love – ALS Fact of the Day~

4 lessons on Becoming Uncrushable

“This is so hard”

“Yes, it is” I told her. I can hear the heartbreak in her voice, though we have never met.

“And it will continue to get harder,” I tell her.

I listened to her anguish and grief, as she processes that this is, in fact, very much her new reality. This is her life. And no one is coming to save her.

Her three children, somewhere between 6 to 11 years old will now have to process watching their loved one weaken and fade from a progressive and chronic disease. Their father has ALS.

He is slower progressing than most. Diagnosed more than 4 years ago. But now…now it is becoming real. The slower progression gave them a false sense of security. But now, his physical losses are becoming noticeable.

They need over $130K to remodel their home. He can no longer work at the pace he had been, let alone at a pace that would justify keeping his employment. I can sense as she paints the story for me, that he is reluctant to quit. Yet his care needs continue to intensify. The disease does not just rob him, it begins slowly stealing moments from his family. The kids are noticing that there are more replies of “no” than “yes” when they ask to go do all the things that young children want to do. They begin feeling absent from their friend groups. She is starting to feel the heavy weight of these losses as they all are unable to do their everyday normal activities. Dad’s care is taking every ounce of energy the mom has.

She is beginning to panic. Where once she felt this was manageable, she is quickly realizing she is getting in over her head, and she was naïve in not preparing more, sooner.

They have some resources and some family support to help them create a safe home for him, but the cost comes at a steep price.

I wanted to give her some perspective. But how do you prepare a young mother that her life will increasingly only become more difficult?

She mentions her therapist.

Oh Thank Goodness!

Therapy is almost vital through this journey. She shares that her therapist’s words of wisdom was that she would soon be a widow and she could move on with her life. That this too shall pass.

Hmmmm…I bite my tongue harder than I intend. That was not anything that I expected a professional therapist to suggest or offer by means of support

She laughs softly and I can almost visualize her sad smile and small shake of her head. She doesn’t want to look forward to becoming a widow. She wants her husband to be well, and her children to have a father. She is most definitely not looking forward to his death.

BTW—-Why would anyone think that would be acceptable advice?

This is not quite the approach I would have gone with. I gasp not only in shock but indignation and then I have no choice but to laugh along with her. Others can never understand until it happens to them. And more than likely, it will happen to them in some capacity in their lifetime. Almost everyone will be a caregiver or need a caregiver in their lifetime. Yet, there is something that is devastatingly different about a disease such as ALS. I remember what it was like for me in those first few years with small children, all similar ages, and I convey to her some thoughts and ideas that can give her what I hope are REAL coping skills. Tangible things she can start using right now. Things I wish someone would have shared with me.

Let’s imagine this is you.

(For the record, I hope you never have to live through anything like this, but in case you do, or you currently are in the arena of progressive diseases, or disabilities or injuries that severely hinder your everyday living, getting your ass kicked and handed to you daily fighting the overwhelming learning curve of searching for meaning, purpose or happiness through this journey, I wanted to give some semblance of advice I wish I had known 10 years ago when Matthew was diagnosed. )

Here are 4 things that I shared with her, and maybe if I share it here with you, in the hopes that what ever you are going through today, you can use one or more of these lessons I have learned to help you get through the month, the week, the day or even the hour.

1. Stop expecting people to show up the way you expect them to.

What does that mean? It means we often subconsciously assume people will step up for us, depending on the role that they play in our lives.

Imagine for a moment that your spouse has been diagnosed with ALS.

The doctors have told you to prepare for the worst.

You share this dreadful news with family and friends. Everyone is devastated. The well wishes and prayers begin. People start showing up with food, flowers, offers of support, followed by well-intentioned but misguided suggestions.

Anything from, “Are you sure it’s not Lyme’s Disease”

“Just let me know what you need.” Thus adding one more decision you have to make and adding pressure on you to know what you can ask that that individual would even be able to help with. It becomes daunting trying to ask each person something that would be in their capabilities.

My personal favorites…”Do you think it is caused by vaccines?” and “I’ll pray for you.” (Please don’t send hate mail. I am sure your prayers are appreciated, but I believe in taking action, not just praying.)

Yet where do you begin? You are overwhelmed with trying to learn about what progressive and chronic will actually mean in your everyday world.

What will Insurance cover, what policy is best? Should you take money from your retirement? What are the most important things to consider? You know this means a completely different set of financial pitfalls and have no idea how to prepare financially, physically or emotionally.

