Nightwing

Hello July. I should welcome you. You ain’t June, but your turning out to be no better. You linger. You remember. You are still not quite there. You wake up every day in misery and panic which will take until afternoon noon to subside. 

You are doing terrible at your homework, cognitive reframing, although you have about 17 open tabs of attempts. Depression turns out to be a hard thing to reframe as its complete purpose is to create a lens through that you see the world. Reframing that lens is not easy, especially when the world is feeling so dark.

This weekend we celebrate America. Usually one of our favorite family holidays, but this year feels a bit strange. You know it’s strange when you put up the American flag and you wonder if people think you are some white nationalist. You wonder if you are scaring people with the flag of your country? That is a new feeling for sure. 

How do you cognitively reframe that?

LOG:

Morning missies continue

Movement is the best thing in the morning

Breathing app helps

Cognitive reframing is not going well

Cognitive reframing

According to the Dali Lama, this is the secret to joy. This allows his holiness’s ability to see love, laughter, potential, and joy in humanity even as he lives in exile and witnesses such pain to his people and the world at large.

In the Desmond Tutu/Dali Lama documentary I saw it in action as they “comforted” a child.

Setting: Desmond Tutu and his holiness are visiting a school for Tibetan children that had to leave their parents to travel to India for a better life at this refugee camp for Tibetan children. Some children as young as 4 are sent off on dangerous roads trekking for days without their parents who they will most likely never see again. All of these children live in a school where they are taken care of and are surrounded by love from monks and other Buddhists. 

A young girl (11 years old tops) was presenting her story to the Dali Lama and Desmond Tutu. She broke into tears when speaking about leaving her parents and how hard it was. She was unable to speak. The two men sat in silence as the girl wept in front of them. Desmond spoke first and uttered an “I’m sorry” while the girl continued to sob. You could see his compassion and he personal hurt. You could feel it. Empath for sure. She nodded. 

Then the Dali Lama spoke. He did not offer any such condolences. He did not acknowledge her pain at all. Instead, he said how lucky she is to be at the school to receive such an incredible education. How lucky she is.

How lucky she is?

Huh?!

Now that’s some cognitive reframing. 

Definition: Cognitive reframing is a technique used to shift your mindset so you’re able to look at a situation, person, or relationship from a slightly different perspective.

Cognitive reframing does not come easy to this girl. Just watching the young girl cry, made me cry. If I was one of the educators in the room, I would have had that girl in my lap by then rocking her and covering her in “I’m sorrys.” 

But I’m going to practice this technique.

Please join my family in doing something.

RSVP HERE

Every good plan needs a motto.

A rally cry if you will.

Here is mine: See something, say something. 

I stole it from the NYTransit Authority, I do not claim to be its author. Just sound advice.

And I wholeheartedly endorse this motto for you too. 

No more this “How is that even possible?!” No more cries of disbelief. No more!

I know hindsight is 2020, but there have been signs people and if we listened or paid attention to history we would know that this is possible. We would know that “knowns” are not “known” and that liberty is not protected for life. It turns out it needs to be fought for daily. 

We all have a serious bystander effect syndrome. 

We see the cracks, but we ignore them. We are too busy packing for our child’s camp or dealing with some drama that is right in front of us and we all assume “someone else is on it I’m sure.” 

And here we are. Going backward in time. Literally going backward. The laughing stock of the developed world. At least we can all understand why we have felt like we are running and getting nowhere. That has been a big thing for me recently. I feel like I’ve been running and running, but I’m exactly back where I started. But that is because the world is moving backward. Things like reproduction rights and the ability to make rational gun policies are spinning in the wrong direction. 

See something, say something may need a remake.

Noted.

New motto:

See something, say something, DO SOMETHING

Pleasantly surprised instead of horrifically sad

That’s my new approach. 

I may even get it embossed on a hat as this is not my natural state. I have always been an optimist. Maybe because I always worked with children, I had this perspective that things look brighter. That even if the world of adults suck, these students of mine will fix it all. 

Thinking the worst and being surprised by the best is a new thing and I’m still practicing. “Well that’s a negative outlook” Steve replied when asking my opinion the other night. That’s right. Your welcome.

I have a new plan in life.

I’m going to be pleasantly surprised instead of horrifically wrong/sad. I’m going to assume that “knowns” are even not “known”

I will live my life in perpetual bliss.

“Oh my, look the sun came up today!” says Abby pleasantly surprised

I’m determined never to be “here” again, but I’m still unsure how to do that. I doubt taking June out of the calendar is feasible and prior to cancer, it was a month I loved. So taking down June is not a solution.

But the status quo is not either.

I do not accept this.

I will not be here again. 

I have come to the conclusion that I live a “1% life.” I live in the 1% of probabilities both good and bad. My odds of being eaten by a wild bear are somehow more than yours. I somehow will defy those odds, but the opposite is also true. I will win the lottery more likely than you too. I have more tragedies than the common person, but also I’m also the luckiest too.

I’ve come to just accept this and I’ve got ample evidence to back up this claim. 1% life it is.

So my life will be a ride for sure. The first 42 have been something.

BUT BUT.

If I am going to have all these “tragedies” and FEEL all of them so deeply (empath), than it is ONLY fair that I get to FEEL the highs. The incredible moments when life just hugs you. When everything just lines up and you feel bigger than just your life. 

That is only fair. Why can I feel all of your pain but not the love recently?

