Files

August 2nd, 2021

There is a file on my desktop named “Susan’s Funeral.” It stands alone away from my other files as if I don’t want to infect my other files with it.

It is short, only a page long, with instructions on what I want done if the worst should happen following this surgery.

I have discussed my wishes with Tony before but I do not want to leave him to remember those things while dealing with the loss.

On top of that, I have been trying to write him a letter, a note, a tome, even a paragraph of how much he means to me. I want him to have that should the other file be needed.

I want him to know how much I love him, and have loved him, over the past 25 years of our lives.

Even when we were in a bad patch, and all marriages have them, my love for him has always been there.

I cannot get the words to the page though. The blank OpenOffice file taunts me as I open it again and again to try.

How do you even address someone in a letter like that? I cannot find the words to even start.

I don’t know, but before my doctor opens me up to try and put my insides back together, I will have to figure it out.

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Hair and Consequences

August 1st, 2021

Earlier this year, I went bald. Not on purpose or request, but out of nowhere, my hair began to fall out in clumps.

I started out with a mohawk in October of 2020. Just a month prior to the beginning of all of this, I had finally gotten the nerve to do it.

In the saloon chair, the sylist shaved down the sides of my head, leaving the middle of my hair, then bright pink, to drape over the left side of my head. 45 years old and I had thought about doing this for at least two decades.

I started dyeing my hair a multitude of colors in my early 30s. When I was a teenager, I had dyed it a color or two, but it was much bigger deal back then and my parents, particulalry Mom, did not like it, so I left it be.

Time moved on, I dyed my hair natural colors, just not my natural color, for years, until I got bored and started the fuschia run.

Then purple, burgundy, blue (which did not suit me and lasted only a short time,) and any other color imaginable.

Until this time in the hospital. Clumps of pink and blonde hair were falling into my hands, landing on my pillow and no one knew why. Finally it was all gone other than one small patch at the front.

I cried. I’m not ashamed to say that I was saddened by the loss of my hair. As if the fact that I was bedbound, unable to even get up to urinate wasn’t bad enough, now I was bald.

My doctors had no clue, the nurses didn’t either, but they were amazing through it all. The nurses at hospital number two were, overall, the best nurses I have ever had. They held my hand through tears and panic attacks, helped take care of me in the most gentle of manner.

Over the seven months there, several of them became friends. I miss them here in hospital number one. The nurses here just don’t have the same friendliness to them. Everything is much more regimented and nowhere near the comfort of number one.

The story of the nurses are for another day though. There I was bald as can be, no idea why, and scared it was something serious causing it.

Tony found some research showing it was likely stress induced which helped calm my mind. Thoughts of other serious illness had danced through there, what if I had cancer again, or my body was shutting down from my intestines not working properly.

He would rub my bald head and tell me I was beautiful.

Just as quickly as it went though, it came back. Tony rubbed my head one morning and felt the peach fuzz of the new start of my hair.

Nothing had changed, no meds, nothing with my TPN, I was just growing hair again.

Today, you can’t tell that I was bald just months ago. I have hair and it is my natural color. A light brown with grey peeking out. Just this evening I mentioned to Tony that if I wanted to go back to my natural color, now would be the time.

His response, “We’re going to get you home and dye it bright pink!” He’s right. I’m going to make it through all of this and we’re going to go home, together, and dye my hair pink.

Almost 10 months into this journey, we are looking toward our new normal following my surgery. Strong, proud, tough old broad style, here, I’m going to make it through all this and be Suzy again.

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Tough Old Broad

July 31st, 2021

It has been a long time since I put words to the page here at Muttering Fool. February of 2020. Not long before the world exploded into the nightmare of COVID-19. Half a year before my body tried to kill me.

I am writing here from my hospital room at a large teaching hospital in Virginia. I have been here or in another hospital for long-term care since October 13, 2020.

It’s now the last day of July 2021.

We aren’t sure when I’ll be home. Right now we are waiting for my surgery. It’s a big one. 12 hours under the knife while my doctor puts my intestines back together.

You see, back in October, they kind of exploded. And I went septic, twice. I spent November being cut open and cleaned out, with some intestines removed then, and more in December, to try and save me. I had so much infection and abcess that all my doctors were sure I wouldn’t make it.

They sent me to a long-term care hospital to either, die or heal, and I healed. Needless to say they were surprised that my wound healed as best it could.

Now,I still have a portion of my intestines in a bag on the outside of my body and another large fistula on my right side.

But, I made it through what they were sure would kill me.

I’m a tough old broad. I fought hard to survive. Even after the one surgeon told Tony to prepare for the worst. (How do you do that? You can’t prepare for the death of your spouse.)

Speaking of Tony, as if I didn’t know that he loved me more than I deserve before this. He has spent every night sleeping on a chair beside me. In the times in the ICU when they didn’t allow him to stay, he slept in the van so he could be with me as soon as possible.

That is love beyond love. Pure unselfish devotion.

When he isn’t asleep or at work, he is helping me. He bathes me, he dries me, and puts the powders and ointments on me to keep my skin together.

He gently helps me put on a fresh gown and makes sure that my sheets are wrinkle free to prevent even more issues.

Tony wipes my tears when I get overwhelmed by what I am facing. 12 hours of surgery, a huge chance of complications, a 1 in 5 chance of not surviving the after math of the surgery.

He holds my hand when they do wound care on my abdomen. He has learned how to do the wound care on my body. When the pillows under my legs need to be moved, he fixes them.

I am surrounded my stuffed animals he has bought me to keep my spirits up.

All of these things and more show how much he loves me.

Right now, he’s sitting beside me waiting for my TPN to be hooked up to me before he eats, so we can have dinner together. (I haven’t eaten any food since November 3, 2020, it sucks.)

And, with my nurse coming in to hook up the TPN and lipids, it’s time to enjoy “dinner” with my amazing husband.

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The opposite of a crisis of faith

February 17th, 2020

What is the opposite of a crisis of faith? An abundance? A surfeit?

I mean I am heading in an entirely different direction in my faith. For years I have had none. My faith in an omnipotent being was gone.

Believing in God was always a part of me and then I got cancer at 33, my first love committed suicide, a few other major things happened and it was gone. Not just no longer believing in the Church. I mean that is part of it, I was raised Catholic and the Church has so many problems I had to walk away from it.

Logically, God makes no sense. Hear me out. If you think about science and how the universe works and how the Bible contradicts itself? It makes no sense.

Yet, there is a feeling that has been growing in me. A tiny (mustard?) seed of faith.

I haven’t gone back to a church. In fact, I am not even sure where this is heading for me. I know that the Catholic Church will never be a place for me again.


Is anywhere going to be right? I refuse to belong to a body that is anti-woman, anti-gay, anti-love. Is there a way to be the person I am and a person who believes?

We shall see.

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Day One – Work day

December 1st, 2019

Today was a long workday for me. I got to cover the anniversary gospel sing of a local group Burkett Lyburn and the All Together Singers. Now, anyone who knows me knows me knows I am not a religious person.

However, this is one of my favorite events to cover every year.

Burkett is an amazing man and friend, and I am proud to know him.

Center is Burkett Lyburn. Burkett and the All Together Singers celebrated their 21st anniversary.

Now, cute story. Back on election day, I ran into Burkett working the polls for another local man who was running for Board of Supervisors. We spoke and I mentioned how I looked forward to the event every year for the sweet potato pie.

His Mother-in-law’s sweet potato pie. Oh my goodness, I wasn’t joking. I look forward to this pie every year. It is the perfect sweet potato pie and I have not been able to replicate it.

Unfortunately, his MIL had surgery on her knee and was down for the count. He promised me that he would have a whole pie for me if he had to bake it himself.

And he did. A beautiful orange vision of loveliness came home with me. Every bite of the one piece I have had so far was delicious.

Burkett performs

The sing was wonderful with groups from all over the place. And, the event every year is one of the few times a year I wish I was religious. Overwhelmingly you can feel how the folks that attend this really love their fellow man. It is one of the few places, and times, I feel completely accepted.

I cannot wait to photograph another one next year.


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