Will you have to quit your job? Where will you get the funds to acquire all the durable medical equipment necessary? As you search online, you see example after example of the extraordinary costs for everything? How will you manage getting a new vehicle, ($100,000), remodeling a home ($$$$$) medications (can cost $$$$ each month) and cover all your ordinary expenses, after your loved one is on a smaller, fixed income from Social Security Disability Insurance and your income is sure to be gone when crunch time happens and he can no longer be alone without someone there at all time.

How will your children cope with this? Are you strong enough to manage all of this? When you begin to look around, it seems truly daunting and there is no playbook on how to navigate all of this.

When some of the dust settles, you begin asking friends and family to jump in but the offers become less and less. You notice that as the disease progresses, the people you thought would be there are suddenly moving on with their own lives. Maybe there were cards of condolences sent, and again prayers, but as the days evolve into months, and maybe even years, the family and friends who were so adamant that they would be there, are now very busy in their own lives.

How did this happen? Where is this support that was promised?

I know we think we would NEVER do this to our own loved ones, but guess what?

WE ALL DO IT EVERY DAY!

We all have busy schedules, and too much on our plates. We all have our own set of priorities, and it is not their responsibility to save us. Find gratitude for those who show up, let go of those who haven’t or simply can’t. However, hear me when I say that expecting parents, siblings, cousins or friends to understand this, or what your everyday life looks like, will only cause you to become unbelievably pissed off.

My advice?

Stop assuming that family and friends have the capacity to not only show up consistently, but that they would intuitively know what it is you are going to need in a day-to-day basis. It is not fair to them, and definitely not fair to you.

One more time for the people in the back!

Stop assuming people will show up the way you expect them to! This only causes bitterness and resentment!!!

2. Let go of the things that don’t really matter.

Do the dishes really have to be done every night? If you are tired, let it go. Does the laundry have to be folded or can it wait? Do you really have to run a different errand every single day? What about all the toys and clutter around the house, or the projects or things you thought you would get to? Are they really necessary right now?

Learn to consolidate. Automate as many things on the to-do list as possible. Let go of clutter! Clutter adds chaos which leads to anxiety and stress. The more you can automate or let go of, the less you have to carry on your shoulders. I think Marie Kondo was onto something… learn to let go of anything that needs to be taken care of that does not bring you joy. Simplify, simplify, simplify.

I promise that this helps with decision fatigue. As the days and weeks go by, and you are the primary caregiver (with or without children or others that need your attention) you will feel the added burden of trying to do things the way you used to, and I am sorry to be the one to say this, but you are no longer going to be able to do things the way you used to.

3. The Most Important Tool in this journey..A WHITEBOARD

Seriously…Get a White Board and hang it somewhere where everyone can see it!

I get it..this wasn’t anything you thought I would say. And I get it, its not exactly the ambience you were going for when you chose the décor. However, beyond all the styling, revamping, redecorating or staging of your home, the one thing that is most vital to your sense of well-being and support is the WHITEBOARD!

A White board?

YES!!

Why?

Because this is where you communicate your needs! This the place where you list all the things you need or want or are too afraid to ask for!!

Stay with me for just a second on this. I believe people want to help, contribute or support us, but they don’t know how. They want to bless us with their gifts.

No really!

I still believe in the good of humankind. However, when we ask for the things we need and those around us don’t have that skill set, they will evade our texts, or calls, and yes, sometimes even disappear, and you become angry and even more stressed than you can imagine.

Some additional ideas for the whiteboard:

• Vehicle maintenance – including oil changes, filling up with gas, rotating the tires or even a car wash

• Change out lightbulbs, or small honey-do items around the house as they pop up.

• Help with gutter cleaning, snow removal, or raking or mowing or even ask for 3 months of hiring someone else to help in these areas

• Garage organization

• Medical supply labeling and organizing small spaces for maximum efficiency.

• Ride-along requests for the children to participate in sports or activities that you can no longer manage

This is YOUR whiteboard. Do what you need to make it work for you and your family. You have a WANTS versus NEEDS? List them!

As people come in and out of your home, they will see this list.

Guess what? They may just volunteer to help with the item listed that fits their skill set!

Not everyone is comfortable being a caregiver to someone on an intimate level. Not everyone knows how to cook, or organize, and you may not feel that that is where you could feel supported. Facebook can be more frustrating to use, as you’ll soon realize that posting on social media seldom gets people scrambling to help and instead you area again left with a “prayer” or a “like.”

This leads me to my 4th bullet point

4. Learn to be direct and ask for what you need!

I have been a caregiver to someone with ALS for almost 10 years. I often tell families that a diagnosis is not a prognosis. This disease is different for each person and the trajectory for how it will move is not an absolute. It may not only affect your family for the 3-5 year average life expectancy that is told to you from your diagnosing physician.

