease became too emotional for her to hold in. They allowed her her tears and her grief, so that she could show a courageous face outside the walls of their home. Grandchildren that wanted to be with her all the time, no matter that towards the end, there was a constant reminder of her illness wrapped across her face to help her breath.

I am not naïve to think they did this perfectly. There is no perfect. And there is no right or wrong way to deal with a diagnosis like this. But if I could look to a family who handled this with grace, support and love…this family came together during the most difficult of times and I am in awe of their strength and determination to walk this journey together, side by side. I wonder if they know how truly lucky they are to have each other. So many other families are torn apart, but this family seemed to huddle even tighter together.

I can’t help but hurt for her family now. This woman was giving and kind. She wanted to support others as they traveled the same road she was on. She wanted to lend comfort and wisdom and she wasn’t shy in schooling those about the ins and outs of ALS.

I have no doubt that those who walked away, or lost touch with her after those three letters consumed her life will have guilt. Somehow, I just know she wouldn’t want that though. She has found peace. She is no longer trapped inside a body that refuses to move, and the pain is gone.

I lay there for a while longer, staring at Matthew. Do I tell him? Or do I wait?

He must feel me staring at him because he turns his head and opens his eyes. I begin the process of hitting buttons to move wheelchair plates down, and seat positions up, and more buttons for machines that I still hate, the beeping always so loud in my ear.

I sit next to him on the bed.

“Kathy passed away last night.”

Matthew winces. We are both silent. What more can be said? Our eyes fill with tears, but no words are spoken.

Our drive home that day was filled with quiet solitude. There is nothing else that can be done. And that is the hardest part of all.

And our hearts are broken once again…

He waits…

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He waits…

There is not much more he can do these days, but to wait.

He knew the disease would slowly take his ability to move. A few days after his diagnosis, every website that explained the disease in gruesome detail explained to him what to expect. He would steadily become a prisoner in his own body. There would be no cure, no treatment to slow this process down, and no one with answers as to why this was happening.

He waited…

The days would pass, as they often do. Lives go on, people come in and out of his world, but still…he waits.

He is locked inside what was once a six-foot two-inch frame, of broad shoulders and the strongest of legs…legs that had easily ran up mountains, swam in oceans, and walked with confidence through any door. His fingers have curled, the tendons and bones are all that are left to show hands that had once caressed his wife’s body. His arms lay at his side. He no longer fights the urge to raise his arm to scratch an itch.

Instead, he calls out for someone to come wipe his eyes, to reposition certain body parts, to adjust and to maneuver.

And he waits…

His legs spasm, not in pain, but in the normal progression of the disease. He glances down at his feet.

There is nothing normal about this.

His toes are beginning to resemble his fingers as they too, curl inward. The disease has ravaged his feet. He stares at his toes, willing them to wiggle, to move, anything to prove that he hasn’t lost that small little ability.

He waits…

Nothing. No movement.

He glances up.

Rolling his head from side to side, he feels the heaviness that is slowly taking hold. He knows what is coming.

Soon, the weight of his head will be too much.

He stares out the window.

There is a bustle of noise coming from the kitchen. Pots and pans clanking, the scraping of spoons as they are stirred by someone else. Someone else who can move easily from one task to another.

The familiar pang of sadness at his loss begins to creep into his consciousness. He closes his eyes.

He has been waiting. Waiting and wondering when the time comes that the smells that come from the kitchen become intolerable. He wonders how long he will have to wait before he can no longer chew the food that someone else places into his mouth. His jaw is already sore. It is getting harder to speak, and to chew.

Someone calls out his name.

The footsteps grow louder. The door opens.

He has been waiting.

Waiting for someone to come and wheel the metal arm closer to the bed. To hook each loop into the bar, and effortlessly pick him up.

He glances at the reflection in the mirror.

Legs dangling, a large sling wrapped around his body, as he hangs helplessly from the air. He looks away. He knows what he looks like. He is naked, in the most vulnerable way a man can be. There is no covering him. He is long past embarrassment, but the vision of seeing his reflection staring back at him and being incapable of covering his most private of areas, is difficult to see, even for him.

Someone pushes and grunts and pulls to maneuver his body back into his wheelchair.

He waits…

He waits patiently for the metal arm to slowly place him into a sitting position in his wheelchair. A blanket has been laid gently on his lap, his teeth are brushed, and his pills have been swallowed. One of the pills catches on the way down, causing him to cough and choke.

