travel – ALS Fact of the Day~

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

Going home…

I know this road like the back of my hand. I know the curves and gentle slopes like a lover knows the curve of a cheekbone. I know where every pothole is. The damnable things that return year after year, no matter how often they grade, fill or sand that road. I know where all the jagged edges are.

There is a bridge, and on a hot summer day, you can always find a few cars parked along the edge, as daredevils attempt to scale the cliff’s edge and jump into the wickedly cold mountain water. I have jumped from the highest point and splashed into icy water. I would try to act tough, but each and every time, the air would scream out of my lungs from the shock of the cold against my body. It has been at least twenty years since I have jumped into that creek.

I continue driving, noticing a new fence along the way. Someone is building a shop along their property, and I shake my head, still annoyed that someone had the audacity to build a house there in the first place.

The sound of gravel crunching under my tires as I turn that last corner onto that dirt road travels above the chatter of my kids in the back seat. The dogs are looking out the winder, their noses twitching with the new scents yet to be discovered.

I gently touch my brakes to slow down, not wanting to kick up dust, and to avoid even more bumps along the way. I can miss every rut with my eyes closed and it feels familiar once again.

My face is smiling. The wild grasses are swaying, as if they are waving to me. The flowers, small and frail, are peeking through, timid and shy. The gentle rocks are still undisturbed; strong and steady. Their pointed overhang, with a thick moss hanging over, provide a bit of cover and an easy escape for the deer who are perturbed by my unexpected arrival.

As I get closer to the house, my heart beats excitedly!

I am home!

Never again.

I will never look for excuses not to come back. I will never lose track of time again, and I will remember how much I need this place as much as it needs me.

At least, that is what I tell myself.

It has been at least five years since I have come for a visit.

I had forgotten the beauty.

The smell of evergreens, and sweet clean air. The mountains, so close, its as if they are hugging you in a warm embrace. The river calls to me to come and sit for a while.

And so, I do.

It’s 3 o’clock.

That means its “happy hour” down at the river. We have unpacked and it’s a warm day. I know where I can go to cool off.

I follow the trail that leads down to the water’s edge. The tall grass is overgrown all around, but a small trail is carved along a pathway that leads from the house to the rivers edge. Two tall pine trees serve as shade.

He has added a bit to the gazebo. Moved the picnic table closer too.

But the chairs are still propped, facing the town.

I sit down, breathing deeply.

I sigh…

I am tired.

They look at me, a bit of sorrow, a bit of pity and a small smile in their eyes. My children are yanking their clothes off, ready to jump off the dock and into the river below. The dogs, their tails wagging, are smiling, glad to be free of leashes or restraints.

This place is freedom. It is solitude. It is peaceful.

I hadn’t realized how much I was holding in until that moment.

So I sip my drink, and breathe.

I let the worries, and the stress: the disappointments and the angst fall off my shoulders. I can pick it up when I leave. After all, it never goes too far. But for now, for these four days, I want…no I need to simply be. I need to have no one ask me for anything, or to need me for anything. I need to soak in the beauty all around me.

The splashing and dogs barking make me smile.

My children have been playing on this river bank their entire lives. I am happy that they will have childhood memories of this place.

This place will have a far different meaning for my children than it had for me in the past, but I am thankful all the same.

The sound of a chainsaw across the river draws our gaze upwards.

A crane, with a long blue arm reaching high, a bucket holding a man inside, is stretched out to a large leafy elm tree. The chainsaw roars and screeches, as the man wields his weapon against the wise old sage. It is the last of its kind. A tree planted more than one hundred years ago by the looks of it.

We all sit and stare as limb after limb drops down to the ground below.

The kids are still jumping and laughing, oblivious to the atrocity happening across the river. The three of us simply sit, with no words to be said.

Finally, he growls about the stupidity of cutting down the majestic beauty. It is obvious the tree is not being pruned but destroyed.

He shakes his head.

I wonder aloud at why they would cut down a perfectly healthy tree like that. Roots? Disease?

We have no answers.

After our drinks, its time for dinner.

The kids want to walk into town to visit with their grandparents, and I am glad. They all need that time together, and I need time alone. I am even more glad that there is now a bridge that connects those who live on one side of town to the other, with a quick stroll. That means I don’t have to drive them around and into town the long way.

Memories flood my mind as I find myself strolling along the same path later that evening. Walking with no set destination in mind, I put one foot in front of the other. Listening to nothing but the sound of my breathing and footfalls along the dirt road.

I moved to this house when I was fourteen years old. Can you imagine how incredibly angry I was? Moving again, and this time to a town that didn’t even have one stop light! What a horrible idea! I didn’t want to be there, and I am sure I let them know my frustration at being cooped up in a tiny house, so far outside of town, and not knowing anyone!

Yet, this house. It was the first place I would feel safe.

You can imagine my frustration at having finally started to settle in, only to be told we were moving again. I put my foot down. Hard! I begged to be able to stay. Just four years. That was all I would need: please could we stay?

A decision that had both good and bad consequences.

They let me stay, but they left. They would go to work for weeks upon weeks, leaving me alone to navigate being a teenager in a small town.

Let’s just say, I didn’t make the wisest of choices…

I keep walking a bit further along, remembering the parties, the sneaking out on late nights. Kissing boys and hearing the gossip the next day. Planning bonfires or skinny dipping, yet the girls were always too shy to take off all the clothes, and the boys were too shy to even jump in! I remember playing on the water in the summer. I would sometimes sneak out, just to take a wobbly pontoon boat up the river, just so I could float back down and stare at the stars all by myself. If that seemed dangerous or risky, it certainly had never crossed my mind.

I remember my mother and the guy that I would later call “dad” when describing him to other people because the telling the entire story would take too long, they broke apart for the last time. Still, I found my way back to that house.

Then, instead of sneaking out, I would find my self constantly sneaking back in. A house that would become a summer getaway would be a place I found solace for years to come. I moved back into that house five years later when I eloped with a man for no real reason other than he looked at me and said, “Hey, the Hitching Post is back there, do you wanna?” He seemed pretty nice after a few weeks, so why not?

Lack of jobs, lack of education, and desperately needing to set out on our own path, we left, only to return once again, this time with a baby in my belly.

But that town was still too small, and I was far too restless to stay there. I pushed farther and farther away. Yet, every year, I would feel the calling to come home. To breathe the mountain air, to feel the soft release, as I sink into that chair and watch the water flow softly by.

I would bring my babies there. I would swim with them,

teaching them about the current. While other boaters stay far away from this part of the river, I teach them not to be scared of the waters currents, or the rope holding us back from going over the falls not too far away, but to trust it and know it will pull you to safety if you let it. Don’t fight it, but to swim with it.

Years later, I would decide to leave my first husband on that river bank. We held hands, crying, as we said our goodbyes, and after 17 years of marriage, that part of my life ended. It stung to go back and feel so many memories that included him.

Maybe that is why I stayed away so long?

Or maybe it is because shortly after one part of my life ended, another part began.

ALS.

And because of that, I stopped trying to find solitude and peace in places and started looking for it in myself. Or maybe because I felt shame and didn’t want to come home to more criticism. I felt enough disappointment; I certainly didn’t need to feel it from others as well.

That first night, I found myself walking to one of my favorite spots. I used to go and sit next to the water as it rushed down the gates of the dam. Those trails are grown over now, and so instead I went to another spot. Still close by, where that cold water from that creek above meets the water from the river.

I sit and stared at the stars. I let the cool night air kiss my skin and for just a while, I forgot about everything else but being in that moment.

The sound of the water rushing by, as it joined into the river. The Milky Way, something I had forgotten even existed, was staring down at me. We seem to recall each other. I walk home, a smile on my face. My body releasing all the tension and letting go.

I spent the next two days sleeping in, riding in boats and playing with my children in the water, showing them some of the sweet spots of the river. My dad and I shake our heads at all the houses along the riverbanks. He shakes his head at the crazy housing prices, and I shake mine at all the change. Neither of us like change.

We would find ourselves sitting on the river’s edge each day around 3’oclock. Sipping our beer and sitting quietly; watching a giant blue crane across the river continuously rise up and down, getting to just the right angle. We can hear the screeching of a chainsaw as it hacked away at a beautiful piece of history.

I spent my nights looking at shooting stars and remembering. Remembering good and bad times, happy and sad.

Remembering how I couldn’t leave fast enough. How it was too slow, and too simple.

Now, I want more than anything to have simple once again.

It is day four.

I don’t want to go back to Idaho, but I must. I find myself stalling for more time.

This time, instead of rushing away, I try to find any excuse to stay. But I know I cannot. I watch, as the chainsaw cuts down the last limb. It has taken four days to chop the tree, leaving only the trunk left to saw down.

I nod and try to take a picture with my mind’s eye as the bald eagle flies overhead. A lone duck swims over towards the dock, but the dogs don’t understand that it doesn’t want to play. It quickly paddles away. Dragonflies swoop around, and the sound of the train horn begins whistling in the distance.

With another deep breath, and a sigh, I stand. I glance over my shoulder for one more glimpse of a sleepy little town. A town I had once hated and couldn’t leave fast enough. Yet now, all these years later, a town that I find myself gravitating towards more and more.

A place I once called home…and I expect, always will be.

San Fran or Bust!

ALS Fact of the Day~

San Francisco or Bust!

Inverness, CA is solitude and beauty and quiet in a way that I have not experienced in years. I want more, but I will be content with the few minutes I was able to enjoy before I was needed by the tiny travelers and the big guy. There is a part of me that could stay here forever, watching the tide ebb and flow with the seasons. I must admit, the food and the local market leave much to be desired, but seriously…when was the last time you sat outside and listened to absolute quiet? Just the gentle lapping of waves as they caress the shore. No cars, no loud brakes or honking or engines revving. It was peaceful. I desperately want to come back someday.

Check out time is noon, which should give me enough time to shower Matthew, clean out the van and get re-packed. The entire process should only take me a couple hours, but the kids are happy to watch a movie, and Matthew is laying back resting. And I don’t want to be the drill sergeant ruining the peaceful setting. So I wait…almost patiently.

The night before, I had tried to lay Matthew on the bed, with pillows all around, under his head, his arms and legs. However, sometime in the middle of the night, the pain was too much. So, once again, I get up, trying desperately not to wake the kids as I grab the lift and put him back in his chair. His knees and hips are hurting, regardless of what position he is in lately, so it means a lot of moving, and stretching and trying new ways to make an impossible situation bearable.

Finally! At 12:00 pm, we load up and are ready to hit the road. Everyone is in good spirits once again, and I suggest we get gas and a good meal before we attempt anymore of Hwy 1. Our navigator thinks it would be better to get down the road a bit more. ( I silently disagree with his assessment, but I let him make the decisions, as he is the one who planned all of this!)

So begins the swerving, and curving..the topsy-turving. In and out, and all around, we roll from side to side. The kids begin complaining of headaches, and belly aches. My arm hurts from holding Matthew steady. Still, he wants to move onward.

Where the redwoods stood tall and proud behind us, the trees that come around the bend are different. The only way to explain them is as if you were to take all the different kinds of trees from across the land, and then toss them haphazardly across the landscape. There are trees that are leafy, that reach over across the highway to touch the fingers of the trees of their lovers across the road. It was almost as if they couldn’t bare to be apart, and even the simplest of touches would have to suffice.

The next trees were lined up, one-by-one, along the road, in an almost military style, as if they were saluting the cars as they passed by, standing proud and strong at attention. Next were the trees that were a bit too lazy to make the effort to create strong branches. Instead, they had vines and moss that were hanging from limb to limb, as if with a small smile and a happy gesture to say welcome, but they were not going to offer any shade.

We were down to an eighth of a tank of gas again, and everyone was getting hangry. I have such happy memories of S.F. and I can’t wait to show them the sights! But, my anxiety at letting the gas gauge get that low, and the kids are noisily munching on the last of the bags of baked chips and popcorn.

Matthew keeps repeating, “Its about the journey, not the destination.”

I know!

But I really want to get to our hotel room and then explore and it is already 2:00 pm.

We see the Golden Gate Bridge. I reroute us so we can get closer, but hauling a trailer behind us is proving to be difficult in a tourist hot spot.

We agree getting to the room and then coming back would be better. I am getting antsy. I don’t want to be in the van anymore! I want to be out, walking around and seeing things!

We navigate our way through the back streets towards the Fisherman’s Wharf. Only one problem…. The valet won’t take a vehicle with a trailer.

I have the kids unload everything, and I have them all go in and check in and get things to the room while I navigate the parking arrangement.

Each parking lot within a four-block radius refuses to let me in.

It is so bad, in fact, that they come running and won’t let me even enter. They yell at me that I can’t park there, and they send me on my way. One man glares at me, putting his body between the barrier and my can. All I can do is ask as politely as possible, and know that the prison system in California frowns against running over people for no reason. So I smile and back out into honking traffic. Each place looks at me as if I have two heads for even attempting to bring a trailer downtown.

There was a moment, when one of the garage attendants was telling me to go away, that I almost started to cry. It was close, but since I only cry when I am truly desperate, I backed that trailer up, in the middle of rush hour traffic like a true Mountain Woman, and short of telling him to piss off, I drove away with my head held high.

Until I parked and went into the hotel and saw their faces.

The kids were so sad.

I don’t know what is worse. The fact that they were ecstatic over the size of the large bathroom, so I would be able to help Matthew, and we had to leave, or the fact that they had to go back up to the room and load it all back up, while I brought the van and trailer around.

People are often unaware of what it takes to find accessible locations. I can’t say it was ever anything I ever would have considered during my life before ALS. But, now, it is constant. I look at stairs, and steps, and dips and holes, I am constantly navigating and judging if it is something we can do. Most times, we are unable to venture out to the highlighted attractions simply because Matthew lacks legs that can take him up or down a few steps.

I refuse to let this ruin our day.

I pull the kids off to the side of the trailer after we have loaded it back up again. The damn valets and hotel guests can take a flying leap as far as I am concerned.

I kneel down, and I hug each of them and I tell them how much I love them and how proud of them I am. Not once did they complain or become rude. They did what was asked of them, even when they were disappointed. Not many kids could hold it together as well as they have today. I told them that things weren’t always going to go as planned, but that we could only do the best we could do and go from there.

So off we were, once again. A hotel booked about an hour south from here. With the idea we would return in the morning.

I don’t know if I should thank San Francisco for permanently scarring my children to the effects of drugs and prostitution, but they got a pretty good idea of what it leads to. As our safari bus tried to make its way out of the city, we went from light to light, witnessing drug deals, people literally leaning against the building to use the restroom…and I don’t mean #1! There were people talking to themselves, and people dressed up in various outfits. I tried to explain that some people were not given the same chances or advantages that others are given, and others become broken through a lifetime of bad choices.

They seemed oblivious to the seriousness of what was happening around them, and as we went up the steep embankments and then down again, I couldn’t help but laugh so hard I was snorting. The kids were freaking out at the almost 70-degree incline (so not joking here!) and I was literally trying not to crash as I help with one arm to keep Matthew from slamming his head into the dashboard on the way back down. Brakes are good! I know, because I was on them for quite a while!

But alls well, that ends well. I managed to drive us through the city and to our hotel in San Mateo, where they are above and beyond accommodating!

We have hotels figured out for the next six days, and now we will attempt to see San Francisco once again..this time without a trailer in tow, as we will be leaving it behind to navigate a bit easier!

Some important life lessens here:

Don’t do Drugs! They do scramble your brains!
Don’t use the bathroom on the main thoroughfare..at least go the alleyway!
Even when people are assholes, try not to lose your patience. They are only doing their job
NEVER! I repeat…NEVER! Attempt to take a trailer into the city…EVER!!!!

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