It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
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.
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
He held the phone up to his ear and waited.
The receptionist had asked him if he would mind holding. In fact, he did mind, but she gave no time for a reply before the swift click and soft music filled his ears. He glanced down at the business card in his hand. The letters seemed foreign to him. Curved letters shaped into a name of a person he had never heard of, with a fancy title below it. A special kind of doctor, who had a special kind of business card.
His family physician had suggested he make the call. Unable to determine what was happening, but knowing that something was not quite right, it was time to look for answers from a specialist. As the irritating harp music continued its melody on the other end, he wondered how much longer he would have to wait.
The music stopped, and a soft voice said,
“Thank you for holding, how can I help you?”
Six weeks. It would take six weeks to be seen, and no, there was no one else who could see him any sooner. This was his only option.
He found himself sitting on an awkward and uncomfortable contraption that resembled a small bed, covered in tissue paper as he continued to stare down at his hands. The words were still echoing throughout his head, but somehow he couldn’t grasp what was being said to him.
He waited for the words to sink in, but somewhere deep inside he had already known.
He waited for the sounds of his wife’s sobs to quiet. Slowly his head inched up, his eyes meeting those of the doctor. He tried not to flinch, knowing the familiar look of pity on the doctor’s face.
He waited for the realization to finally set in.
He was dying…
Weeks went by.
On hold once again, he waited to talk to the insurance agent who would walk him through all the details of policies. The policies he had been buying, the policies that would take affect in six months, and the policies that would take affect after he was gone. The policies that he had paid for, but in fact, did him or his family absolutely no good.
The lawyer made him wait in the lobby before ushering him in. A final glance over his estate and final wishes, and a hand shake later, he walked out of the office. The bill would come in the mail.
He waited to speak to the funeral director.
Walking in, trying to ignore the gravity of his situation, he made his choices. No fancy frills or designs. Simple and easy, much like how he had lived his life.
The months dragged on.
He checked all the boxes on his to-do list.
His final will, his funeral, his estate…all planned.
A final trip with the family to Disneyland.
He found himself waiting once again.
The children all smiles, as they held their babies and absorbed the chaos around them, he simply had no energy to try to keep up his grandchildren. Instead, he sat as they went from one attraction to another.
Dying is not an easy feat.
As his body became weaker, and he relied more and more on those around him, waiting became a part of his days and routine. Months slowly passed by, and with it, he lost more and more ability to care for himself.
He waited to be showered.
He waited to be fed.
He waited for someone to scratch his back and blow his nose.
He waited to be cleaned up, often sitting in his own urine for hours. He waited, his eyes filling with tears when he had to wait to be cleaned when his body would betray him. The mess only making the situation that much more difficult to bear.
He waited for the turning of the seasons. He waited for someone to come visit him, anyone to break up the monotony of his days.
He turned his head to glance out the window. It was summer, and while life had gone on around him, he was still waiting.
He found himself lost in his own thoughts.
How many times in his life did he wait?
He put off vacations to work longer and harder.
He put off dates with his wife, even after his career was well established and they had the extra income.
He put off retirement, too scared to consider slowing down. Now, as he lay there waiting, he found himself regretting so much.
There was nothing to do now but wait and think. His thoughts were often the only thing to keep him company throughout the days.
He felt tears of shame and guilt.
The years when his children were young played back like a movie in his mind. All the times he was too tired to throw the ball or play games. He was too busy to have tea-time with his daughter. If he had only known how fast those years would fly by.
He recalled all the times he was late to their recitals, and games, and concerts, if he even showed at all.
They spent their lives waiting for him.
His wife, asking year after year for that honeymoon that they were unable to go on. His shame at being poor and unable to provide fueling his desire to prove himself to her in the first years of their marriage, was then replaced with the need to stay as far away from the image of that poor man he feared he would become.
Several more months, and so many more losses along the way. No time to adjust before another loss and another aspect of their lives were stolen by this disease.