Quickly, someone grabs the small machine and hose that is never far from reach. The machine is meant to simulate a person coughing.

He waits…

He waits and tries not to feel claustrophobic as the mask is tightly pressed against his mouth and nose. He couldn’t protest if he wanted to. The machine forces air so hard into his mouth and lungs, his cheeks swell against the mask. A click of the machine, and the reverse happens, as the air is pulled, almost violently from his body. It is the only way his body can cough. Over and over again, this procedure is done, the machine straining, as it forces air in and back out again.

He waits…

His airway clear again, he can breathe.

The momentary adrenaline rush at the lack of air moving fluidly through his body slows as his heartbeat returns to normal once more.

He is wheeled out into the kitchen. Someone has prepared dinner. His meal looks less than palatable. Soft foods so as not to choke again. He sighs…He waits while someone sits down next to him, grabbing a fork and begin to gracefully place the food onto the prongs and then lift it to his mouth. He opens his mouth…chews the food, moving it around his mouth, a bit of anxiety and hope that he can swallow this bite without choking again. Small bites. Slowly….he swallows.

He waits.

He needs a drink. Watching, he leans forward with his head, lips outstretched towards the glass.

The effort is exhausting. He shakes his head. His jaw is tired. The water dribbles down his chin.

He waits…

He waits for someone to grab a napkin and wipe up the droplets hanging, threatening to spill beside the bits of food he had been unable to hold in his mouth, that are now laying in his lap. He waits for everyone around the table to finish their meal.

He waits…

He maneuvers back into the bedroom to watch television. Someone else needs to get ready for the day. The children are all running, a cluster of excitement as they get ready to leave and go about their busy lives. He positions himself in front of the screen.

He waits…

He waits for everyone to say “goodbye” as they run out the door. A quick kiss to the forehead, and the door slams behind them. He listens to the stillness of the house.

He waits…

The caregiver walks in. She swiftly picks up the remote, points it towards the wall, and clicks on the tiny buttons to the channels he prefers. The television has become his only outlet and escape from this disease. It is all he can do to pass his time now. He can lose himself in make believe for just a while. For just a moment, he doesn’t have to think about what he needs, what others do for him. He wants to go out. He feels trapped…trapped inside the house, and inside his body.

He waits…

He watches the hours pass. Eight more hours before someone else comes to tell him about their day at work or running errands. Nine more hours before the kids arrive. Ten more hours and everyone will gather for another meal around the table. Twelve more hours and he can go back to bed.

He waits…

He waits for a text message, an email, a phone call. Anything that shows that he is still participating in his life. He seldom hears from those who had once been so close to him. He wonders if they think about him. He understands that the world kept turning, he just isn’t turning with it.

He waits…

He waits for visitors that never come. He wants to ask them to stop by, to sit and tell him about all the new experiences they are having. He supposes they feel guilty. He knows he makes them uncomfortable now. If, and when an old friend pops in for a visit, it is always the same. Big smiles to hide the awkwardness as they lean in for a hug. They complement him on his inspirational strength, but the smile falters. They fumble for words, for stories, and things to talk about. They feel guilty for still living, as they sit across someone who has so little time left. They glance at their watch. They need to go soon, but they promise to come again soon…But they won’t, and they both know it.

He waits…

He waits for conversation…but the caregiver is busy taking care of him. The caregiver is not there for companionship. They sit out in the living room, staring at their phone. Too busy counting the hours before their shift is over so they can leave. He understands…he is counting down for their shift to be over as well.

He waits…

He has to use the restroom again. He calls out for help. He waits until someone is finished doing their chores before they stomp in to help…again. He tries to hold it and tries desperately not to lose his patience. He hates asking for help, but there is no choice. He wonders what is taking so long this time.

He waits

He waits for hands to touch him, but the only caress comes in their efforts to be efficient. He misses reaching his arms around a loved one for a hug. He misses breathing in their scent.

He waits…

He doesn’t want to ask for help again. It feels as if it is constant. The need for something, the constant requests for drinks, food, adjustments. He feels like a burden. Time is ticking by, and his requests grow more frequent with every passing day.

He wonders how his life came to this moment. The limbo of wanting to live but waiting to die.

He looks out the window…

And waits…

he said, she said…

He said, “Wow! It’s nice to meet you!”

She said, “hello….”

He said, “We have a mutual friend.”

She said, “She invited me to come listen to the music with her.”

