I tend to write after I’ve been chewing on something for a bit. Sometimes it’s just that day, or I might have an idea chasing me around for a few days, and occasionally it might even take me a few weeks to find a missing piece. And the the blog comes together and the typing starts. But, as I’ve said before, I am always writing. I have journals all over the house and the beginning of my third start of a book in a folder on my desktop.
Words are what I cling to the most.
Today’s musings come from the idea that occurred to me today. I am really good at reporting on the scans and tests I have. I share results and treatments. I describe surgeries and have shared my experiences in some pretty incredible hospitals. It’s easy to stick to the facts. Share the scans. Describe which specialist is working on what. It’s easy to hold on to the logical, scientific….sometimes cold, facts and truths of life in pain and treatment for an inoperable brain tumor.
It’s easy because then I don’t have to share what it’s like from the inside. And sometimes I tend to do that. There’s a bucket of reasons.
I’m an only child, and used to being by myself.
I cling to cold, hard logic and science as a defense mechanism.
I figured out a long time ago that it doesn’t matter if I’m scared or insecure and those inside feelings don’t have to match the outside demeanor.
Which means I am really good at appearing aloof, cold, and detached even when I might be scared, struggling, or hurting inside. But you’d never know it.I have a really great resting bitch face.
I was always new as a kid, changing schools just about every year. And always a little bit younger than everyone else, and smaller. I was 4’10” when I started high school! So I figured out that it didn’t matter how scared or shy, insecure, overwhelmed I was feeling, it only mattered what the image I put in front of them was. It doesn’t matter if I can or can’t kick your ass, just as long as you believe that I can.
I have been told by people that eventually became close that at first they thought I was “cold, aloof, stuck up”. I hope I’m really not any of those things, but I do know I am very good at putting on an appearance.
All that being said, today I realized I don’t write a lot about what it feels like in here; brain tumor, artificial hip, and all. Truth be told it occurred to me because I have been a frickin bitch about my manchild having a stupid cold. (Mostly because the last time we did this, it was a thing. FOR MONTHS)
I have no immune system. This is well established. Start with autoimmune, throw in some radiation, and sprinkle a little of the MRSA I had in my lungs for 2 months last year. No immune system. No, none, nada, no-thing, nien, NADA. My family members get a cold…..I get pneumonia in both lungs and end up on in-home O2 for 3 months.
However, it is cold-and-flu season in the NorthEast. And people are stupid. So after my oldest daughter told me she had a nasty cold, I knew there was one lurking in our town. (She doesn’t live with me, and she’s better now, but still….)After 2 nights of sleeping next to Mr-sounds-like-a-freight-train and not even my earplugs were helping, he declared he did feel a little…sniff, sniff….maybe a little congested or something. And went to go sleep in the spare room. (Or as he put it last time “I gotta sleep in frickin Siberia!!”)
By last night he sounded like shit, and to my delight, today I got up to him “I decided to work from home today!!” I don’t let him within 5 feet of me. Don’t touch my stuff, don’t breathe near me.
It might appear that I’m just being a bitch, but…
I am very sick. The symptoms of my tumor are progressing. I’m having a harder and harder time remembering things and I struggle with swallowing and/or choking at least once a day now. The choking thing scares the shit out of me. But you wouldn’t know that because I’m just being a bitch.
So yeah: the outside is Xunnie being bitchy because retired-Chief-manchild has a frickin cold (and men are such babies).
“Don’t touch my stuff.”
“Go…..away. Go stand over there.”
“Go take your cooties somewhere else.”
The inside? I’m scared. I’m struggling these days anyway. I have a hard time swallowing at least once a day. I still have that stupid cough. It’s time to head back to pulmonology and plead with them to just finally schedule the broncosopy because I still cough up green uck. Between the rise in clumsiness ( I HATE stairs), the increasing trouble with my memory, and the everydamnday choking thing, I’m thinking when I see my neurologist in 2 weeks she’ll probably be thinking more scans wouldn’t be a bad thing. We don’t know how fast this bad boy is growing yet.
So, the inside and the outside don’t match. Don’t let this bitchy face fool you. I’m hurting, I’m scared, I’m spending time making my peace with dying.
Outside I’m cold and kinda snarky. Inside, I’m just a little girl that’s been alone a long time.