40 years it is

I’m just not organized enough for this lie. I keep forgetting myself. This mulligan idea is more complicated than I realized. I don’t know my own age. On forms….do I lie? Do I have a “real age” and a “fake age?” A “medical age” and a “social age?” I can hardly remember my age as it is. 

Too complicated.

So 40 it is. Today I am 40 years old.

I still think the mulligan was a good call and recommend it for others who’ve been robbed entire years to consider, but I’ve realized it wouldn’t work for me (beyond being not just organized enough to pull it off).

I realized that I can’t erase a year of my marriage. Steve and I got married at my 30th birthday party. It was a surprise wedding in 2010. And that means that Steve and I are also having a milestone too, 10 years. And we have a LOT to be proud of. We have a lot to celebrate.

I don’t know many marriages that can do what we do. I don’t know many as lucky as me to marry not just your best friend, but literally the “best.” He is the best at everything he does. There is nothing he can’t do and I am proud to call him my husband. The divorce rate of couples with sick children is HIGH. SO HIGH. Understandably so. Take your normal stress that can hurt a marriage and then throw in something so complicated, expensive, and emotional that your heart literally breaks. I’ve seen what it does to my fellow cancer parents, pushes them far apart physically (one living at the hospital) and mentally. The things to argue about are endless. And with no one to “blame,” as cancer has no punching bag, your spouse can easily become that vehicle. But not us. We did this entire year as allies and grew stronger. I think if anything our love just grew.

That is something to be proud of.

So happy anniversary my love, my captain, my best friend.

Today I don’t celebrate 40 years, but 10. 

We got married to Simon and Garfunkel’s Bridge Over Troubled Water. At the time that felt appropriate for other reasons, but now I truly understand that bridge. We built a bridge and then even a boat to get over that water. So far the score is. Water zero. Brodys 10.

Oh don’t you feel bad for me.

Don’t you for a SECOND feel bad for me.

I am totally fine. More than fine. I’m blessed.

This PTSD is something that I will take. PTSD has the word POST in it. While, Jacob is still in a fight (as there is no cure), we are past so much and look at him! He is doing SO GREAT. He can sing, dance, and fire nerf guns at once. A triple threat he is. 

And my brain and heart is fully aware how blessed I am. It’s just my body that needs work. Still trying to remember how to live without trauma.  And turns out the drugs for PTSD do work. Today I feel lighter. I will take it. I will take the challenge of looking back and healing. Looking BACK on trauma is better than living it. I will take POST. I will take PTSD. 

And today Steve and I set sail alone (without kids for first time since Jacob’s diagnosis!). 

There are some vines I need to see. I tend to like their grapes. And we have some celebrating to do. So cheers Martha’s Vineyard, we are coming for you. And we are singing the entire way there. NAH NAH NAH NAHH NAH.

Oh and I had to share this video. Totally random but came up on my feed the other day and it made me smile so thought maybe it would do the same for you. This is PRE Jacob. For some reason he was really into twerking at age 3. 

I plan on twerking my way through this PTSD and life in general moving forward. Booty in the air, shaking. Watch out.

Schools reopening?

Schools across the nation are struggling and looking for direction. Looking to understand the “how?” 

How do we open? 

How will we do social distancing with young children?

How will Kindergarten students wear masks all day? 

How do we enforce these rules? 

How do we keep everyone safe?

How do we afford this (in every sense of that word, time, resources and money)?

And it’s especially troubling as there is just not enough information to make even an EDUCATED guess what best practices should be in a pandemic. We, schools leaders, are not experts on this by any stretch of the imagination. Sure, we will do our best, we care about children, but we know as much as you do.

We also have no leadership from our government and now a lack of trust in it. Schools are rightfully concerned that the President is using their faculty and students as a pawn in politics. The visa threats Trump is giving us in higher education gives us good reason to question. So that leaves K-12 schools in each district  independently “planning.” 

And I listen to these school plans. I truly am trying to be on their side, but for any school’s Education leadership to claim they have this covered, is dangerous and laughable. Not that they are claiming they have all the answers, but they do give parents their “plans.” All of these plans seem so arbitrary to this educator. Yesterday on a call with a school, they were explaining their de-densifying plan and the role of “pods” of 12 children. When I ask why 12? Why not 13? Or 5? They can’t answer. There is no science here. There is no reason. It is just a number they feel will make people feel more safe. No science, just a number out of a hat.  And how will they socially distance these 12? And their faculty? Silence. Or sometimes I hear about dividing the school into zones, all costly, all hard to enforce and the clock is ticking!

The President did get one thing right, it’s expensive. The costs?! Unfathomable. There is no way low-income schools that are zoned in geographical areas with lower taxes, can pull this off. Again, putting the most vulnerable populations at the greatest risk. The cost of pods requires adding staff, making physical changes to the building, changing air flow, PPE, etc. And all teachers are needed. Your PE teacher may be teaching math next year. Not many are realizing that opening schools may not be the best educational choice either. We aren’t ready.