He said, “I am glad you could make it”

She said, “Thank you. I don’t get out often.”

He said, “Can I buy you a drink?”

She said, “no thank you”

He said, “Its been months, how are you?”

She said, “The summer went by too fast”

He said, “Can I buy you a drink this time?”

She said, “Sure, I would love a water!”

He said, “It’s loud in here”.

She said, “WHAT?”

He said, “Do you like live music?”

She said, “Yes, It’s my favorite!”

He said, “You came with her again?”

She said, “I’m her designated driver.”

He said, “Here is your water.”

She said, “Would you dance with me?”

He said, “yes”

She said, “You can DANCE!”

He said, “Wow, so can you!”

He said, “Will I see you again?”

She said, “Maybe…”

He said, “I haven’t seen you in weeks, where have you been?”

She said, “My life is complicated….

He said, “What do you do?”

She said, “I go to school”

He said, “would you like to go dancing?”

She said, “ok”

He said, “Are you seeing anyone?”

She said, “No…and I want to keep it that way!”

He said, “Why?”

She said, “I am recently separated.”

He said, “I was married for a long time too”

She said, “I have children”

He said, “I bet they are great!”

She said, “You aren’t my type”

He said, “I know, but can we keep dancing?”

She said, “Yes, I would like that…”

He said, “We have been dancing every month for almost a year now!”

She said, “I just want to be friends…”

He said, “I know…”

She said, “I’m not ready for a relationship.”

He said, “I understand. I am happy just being your friend.”

She said, “Thank you for being such a great friend to me”

He said, “Who are you here with?

She said, “I am here on a date tonight”

He said, “Do you like him?

She said, “I don’t know yet”

He said, “That guy shouldn’t be flirting with your friends”

She said, “I guess he wasn’t that into me”

He said, “He’s an idiot”

She said, “Thank you”

He said, “You deserve better!”

She said, “I agree..”

He said, “I like spending time with you”

She said, “I need to take things really slow”

He said, “Of course”

She said, “I think you are looking for more than I am ready to give.”

He said, “I have all the time in the world.”

She said, “What’s wrong with your fingers?”

He said, “Nothing, I am sure it’s nothing”

She said, “I am not ready”

He said, “I’ll wait.”

She said, “Please go to the doctor.”

He said, “Go to Cabo with me!”

She said, “I am a single mother, I can’t go to Mexico!”

He said, “It would mean so much to me!”

She said, “Will you go to the doctor?”

He said, “Of course, as soon as we get back!”

She said, “Its beautiful here!”

He said, “Thank you for coming with me.”

She said, “What did the doctor say?”

He said, “He wants to run some tests…”

She said, “It is going to be alright…”

He said, “I have ALS”

She said, “I know”

He said, “I’m scared.”

She said, “Me too”

He said, “Maybe you should leave?”

She said, “I promise I will stay”

He said, “Will you spend the rest of my life with me?”

She said, “Yes”

He said, “My legs are getting weaker…”

She said, “We need to find a new home”

He said, “I want to marry you and dance with you on our wedding day.”

She said, “There isn’t much time.”

He said, “I am sorry we are rushing things.”

She said, “I am sorry that the last time we danced was on our wedding day…”

He said, “I don’t want to use the wheelchair.”

She said, “It’s there when you are ready…”

He said, “I can’t lift my arms anymore.”

She said, “It’s okay, I am right here…”

He said, “Don’t worry, we are going to be alright…”

She said, “I don’t know how to ask for help”

He said, “Neither do I”

She said, “I don’t know if I can do this alone.”

He said, “I feel like a burden.”

She said, “You are not a burden.”

He said, “Happy Anniversary!”

She said, “It’s been 3 years?”

He said, “Its going by too fast”

She said, “I feel so alone”

He said, “So do I…“

She said, “I never get to go out or do anything anymore”

He said, “Neither do I”

She said, “I didn’t think it would be this hard”

He said, “Neither did I”

She said, “I miss being held.”

He said, “I miss touching you.”

She said, “Where did everybody go?

He said, “I don’t think they can handle this.”

She said, “I am so angry.”

He said, “I know.”

She said, “I had different expectations.”

He said, “I think it’s just you and I.”

She said, “You are my person.”

He said, “Thank God I have you.”

She said, “We still have so much to be thankful for…”

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How to say goodbye again…

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I wonder how they do it?

I wonder how doctors can look people in the eye, and tell them that they are going to die…

The doctor sits down and explains to the patient that they have ALS….and then what?

