I had written a post with the links to a few other folks who are going through treatment for cancer. Emily, one of the young ladies I mentioned, had an aggressive brain cancer that came back, and she passed away last week. It’s the worst. I hate everything about her story because it’s all too familiar. Her family wrote a wonderful obituary.
https://www.legacy.com/us/obituaries/legacyremembers/emily-kouzios-obituary?id=57703550
This post is going to tread in some ugly waters. Over the past few years, as we have talked about Summer’s treatment and, ultimately, her passing, I have had countless messages from people saying that they appreciated my candor on these subjects.
Well, here’s some more reality. Hang on.
PTSD is not a term I use. Neither casually or as a self-diagnosis to excuse myself from difficult situations. But it’s becoming something I can recognize as events “trigger” painful memories.
Emily’s family had a GoFundMe, like Summer’s; it was sharing daily notes about her treatment and, ultimately, about her hospice time. I think I was a bit triggered by the last few entries on the GoFundMe… I have been transported back to those days beside Summer and then her final moments. It’s not a normal chain of thoughts or process. It’s a wormhole directly to a few distinct memories.
There is something about hospice. It sticks with me. Not because it was ugly or poorly run… We had the best experience with the facility, the nurses, and the doctor. But that room, that room Summer was in hangs in my memory like something out of a movie. The memories of sleeping in the room with Summer and her passing can stop me in my tracks. Reading about Emily in hospice and hearing her Mom’s call to friends and family for a last visit brought back these memories.
Summer was so polite and cordial to anyone who stopped by to see her in her last week. She made conversation and acted like it was just another day from the moment we arrived. She was obviously out of her mind on drugs. You would have to be, otherwise, I think you would be in an unhinged feeling of dread?
Ultimately, my mind retreads moments like a greatest hits reel.
I remember laying in the daybed and hearing her wake up at 3 AM in the morning… She would grab at the activity items on her bed… A blanket with a key (a toddler toy) and a crackle pillow (some kind of weird animal toy?) that she would look at… Then, huff and puff with some frustration and lay her head back. (this was later as she would float in a half-awake mode) If she seemed alert, I would get up and try and talk to her. But, she was not “up” because it was a bit of a dream world. A few times, I handed her the Cell Phone, and she instantly started Snapchatting people. She had no interest, or maybe perception, to look through her texts and messenger conversations. I could see that they were stacked up with double-digit message totals. She was oblivious.
The other memory is of Angela, Aiden, and I spending time with her over her last moments. The four of us all connected as we held her… Angela comforts her verbally as Summer is taking her final breaths. Aiden and I just hold on to her.
Lastly, the moment that I have referred to in the past… When I was leaving the room or something… She had not been very responsive… I looked her in the face and said “I love you”. She was facing me with her eyes closed… And within a second of my statement, she opened her untaimed eye and gave me acknowledgement that I had been heard. That moment still turn me to rubber.
This is a flash of the PTSD. These are the moments that fill my head when I think about Hospice.
I remember it. I can write it down. I have some control of my mind… And who really cares what a flake I become when I am home making a blog post. But an off moment or a GoFundMe post that comes across my email during the workday can choke me up pretty quick. I breathe deeply. I wipe a quick tear and wonder how red my eyes are.
I guess that means I’m human.
Should I use drugs, chemicals or other methods to deal with this? I don’t think so. If anything, I have found that keeping more control of my senses has been a greater benefit to my sanity. Using anything that distracts or lowers my inhibitions allows for chaos in my brain. I don’t need that.
I have second-guessed myself on this post a few times since writing it… I feel a bit like, “Look at me, we had bad stuff happen to us too,” while trying to take attention away from Emily and her family. I think its a cause and effect situation. There were a lot of similarities in our girls, and it was probably inevitable.