Brain: "Stop dwelling!"
Lasha: "My eyes hurt..."
Brain: "STOP YELLING!"
Lasha: "I'm not yelling! You're yelling!"
Brain: "SHUT UP!"
Lasha: "Goddamn it!"
Brain: "STOP BANGING!"
Lasha: "you're banging"
Brain: "STOP TALKING!"
Lasha: "my brain..."
Brain: "SHUT UP!"
That's just a glimpse into my brain. When out in public I fight to restrain my brain from overloading and shutting down.
Recently, my husband and I took part in a local craft market to sell some artwork and handmade items I had been working on throughout the year.
The market was about 3 hours in total (including set up and tear down) and I had my husband with me to do the majority of the work.
I helped set up our market table but then I sat down for the remainder of the market, while my husband, Chris, ran our table.
Unfortunately, interacting with people makes my brain and body burn...
I sat at the edge of our market table with my headphones in my ears (listening to instrumental piano and/or acoustic guitar), goggles and mask on my face (COVID precautions), and my head down (trying to avoid watching the movement of people as they stopped or moved passed our booth conversing amongst themselves).
For many years, I suffered from a large Pineal Gland Cyst/Tumor (PGCT), which was located smack dab in the middle of my brain.
I suffered from years of chronic pain and undiagnosed medical/social concerns. I went through multiple medications and multiple surgeries.
A little over a year ago, I had the PGCT removed successfully, but not without repercussions from years of brain damage sustained from mass effect of the PGCT in my brain (left brain atrophy, CNS disorders (Fibro/ME), and stuck in fight or flight mode).
After brain surgery I thought life would pick up where it left off. Well it did, but not how I thought it would. I went in for a postoperative MRI (almost 1 yr to my brain surgery date) to find out that a 2nd brain tumor was growing.
In public, noisy, and busy places my head feels twisted up like a red twist tie; I can't concentrate, my heart palpates, my body pain escalades, I loose words, my head floats, my hands and feet sweat... I am ready to "freeze" and "shut down" for my life.
Yes, freeze, you read that right.
I don't fight or flight.
My body freezes and my brain shuts down.
But people don't see that, they only see a lady in goggles, and a mask, with a wee bit of a tremor, and a stammer, if they try speaking to her.
Lasha: "It's hard to get a word in edgewise..."
Brain: "SHUT UP!"
Lasha: "Speak damn it!"
Brain: "Can't... too much... shutting down..."
At the end of that 3 hour market extravaganza, my body felt like I had just fought the 3 day Battle of Thermopylae. I suffered from nausea, dizziness, shakes, worsened memory issues, and emotional breakdowns. BUT - this was a really great recovery after being out in public for me!
Following such social situations in the past, I would have been bedbound for the following week.
But, since finding out that my 2nd brain tumor is growing, and that I struggle from undiagnosed social conditions (autism), my psychologist, my husband, and I have been working hard on retraining neuropathways in my brain, which isn't easy to do with COVID-19.
If you ever wonder why your buddy who has had brain damage isn't as social as they used to be, or maybe completely different then how you once knew them, they too may be suffering from similar feelings and/or experiences.
Brain injuries, brain damage, and brain tumors all wreak havoc in ways we would never think without experiencing it ourselves. And, each person experiences symptoms differently, as my sister-in-law likes to say, "That's just a [John] symptom" because no two people's body's are the same or will react the same to one illness.
My whole life has been changed by brain tumors. I saw all my previous illness life goals fade away and I grieve those losses daily. But those losses blossomed and grew into something else... something much more beautiful than I could have ever imagined!
Life with Lasha
- I don't leave my house, often;
- I don't speak to people, often (when I do speak to people I am thankful for those who provide me with plenty of grace to accumulate my thoughts and get my words out);
- I can't concentrate for long (I have been working on writing this damn blog forever!);
- I prefer to text, instead of call, though hearing your voice is always good for my soul;
- I get scared, anxious, nervous, depressed, etc., easily and those emotions cause my body pain to skyrocket;
The list goes on... to be candid, even on my best days I feel like a complete mess. I often wonder, "how does my husband love such a mess?" .
But, with those limitations came a whole new way of experiencing the world around me. I took my previous woodworking experience and turned it into art.
I threw myself into my own little world, a world shifting into another form of reality, my own special little space.
"Even though you are still struggling, and not where you wanted to be, my sweet daughter. Let me tell you one thing, I am baffled at your artistic skills since coming out of brain surgery! Before surgery you were never like this - but now... it is like brain surgery unlocked something wonderful in you."
My artwork expresses me, my artwork is my therapy, and my artwork lets me feel "a part of something" again.
I may not socialize the same, I may get too anxious to leave my house, I may not have the mental compacity to sit down, converse, or listen too well, but I have found my happy place - my art.
Brain damage is confusing and difficult for people to understand because you can't see it.
The days following the craft market were not as terrible as I have experienced in the past from being out in public, and I believe, that is because I have support and I have found my happy place.
With having my caregiver (my husband, Chris) with me at the market, he alleviated my need to interact, speak, or put my energy into people. Instead, I was able to focus my energy on my artwork, my hearing on my relaxing music, and my eyes on the beauty I was creating in front of me - all the while, sitting and being present amongst people.
Find your happy place, find what helps ground you and bring you that feeling of being connected to this lifeline.
At times, a voice sneaks in reminding me of everything I have lost since being sick but the one thing that continues to pull me out of that pit of depression is my artwork.
Find your happiness; and remember, life has a plan for you - you don't have a plan for life.
Love and hugs to all my warriors out there.
The PGCT & Mental Health Awareness Campaign