I know in the ALS community, there are teams of doctors and specialists and therapists who rotate into each room, greeting the newly diagnosed patient and their family member. Every doctor, specialist and therapist have a small window of time to discuss and answer questions, as well as take various measurements with various tools and devices.

These are referred to as an ALS Clinic.

These people are sent into the room to determine how much a patient has progressed.

These clinics are all over the country, the world in fact. And each one does exactly the same thing.

They diagnose…and then they chart the progression of the deadly disease known as Amyotrophic Lateral Sclerosis.

How do they cope with this loss repeatedly?

They meet a family, they get to know them, and they watch, helplessly from the side lines.

How do they find the strength to keep watching?

And they do this over and over with each patient they see. They may not know when, but they know, just like a freight train that is headed straight towards them, and there is no way to jump out of the way, that death is headed for each of these patients.

Today, Matthew and I learned that we have lost another friend.

And just like that, he is gone.

I can picture his face perfectly. His eyes, and how they twinkled. His smile, and the way he grinned like a little boy with such a mischievous look in them. I knew he loved his family. I knew he was a proud man, with an iron will and a stubborn streak t least a mile long.

I knew that he had progressed considerably since the last time I saw him.

I hadn’t seen him in months, but I knew.

Of course, I knew.

It was clear that he was struggling when I had seen him last. His shoulders were rising with each breath. He hated the chair he was sitting in. He visibly looked uncomfortable. He hated being sick…

And from the short time I knew him, it was clear he was stubborn and would handle this disease his way. I could relate to the frustration his wife felt about this. It is hard to let someone else take the reins of their own life and yet , as the caregiver, be somewhat responsible for their health and welfare.

Matthew drinks Coke. A lot of Coke..

He still chews tobacco…although now he has moved onto Copenhagen pouches to avoid the choking hazard of the tobacco grains going down the wrong way and causing pneumonia. But he still chews…

He eats too much fast food, and junk food, and he doesn’t care because he knows one day soon, there is a possibility that he will not be able to eat. So, my stubborn husband does as much as he wants to do, and I let him.

The man who passed was stubborn too…

He hated anything that made him weak, and he especially hated all the machines he relied on, and the medicines…and how weak he was becoming.

I am taking a huge liberty writing this, as I hadn’t gone over to visit him in so long.

I will forever feel sorry about that, and yet I hope they understood.

Matthew and I are on our own path of this destructive train wreck waiting to happen. I know it’s coming, and so does he. Yet, we are still able to find happy moments and to experience joy and laughter. I need to keep my own happy for as long as possible. I am grasping with everything I have on some days…

The years keep going by, and the people we meet have come into our lives, and many have passed. Sometimes suddenly, and others, not so surprisingly.

And I am detaching from it all…

This doesn’t feel intentional, it’s a sort of survival mechanism for my heart.

I meet these families, and I fall in love with them. And then I watch powerlessly as they struggle to find their new normal, and I am helpless to stop what is happening to them. And I become a bit angrier at each loss.

There are more people who have been diagnosed in our area recently.

Some have reached out to me, and this time, my wall is built. I am a little less willing to rush into their worlds and learn all about them. I am a little less willing to fall in love with their families, and then witness their anguish. I hide behind the walls of our foundation. I stick to the facts. I offer advice, but I pause before opening myself more.

Matthew is much the same.

This afternoon, he hid behind his screen. He hid behind whatever would take his mind off what is happening.

The freight train is coming…

We can hear it.

We can’t see it yet. We still have time. But the dread of what is coming is always there. It never quite goes away…It is dark and heavy, and we can do nothing but accept the path that we are on, and the journey we have been led to walk.

I wish his family peace.

I hope they find comfort in their memories of their time together…

And I hope they understand why I pulled away. Not because I wanted to, but because I needed to.

I am not always as strong as I like to think I am.

We are all cowards from time to time…

Goodbye friend☹

Hey babe…

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Imagine….

Imagine laying on the bed, a small blanket covering you to your waist. You try to pull it up, but it is too heavy. Your hands can’t grasp the edge and pull. You feel your arms getting colder. You lay there, forcing your eyes shut, trying to ignore the chill.

The blanket is warm against your legs, but it feels so far away. Such a simple thing, to reach down and pull it up, and to snuggle back into the pillow.

Finally, you can’t take it anymore.

“Hey babe….Can you cover me up?”

