The Good Pillow

I’ve never thought of myself as a good person.

I guess you could say that I haven’t really had any self-worth. I never really liked the way I looked and I hated the way I acted. I’ve made so many mistakes in life that it justified making more. I was already karmically in the red, so what did it matter if I made a few more mistakes, right?

Then what happened to Cheryl happened and everything changed.

You always wonder what you’re going to be like in a crisis but few ever, THANKFULLY, find out. I had the unfortunate pleasure of finding out that I’m actually pretty good in a crisis.

In the beginning, I almost felt like I had deserved chaining myself to Cheryl. She was going to need a lot of care and whoever took up that job wasn’t going to have much of a life. Or, at least, not the life they had been living. Things were going to seriously change.

Cheryl and I at the Nursing Home, 2014.

I remember having a conversation with Ally on the way home from the hospital one night. We were talking about Cheryl’s long term care. At the time I was 36 and she was 23. She was just starting her life. She was starting her career, had (and still does) a great boyfriend… everything was heading her way. Me on the other hand, well as I stated to her that night: “I had a good run.”

That’s how I worded it. “I had a good run.”

Like I was ready to just pack it all in. Give up. Climb up on my cross. Lock the cell door and throw away the key. To be fair, in my defense, I was pretty downtrodden about everything, so being in such a maudlin state of mind wasn’t an odd thing. Still though… That’s how much I valued myself.

These were the things that were going through my mind while other people were casually throwing around words like “saint” and phrases like “good guy” and “stand up guy.”

Every time they got thrown at me it made my skin crawl. I didn’t FEEL like that guy. I was still in the red and felt I deserved giving up so much. You also have to remember, that back in 2014, Cheryl was a zombie. A shell of a human being and there were no signs that she would ever return. She was gone. So the idea off caring her being a “prison sentence” wasn’t that far from the truth. Regardless, I refused to put her in a home.

I WAS GOING TO TAKE CARE OF HER.

No matter what. If she was going to come back, I wasn’t going to leave it in the hands of strangers. I had seen their work during the 67 days we spent in a nursing facility. Had I not been there to bust heads, she’d probably still be sitting in her own shit and puke. Fuck that. So when she came home, I was going to be the one to make sure she worked hard at getting better. I had already done 127 days in hospitals, at least now I could do it with a couch and a TV instead of a shitty chair and my iPad.

Part of making sure she got better was making sure she was as comfortable as she could possibly be. That meant that, literally, she needed “the good pillow.” The good pillow under her head and the good pillow between her knees.

That meant I was left with the shitty pillow and I was okay with that. Prison isn’t meant to be comfortable, right? Ugh, thinking about it now, I literally nailed myself to that cross.

Cheryl squeezing my hand with her left hand (a.k.a. The “broken” one).

In 2015, Cheryl came back to us after she miraculously “woke up” and ended the reign of zombie Cheryl. Now we could have conversations with her. She would wake up every morning stiff as hell because she had forgotten how to roll over. She’d wake up in pain because she stayed in one position ALL NIGHT.

Moreso than ever, she needed that good pillow. It also meant that I would have to wake up periodically throughout the night and flip her over… multiple times. Doing that helped with the pain until, eventually, she relearned how to flip over. Now, she wakes up feeling perfectly fine.

The other thing we learned, was that she wasn’t as picky as she used to be. The level of comfort she required before her tragic event, wasn’t the same as it was after. She no longer NEEDED to have the good pillow in order to be comfortable. She could be comfortable with anything under her head or between her knees.

That didn’t mean I jumped at the opportunity to take back some personal comfort. In my mind, I was still karmically in the red and was still locked in my self-appointed prison.

Then something happened in 2016. It was June or July. I was walking to the store to get stuff for dinner and I started thinking about Cheryl and how much she’s improved and how she’s STILL improving. A light turned on inside of me. For the first time, I felt true pride. I was happy, almost to the point of tears. (Truth be told, I’m welling up a little re-thinking about that moment.)

In feeling that happiness, I suddenly unlocked myself from my prison. I didn’t necessarily pat myself on my back and take complete credit, but I recognized my role in everything. After 2 years, I had finally accepted what others have said about how much of an influence I was in Cheryl’s recovery.

That was the moment my karma was officially in the black.

I was ready to take over that good pillow. For the first time in this entire ordeal, I started to think about myself. To take care of myself so I could take care of her. That’s when everything else changed too. It stopped being about Cheryl (directly) and became more about me. I was so focused on getting HER story out there, that I forgot about the man behind the curtain.

I had a story too.

Cheryl relaxing.

There are caregivers dealing with various ailments across the globe. It doesn’t matter whether it’s a stroke, or cancer, or dementia. It doesn’t matter if the ailment is permanent or temporary. If someone has had to take care of someone else, they have struggled with whether or not they deserve the good pillow. That’s why I started this site. That’s why I changed the direction of my book, BURST! It’s important to think about the people behind the curtain as much as the people they care for. It’s the toughest job imaginable, but the rewards are humongous. It’s why we do what we do.

It’s for the moments we shed tears of joy and pride.

For the first time EVER in my life, I actually kind of like myself. I think I’ve done a pretty good job with Cheryl and will continue to do so because I’ve put as much work into her as she’s put into herself and I want to see this through to the end. I no longer cringe when people tell me how “amazing” I am. I’m at the point where I can be gracious and offer my thanks and appreciation for their kind words.

Just don’t nominate me for saint-hood. That’s pushing it. 😉

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One response to “The Good Pillow

  1. An extremely well-articulated, insightful, and profound essay. I’m so glad you made it. I fear that I never will; that I will forever be re-living all the things I could have done better — and yes even on occasion did wrong — that if I had done differently might have saved the one I loved (and continue to love) so much.

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