She has grit…

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

She has grit.

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

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

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

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

Instead, I try for reassurances.

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

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

Her voice is strong.

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


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

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

She has grit.

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

Let’s pray it’s enough….

❤ Matthew Wild

His pride will be the death of him…

His pride will be the death of him.

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

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

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

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

His independence will be the death of him.

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

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

His vanity will be death of him long before ALS.

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

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

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

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

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

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

His stubbornness will be the death of him.

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

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

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

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

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

His pride will be the death of him…❤

Freedom can wait…

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

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

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

This is when I feel it the most.

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

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

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

I am late.

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

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

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

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

And this thought terrifies me…

The sacrifice we all make

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

Welcome to our world!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where am I going with all of this?

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

Trust me, I get it!

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

I am scared.

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

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

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

Time.

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

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

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

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

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

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

❤ Matthew Wild

a man and his dog…

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

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

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

I did notice him.

I walked towards him.

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

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

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

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

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

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

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

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

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

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

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

No Loitering Allowed!

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

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

His name is Joe.

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

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

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

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

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

I agree with him.

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

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

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

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

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

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

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

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

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

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

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

We are all worthy of being noticed…

 Matthew Wild

and still, she persists…

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And still, she persists…

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

“Hurry Mom, dad needs you!”

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

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

And still, she persists…

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

And still, she persists…

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

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

And still, she persists…

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

The sweat beads along her brow.

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

And still, she persists…

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

And still, she persists…

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

And still, she persists…

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

And still, she persists…

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

And still, she persists…

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

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

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

And still, she persists…

 Matthew Wild

 

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?”

When angels have to leave…

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“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…

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.