This is a marathon, not a sprint.

Which means you will need to re-learn how to communicate. Learn to be direct.

Need an overnight away to recharge? Ask for it?

Need a coffee date with a friend for few hours? Ask for it!

Need more caregiving help? ASK FOR IT!

I get it. Your person only wants you. You have a routine. You know what they need before they even indicate otherwise. But this level of caregiving is untenable for anyone long term. Yes, you will feel guilty for leaving them, even for short periods of time. They may even make you feel guilty. Stand firm in this.

Caregiver burnout is real.

You have to find ways to re-charge…I mean really re-charge. Scrolling on your phone is not considered downtime, either. The ability to go to for a walk, to a movie or a play, or fun events that others are going to. It is so important that you take the time for yourself and away from the person you are caring for. In fact, it is absolutely vital.

You do not possess superpowers. You are a finite resource. Burn yourself out, and who is going to steer the ship?

No family? Look into raising funds through online fundraisers, or ask family members to help cover the cost of a caregiver to help relieve you from time to time. Never feel guilt to bring in a paid person to help.

I realize this goes against your pride and ego and dignity. After all, you have managed this long. How bad could it get?

The reality?

It can lead to complete mental breakdowns. If taking care of you seems like the last on the to-do list, consider this. Without your well-being, you are putting those around you at risk. Re-charging in necessary, or your health will suffer. Then all that suffering alone has left everyone without support. Advocate for yourself just as much as you advocate for your loved ones.

There is no shame in needing help, in needing a break and in needing others to also support your efforts. I am going to probably make several people angry with this last statement, but until they have walked in our shoes, their opinion means very little.

You are more important than the person you are caring for!

Yep! That’s right. I said it!

Sounds harsh right?

But the reality is, the primary caregiver, the one who manages absolutely all of it…with or without professional caregiving support..is the most important aspect of this dynamic. Without the caregiver, the person is often neglected, their care suffers, their health is impacted and the costs to dig out of these situations are unimaginable.

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I’ll leave you with this.

Life isn’t fair. It never has been and never will be. It is not what happens on this journey of life, but how you respond.

It is easy to sit in sadness, and despair. Don’t get comfortable there.

People before you have lived with challenges beyond anything we can imagine, and even more people in the future will as well. What inspires you about these people? How do they rise to the occasion.

Learn to accept that you are not going to have all the answers, you are not as in control as you may think you are…but you do have more strength than you ever thought possible.

I am not an inspiration, though I am told often enough that I am. I do, however, have years of experience and perspective and I have learned that this is life.

That’s it.

It is just life. Put one foot in front of the other. This is not forever, this is just right now. Try to lean into the hard, laugh when you can, and find joy in the every day beauty that is all around us. You are not alone, I can promise you this.

As for me? These are the cards I have been dealt and I plan to play the shit out of them!

Matthew Wild

#uncrushablespirit #caregiversupport #ALS

Seven years and a day…

It’s been seven years, and a day.

Seven years and a day since my life came to a crossroads. I don’t think I fully appreciated that moment or the profound impact it would have on my life. I doubt I realized the significance of what my decision would mean for me, let alone for my children. Or how it would affect us all for what is sure to be the rest of my life, and a majority of my children’s childhood and youth, if not for the rest of theirs. I doubt any of us realize while we are in the middle of life altering moments. But I was faced with an important decision to make.

To stay…Or to walk away.

Seven years and a month ago.

WebMD became my best resource, or worst obsession, depending on how one views these types of frantic midnight internet searches. Inserting key phrases or words such as: Weakness, muscle cramping, fatigue. Inability to grasp a pencil. Unable to type on a keyboard, or to zip a coat. Weakness in hands.

Seven years and roughly two weeks ago, I knew that Matthew was sick. I didn’t want to believe it could be real. But all indications pointed to an unexpected diagnosis. He was only 41 years old.

Seven years and a week ago, the EMG results had returned, and the bloodwork had been ran..and re-ran again.

Seven years and a day ago, an MRI was ordered.

Seven years and a day ago, the doctor’s office called. They wanted to see Matthew. The appointment was set for that afternoon.

That wasn’t good.

We tiptoed around the issue all day. “Wasn’t he so lucky that he had a family doctor that could rush these types of things along?” I would say, not making eye contact, but trying unsuccessfully to skirt around what we both were thinking, but neither brave enough to say it.

