Beauty is in the eye of the beholder

Dear Dad,

I heard you are having a hard time with this all. 

And now I know after speaking to you.

I know that it makes you question everything that you ever believed to be true. How can a man (and woman) who committed their entire lives to the greater community, like yourselves, have such curses on their home (literally and figuratively)?

My parents home burned down in the early 2000’s. And my brother and I have had tough roads.

I too am grappling with this, but Mom tells me the hardest for you was seeing Jacob, without hair. It was a moment for you and you worry about how he is feeling about it.

I get it.

So let me alleviate that one thing. I can do that for you as you have always tried to alleviate things for me. Coming to pick me off the floor, flooded in tears.

Up until now, I’ve answered this hair question (through mom) that he has yet to look in a mirror. It’s pretty remarkable and not obvious to us, adults. 

When your 5, why do you have reason to look in the mirror? Or maybe that’s a boy thing? I don’t have any girls, so maybe this was not the case when raising me. I recall liking to dance in mirrors…so maybe this is a boy thing? Or maybe it’s a Jacob thing? But either way he has no interests in such vain pursuits. None. 

It has no purpose for him. Unlike watching inappropriate movies of battles. That he derives great pleasure from!

The only reason you have to look in a mirror is for others. Looks only have value if you have a a definition of beauty. Something to align to. It reminds me when you once told me that skin whiteners were the number one selling beauty product in Asia. Remember for my paper on macroeconomics? Probably still is the number one selling product. But that isn’t because having whiter skin helps them in any strategic way (or sadly maybe it does). At its core its about aligning our perceptions or their perceptions of our perceptions of what constitutes “beauty.” 

So Jacob has no reason to look in a mirror and doesn’t. 

Until today. 

I parked his stroller in front of a mirror. Not just a mirror, but an over 20 feet fall mirror. I wasn’t even thinking nor saw it. I was just thinking of getting the stroller closest to Jacob so he had to walk the least amount of steps with his tubes.

And he looked. It was hard not to. It was right in front of him. 

He asked “Am I getting bald?” And a few of us who were witness said “your getting handsomer.”

 And that was it. He went back to playing batman.

His metric of what is beauty if built on perceptions. We get to decide what those perceptions are. 

Handsome. That is what we decided.

So your fear has happened and again Jacob came out victorious. Again and again he takes his situation in stride. Again and again he lays in a confined hospital room for 12 hours days and never asks why he can’t go outside. 

He complains little. He feels crappy, but complains little. He is amazing.

I know “trust” right now is hard, but I know one thing I know is you trust me. As I do in you. So I need you to trust. I need you to remember the contract we wrote the other day, not the words, but the color of it. I need you all in. Not just in doing stuff, but believing in stuff. Believe in Jacob. Believe in me.

Karma

We have an additional family member. We actually have many. Every nanny/ housekeeper, etc has run back to our family. Some have even volunteered to quit their jobs and donate their time. One refuses to let us pay her and she is living with us. And some of these we have fired.

I can’t imagine this is the norm, but it is in our norm. Every person who has cared for my children is my sister/brother and I treat them as such. I’ve always treated them with kindness and the ultimate respect, trust. Just like a teacher.

Trust is hard for a lot of you. 

I watch it daily. And I get it. There are some TERRIBLE stories filling our heads, but if you look at the data, not the news, you will see an opposite story. A narrative of a world (and I use “world…as OUR world, USA), just getting safer. Trusting those who care about your children and showing them that you do, pays off. sometimes this person was exactly what your child needed. Sometimes they can show you things. You know it takes a village right? So why are we trying to do it alone? Or just our way?

Trust is a big problem we all need to overcome. 

But I’m learning that trusting people, pays forward. Look at what love. Our family needed help and they just ran. 
“KK” is a Buddhist. She is a pretty remarkable woman. She lives her creed. She is without wants. She lives for the greater purpose that is not valued in any currency. She talks about cleansing me of bad “thoughts” bad “wishes.” I believe she is talking about karma.

Karma = the sum of a person’s actions in this and previous states of existence viewed as deciding their fate in future existences.

She asked me to think about all the people that may have wished me harm so she can cleanse me.

