This is Part 2 to Becoming … a post a wrote a few days ago.

*it’s a bit longer than my other posts.. be forewarned

I wasn’t able to speak. I did a lot of smiling. Hiding behind my smile… while all of the dark feelings and thoughts flooded my system.

What got me Here?

I didnt take note of what my Drs were telling me. I was having grand mal seizures often and partial seizures to where it was impacting my speech and when I had one of those first partial seizures I was horrified to hear the gurgling, groaning noise that was coming out of me as I had the seizure, awake.

I have the kind of seizures where most of the time, I am awake. Grand Mal or partial.. I’m aware and in there. Experiencing all of the pain and the searing nerves of electrical shocks to my system as I hold onto two thoughts… I must breathe and it will end soon.

I have seizures in the place in my brain associated with pain. Which is why I can feel them. I am grateful, however, because of a long aura. That’s a long warning where I feel a sense of deja vu and dread. A distinct sense of overwhelm of everything..aka noise, light, movement. I want to find a dark closet to hide in and lay down on the floor. And… I often do.

I would disappear without a word to anyone and find a safe place where it is quiet and I’m unlikely to be found. I would lay on my right side and seize and twist into the ground vs laying on my left and threatening asphyxiation by accidentally twisting on my back. I would drool and have a large pool of drool to clean up. I would often go back… rather shakily… to what I was doing and no one seemed to notice.

Some did. Those who knew me. Those who knew to look for the slight paralysis that follows on the right side of my face after a seizure. Those who looked closely.

I went to holistic Drs. Tried no carb/no fruit/no sugar carbs. Tried vegan diets. Tried keto diets. I lost weight and gained weight back. All trying to shrink the tumor that kept on growing.

I changed Drs. I had a very kind and supportive Dr who looked at me and said…”if one of my children or my wife were going through this, I’d beg them to do the surgery/chemo/radiation.”

I gave in. I didn’t have anymore to give. I was having seizures at times weekly. I was worn out and the seizures were like running marathons on my overwhelmed body. I was…under fed at times. Under hydrated. Not at all knowing what to do to change it or even having the energy to want to change.

I had an MRI that involved pumping a dye into my brain while I was in the MRI machine. They wanted to wake me up in the middle of the surgery to be aware of how much of the tumor to take out. They had me do speaking exercises and flipped through various photos in front of my eyes of various images. They also had me do particular movements of my right hand. Including finger tapping each finger… one by one.

They had to reschedule my surgery because it was over Covid. They finally had me come in after a few months of trepidation.

I was told everything in advance this time. No surprises. I was awake when they wheeled me into the surgery. It was an overwhelmingly big open space.

There were at least ten different masked people, men and women, looking at me. The special guest. I remember as they were pulling the mask over my face I stopped them and stated… “I made sure and trimmed down there for the person who is going to be digging around there with the catheter…” they laughed. I did too… half serious half wondering if I’d wake up and even experience the catheter.

10…9…8..

—

What the… I’m awake!? My head is pinned. Literally.. there are pins holding my head in place digging into my skin. A sheet is covering me and I’m slightly angled on my right side. Then I feel it… the air. The air on my brain. What a … strange feeling… they are calling my name. I should answer. “Yes” I manage to say. Not seeing anyone. And vaguely remembering ahh.. I’m awake.

They had a nice nurse hold my right hand. Or… maybe it was to do the tests. Either way, I felt the comforting warmth of someone else’s hand. Slightly squeezed it. The hand slightly squeezed back.

I’m not alone. I thought.

“Ok, Dawn… it’s me Dr A and we spoke before about what I’m going to be doing up here. You aren’t going to be able to see me, but I’m here and I’ve got you.”

I tried nodding. The pins were holding my head in place. I finally allowed myself to speak.. “ok” came a voice that sounded like a young girl.

They had me squeeze the hand and say various words. All familiar to me. They placed a small rod under the back of my neck and I suppose inside my brain. I couldn’t feel them because … no nerves 😳 were inside my brain. I just felt the sensation of air.

I was jolted like an electric shock. Dr A turned it down. It didn’t feel as bad as a seizure but it did hurt a bit.

I remembered asking Dr A what would happen if I had a seizure when I was awake on the table. With a straight face, 😐 he said throw cold ice water onto your brain. I laughed and laughed! Ohh.. he does have a sense of humor this Dr A. Then no one else was laughing. I realized they were serious. I believe that I thought of that idea… and it was too funny so I re-enacted it several times while they did what they needed to up in my head.

I heard them in another tone… a tone I knew too well. Saying ahh .. wish we could take out more. A few hours later they said ok Dawn. We are going to put you back under.

Back to Reality.. oh sh!t

I woke in the tiniest cubicle….you could hardly call it a room. There was a woman hovering over me… and whenever she moved around the bed to my other side she had to squeeze through. I felt the push of the locked wheels from her weight.

Wow..😮 I’m alive. I wasn’t feeling quite so good though. Like last time. Something was def wrong. Alarms started going off and she said something about insulin and put a needle in my belly. I hate shots…

It was Covid .. I was only allowed one visitor for a three hour period. I had chosen my ‘then partner.’ He came in and I started to cry. He barely had room to sit in that tiny room.