“I think it’s a pinched nerve. Why else would he ask for an MRI?” I would just nod along. He knew. I knew. But neither of us seemed willing to acknowledge or give any indication to the other what it was we were both privy to. The nurse calls us back. I am holding his hand, both of us grasping tightly to one another as we walked down the corridor. I noticed that the office staff never made eye contact. They were busy looking at invisible data on a clip board.

They know.

The doctor walks in. The exam table is empty. Instead, we were side by side, sitting in those horrible plastic chairs that should have been left back in elementary school. He doesn’t leave much for small talk, just sets the folder down, takes a seat on the small circular stool and looks Matthew in the eyes. We all knew, but it doesn’t mean that hearing it for the first time is any less shocking. He seems to brace his hands on his knees, as he takes a big inhale.

“I am sorry, but I believe you have ALS.”

Matter of fact.

Just like that, it is now the truth. There is no way to tuck this back where it came from, or brush it off to the side. There is no avoiding the elephant in the room now.

Matthew is dying.

The doctor answers some perfunctory questions, leaving with a handshake and a pat on the shoulder, wishing him luck in his future endeavors. With a recommendation to get a second opinion, he gently closed the door behind him.

I never see that doctor again.

Seven years ago today…we laid next to each other. We didn’t touch, we hardly spoke…. Processing, replaying the day before. The words that were spoken. The heaviness that death was closer than we realized. Neither of us really talking about those three letters. There was just too much.

Dying?

How is that even possible? Weren’t we just talking about our plans? Weren’t we just laughing? How did this happen?

The following day, we told his father.

The day after, his brothers.

There were tears. So many tears. There was disbelief. There was anger. There was grief. We were in shock. Everything felt blurry…or off kilter. Nothing seemed quite right. I didn’t know what to do, or what to say. I just laid beside him.

The world kept turning.

The days went by. We kept trying to understand what this meant. What does it mean to be dying? You might think that is a silly question, but have you ever actually thought about what it means to learn how to die?

How does one navigate a terminal illness?

I had no experience in caring for someone with a terminal disease, and certainly no one to turn towards to guide me. I have been and still am making this all up as I go along. I have no more of an idea of how to live this kind of a life than anyone else. The number of emotions that flooded through me, wave after intense wave, over and over again, beating me down. I felt as if I could never quite catch my breath, and that I was suddenly battling some unknown demon. One that I had no chance of beating.

Time

I was battling against time.

I turned my life upside down.

No…ALS turned my life upside down.

I was lost. I was grieving. I was angry.

I didn’t plan for this.

I realize that you might be thinking that Matthew didn’t plan for this either, and you would be right, he didn’t. But I barely knew Matthew. If this situation had been different, and we had been married for years, maybe my reaction would have been different. But I didn’t know the etiquette or proper way to respond or how to navigate or be of any type of support for a boyfriend who has been diagnosed with one of the worst diseases known to humans. A boyfriend that I had just barely begun to date. I was still just trying to figure out my own life. After going through a separation from my first marriage and having three small kids to raise, to this. Why? Why this on top of everything else?

Two years…maybe three. That is what they said. He would deteriorate. He would die and there was nothing we could do to slow it down. There was nothing to stop this trajectory we found ourselves on. That is what we were told, so that is what we prepared for. We buckled up and rode that roller coaster.

His progression was so fast. The year went by even faster.

Live as much as we can, cram everything in, in two years, maybe three. Travel. Travel often and travel far!

Buy a house. Remodel it for full paralysis. We don’t know what to tell the contractors we want, but we learn really fast that handicapped accessible doesn’t mean a damn thing in the world of ALS.

There didn’t seem to be anyone to show us the wrong way, or the right way. I felt completely alone. I was navigating a completely uncharted territory. Death, I was familiar with. But this..this isn’t death. This is preparation for death, yet a constant anxiety of waiting for a disease that chooses how much it takes and when.

Meeting families who are diagnosed and their loved one passes in less than a year. Others who live three years, maybe five. Most never make it to year five. People warn us…they tell us to prepare. I am constantly filled with worry, and anxiety and dread. I imagine every possible scenario, and I am petrified that something will happen that I am not prepared for. But I am not sure what I am supposed to be preparing for, so I prepare for everything. I research papers on ALS and diets, ALS and metals, ALS and lyme disease, ALS and toxic levels, and ALS, and more ALS.

I join online support groups, specifically targeted at ALS caregivers and spouses, and bear witness to loss after loss. Story after story, it becomes too painful to read. I eventually stop reading them entirely. The continued frustrations of the emotional, psychological and physical toll the disease begins to take on everyone it touches is a continued theme, and I begin to see it around me as well.

We attempt normalcy. Or at least, I think we did. We continued living our life. We continued attending music concerts, and plays. We watched the children grow and we went to volleyball and soccer and cross country meets. There were choir concerts and graduations, birthdays and holidays. We hosted massive gatherings at our home, in an attempt to keep people around us.

I try to keep some semblance of normalcy when there was nothing but change.

It started with helping him dress. Socks were the most difficult. Soon I was cutting his food into smaller bites. I was carrying all the bags. I was re-arranging my schedule for school, and three small children and all the other activities, demands and chores around doctor’s visits, and therapy and still…more doctors.

It became harder for him to navigate stairs. To stand up out of a chair. He still looked healthy. And as the disease continued to silently ravage his body, his spirit never breaks. Meanwhile, I feel as if I am breaking into a million tiny pieces.

Matthew seems to accept whatever fate has dished out. I, on the other hand, am fighting against this with everything I have.

to be continued…

happy birthday, baby girl!

50 Mother Daughter Quotes That Will Have You Cherishing Your Bond - Just Simply Mom

They went by in the blink of an eye.

Twenty years…

I am in shock, laying here, remembering.

The morning that those two little pink lines appeared. The fear, the excitement, and the question of “NOW?”

We had nothing.

No home, no furniture. No real roots yet, nor any stability. At least, not the kind that a baby needs to thrive and grow, but still, you were on your way.

Having been told we would not be able to have a baby without thousands of dollars, and many new scientific procedures, I had put family planning on hold. After all, I was only 21 years old. There was plenty of time to worry about all of that later.

I was barely older than you are now when you became a reality.

You gave me serious heartburn.

The kind of heartburn where I was guzzling Maalox daily, yet still craving spicy foods. You were barely the size of a bean, and yet the energy it took to carry you still defies reason. I slept for hours, day and night.

As you grew, the excitement grew with you. Suddenly, that small little bump was large enough that others were taking notice. I may have even arched my back a bit, hoping others would see that small mound that I was so proud to be carrying.

There were challenges, of course.

Nothing in life is perfect…except you.

I didn’t know if you were a girl or a boy, and I didn’t really care. I assumed in my childlike naivete that you would be a boy because that is how babies are born..boys first, then a girl. I didn’t know what to do to plan for a girl. I was hardly the girl-kind of mom.

I had no idea what I was doing, or even how to prepare for you. Yet, I loved you.

You came into the world, unwillingly.

You were late. So late that the doctors decided to do whatever it would take to get you to make an entrance.

Your stubbornness almost killed us both.

At 22 years old, I held my perfect child in my arms, forgetting all the heartburn, the stretch marks and the intense pain of the last 24 hours, staring in awe and wonder at the tiny creation that lay before me. I had never known such love!

I wanted to be the perfect mother for you.

I read every book on child development, and stages and phases. I made all the baby foods from scratch, joined Mommy and Me classes. I wanted to be perfect for you.

I had no family to help, besides your father. He seemed to comprehend that my inability to change poopy diapers did not mean I was inept at other tasks, just that I gagged easily. I was jealous at how easy he made it look, while I fretted constantly about every little thing.

Your smile was infectious…it still is.

I loved being at home with you those first two years.

You were so sweet. Many people would stop to smile at you, as your face lights up and your spirit would shine through. Your energy was contagious. Those little legs carrying you beyond the trail ahead of me, little brown piggy tails swaying with each step. Every so often you would glance back at me, making sure I was still nearby. Yet, you have never needed me. You just needed the assurance I was there.

You have always been fierce.

You walked into daycare, and onto the kindergarten bus, into each new school and into the final years of high school on your own. With one glance back, to see if I was still watching, you smiled and waved.

I doubt you noticed each of those milestones, but I did.

I had no idea how fast these years would go by. If I could go back and do it all over again, I would. All the sick days, the temper tantrums, and the teenage fights. I would go back and re-live each day, just to cherish each of the moments more.

I had no idea ALS would come into our world.

For that, I am sorry.

I am sorry that these last seven years have been with a mother that is tired, and stressed, and not always attentive.

All those times you waited, or the many times I put you off to the side, because someone needed my help. You had to learn how to wait for my attention. Between the two little ones, the divorce and then ALS, you have sat patiently waiting for my attention.

If I could go back, do better, and be more for you, I would.

You are fierce.

You are just coming into adulthood, with an entire lifetime of memories to build. I am excited to see who you will become.

I am learning to sit back and watch. You have never wanted my advice, always choosing to do things on your own terms and on your own timeline.

You will make mistakes.

And I will still love you.

You will face unimaginable trials and challenges along the way.

I will still love you.

You have not found your passion yet. The spark that drives a person forward. My passion found me, and I have a feeling yours will find you. When it does, I know that you will be loyal to what ever that cause may be. You will tackle it with intensity and drive.

But for today, I will sit here, and remember the baby I held in my arms. The perfect child that came to me at just the right moment.

Today, I will remember all the sweetest of moments that you gave to me, and I will cherish them that much more. Because I know that the next 20 years will go by even faster.

Stay fierce, baby girl.

as if he never existed…

His birthday came and went, without so much as a mention, yet I am keenly aware of the day he was born.

Every year, as the date approaches on the calendar, there is a strong sense of something missing. I will try to move past it, over it, avoid it, but I am never able to ignore August 2nd. There will never be a Facebook notification to remind his friends and family to send well wishes. In fact, there is never even a mention that he existed. No memories shared, no one even spoke his name.

His presence is only known to a few, and he is seldom, if ever brought up in conversation.

As a young girl, there were no reminders placed around the home. Conversations were evaded. No keepsakes, and certainly no pictures. Maybe it was because the pain was too unbearable for a mother who had already lost so much, and it was easier to pretend he had never existed then to recognize he was truly gone.

I have an image of a young girl. Maybe eleven years old. She was tough. She was good at being cautious, choosing to wait and watch to see if the situation required her to shrink back, and remain unnoticed. It was safer that way.

Weathered by life and its cruelties already and untrusting of those around her, those sharp blue eyes knew how to scan a room in the blink of an eye, and feel it out.
Only if it felt safe would she let her guard down. Those moments were rare.

Yet this image is not of her with her armor built around her. This image is of her sobbing, wrapped around a woman sitting on a cheap kitchen chair, a rare occurrence even then. Mother and daughter entangled in limbs and blonde hair as that child held on, clinging frantically to the woman for comfort and the grief suddenly too much for that little body to continue to carry.

Her hair is swept back from her face into a ponytail, and her mother is stroking her back. An image of a woman holding a young child, maybe three or four would not seem awkward or even seem untoward. But this girl was too big to be sitting on her mother’s lap in such a fashion. Her body was too large for such a petite woman to be holding, but neither seemed willing to let go.

She had lied.

When asked about her brother by the new girl who just moved into the trailer park, she lied and said he was staying at his grandparents that summer. After all, the new child would certainly not be staying long in that desert hellhole. No one ever did. So the young girl with the tough façade and blonde hair pulled wildly back from her dirty face lied.

It came so easily.

It was so much easier to fall into make believe.

He was simply gone for the summer. But he would be back. She weaved all sorts of tales about his fun adventures for the summer and how she missed him, but he would be back in a couple of months.

That little tattletale ran off and started innocently talking about the girl in the trailer park; the wild one who rode fearlessly on her motorcycle, up and down the dirt paths and who seemed to be searching for something that was never there.

Oh, it was innocent enough, I am sure.

The little tattletale brat, with her short, ratty hair and missing teeth must have told her mother about a boy who was at his grandparents for the summer, but in fact, no longer existed.

When the mother sat on that rickety chair, asking why such a fearless young girl would lie…

I crumbled.
*****

I can remember his birthday, but I choose not to remember the date that he died. He was born August 2nd. He had a mop of messy brown hair, and sometimes when my son smiles up at me, I see pieces of that same boy looking up at me.

There are days when I don’t think about him. In fact, I did everything in my power to block any memory of him, choosing to use anger as a shield, and to ignore the date for as long as possible for many years around this time of the year. After all these years, the memory of him weaves in and out. There is still hurt and if I am honest, there is also still bitterness at the loss.

I am curious and want to know who he would have become. Would he have struggled and carried the hurt and the anger and the fear and let it engulf him, as so many others have? Would we have raised our babies by each other? Would he have continued to be my biggest protector and my biggest fan?

As my son approaches the same age as my brother before he died, I have an irrational fear of losing my son. They have so many similarities. Small for their age, reserved and guarded, choosing to watch and wait before jumping into a situation. They both share the same kind heart, and love for their mother, and strong dislike for school.

I can picture his gravestone. I am irritated at whoever decided he should have a motorcycle as a representation of his interests. That was certainly not what he was interested in.

He was 14 years old, with crooked teeth, and a small splatter of freckles across his nose. He wore his jean jacket as if it were an additional piece of skin. He loved the Beastie Boys and Weird Al Yankovic. He was learning to play the drums with any surface he could find. I would tell him to stop using my head as a drum and he would just laugh and walk away. Before he died, I was almost as tall as he was, which was beginning to bother him. It was often just the two of us, our mother, battling her own demons, was often gone.

The older we became, the bigger the messes we made. From cow tipping and chasing feral cats, to windmills and dissecting frogs on a broken-down farm in Kansas, to pick-pocketing drunks as they left the casinos in Nevada, to kinder memories of family gatherings in a small town in Wyoming, I let these memories take me away. Two siblings running wild through the fields, laughing, and sometimes fighting fiercely, but always relying on each other to get through another day.

*****

An older woman kindly asked me if I had any siblings. The usual pit in my stomach clenched, and I can feel my guard come up. The visceral reaction is all to familiar. It has been over thirty years and my body still responds the same way. All the voices in my head begin whispering loudly…”Don’t talk about him…Don’t tell anyone…It is nobody’s business… If they ask about him, just say that he died…it was an accident.”

Instead, I replied quietly,

“I had a brother, once.”

This time, I am standing as she sits. Her brown hair is not ratty, and she glances up at me. Her eyes are curious. She wonders if we were close. I tell her that we were the closest.

She smiles at me and says,

“I am glad you had him in your life.”

I pause. I had never considered it in that light.

I had focused for so long on what I lost, I forgot to focus on what I had!

I have to accept the pain, if I am going to remember the boy.

I remember so many little things…

He pulled thorny stickers from my feet and scolded me for constantly running around without any shoes on. He got into fist fights because of my loud mouth. We would mop the floor in our socks, with too much soap so we could slide around, falling and giggling at our ingenuity. He broke my collar bone because we were jumping out of the top of a closet and trying to do flips onto a bed and I got in the way. We had rips in our tattered Catholic uniforms because we slid down the roof of the barn and constantly snagged our butts on the nails that stuck out, as we fell into a pile of dry hay. The nuns didn’t like us, and often made us eat lunch on the steps of the school outside. We were often ostracized, but together, we didn’t seem to mind much.

We both loved watching Wheel of Fortune and he would call every night to try to win the puzzle that those watching at home could try to solve. Once, when he got through, there was a voice on the other side of the line, exclaiming he had won! But neither of us knew our address, so the prize went to someone else. He would roll his eyes at me because I loved to read but was secretly proud of me when I did good in school, even though he struggled with learning. And I always gave him the last bite of whatever we were sharing.

I would comfort him, and he would comfort me.

We were all we had. And for a short time, it was all I needed. And I loved him fiercely. I imagine I always will.

Maybe that is what life is all about. Feeling the good and the bad. Being grateful for what you do have, instead of focused on what you do not. And love….

Life should always be about loving those around us, even with the risk of losing them.

And from now on, I will be grateful that I had the privilege of having had the best big brother EVER!

❤ Matthew Wild

he makes it look easy…

He makes it look easy…

A slow procession of a death march, with no end in sight. If death comes for us all, why are so many left shocked by its suddenness? The grief of not having enough time to do the things that were desired, or the time to finish all those projects, where in the end, it mattered very little. He seems to be at peace with his past, the experiences he did have and the little time he has left. He has embraced the idea that his time is limited and views each day as an added bonus, when so many have passed through our lives and left, their time at the end was filled with immense sadness and despair.

The losses continue to pile up, and yet he moves through his day with a quiet acceptance of his situation. He never complains, even if it would be an appropriate response to rage, or cry or wail at the slow and steady losses he has experienced all these years. He seems to accept the unfairness of it all because who ever said life was fair?

He is patient with those around him. We see to his every need, and as those needs accumulate, he waits calmly, trying to explain in detail the exact spot he needs adjusted, or scratched, or seen to. The food that is carefully brought to his mouth, the bites smaller and the drinks taken more carefully from the hands that feed him. The many times one of us were too slow and he is left mortified at his inability to control his bodily functions, as he apologizes for the mess. Trying to assure him that it isn’t a problem, and quite honestly, it isn’t. Trying to find humor in a difficult situation is one we have all learned to master throughout the years.

He intentionally does everything within his power to make our life easier. Shouldn’t it be the other way around? When my patience has run out at the constant barrage of needs, he accepts that this is where we are and lets me find space to refill and recharge. When his patience has run out, he asks to lay back and meditate, pushing the negative away from him, and asks for the positive to fill his soul. I am jealous of his strength. And his ability to be still in a world filled with unease.

The immense guilt I feel at not being able to be more, do more, is often overpowering, and he will remind me that no one should have to be a caregiver 24/7. No one should be expected to carry it all alone, and yet I feel like a failure because he carries so much, and I feel as if I am not keeping up my end of the bargain. How can he be so accepting, and I am the one who feels such anger and sadness? I never said I would become his caregiver, nor did he expect me to assume the role, but it is where I found myself.