And if anything can help my son, I will do it. Tell me to stand on my head and bawk like a chicken. DONE. 

So I took this task seriously. I started listing them in my head. I was listing and listing.

Listing and listing. 

I think there are people who have wished me harm at some point in my life for a variety of reasons. Do you feel the same?

I wish there was a way to collect this data. Do all of us moms and dads suffering over hardship of the innocent (example: sick child) have “bad karma?” Wouldn’t that be an interesting thing to study.

I even counted one DEATH THREAT.  Yes, I have even received a threat, a death threat against me and my children. That happened once. Do you think that parent was asked to leave? Nope. I actually think I was concerned I was going to be fired. 

I have read anonymous surveys where people say horrible unkind things, “parent surveys.” The biggest blow “Abby Brody is the female version of Trump.” I cried over that one…for about a week.

That one felt really low. Sorry Republican friends. This is not an attack on his policies (which I do NOT agree with. We can debate that), but rather it felt like an attack on my character, which I think we can ALL agree is not Trump’s best asset (pun intended as he doesn’t seem to actually have any real assets! OMG! Double pun. “real assets” Real estate assets…okay maybe I’m pushing it, but I crack myself up. 

I digress…

Back to the bad karma.

I’ve had to say hard things to parents. Hard things that they don’t want to hear. 

I get it. My own kid had to leave Avenues. He wasn’t thriving there and I know that every child has different needs. Don’t think this was an easy thing for me. I may “know better” than most parents about the importance in finding the educational setting your child will thrive in. It’s about finding YOUR school, but still it sucked. I loved Avenues. Poured my time and soul into it and Benno wouldn’t be a benefactor of it. 

But I get it now more than ever. 

When we got his news. I wasn’t too kind to the doctors that told me. I screamed in their faces. I screamed. I’ve been at the end of that scream so many times over such smaller things, but there is no such thing as small when it comes to your child. Everything feels BIG because they are so small. 

And now I think a lot about karma. 

I think about the power of other’s to alter your life. Not sure where I land on it. Just sharing what I’m thinking about right now. I’m thinking about how we cut each other down instead of filling each other up.

Especially women.

I’ve never understood this. Women can be so vicious. They reek of jealousy and have the maternal instincts to kill. So basically they are capable of killing anything that comes in the path of their child. With no concern of lion attacks, they have replaced that with not getting into the robotics time slot they wanted.

Hey that energy has to go somewhere!

But can it go to something that matters?

But can we try harder?

I’m trying harder. I will do better next time I meet with you. I’ll listen more. I’ll gossip less. I will be present instead of thinking this is the twelfth meeting of the day. I will customize to your needs by being more aware of those needs.

In return…can you be kinder? Can you not cast harm?

It’s just bad karma.

Certaining

You all pushed. Do something for you for your “birthday.” It will be good for you.  So I did. I left the hospital and did something for me.

I went to class.

I enrolled in school. I’m going to go every Tuesday night.

School.

Back at home.

Steve came with me. He wanted to come. This was not an easy thing to pull off. Jacob while on Chemo needs a lot of support, but we pulled it off. Both of us in one place at the same time. Steve sat still for 2 hours. Listening to a lecture. This is not usually something he is capable of. Steve sat! He wasn’t even shaking his leg and checking his phone as he does in parent-teacher conferences or I imagine him doing in his “Monday meetings.” Always waiting to leave. To get to his colored blocks on his schedule. To do. Not to sit.

But, my Steve, was calm and listened for two hours. 

I know it may seem like an odd birthday choice.

After sitting/living in a hospital for weeks, I choose my first two hours with my husband to be a lecture. Sitting all day to sit again. Taking class, which for most people is the opposite of fun. Not attempting to go out for dinner, go workout, get my nails done or at least a drink date with my husband. Instead, I used this precious time to go to class.

Well…it’s my birthday and I can learn if I want to.

And it was exactly what I wanted to do. Learn. Learn on my birthday.

I went to the class that I always thought about taking but never did. It was a topic that I got a glimpse of once in my late 20’s, but then abandoned, like most things in life that don’t fit perfectly into your schedule. Life was too busy for such things. 