His wife sat beside his hospital bed; her fingers curled around his hand. He wanted to apologize, but his mouth no longer formed the words. His breathe so faint and weak, she wouldn’t have heard the words anyway. He felt sadness for the missed time and opportunities. He felt ashamed at not making her more of a priority. He never should have put her on hold, assuming retirement would be when they would finally experience their life together. She had given him children, and created a home, and stayed by his side throughout their life, and he had made her wait.
It was time.
Everyone was now waiting on him. His children circled the bed. The grandchildren were long tucked into their own beds. They stood around his hospital bed, their soft sobs hidden behind tissues. The sun had set hours ago. Their voices in hushed tones.
His breathe came in jagged gasps. His body heaving and struggling.
It was too late to worry about the past. He hoped they would understand he had loved them and had lived his life for them. There was no more time.
If he had only known, maybe he could have shown them more.
Listening as his body slowly stopped its fight for life.
He wanted so badly to hold them once more, to tell them how much he loved them.
But he was tired of waiting. He couldn’t be mad at the disease any longer. He had no one to blame but himself. He had had time. And he had wasted it.
It was time to go.
He didn’t want them waiting on him any longer.
He let go.
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…
Can you just see me for a minute?
Not my face, not the outside of me…not the funny memes I post or the inspirational quotes.
The real me.
I just need you to know that today is one of those days, where I am tired, mentally and physically. I managed to get a few hours of sleep, and then I was up and down the rest of the night. No different than any other night. A few hours here and there. My baby boy crawled into bed, not feeling well. The dogs ran in and out of the damn dog door, creating chaos over imaginary images they needed to protect us against.
I went to lay on the couch, but Matthew called for a sip of water as soon as I dozed off…Then a few hours later, he needed another one. I stumble around, trying to reach for the urinal, helping him, as my eyes close out of sheer exhaustion. Trying hard not to spill it back on him, as my body sways, eyes burning from exhaustion
The couch hurts my back, but there is no room on my bed with a growing boy who kicks and squirms throughout the twilight hours.
My alarm buzzes my arm at 6 am.
I talk to myself.
Sometimes, I count down the hours.
“I only have one hour before the kids go off to school.”
“What can I put off for tomorrow or next week?”
“Why is the coffee not kicking in?”
“How soon can I go back to sleep?”
I ignore the pain in my back, and the pain that is back in my wrists again. My stomach is hurting, but there is no time to be sick.
Can you please just see that I am trying?
I feel like an imposter most days. Smiling when I feel anything but happy. How can I keep doing this? How long can I keep pushing?
I need my children to keep a sense of normalcy in their lives.
Dinner, homework, chores, sports, friends.
Normal happy memories to remember.
Make sure that Matthew doesn’t feel like a burden. Even though he wants to lay back in his wheelchair, needing pillows fluffed, blankets and heaters…three times throughout the day. Stop what I am doing to help him..again. Please don’t make me go back in there again. I try to keep the irritation from my face.
I don’t want to fix dinner…
Pull the chair up to the table and dish the food into his mouth. Don’t spill. I just showered him. Ask him what food he wants, which bite of what food he prefers. Be aware that he should still have a say in how he eats.
Ask the kids what they are grateful for…remind myself to do the same. Find things to be grateful about. I have a good life. I have many things to be grateful for….so why do some days feel so heavy?
Don’t eat what he is eating. Those damn twenty pounds refuse to budge. Of course, its my fault. I am the one who drinks the wine, finding a momentary bliss of numbness with each glass that goes down so easily and I am the one who sneaks the bites of food that he is craving…food I would normally never buy on a regular basis, but now have to because he craves it. His jaw is slowly weakening. Let him eat.
Someday soon, he won’t be able to.
I didn’t make it to the gym again. I used to love to get up early and go. But it feels like one more thing on my to-do list. My body hurts.