I did make a promise to be by his side throughout this journey. In the beginning, I felt only I could care for him the way he needs. I learned a few years ago, no one should carry this alone, and this would become a marathon, not a sprint. I still struggle with asking for help, or creating boundaries for myself to stay the resilient one. I have learned there are times to step away and let others fill the role of caregiver and take time to fill my soul so that when I return, I can continue to love him and care for him the way he needs. I am learning to say “no” more often so that the bitterness and frustration are avoided later.

I have spoken and listened to other families experiencing our same struggles. The sadness and the anger that is expressed by their loved one who is dying is just as deep as the person caring for them. Quite often that anger is directed at the closest people around them, which would seem by many outsiders to be a justifiable response during times like these, and yet he seems to have found a peace and acceptance from early on with this damn disease.

I am horrified and appalled at the behaviors of both caregivers and the persons dying, and yet I am also often not surprised. They are each carrying such a heavy load and feeling as if they are each marooned on separate islands. The loneliness and solitude felt by both are only experienced greater when they don’t communicate or don’t know where to lay those emotions down. Each side feels grief, and guilt and a desperate urge for it all to be over…yet knowing when its over, the finality of it all feels daunting and unknown for both and fear is an unwanted addition.

I have felt the waves of intense grief, anger and despair. Days where it engulfs me, and other days where these emotions pool around my feet. I lean on him, needing his strength and his calm. It feels so unfair that I am not the strong one.

He makes it look easy…

#uncrushablespirit

warriors…

Tonight is not about me. Tonight is not about my journey, or those around me…at least not in regards to ALS.

Tonight is about her.

Her bravery, her strength. Her beauty and love that shines through her eyes and her smile. She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.

And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting. They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward.

They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.

She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,

“Hello world, look at me!”

they shine brighter than any star. And she has always had a presence about her, the kind of natural charm that most women envy and men desire. But tonight, she stood up, and shone bright for all the world to see.

I am not moved to tears often and this one left me rocked to my core.

Kristina ~ I am so incredibly grateful you are in my life. You are all that any woman aspires to be. You are brilliant and kind, and you show grit and determination when others would have buckled by now. Trust me, telling your story is not vulnerable. It is gut-wrenching…and it is beautiful.

The world needs more women with your strength and your grace. I can only hope to one day shine as brightly as you do…

>>>>>>>Here is just a small piece of her story…>>>>>>>>>>>>>>>>

How do you get through two radiation treatments in one day? Two spa treatments, of course! That’s the positive side.

Here’s the ugly side. One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired. There’s no physical reason. It’s definitely mental.

Every day you go in, partially disrobe and lie down on a hard table. Arms are stretched above your head, goggles on. The entire time three to four people move about the room, aligning you, adjusting you, drawing on you, radiating you.

Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.

“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”

And repeat multiple times. The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t. When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.

I’m frustrated when I don’t hit the precise spot they want me to hit. So frustrated that sometimes my eyes well up. When I feel the water trickle down the side of my face I get even more frustrated.

“Hold it together.”

It’s become my inner chant.

It’s all quick. 15 to 20 minutes most days. But it seems longer. I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day.

It’s exhausting. I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold. Then I’m done. I hop off the table and wave my tingling arm.

“See you all tomorrow”

and I go put on my clothes. I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go. Some days I just walk out as if nothing happened. Other times I linger to dry my eyes.

I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself

“Hold it together.”

It works. I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God. That’s daily radiation.

Although today I slipped in two glorious spa treatments … just because. Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight.

Thank you T.

So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer. I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors. I think about all the women who will go through this after me, not just the radiation but all of it. They don’t yet know it. But they will be warriors, too.

#igotthis

an impossible decision…

Quotes about Decision and love (120 quotes)

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

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

It was leaving here that would be the difficult decision.

She would be leaving a piece of her heart behind.

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

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

Her mother was dying from ALS.

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

We do not.

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

It was not.

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

But was it?

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

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

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

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

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

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

He was already navigating a world of loss.

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

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

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

She chose to leave without him.

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

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

This woman made the only choice she knew to do.

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

The guilt either way will wear heavy on her.

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

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

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

Like I said….an impossible decision.

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

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

waiting…

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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.

Neurologist

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.

Neurologist

He waited.

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 waited.

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.

A.L.S.

He waited.

He waited for the words to sink in, but somewhere deep inside he had already known.

He waited.

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.

He waited.

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.

He waited.

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.

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.

He waited.

*********

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.

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.

He waited.

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.

He waited.

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.