So I took “that” class. that one thing you always wanted to know but never gave the time for. Maybe its a pottery class for you? A rock climbing class? Quantum physics? French? I went to my version of that.

And I really enjoyed sitting in a room with strangers. All strangers with one thing in common, we all came to learn. We all came to question.

No one knew my story. Just another “kid” in a backpack.

I learned a lot in the class, but like all good classes, it wasn’t from the front of the room, it was from the sides of it.

I think learning is just as much about the who than the what is being taught, or even the why. This is a big statement for me. Even contradicting.

I’ve spent my entire career focusing on the why. Understanding the WHY is the basis of all learning. You can talk all about the right angles (the “what) to a student all day long. Until you are blue in the face. Some will entertain you and listen, take notes, and will regurgitate that information for you in some test or paper a week later, but they will never learn it.

Mastery only can happen when the WHY comes first. If you don’t tell someone the reason what they are learning, it has no meaning. We are all driven by desire, a desire to fulfill our needs and if we can’t understand how it benefits us, then we just go into robot mode and take notes to preoccupy the mind, and for some of you, you just shut down and fill your heads with more exciting visions. Some people call you ADD.

But I’m rethinking this whole idea. I still agree the WHY is important, but the WHO may go first.

The teacher is the ultimate who, but Sally and Jim can who sit next to you can also play an essential role, if not equal in some ways. Don’t get me wrong, the teacher is paramount. A good teacher is important to learning. However, every good teacher knows that the magic of learning is within the whole group. The community built of strangers. The group of random kids that become “starfish” or “Group 504.” The very act of creating the community is learning in itself.

A teaching method that sums this up is the “Harkness” table where students sit in a circle instead of at rows or group tables. A circle has no beginning nor end. There is no obvious seat for the “teacher” and thus you all become teachers. Your peers will teach you just as much as the one with the “answers.” The questions from your peers will be most likely the impactful ones. The things you were thinking but didn’t know you were thinking. As my dear friend and incredible educator, David Dunbar, calls the DKDK zone. The zone where you learn what you didn’t know you didn’t know.That happened to me twice last night. Someone asking a question that I didn’t even know I had.

 The learning happens in the center, center of that circle. The learning happens when the collective group focuses on one thing. The power of that moment.

So I sat down in that room next to strangers of all walks of life. Different sizes and different shapes. I sat next to a man who lost both of his parents and two siblings to cancer. One could say this is a coincidence, but I’m keeping track…I’ve written down every random person I have been placed next to recently. All of the strangers that I meet to get things for Jacob (pizza, waffle fries, you name it) and I learn their stories. I don’t ask for them, with the exception of twice. But its as if they know they need to tell me something. And it’s not about me. It’s about them and THEN they tell me something a bit special that is hard to put into words. As each has been so unique. So different.

And then someone walked into the room. Someone I know, but not really. Not a close friend, we have only met once, but I have spent time with his wife. Both being people I’ve always respected from afar. Someone trying to make the world a better place. And this acquaintance and I are only connected through Jacob. Totally random, but not random.

That is what I’m finding. I’m finding the totally random, not random.

I’m learning that there are no such things as coincidences. And that is a hard pill to swallow. Especially when you have two family members diagnosed with rare cancers in one family. It is a BIG and chocking pill. And I’m still chocking on it.

But these acts are confirming.

They are certaining. That’s not a word. I know, but it is now.

I am taking “certain” and making it move. 

I am making it a verb, because it is an active process. 

Certaining. 

This is very much still on!

Thinking about next year a lot. Thinking about living my best life. 

Scratch that.

I was living my best life, now I’m going to lead OUR best life.

There’s a difference there. 

I’ve been planning my 40th birthday. I’ve been planning it for over a year now, way before living in the “future now.” Before Steve got sick. Way before Jacob got sick.

It is SO planned (but yet unplanned as there is nothing more authentic than what I’ve planned).

I had written the below last March. my plan was to send this in an email in August. I even created an attached PDF. You know that most learners need visuals.

And I write this to ALL of you. ANYONE READING. You are ALL invited. Stranger too. 

Original email below…

Dear XXXX,

A year ago, I fulfilled a dream of mine. I went to burning man to see the installation art. I went for the art, but left with much more. I now return for the community, which I hope includes you. 