I am lonely. I am lonely for conversation. I can’t remember the last time I sat and talked to someone for the enjoyment of just having that back and forth. I am lonely for companionship and to be touched. I miss having freedom.. To go to bed without having to first put him in bed. To get up in the morning, and to come and go as I please. To join girlfriends for drinks in the evening, without having to plan weeks in advance. To dance! I miss dancing. I miss laughing so hard I snort. I miss so many things.
I am worried. How much longer can Matthew stay strong. How can I keep my irritation at bay, that he has no one to talk to, or visit. How strange that he sits there, day in and day out, all alone, watching tv or facebook. He doesn’t lean on me either. I think because its easier to ignore it than to address it. I try to remember that it’s been almost 5 years. Life goes on…well, for everyone but us.
It does no good to talk about ALS, or how it is to manage it, if I can’t be real about the actual struggles of dealing with it, every day. What is the point of social media, or writing at all.
I don’t assume that my struggles are any more difficult than the next person’s. We all face unbelievable adversity; challenges we never saw coming or could possibly prepare for. But today..today is just a bit heavier than most for me.
And I needed someone to see me, the real me…for just a minute.
And I need to see you; the struggles you are facing, and to know that I am here in case you need to vent or need a friend to lean on. Because honestly, what the hell is the point of this thing called “life” if we have lost the most important connection of all?
To be seen..
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…
The pounding at the door had some strange sense of urgency to it. I glance at the caregiver, my eyebrow raised.
I wasn’t expecting anyone else for the day.
“Tell them I died and to go away!”
I hear voices at the door. She yells for me to come to the door. I groan. I can’t be seen like this!
I glance down and yell out.
I am wearing an over-sized shirt, one of Matthew’s old ones. It is at least five sizes too big. I haven’t showered or even brushed my teeth yet and the morning is almost over. My face is bare, my hair piled high on top of my head.
I don’t want anyone else to see me like this. It’s bad enough that the caregiver, the occupational therapist, the carpooling kids, the crossing guards, and who knows who else has had to see me today in total disarray…
I am slightly annoyed at this minor inconvenience.
Seriously, who could it be?
The Occupational therapist was already in the bedroom, performing Matthew’s “exercises” for the day, and physical therapy and massage therapy were already done for the week. The lady who checks the machine isn’t due for another week.
No one else ever stops by during the day.
I hear the door close, and footsteps walking down the hallway, more like elephants stomping and the caregiver telling me I need to see this.
I am hiding in the kitchen.
The footsteps draw closer.
I see the giant bouquet before I see anything else.
A giant bouquet of roses.
Eighteen of them to be exact!
Long stem roses, white and soft pink, arranged in a large vase, carried by a wisp of a girl. The roses must have weighed almost as much as her.
A smile spreads across my face.
She sets the roses on the table, along with two small bags. The names of my two youngest children are written on the bags.
Again, I can’t stop smiling.
I tell the girl thank you and watch as she stomps out. (for such a small thing, she sure is loud!)
And I shake my head..once again amazed at my husband and his thoughtfulness….and lack of ability to follow directions.
I walk into the bedroom, that same smile still spread on my face to find him, like a small, anxious boy, ready to burst.
“I thought we agreed not to exchange gifts this year, since we are going to dinner?” My eyebrow is raised again. I am trying to look stern, but it isn’t working.
“That rule was made after this was arranged. And there are no take backs!” His eyes are twinkling.
I shake my head, lean my arms against his wheelchair and give him an eskimo kiss.
“What did you get for P and K?”
“Well, it’s their anniversary too!”
And just like that…I remember why I love this man.
He is compassionate, kind and caring. He is thoughtful and sweet and generous beyond anything I have ever seen. He is also, by far, the most romantic man I have ever met in my life. He knows me better than I know myself. He is my biggest fan, and for some strange reason he loves me.
And he loves my children as much as I do…
Happy Anniversary, babe!
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.
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.
“So” I say, “What was the best part of your day?”
She must have noticed how my face fell in disappointment as my head turned, first to the right, and then to the left of me. I had run into the store to grab a prescription, leaving everyone waiting in the car. As I went to close my door, he asks me to quickly grab him something as well.
