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.
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