A bit of my story. 

Going to burning man for the first time, I had no idea what I was walking into and also how badly I needed it. With everything going on in the world and spending my life dedicated to our youth, I was spinning by the destructive policies and actions of the adults running the world. I was unsure if humanity was innately good. It was hard to run a school discussing quinoa pasta with type A parents when you saw the bigger picture burn. I was miserable. I was unsure if I could make impact with my expertise and passion. I had just left what I thought was my dream job. I was lost. 

What I got? Hope!  I left burning man with an optimistic view of what can be. I saw humankind at its best. Yes… Many of them are at their best on drugs dancing with wild abandonment, but that feels trivial to the bigger message of the event. It’s bigger than drugs and music. You will be transformed or at least in bewilderment that something like this exists. It will shake your very foundation.

For my 40th birthday and our 10th wedding anniversary we will return to burning man. We are inviting you to join. This is the gift I wish to share with my friends. I wish for everyone on Earth to experience something this transformative.  If you are looking for something, even if you can’t name it, consider this a sign and join us. 

Please know that we expect 90% of you to pass on this opportunity. And you have good reason to.  We recognize it may not be the best choice given the precious little time we have for vacation nor how you would want to spend that time. It is not a beach vacation at a luxury resort (by any means) nor will you make memories with your children. You may come out a better father or mother though. However, if there is a smidge of curiosity, I promise you this- you won’t regret it. It is that incredible. 

Let me be super clear that this is not a party but a personal journey. While Steve and I will make an itinerary with touching base points With a wedding Attend, There is no expectation to join anything (including the wedding!). The ultimate birthday gift to me, is you doing you! There is no such thing as time at burning man nor a place to be. Where you are is where you should be. 

As the saying goes: “the playa provides” by the end each of you will not only understand that phrase but speak to it personally.

This is a RSVP and commit type of event. That is why we are giving you a years notice. We need to know if you would like to join by September 1st to get your RV spot. You will share an RV, but have your own room (up to two in a room). 

Email Steve regarding questions about financial commitment (sbrody@gmail.com). 

For those brave enough to adventure with us, please know that I have loads of fun events to get you excited and ready over the next year. 

Attached is a infographic I made to address FAQs and talk event details leading up to the burn 

Let me be clear again… By no means should anyone come to this for me or for Steve. We know you love us and wouldn’t want to miss my bday and our vow renewal, but we don’t want you to come unless this is what you want to do. Do you!

Much love,

Abby

*This is very much STILL on!

Certain.

You tell me today is my birthday. That it is July 16th.

Today I turn 39 years old. The secret is out! 

My age. 

This was once a closely guarded secret for a good decade. My age hurt my career. While everyone was trying to be/ look younger, I was always hoping to come off older. I even had the head of HR recommend wearing glasses. I guess glasses command respect. Maybe you get a zoomed in lens on life. And I was game, anything to keep the onslaught of complaints about not being ‘“old enough” or “good enough.” I actually did buy a pair of fake glasses. I looked in the mirror and knew this is “bullshit.” I’m going to wear glasses to make some parents feel more comfortable. I’ll let my work speak for itself.

Looking back…maybe I should have worn the glasses, lol.

Next year I turn 40 and I embrace my age. I embrace if it sounds “old” or if it sounds “young.” It just sounds right.

It brings me back to my last milestone birthday, 30.

I’ve always gone “first” with the majority of my friends. I’m the “oldest.” Just a few months older than all of you. My mother, not an educational researcher by training, but a follower of instinct knew that being the “youngest” (summer birthday) puts you at a real disadvantage in life, she held me back in Kindergarten. Smart lady! Thus, one of the oldest. I recall everyone freaking out about me turning 30, because it meant that they were next. Turning 30 meant we were not in our 20’s, youth officially over.

I, on the other hand, was SO excited to turn 30. I hated my 20’s. I had a rough ride. My 20’s were full of insecurities and painful losses. And here I am again…rooting for a decade change. This time I walk in with eyes wide open.

My 20’s taught me to value myself. In my 20’s I was a victim. And I use that word properly. I know what it implies. I was actually a victim of crimes of both the physical and mental.