I opened my mouth to speak. A strange thing occurred. I couldn’t remember how to speak. How to make my mouth make the movements to sound out the words. With a feeling of horror… I realized I couldn’t speak. Knowing what I was trying to do the icu nurse and my ‘then partner’ put a pen in my hand and asked me to write. My hand shakily wrapped around the pen and I wrote “book.. look ..” I turned towards them like .. no! That isn’t what I wanted to say. They seemed to catch on and told me to rest more. As I rested I realized my right hand also wasn’t quite working as it should.

Shit… shit. SHIT!

I slept a lot. I was moved and had more scans. I remember a person in the cubicle beside me passed on and the nurse turned to me and said she was going to go to that nurse. I heard crying. Quiet crying where the quiet muffled sound was eerily calming.

—

I was back up in the bigger room. The new Neuro ICU. I still couldn’t speak and the icu nurse changed.

I wasn’t happy with her. The first thing she did was pull up all of the shades in the room allowing the sun to shine through the wall of windows and turn on the tv.

The light felt like it was burning my eyes. The tv was overwhelming my other senses.

She left the room and I heard her say to the others nurses in the hall… “why do they always give me the ones who can’t speak?”

The Power of the Brain

I have to admit something here. For about half a day.. I debated on whether I really wanted to live or not. In my spacey brain, the thoughts were all I had. They were going haywire. I thought about how I’d do it. Not eating came to me as a viable option. Until I got really hungry 😳

For a few hours I was actually thinking in the French language. Which was wild because I hadn’t had French classes since high school.

When I had the chance to actually thank my neurosurgeon. I’d practiced all day those simple words. When he arrived with his slew of eager fellows … what came out of my mouth was “Wam… bam, thank you, ma’am!”

Horrified! But obviously impressed with my ability to speak those many words in a row, my hands came up and over my mouth as if to take the words back.

Yeah.. too late… the fellows sniggered behind their clipboards and Dr A replied.. “I don’t think that’s what you meant to say …”

Recovery?

It was a longer recovery than the first one. I had to have help getting in and out of the bath. Going up and down the stairs. Washing my hair. I was able to wash my own body. I, at least, had that honor.

I looked down at my muscles and it made me sad. I was in a very ill body. So pumped full of fluids and meds. So weak I lost most of my muscle within the following few months.

I had a speech therapist over zoom to help me with my speaking. I’ll never forget the day I was talking hesitantly… and had enough courage to ask, “will I ever be back to where I was before the surgery?” She assured me I would be.

It took close to a year or year and a half for me to fully recover my speech with no pauses.

When I was speaking, my family would try to find the words I was looking for and exclaim them with a satisfying expression. Well.. that really pissed me off. I would say…”you caught my fish!” to them. I was reeling it in and I felt they had the net all prepped and swooped in to get it. I wanted the struggle. I needed them to be patient with the silence. To allow me the opportunity to connect another nerve in my mind… make another connection in my brain. Learn and grow an understanding.

—

I had oral chemo and radiation for 6 weeks. I had the oral chemo for the next 6 months after that. The radiation people were all surprised because a friend told about some high grade thc to put up my bum while on radiation and going through treatments. I of course was up for it.

The drs were so surprised and said what have you done differently? Well… I responded…

“I took butt pods and I put up my rear every night. I put in those butt pods high grade thc oil so when you put it up your behind it still gets into your bloodstream.. but doesn’t impact your reality as much. 1000kg .. I worked up to. And! That’s why my brain tumor has shrank so much.”

Their eyes and mouths stayed open. I kinda liked that. Total role reversal of something astounding that I had told them.

—

Half of my hair on my head fell out after the third week of radiation. It came out slowly at first. Then all at once. Big huge chunks of it in the shower as I was washing it.

My sister shaved the side of her head in solidarity. I shaved mine too.. but it didn’t look as good.

I wore a lot of hats during those days. Didnt take very many pictures of myself. I didn’t like how I looked. After the treatments… I felt the life and vitality was sucked out of my body.

I knew one thing though. I wanted to live. To live wholeheartedly. And so I am.

I’m consciously loving my body and my soul as I have not done a very good job of that in the past. I’m making up for it now; by taking extra care of myself and my loved ones.

My healing journey has not been easy. Just writing that down is kind of hilarious… it’s been so very hard.

What has been the result? I want to live out my remaining days like no other. Grateful for every day and every one who comes across my path.

I want to leave a legacy of love and authentic happiness that you can give yourself permission to receive.

I want to live. Authentically. Rawthentically. With purpose. And I want to share what I’ve learned through my journey.. that is being written by my hand. Steady now.

With warmth and grace,

Diary of a Relationship Coach

Subscribe

If you want to subscribe, consider becoming a paid subscriber. I can’t promise a quick fix for your life and or your relationship… I can promise; however, if you are willing, an increased capacity for loving yourself and others in your life.