So THIS can’t happen again as lately I can’t not feel the highs that my brain acknowledges exist. In June I can only feel the lows. 

Example: Benno’s birthday. Logical self- AMAZING! I mean the best. He was in his happy place and we were scouting a site for Benno’s bar-mitzvah. Here is a video of Benno, Steve, Jacob, and a friend watching planes land from a pool! How cool is that. But yet, I watched it, but couldn’t feel it. All I could feel was panic, fear, and sadness.

This is not fair. 

So this cannot happen again. 

I will spend this entire year fighting for June. I will reclaim this month as soon as I can feel it again.

Nightwing,

Today is a day to remember and each one of you should feel proud of your role. Without you, we would not be here today.

Three years ago, Steve and I were hearing our options, which were slim. We had gotten Jacob’s diagnosis only 10 days prior and we were still practicing its words. “Neuroblastoma,” “highrisk,” “chemo,” “radiation,” tumors wrapped around aortas.” 

It was a scary time, but this guy always kept it cool. Even learning how to pronounce neuroblastoma before his mama could. 

Here is a picture exactly three years ago today.

And if someone that day told me that three years to this very day, I would be taking this picture, I would have never believed you.

Jacob is on this bus, going to sleepaway camp. All his own idea. Big brother has no interest, none of his friends are going. This is all him.  While I almost vomited out of nerves for him, he just boarded that bus with a stride of confidence. He knows not a sole there. Nor has an older brother to learn from, he just walks right in. 

We continue to be in awe of this boy. And I know that this miracle today of Jacob being with us and even going to sleepaway camp is a WE thing. 

We did this. 

Without your prayers, your support, and love, none of us including Jacob, would be where we are today. 

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I’ve gained 10 pounds. I weighed myself. Something I never do, but when you attempt to put on pants for the first time in weeks and none of them fit, you probably have a problem. So I went to verify it. 

It really should not be a surprise to anyone, especially this one. I could have calculated the weight gain myself, no scale required just a calculator. I believe I’ve consumed an extra 2,500 calories of cookies a day, right before bed. 

Eating until I feel sick is a new comfort. It makes the pain shift. Instead of feeling anxious and sad, I get a terrible stomach ache. And I just keep eating through it. The pain welcomed, and the vehicle to the pain?  Comforting. 

I’ve been here before. Never gaining this much! This is a new record. And I don’t recall this being a huge part of the first two cycles. I’ve never seen a number like this before on the scale, but when you are on round three, you just give in. You feel so hopeless. That even though it’s “over” it’s never “over.” That you are trapped not by cancer, which you thought was the true villain, but by your own body. You feel like you never walked out of the hospital at all.  That you have been running in place for the past 3 years. Running and going nowhere. That you are back to square zero. 

Now I know in my head I’m not living this nightmare anymore, but can someone tell my body that?

So I went for a walk and I’m going to quit the cookies…or at least try.

LOG:

• Morning missies are constant. It gets better during the evening. 

• Taking some days between treatments to see if the spacing effect matters as I’m not responding as one would have hoped. 

• Today is Benno’s 11th birthday. Special day planned that I hope I can enjoy

“Clean slate.”

“Let’s start afresh.”

Just like the word “again,” this is the stupidest concept I’ve ever heard. Cognitively speaking there is no such thing as a clean slate. Nope. That is not how the brain works. Unlike a whiteboard, you can’t just wipe it clean. It has memories, while they may be faulty, they exist to help you.

We use the past to inform our future. It is an evolutionary advantage that has a lot to do with our species surviving for so long. Some say even more powerful of an adaption than that opposable thumb. Being able to remember the past allows us to make informed choices about the future.  Not going to eat those berries again! I remember being really sick last time.

For most of my life, I’ve had people close to me asking for a “clean slate.” Or not asking at all, just pretending that none of it happened. Just pretending that the last 4 days of screaming and crying didn’t happen and never speak about it again. As a child, I welcomed this clean slate. A clean slate sounded wonderful. Anything to make the present stop and the adults around me promised each time it would be truly clean. But it never was, because a clean slate is not real. 

A clean slate does not exist. 

A clean slate is Santa Claus.

I wish I could say for those believers that this concept serves them. That they get presents from Santa even. That the clean slate allows bliss. An ignorant bliss. But I have enough evidence to say that is anything but the case. Instead it’s just the same movie over and over. The same misery over and over. The same “surprises.” The same berries that made them sick. 

Just noting here to remember. When someone asks for a “clean slate” know that is the biggest bunch of bullshit ever. 

I found a unicorn. A giver of light. Thank you tiktok algorithm. 

I found an empath sister, Elyse Meyers.

Dear Elyse,

I have such respect for you. I am new to this anxiety disorder world. I did not grow up anxious. If anything the opposite. The first one to jump. The first one to travel the world without an itinerary. The first one to say “yes.” So this feeling is very new. 

I recognize that you have grown up like this. I really can’t imagine, but the fact that you have used your stories to help others laugh and know they aren’t alone, I thank you. And now that I’ve watched basically every video you have ever made, I am in such of awe of you.

You make me laugh. You are an amazing comedian.

You make me feel not alone. You are a natural storyteller.

Just like I try to do on this blog, but you are so much braver. I hide behind paper, you let the world see your face. 

Just sharing your name for my followers who may be looking for more people like this who share their stories to understand their own. 

Follow her on TikTok (if you aren’t already) . Trust me on this one.

@elysemeyers