I walked into my 30’s saying NEVER AGAIN. I will settle for nothing less than I deserved and will never allow myself to be a victim again. I started off with a bang I married Steve Brody when I was 30 years and 8 days old. A good man. A man that I deserved. I deserved the best.

I walked into my 30’s as a warrior. I walked with purpose and armor. I would RUN things. I would protect myself. I would be in CONTROL. And I accomplished more in my 30’s that some would accomplish in a lifetime, but it was on MY terms. It was for what I thought was best. It was based on research on science, but I think at times short sided. A lot can’t be explained by research and science…so I have learned. 

And its time to enter another decade soon and again I’m looking forward to it. I wish a year from now is NOW.

This decade too will be different. I’m walking in without a defense shield. I am relinquishing control for certainty. Certainty. No doubts. Certainty in chaos. Certainty is the exact opposite of anxiety. I will walk into my 40’s with that. Not sure how to get there yet, but I got a year or more. Time stands still over here. Days can become years.

And it will be a decade of abundance of love and health.

But I do KNOW one thing about this certainty that I have a year to find. This certainty does not come from within, it comes from connection. It comes from you. It comes from working with others, not trying to control others. When you let go…the world comes to you.

I am certain. 

Not convinced? Look at this.

Thank you for helping me close this decade.

With extreme gratitute,

Abby

Today is “one”

Today is day one.

That is how a month in my time works. There is no July 10th that will be followed by a July 11th. 

There is just a count. You just count. 1, 2. 3…

It gives you no idea of yesterday, there is no “name,” it is just time passing. You count time passing. 

Day 1 is the first day of chemo. Our months are, as with everything in this time, unpredictable. There is no standard 30 or 31 days, some can be short, some can be long. There is no way of telling. 

It’s an interesting way to live.

Not knowing days. 

Not knowing what tomorrow is going to be. 

Not being able to “plan.” Not to be able to look forward to that “weekend in Napa.” There is no countdown to something.

Only counting.

Counting to start over again.

When I think about this, I wonder if this is the “NOW?”

Am I living in that “NOW” that we are all supposed to be trying to achieve? Isn’t this THE hot thing right now? Living in the NOW? Living in the moment. Savoring the place you are in. Being present.

I’m into the concept. I’m into it. It’s putting down your phone and actually playing with your child.  It’s being present.

 I’ve tried to do this in your time. I never was successful. I was always go go go go. Always a quick text or email I had to send. Never fully with anyone. Even on vacation, Steve and I would plan our next vacation. How to do it better. Always thinking of tomorrow. Always wanting more. 

And here I am. In the now. Where I always wanted to be. Wanting nothing, but yet everything, health.

But I’m rethinking this NOW concept. 

I’m not abandoning it…just rethinking it.

Because what if the present is not livable?

What if the NOW is unbearable?

 And unrelatable? You feel alone. You feel like you are walking alone. Not many do understand what I’m going through, thank God. These are rare shoes. And of the unfortunate few, there are none in your exact shoes. No one has a Steve and a Benno. No one. 

This experience can feel that way. Isolating.

The unbearable part is bad, but the unrelateable part is the worst. 

Right? Being relatable is what gives things meaning. 

Hearing a good song is only as good as having someone to dance with it to. Singing happy birthday doesn’t have meaning without other’s ears to acknowledge it. Our sense of self, our sense of accomplishment is all only verified by others. 

And it’s a two-way street. Living in the now is not just about being present for yourself and having others verify your existence, but it’s also about being present for others and verifying theirs. It’s a win-win, if you will. 

So I’m working on living in the NOW here, in the unbearable and unrelateable.

I want to share my tricks. My secrets. Just as you taught me how to spike my child’s mac n cheese.

First, let’s address the unbearable part. 

I live in the future in the now. I visualize it. It’s a strange concept so just go with me on this for a bit.

I envision building legos with Jacob (while I’m actually doing it) with him on a beach. I envision us washing our hands for the 17th time in an hour at an outdoor music venue. I can even hear me say to him “port o potties are so disgusting. Here’s purell!”

I watch Steve cure cancer. Or together we pull our talents with him doing 99% of the lift and cure fucking cancer. I envision it clearly. This allows me to be “in it.” I can be fully there with Jacob.

