a man and his dog…

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

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

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

I did notice him.

I walked towards him.

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

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

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

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

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

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

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

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

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

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

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

No Loitering Allowed!

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

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

His name is Joe.

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

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

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

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

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

I agree with him.

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

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

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

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

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

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

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

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

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

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

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

We are all worthy of being noticed…

 Matthew Wild

dinnertime…

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It’s my favorite part of the day.

The evening is winding down.  Books are scattered across the table as my studious child is bent over a book, brow furrowed in concentration. The other one is running in and out, doors slamming, as he tries to sneak past me once again. The dogs are watching, waiting for a small morsel to drop. I am laughing as I try swatting at my son to stay out of the pantry. He rushes just out of reach, a triumphant smile across his face.

It’s almost time for dinner.

The sound of onions and mushrooms sautéing in the pan. Fluid motions of chopping, the rhythmic sound of the knife slicing and dicing. With the flick of a wrist, the food is absorbing the heat and sizzle and beginning to meld into a meal. The smells are wafting into the house, and the sounds of laughter are mingling with the sounds of footsteps. My children are gathering around the table. Dinner is almost ready.

Matthew sits patiently, quietly. His chair turned towards me.  He loves to watch me cook. I know this about him.

Even on days when I barely have the energy to move, if my children are gathered around the table and I am cooking, I am in my happy place.

It was a subtle sound.  I didn’t even hear it at first.

As I am setting the table, my back is turned as I am dishing up pasta into a serving bowl.  My focus on gathering everything to take to the table.

There it is again.

I glance up, twisting my neck to see behind me.

Matthew’s face is red. His eyes are bulging.

He is sputtering.

Kaden and Peyton’s eyes widen.

My son jumps up.

Matt, are you ok?”  I can hear the panic in his little voice.

I set everything in my arms down, but Kaden is already rushing off towards the bedroom. Peyton is standing up out of her chair, unsure of what she can do to help.  I am walking quickly towards the bedroom, ready to grab the machine if Kaden is struggling.

Matthews face has gone from red to purple. He is trying to cough, but there is no sound.  A small wheezing gasp is all that can be heard.

Kaden comes running towards me, cough assist in hand. I can see the look of terror on his face as he glances from Matthew to me.

I smile, trying to reassure him that Matthew will be fine.

I press the “on” button, balancing the machine against my thigh, as I juggle the hose and mouthpiece.  It is taking forever to switch on.  I slowly count to three out loud. More for Matthew’s sake, to help him to remain calm and that he will be able to breathe again soon, than for myself.

One….Two…Three

Finally, the “swoosh” sound begins, indicating it is ready.

Matthew leans towards me, pushing his face into the plastic covering that encompasses his nose and mouth. The familiar sound as the machine forces the air in…then out fills the air.

After several deep breathes, Matthew leans back into his chair, relief across his features.  His face is still red. Tears streaming down his cheeks.  Snot dripping from his nose.

I set the machine down, grab a rag and begin to clean him.

This is automatic.  This is not the first time he has choked on his own spit….and it will not be the last.

I glance at my children, frozen in place. I give Peyton an encouraging glance and ask her to keep telling me about her day. Looks of terror on their little faces slowly dissipate and I can see their chest begin to rise.  They are only now realizing that they were holding their breathe.

And just like that, life returns to normal.

Our normal.

“So” I say, “What was the best part of your day?”

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:

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

 

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sharing is caring…

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Tonight, I want to share an article that was sent to me recently. It has some good thoughts about the stresses that many of us deal with on a daily basis.
For example…Guilt!
 
Oh my! I could write a book about just that emotion!
 
So. Much.Guilt!
 
I do not understand why there is guilt, but it is there in bucket loads. I am never doing enough, trying hard enough, or just the fact that I feel I am “never enough” is all it comes down to.
 
I live with guilt that my children are growing up and will remember their stepfather as someone who was dying during their formative years. Worse yet, I feel guilty that they had no choice in this part of their lives, I simply made the decision for them.
 
I feel guilty if I feel I am neglecting Matthew. I know he is a grown man and can and will tell me when he needs something, but damn if I don’t carry the weight of each decision on my shoulders.
 
While being a caregiver can never truly be understood until you are actually in those shoes, I feel it is always good to try to find empathy and compassion for those who are in a role that we may find ourselves in one day or simply to offer someone a place to fall apart if necessary.
 
Really, the world just needs more people to take the time to learn about the plights of others, to hear their stories without judgement and to, at the very least, offer a bit of kindness. At the most, really try to step up for those they can, and offer empathy.
 
And if you are a caregiver…allow yourself some grace, damnit! It is hard to be selfless and giving and even harder if you are doing it all by yourself. Remember, you are only human, and you are doing the best you can. Some days may not feel like it, but you are worthy, and you don’t need to think years down the road…just breathe, and make it through today<3
 
I am also sharing this article because I am tired, and my words just are not flowing like they normally do. I decided to let someone else do the talking instead. Yet here I am, still typing…
 
Ok..read it if you can..I’ll shut up now:)
 
 

slowly, they all just disappeared…

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You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.

Slowly, so slowly at first, it seemed almost as if you might be imagining it all.

First, the words of condolences.

“I am so sorry you are going through this.”

“I heard about the diagnosis. I am so sorry.”

Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.

It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.

The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.

You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.

You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.

The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.

You do everything in your power not to click on that icon, you try so hard to stay away from social media.

You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.

You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.

The connection is gone.

Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.

The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.

You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.

If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.

You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.

ante up…

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The dealer looks to each player at his table. Shuffling, he asks for their ante.  The sound of the chips as they bounce in a pile is all the indication the dealer needs. He shuffles…eyeing each player as he slides the cards along the felt table top.

The players duck their heads low. Holding their hands over the top of their cards, they peek at what has been dealt to them.

Some of them silently groan.

Their cards don’t offer much. They will have to discard many of their cards, and hope for something better.

Other players are inwardly giddy. Their hands are set. It won’t take much to win.

Each player discards a portion of their hand.  Looking across at each other, some for the first time, they take in what each player is doing. Looking for each other to show emotion, a tick, a nervous twitch, anything to show or tell them what hand the other person has, as the dealer gracefully pulls the discarded pile away, and swiftly thumbs the new cards.

The players shift in their seats.

Some players had poor hands, but the newest cards have given them an advantage.

Some players had a fairly decent hand but would have preferred a better one.

Others, hanging their heads in shame, they throw their cards down with a heavy sigh…not willing to bet, or even try to bluff for a win.

The dealer raises his eyebrows.

Who will raise the stakes?  Who will show their “tell” and give it all away by a twinge of their mouth or a tap of a finger?

Most players throw a few chips in.

Not a word is said.

The tension is building.  Spectators have crowded around the table. Not brave enough to join in but enthralled with the daring and recklessness that these players have.

It is time for the reveal.

Who will win?

One woman holds a pair of nines.

An older gentleman, he had bet everything he had left…on his straight.

It was the young man though. The one who had been quiet and unobtrusive the entire time. He was holding a Royal Flush, yet to everyone’s surprise, he didn’t gloat. He stood, accepting the round of applause for his strategy and discipline. He then, walked away, leaving all his chips on the table.

A young woman, her eyes bright and sharp, chased after him. She yelled, “Sir, you forgot all the money you won!”

He turned back, and said, “It was never about winning. It was simply for the joy of playing.”

*******************************************************************************

Which player are you?

How are you playing the cards you have been dealt? Sure, you could hand in a few cards and hope for a better hand. But if you can’t find happiness and the thrill of living in what you have, what makes you think you can with an entirely different hand.

Can you play the game simply for the joy of living, or are you still searching for different cards to make you happy?

Something to ponder…