Nightwing

I played the lottery.

Yep. 

I’m two for two so far. 

Bought two tickets and won on both.

Now I didn’t win millions, but I did turn $2 into $50. And Only proved…that the 1% life has it’s perks. The odds…are my friend and worst enemy. And when you live on the edges you get to see it all. You see the curvature of the earth and you understand that we are connected. And at times that sight justifies the fall.

I’m ready to put this episode behind me ( knock on wood ). I’m feeling much better. Still have some residual pain, but if its not so much that I can’t SHAKE OFF (like literally- shake, I’m serious PTSD women, shake it off! I have a new shake off song. It’s called Shake it Out (I’m not kidding) and its by Florence + The Machine. Its pretty awesome. Chorus- shake! It works. And thanks nightwing who sends back their weird things. I’ve picked up some tricks.

So how did it end?  I need to record what worked. 

Well time unfortuantely does play a role. No magic pill, but it seems that hanging with REMARKABLE HUMANS helps. I needed a dose of people that would remind me that anything is possible. 

I got to have dinner the other night with four remarkable people who reminded me that there are a lot of people out there doing good. 

Cognitive reframing. I have not finished my homework. Not out of lack of trying, just really hard to reframe reproduction rights or the systems that continue to oppress.

But I’m not giving up, because when you live a 1% life, you get to do the 1% highs too, but only if you can feel them, which at the moment has not been happening. 

A 1% life means the odds of rare incredible things are also high

I have not won the traditional sense of the lottery, but yet I have won some lotteries of life. And winning the lottery is not out of the realm of possibilites. This has not happened (yet). Wouldn’t put it past me. However, it would require actually playing the lottery. Maybe that is my next step.

(Note: Research lotteries)

But a quick reminder of some of the 1% of things that I can name off the top of my head. Setting a 1 min timer:

• I have been to 53 countries and often with no itinerary, but just to be there. I have stories worth telling.
• One story worth telling: When I was 19 years old traveling I gave a child a beachball painted as a globe in a slum in South Africa. This young boys and others sat with me where I showed them for the first time the globe. Watching them in wonder of the larger world and all the ocean is a memory I will never forget. BUT-Only to be back in South Africa when I was 28 to meet the father of this boy (by complete accident!) in his makeshift home of recycled metal with my beachball up there in center of the room as a chandelier. The odds of that?!
• My husband and son survived aggressive stage 4 rare cancers. They shouldn’t not be here, but yet they are.
• Children (and now adults) remember me. To this day I have a yearly moment where someone yells “Ms. Brody” or “Ms. Levin” and they can tell me in some way how I impacted their life.
• I know true friendship and sisterhood. Like real friendship.
• I live at sea for a good portion of the year. Seriously I do, on a boat. I wake up every morning to the ocean. It’s the best and what a unique life! Steve is the captain. I’m first mate.
• I have had quite a career and one with impact on people’s lives
• I also have helped the thinking and systems at large that educate our youth
• I started and run my own business
• I am a voice and activist in cancer and mental health. Often speaking for the speechless. AND being really close to curing neuroblastoma.
• I am a mother of two boys
• I married superman. Yes. He is real. The movies just got the costume wrong, it’s black, all black.

The 1% can be good can be remarkable. 

(Note: This is NOT cognitive reframing at all. Still homework is overdue. Figuring out how to reframe the other side of the 1% is the challenge. Supreme Court isn’t helping much.)

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