I am creating my own now. 

And now to the unrelatable side.

This is it. You write. You connect. On your own terms and say whatever you want. Speak your truth. One thing about having a child with cancer, is you can say whatever the fuck you want. But speak your truth for the better GOOD. Speak your truth that will help others.

Verify their experiences. 

So today I count with you.

It’s”one” today. 

Level 11

Are you a Christopher Guest fan?

As in the screenwriter, composer, musician, director, and actor? The man behind Spinal Tap, Best in Show, and my personal favorite, Waiting For Guffman? If you’re not, you should be. The first 30 minutes of Waiting for Guffman is the best. Hands down. BEST.

I love mockumentaries. It’s two forms of the best entertainment together. Documentaries and comedy. The combination is just brilliant. Getting to have characters talk directly to camera and hearing their inner thoughts makes it feel authentic, and hysterical. Like the TV show, The Office. 

Turns out this is a genetic thing. Jacob loves The Office. We’re watching the entire show from season one. He thinks Michael is the best. “He makes funny voices.” I wonder how much he understands, but hey its something we can do together, but it does require a bottle of Tylenol.

Remember Christopher’s Guest’s first classic? Spinal Tap? Remember level 11? If not, get educated. Link provided. You can skip to time stamp 1:30 if you need to. Actually just do that. Life is busy and I appreciate you taking any time.

Go ahead. It’s only 15 secs after that.

Jacob is at a constant 11. 

It seems to be some side effect of the chemo. He is VERY VERY loud. SO LOUD.

So very very loud.

He is constantly screaming at me. Just a simple command like “Can I have water?” is a red alarm. The yelling and yelling! And the volume on our TV is at 100. 

Nope 101, its got that extra “hit.”

Make your bed

I collect commencement speeches. I love them.

People who have worked with me know this factoid. I can even be pretty annoying about it. I will even make you sit and watch them during faculty meetings.

There are no bigger speeches in life than commencement speeches. This is the speech of reality. This is the speech that matters. It matters more than all the tests, all the papers, all of the projects, this person is going to tell you about LIFE. They are going to launch you into the REAL.

Its big. 

Your small. 

You are about to “enter” something. It could be college, it could be the workforce, it could be the military, but you are leaving to go into the “unknown.”

These speeches often are about dreams, rah rah, “you can do anything,” but I collect different ones, ones with real advice. Ones with experience and data. Ones that every child and adult should hear, because experience is the real key to life, not school.

I have one clear favorite. It’s Steve’s too. 

Admiral McRaven’s.Yes that name is someone you know. I hear you saying it. “I know that name, but how?” He was in charge of the Bin Laden raid and is one of the MOST respected men in the world. Or at least in my world. He is a man of sacrifice and dignity.

Its 19 minutes. Put this in your schedule. Make in into a nicely colored block of time if you need to, because you need to watch the ENTIRE thing (or at least the first 10 minutes). I know you’re busy.

 It will change how you parent. It will change your daily life.

I share this with you here.

So mom/dad going through this, or mom/dad right behind me, if there is anything you can do in this fight. If there is anything we can do to make it more manageable. If there is anything we can do at all when everything feels so out of our control. It has to be simple.

Let’s make our beds. Our home beds. Our hospital beds. Let’s make them. 

I know it’s not easy. 8AM is my least favorite time of the day. I am at my lowest, but today I started making my bed.

Brave

People keep telling me how “brave” I am. 

I appreciate the compliment, but it is not deserved nor the compliment that is warranted.  Let me be clear that this journey is not an act of bravery.

People who run into burning buildings. Brave.

People who free climb. Brave. Stupid, but brave.

People who try something that is new and scary to them, like Benno, brave.

To be brave requires choice. You choose to walk a path.

That is the difference.

I am not brave. Jacob is not brave. 

We are fighters. There is nothing brave about it. There is no moment when we had choice. No moment of decision to not run into the burning building. No moment to decide to wear a harness when scaling that mountain, and no choice in living this scary experience or not.

No choices, but one. FIGHT.

Maybe it’s better than being brave. You have no “out.” You have to be all in. Maybe it’s stronger than brave, but brave it is not.