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.
You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.
Slowly, so slowly at first, it seemed almost as if you might be imagining it all.
First, the words of condolences.
“I am so sorry you are going through this.”
“I heard about the diagnosis. I am so sorry.”
Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.
It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.
The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.
You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.
You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.
The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.
You do everything in your power not to click on that icon, you try so hard to stay away from social media.
You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.
You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.
The connection is gone.
Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.
The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.
You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.
If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.
You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
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.
It is the same process, every single night.
Mundane…sameness…always the same monotonous events that take place for bedtime.
Pay attention, Theresa!
I grunt again…I swear he is more square than he is round.
I give one more hard push…
I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent
I’m sorry you had to see me like that today.
I try to keep that side of me hidden from the rest of the world. Well, except Matthew. He has seen it a few times. If only I had known you were going to walk in, I would have pulled it together before you saw me. You seemed shocked to see me like that.
It doesn’t happen all the time. Well, actually, that’s not true… it seems to be happening more frequently lately. Maybe it’s the holidays? Maybe it’s my birthday that is fast approaching? Maybe it is all the what if’s, the why’s, or the somedays….Trust me, if I could figure out how to get it under control, I would. I would do anything to numb this…to make it stop…I wish I could make it go away.
I wish I could describe what it is like. It is so strange, especially in the moment. One minute, life is fine and then, before I know it, I am just so angry. I didn’t mean to let it happen. Sometimes these emotions just seem to overpower me.
Today though…today was different.
I was so tired this morning.
I just wanted to sleep. Matthew wanted to sit up. It wasn’t even 6 o’clock in the morning. Then I remembered…the house was a mess and my list of to-do’s is piling higher and higher. I know, I know…I will always have so much to do, but today….today, it just seemed overwhelming. My wrists and hands were already aching..and I remembered that it’s a “Shower Day.”
Matthew wants to sits up, but less than ten minutes later, he wants to go back to sleep. I am sorry. I know I shouldn’t be complaining. After all, I can still sit up. He can’t.
I know. This isn’t about me. I am not the one dying….There is no reason for me to be so irritated, right?
Sometimes, with every little need, from him…from my children…from everyone around me, I feel selfish for wanting something for myself. I want to ask what happens to me when I need something? What then? But I shouldn’t think like that…should I?
I am the one who must get up, take his mask off…then wait till he decides if he wants to go back to sleep or not.
I am the one who has to reach for the cup to give him a drink.
I am the one picks him up and transfers him.
I am the one who helps him use the bathroom.
I am the one who feeds him.
I am the one who covers him when he is cold.
I am the one…
Today wasn’t any different than yesterday. And it won’t be any different than tomorrow.
But today, with each little need, and want or request, and with each thought of what I should get done: the shopping, the cleaning, the errands, the bills, the appointments, the kids, the animals, the cooking, the showering, rearranging the garage, finish the Christmas decorations, the homework….
It just seemed like so much.
And I snapped..
I never said a word. No outward reaction could be seen. But inside, I was seething.
I became so angry.
So angry, that if someone had said something to me in that exact moment…I could see myself going insane!
There was a big possibility that would have seen my face splashed across the newspapers, “Caregiver and wife of man with ALS has gone BESERK! Aggravated Assault and Battery Charges have been filed!”
I laid there, trying to force myself back to sleep. But soon the kids were running through the house, the doors were slamming,.the footsteps were stomping…and then with a quick kiss, they were gone.
Too quiet. Too easy to think, to remember, to analyze, to contemplate, and then over-react.
What was it my therapist told me?
“Anger is really just a mask for sadness and fear. It’s easier and more powerful to feel anger. Imagine when you finally admit what you are really feeling.”
I check with myself.
Yep, that is a whole lotta anger, ready to come pouring out of every cell in my body.
Instead of the rush of endorphins…the rage…instead, I realize…he is right.
I am not angry…I am sad
I am so unbelievably sad, and scared.
And just like that…I begin to cry.
I fall into a million pieces.
I am sorry that you walked in during the part where I was trying to put myself back together.
That probably wasn’t a pretty sight for anyone to have to witness.
It’s okay though.
I spent the day gluing all those cracks and crevices together.
I can’t say that I am back to my usual self. There were a lot of pieces today.
And I can’t say I am going to sit in the emotion of sadness anytime soon. Apparently, that is a powerful emotion.
Instead, I turned it back into anger.
Anger I can manage.
Anger I can control.
Anyway, I just wanted to tell you I am sorry. I hate when someone sees that side of me. It feels far too vulnerable, and too much to have to burden someone else with. And I just wanted to apologize for bothering you…
Let’s just pretend this never happened…what do you say?
❤ Matthew Wild
Today is the last day of November. It is also the last day to recognize caregivers. November is the designated month to celebrate the caregivers in our lives.
And much like what it can feel like to be a caregiver, the month went by with little recognition. And that is okay.
Most of us don’t do it for the praise, or the pat on the back. We certainly can’t say we do it for the money or the fame. We do this for someone we care about, someone we love.
But, for just a moment, I want to give you a peek inside the life of a caregiver.
• We get interrupted sleep, and we seldom (if ever) sleep a full 8 hours.
• We eat our meals last, or even standing up, in a rush to move onto the next check item on our to-do list
• We juggle so many things at once, we have a hard time focusing.
• We coordinate, organize or rearrange our schedule to take care of everyone else.
• Sometimes, we want to think of ourselves, but then feel guilty for it.
• We worry…all the time.
• We sometimes feel overwhelmed at the responsibility of caring for another.
• We have a rash of emotions that spread over us quickly, and yes, sometimes they might seem irrational. Don’t worry, the feelings dissipate quickly.
• Showers become the only private time we get to ourselves…
• We are the advocate, and the voice and the warrior for the person we care for.
• We have moments of selfishness, of wanting to not to have to think of, or put another person over ourselves all the time.
• We remember how much we love the person we are caring for, and somehow, all those emotions, and the weight of what we do seems less heavy for just a while.
• We often feel alone.
• We cry in the shower because the sound of the water washes our tears and drowns out our anguish.
• We smile through the irritations, or frustrations…and yes, even through the pain.
• We can’t imagine not trying so hard.
• We live with guilt over not being enough…every.single.day.
• We know that this role we play won’t last forever.
• We hate being told it’s not about us….
• We get irritated when others try to give us advice but have no real-life experience with the same situation.
• Seeing our loved one smile can make the frustrations and hardships more bearable.
• We would still make this choice, if it means just one more day with those we love.
Remember, you will either be a caregiver or need a caregiver at some point in your life.
If you know a caregiver, show some empathy and compassion. It’s a tough job.
If you need a caregiver, show some empathy and compassion, it’s a tough job!