I nod my head, irritated as I hurry inside.
Matthew had a craving for Reese’s Peanut Butter Cups lately and asked me to grab a few. I tried to remind him that we had plenty of M&M’s and Kit Kats at the house, sitting in the freezer. The kids had been gone for several days, so the candy hadn’t been gobbled up just yet. But, no, his craving was specific, and judging from previous experience, if I don’t acquiesce, than the craving builds into some incredible hunger monster of epic proportions, often resulting in his “Go BIG or go home” philosophy that ends up with him miserable and having a stomach ache.
Now, I am standing there, prescription paid for in one hand, and three king sized Reese’s packages in the other, hoping to get through the checkout in a minute or two…not the twenty minutes it looked as if it were going to take, judging by the long line of full grocery carts in front of me.
“Would you like to go in front of me?”
I looked up into a sweet face, waving for me to come closer.
“That would be great, thank you!”
I squeezed in between the cart and her, sucking in my stomach as I did this, shuffling my feet in a strange dance as I place the candy bars down on the conveyor belt. In full disclosure, sucking in my stomach does not, in fact, make my ass any smaller as I try this…but it is always worth a try.
I had noticed, as this older lady and I had done our strange shuffle dance, that she had a bandage just under her shirt. I assume it is a port, and I try to glance away quickly so as not to make her uncomfortable that I had been staring. My eyes venture over to the stacks of pizza boxes and frozen egg rolls, and various other over-processed foods. Maybe she has a Matthew at home as well.
She reaches over to rearrange the food, smiling.
“My grandsons are coming over tonight for a sleep over. They are bringing some friends and instead of cooking, I am hoping this might be enough to fill them up for a while!”
I know all too well how hard it is to feed the never-ending pit of teenage appetites. I learn that her grandsons are in their teenage years but still love coming over to Grandma’s house. I share with her I how I can’t wait to become a grandma!
I quickly clarify that I can in fact wait, as my oldest is not quite 18 years old, but that I am looking forward to spoiling babies…only handing them back when I am done!
She mentions that she has enjoyed having her grandbabies over since she moved her almost thirteen years ago.
We talk more about parenting and the joys of kids.
She tells me how perfect her grandkids are. I nod, telling her that my children are also pretty perfect.
“It’s the parents, you know.” She leans in to tell me this as if it’s a secret between us. I laugh, telling her I don’t think I had much to do with it. I was really just blessed with great kids.
“When people tell me that kids today are awful, I just don’t agree! It’s the PARENTS that are awful!”
I can’t help but agree with her a bit on this.
She mentions the cancer.
She is doing really well with the chemo. In fact, today was her anniversary and she celebrated by having another chemo round. Her husband wasn’t doing anything to celebrate, but she seems content with feeding teenage boys with copious amounts of junk food.
She proudly pats the stylish grey bob on her head, “I did lose my hair, but I have plenty still to spare!”
I tell her I am sorry but that I am glad she is still feeling so well.
“It was more emotionally hard seeing all the other patients come in, looking sicker and sicker with each round.”
I nod in agreement again. I have no experience with that, but I can imagine it must be really scary and difficult not knowing.
She says how thankful she is, because she knows it can be worse.
I mention that my husband has ALS but that I have learned to find even the smallest things to be grateful for.
Her eyes widen, and then fall as they fill with sadness, her hand squeezing my forearm.
She gets it…
I give her a small smile, trying to comfort her as she tries to apologize for something she has no control over.
I don’t have any person experience with cancer. I know people who have had cancer. I knew people who have passed from cancer, but my experience with having a close loved one with cancer and caring for them is next to nothing.
However, there is something comforting about looking into another person’s eyes and finding compassion and understanding.
For just a moment, two complete strangers were able to connect about how life isn’t fair, but that joy can still be found in the love for family, a few boxes of pizza and maybe a Reese’s peanut butter cup or two.
And that craving of Matthew’s?
Yeah, those king-sized bars made their way into the freezer, along the other piles of junk food…
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.”
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: