November 4 2023
Monday Night Poetry! I had missed an entire month. It was lovely to be amongst these beautiful folks once again. I shared a new poem and an oldie that was published in Elephant Journal in 2015.
The Facets of Invisibility
The I in neurospicy stands for invisibility
The other day I came across this quote,
“Invisibility didn’t keep me safe. It kept me lonely.” – Facilitate Joy’s instagram
At first I thought, Yes! That’s it! And then I thought, No! I like being alone!
Invisibility is control
It is staying in the safety of my home
Reaching out on my terms
Texting on my terms
Posting on social media on my terms
Answering the phone on my terms
Stepping out the door on my terms
Invisibility is not saying yes to invites because on the day of the event I may not have the spoons to be around others
It is waiting until the last minute to buy tickets because on the day of the event I may not have the spoons to be around others
It means buying the tickets, but staying home because on the day of the event I didn’t have the spoons to be around others
And then I came across this quote,
“Too much. Too fast. Too intense. The glass soul falls to the ground and shatters into a thousand words. The invisible boy becomes visible, and all of a sudden, his emotions blast neon.” – Author: David Levithan
Invisibility means safety
Being vulnerable only when I’m at my strongest,
mentally and emotionally
It means loneliness and longing
It means happiness and contentment
It means encouraging and loving myself
It means longing for a deep friendship or a partner
While intermittently being profoundly happy with my current status
Invisibility means being alone more than I’ve been partnered
It means having mind blowing conversations with my teen that are the same fucking conversations I have with myself
About relationships, understanding social cues, understanding why people do the things they do, why it’s so damn hard to make friends, build friendships, and make romantic connections
Invisibility, loneliness and contentment become my partners
We dance together to keep each other company
Invisibility is the times when I’ve been brave
Stepped out of the comfort zone of my home
Exposing my tender under belly
Losing the mental acuity I possess when working, writing, and advocating
I become naive, trusting what others say
Attracting absolutely the wrong people
Losing control, losing myself
And then I found this quote,
“I was invisible, and I was only just beginning to realise the extraordinary advantage my invisibility gave me. My head was already teeming with plans of all the wild and wonderful things I had now impunity to do.” – Author: H.G.Wells
The I in neurospicy stands for invisibility
Invisibility means control
It means retracting back into the safety of my home
Reaching out on my terms
Texting on my terms
Posting on social media on my terms
Stepping out the door on my terms
And beginning the process all over again.
2023 Camilla Downs
Oldie shared:
Anger is like a storm rising up from the bottom of your consciousness. When you feel it coming, turn your focus to your breath. ~Thich Nhat Hanh
Dear Meltdowns, Welcome and Meet My Friend Mindfulness
Sometimes I’m able to sense when you’re lurking in the shadows. Sometimes I’m not. And you sneak up like a cat stalking its prey.
You penetrate the peace of an otherwise tranquil day like an earthquake suddenly rocking and rolling in the middle of a quiet night’s sleep. You are the complete opposite of fun and joy.
You are loud, aggressive, physically harmful, and verbally malicious. You lack compassion, empathy, and kindness. You take all actions and words personally.
What I want you to know is that I welcome you. Not like I’d welcome my best friend coming over for coffee and chatting. I welcome you like one later appreciates a grumpy relative during the holidays knowing that being around this person can help us to learn more about our own triggers.
You are helping us to know what emotions and situations Lillian has resistance to fully experiencing. You are the red flag that goes up as a warning that THIS is where she feels vulnerable.
So, I welcome you. I meet you with love.
When I am in a peaceful, mindful state, going with the flow of life, I handle you just as easily as a leaf floating in the wind. I choose not to accept your meltdown hook.
When I’m resisting life, choosing grumpiness, and having an off day, I accept the hook you’ve thrown out and jump right in with both feet. These are the times I learn more about myself.
Either way, one thing I know for sure is that you are not the true Lillian. The true Lillian is there, and you are simply acting as a buffer so she doesn’t have to experience the rawness of life. It is my hope that as I meet you with kindness and compassion, you see that it’s okay to move aside.
Lillian can handle the unexpected, the discomfort of not getting her desires, and the “letting go” of learning to be flexible. It’s okay to release your grip.
I will continue to meet you with a calm voice and compassion as often as possible, until the day you realize it’s okay to become dormant, slip into an eternal sleep, and allow a miracle – the miracle of Lillian fully experiencing emotions and going with the flow of life.
Love, Camilla (Mom to Lillian)
And the story behind this one (from my 2015 perspective).
Lillian has a rare genetic condition called 18p-. This means that she is missing the short arm of chromosome number 18 and it affects about 1 in 50,000. The main way this manifests for her is that she is speech impaired, and has balance and motor skill issues. Also, for the past year and a half she has struggled with experiencing anxiety and difficult emotions.
Situations that can cause Lillian to meltdown:
Events not unfolding as anticipated
Schedules being adjusted
Communication difficulties
Being reprimanded
Teasing from her sibling
In July 2015, Lillian had the worst explosive meltdown we’ve ever experienced. We made a quick stop at the grocery store to get a few items.
As I paid for our items, Lillian caught up with me, and once I was finished, I could sense her energy shift. Apparently, there was a miscommunication between us about looking at more gluten free desserts.
This quickly led to a volcanic explosion for Lillian. Fortunately, I was close to the exit doors, so I made my way out and headed to the car with Lillian melting down behind me. I quickly got into the car and invited Lillian to do the same if she was going with me. She was not open to doing any of the mindfulness techniques we’ve been learning.
I decided to start making our way home even though she had not calmed down – not the best choice in that moment. She was scratching, pinching, and pulling my hair from behind.
I pulled the car over, turned to Lillian and screamed some ridiculously outrageous comments. I quickly realized I must get out of the car. We needed space between us as I was bleeding and in a great deal of pain from the scratches and she was a big hot mess.
Once out, I closed my eyes, took a few deep breaths, and asked to see the situation differently. Upon opening my eyes, I saw, shining up at me from the rock and dirt filled ground, a beautiful red jewel heart. There was my answer, a reminder to always respond with love.
At this point, Lillian was ready to do a calming, mindful technique and I requested that she do it on her own. She got out of the car, chose to pick up a couple of rocks and studied them. After a few minutes we got back into the car and drove home.
We’ve not had anything of that magnitude happen since and I am hopeful this was simply “one step backward” before more steps forward. When this happens, one of us must be fully present and mindful or things can escalate.
Lillian has been seeing a psychotherapist since April 2015. We are working on cognitive behavioral therapy with mindfulness training. Additionally, I work with her on physically feeling the emotions within her body.
She has made great progress. It’s slow going, yet I feel we are closer to the ultimate goal. The miracle of Lillian truly experiencing negative emotions and the rawness of life without the buffer of a meltdown.
At some time or another it’s possible we’ve all experienced our own version of a meltdown. Mindfulness is a miraculous practice to bring into one’s life. Once we become practitioners of mindfulness, more often than not, we are able to remain calm and peaceful when we or our children experience the rawness of life.
With mindfulness we are able to tune into our body and notice the beginning signs of a meltdown; clenched jaw, increased heart rate, tight shoulders or neck, stomach pain.
At this point we can say or think to ourselves, “There is anger inside of me.” This is the opposite of thinking or saying, “I am angry.” These two statements have completely different meanings and will take one down different paths.
Once we acknowledge there is anger (or any other uncomfortable emotion) within us, we can then put our focus on how this physically feels in the body. Is it tight, rolling, moving from place to place?
Let’s be real here. This is absolutely not fun and can be extremely uncomfortable. Yet, if we stick with this practice, it will become more of a habit and eventually the uncomfortable emotion will release.