They reach over, pulling the thin, electric blanket up, and the soft snoring can be heard again within minutes.

Soon, you wake again. This time, as you are laying on your side, your hip begins to ache. You need to move to your back. You know that you have already woken the person beside you several times and its only been a couple hours. You stare at the back of their head, see their body move ever so slightly with each breathe. How long can you hold out?

Sleep is not coming. Instead, your mind wanders. Back to past memories. Like a black and white sitcom, you play them over and over. Remembering the smiles, and hugs from family members. The holidays. All those firsts. Then it turns to the sadder times. You remember scenes from each moment as if they were on repeat. The angry words thrown at loved ones, in anger and in pride. Suddenly those moments that seemed so important, now seem trivial.

Your hip is throbbing.

Still, you refuse to move. You try to make a deal with yourself. You won’t call out until they move first. Remember that game? The one where you would stare and not blink first? Doing anything and everything not to blink or look away. You always won that game! You can do it again.

Whoever moves first, loses. Ignore the pain. Ignore the tingling and sharp needle like pains running down into your leg. You can win. Just don’t think about it.

Tick..Tock….

Has it been an hour? It feels like it. You can’t take it anymore. You break.

“Hey babe…Can you roll me over?”

Damn…you lost.

They groan slightly, moving so slow. Please hurry…

Finally, they sit up, legs go over the edge of the bed, they stand. Why are they moving so slow? Don’t they know how long you have laid there, in excruciating pain? Don’t they understand how long you held out?

The floor creaks, as their feet shuffle.

Finally, they come to the other side, taking the blanket off of you, and grab onto your legs and shoulders, to roll you.

Oh no…

Your bladder sends a message to your brain.

Quick!

Decide….now!

Do you have to pee or not? Because they are up, and if you do and they lay down, you are going to have to hold it…

They turn to go lay back down.

“Hey babe? I need to pee.”

You hear the feet stop. You can tell they are irritated. They turn, mumbling. You don’t ask. You can tell its not something you want to hear anyway. The blanket gets whipped off, a little less gently this time. They grab your leg and shoulder again, this time rolling you the opposite way, and if they aren’t steady, you’ll fall to the floor like a bag of potatoes. Something cold touches you. It’s the cold plastic as they press the urinal against you.

Damn. It doesn’t just happen like that!

You need a few minutes.

Finally, right when you are sure their patience can’t possibly hold on much longer, you feel your bladder cooperate.

Several more minutes later, your pillow has been readjusted, your legs and arms are covered, and they lay down again.

You immediately feel guilty. You know they have to get up soon. You lay there thinking about how much is happening for the day. You know each day the work load gets heavier and heavier. Your guilt builds. How much more can they handle? How much more sleep deprivation and stress can they take.

You can feel your skin itch. You try to move your arm, but your hands aren’t strong enough and it only makes it worse.

You lay perfectly still, trying to breathe through it. Trying to think of another childhood game where you can’t move, you think of freeze tag. Don’t move or you are out…

The back of your head itches. That one is easy enough. You shake your head from side to side, digging your head into the pillow.

Sweet relief for just a moment!

Damn!

Now the mask over your face has moved from your damn spastic head shaking. Before you can decide if you should call for help, the alarm sounds next to you.

You look to your side, just in time to see them jump out of bed, running over. Their face full of worry.

“Sorry babe, the mask needs adjusted..”

Their eyes go from worry to irritation.

They reach over, pushing the off button. Fiddling with the straps, they get it placed back on, and before they turn, you ask if you can lay on your side again.

With the finesse of a WWE wrestler, they quickly roll you to your side. Adjusting your legs, and blankets and pillows, they stomp back to their side of the bed.

You lay still, trying not to make any more noise than you have to.

You wonder what time it is? How much longer before you can have them get you up and put you in your wheelchair? At least then, you can move a bit more. You hate being in bed.

You hear them snoring again.

How can they do that? How do they fall asleep so quickly?

Then you remember. It’s been years of this. Every night. Some nights are better than others, but every night, you wake them up.

Your mind wonders to Chinese torture practices. Is this how they do it? Wake a person up every twenty minutes? Can a person go crazy?

How long can a person go without sleep? You wonder if you are going crazy?

You giggle, because this isn’t funny, but it is either laugh or cry.

Then the giggle turns to a groan. Okay, this definitely isn’t so funny anymore.

Your hip starts hurting again. You wait. You really try to. Until you can’t handle it anymore…

“Hey babe?…”