And let’s be clear, even the richest of schools don’t have these funds. Schools don’t have extra funds sitting by the wayside! I’ve seen school budgets. Every cent is used. Education is expensive. And while the government is fine bailing out companies, schools will also need billions of dollars to meet guidelines, but as Trump said “unacceptable. Too expensive.” So that is definitely not happening and even if it did, those funds would not be usable until November. 

The logistics in de-densifying schools will require most schools moving into hybrid models where students are not on campus every day of the week. So the very issue we are trying to solve, which let’s be honest, is the economy and child care, is still an issue! We still will have parents (and don’t forget single parents!) that can’t work because of childcare issues. Count me as one. I’m a mom who also works. This has been impossible. Truly impossible.

So what to do?

Let’s start with the number one priority, SAFETY and getting this virus under control. And let’s use, of course, science. We have zero idea what the possibile long term issues can be with a child who contracts COVID. We are just beginning to learn about the adult long term issues. We know that the virus grows in environments like schools (seen by the case jumps in the few schools that are open). And we know that cases are going UP in this country and opening schools while cases are going up will have life and DEATH consequences. So to pretend that we can responsibility open schools this fall is ridiculous.

Let’s call it now. 

The fall will be distant.

 Let schools use their time and resources towards one plan to execute. Listening to the various plans and teams schools have had to put in place to be ready for 6 different scenarios is a waste of money and is honestly hurting educators who are exhausted and just getting more scared/angry. If schools were committed to distant learning this fall they could spend this time focusing on delivering a quality online education rather than crossing every toe and finger this all will go away and they can go back to business as usual. 

Next priority: Childcare. This is real. We need childcare for these at home studying children. One way is to create micro communities where families share the burden and host “school.” But I also know of a whole lot of people looking for work and a whole lot of young adults learning distantly at home as well. 

What an opportunity to create jobs and give our youth an opportunity to give back. One dear friend also recently wrote about this idea and called this childcare force, America Cares. A program like the peace corps, but for childcare.

Personally I think this is a WIN WIN WIN deal. You know I only like those.

#1 WIN: Safety. No experimenting with children and our teachers. And really the nation!

#2 WIN: Schools will have a direction. Maybe not the one they envisioned or wanted, but one they can now spend time and resources working towards something they can execute.

#3 WIN: Society. Putting people to work and letting America come together to rally for our children.

And for those who are worried that this plan will put children behind. That children are not going to be ready for the next academic year. Now THAT is a problem us educators can solve. That is something we can do. That we have research on. So let us solve that one, not how to keep children safe in a pandemic with zero funds!

Narratives

It has come full circle again. The whole thing started with a search of narratives. Narratives that came before me. Hearing other women’s stories with pediatric cancer children to try and understand how they do it. I read their blogs and started my own to give what I had been given.

And today I again search for narratives. I am looking for stories of PTSD as I continue down my best known coping strategy, knowledge. The narratives are startling familiar. Unlike the first time, I know first hand these narratives. I feel I could write them. All striking real cords. Feeling less alone on this.

As one guy shared: “When I heard myself arguing a case in court, I would observe myself from a distance and wonder how this guy, who happened to look and talk like me, was able to make such a cogent argument.”

He too is not capable of feeling in body. I wonder if he is 3-10 feet away. Probably never farther. 

And then one sentence out of the many books I’m reading really stuck out at me.

“Many traumatized people seem to seek out experiences that would repel most of us. Many patients often complain about a vague sense of emptiness and boredom when they are not angry, under duress, or involved in some dangerous activity.” 

And that rings so true. I didn’t understand it, until I read it, but it’s true. I can name the times I’ve felt best these last weeks and they are FAST and FURIOUS. I found this piece of writing I never finished from when Steve and I stole away on the boat without kids. 

We went fast. Like 17.

Steve and I stole away and again we were flying. Like we were 17. Flying on that little boat where you felt at any moment you would be flung out into the water. No agenda, but speed.

And I liked it.

I felt whole.

I felt alive.

I was there.

And while many would scream. I felt at peace. I wasn’t driving. I wasn’t in control. Any turn could throw me off balance into that water, but I knew who was and where I was. It felt so good.

My body’s system is all off it turns out.

“Trauma produces actual physiological changes including a recalibration of the brain’s alarm system, an increase in stress hormone activity and alterations in the system that filters relevant information from irrelevant. We know that trauma compromises the brain area that communicates the physical, embodied feeling of being alive.”

That explains why I need massive simulation to feel alive. 

“In PTSD, the body’s stress hormones after the threat do not return back to baseline. Fight/Flight/freeze signals continue after the danger is over…Instead the continued secretion of stress hormones is expressed as agitation and panic, and in the long term wreaks havoc with their health.” 

And the long term health issues of having elevated trauma like stress hormones circulate in your body over years listed are numerous and scary. I need to get this under control. Beyond the life threatening diseases (which of course include cancer) it also ages you rapidly as research has shown that telomere shortening is more rapid under conditions of chronic stress. Stress can change our cells, making us age faster.

No amount of botox will fix that, but I’m sure I will try. 

So I start a new narrative that I hope will help others. I wonder if other cancer moms got this? Have yet to find that narrative. Maybe if they do they don’t write about it out of shame.

I get that.

This is harder for some reason. A harder narrative to share.

Body

Body.

I’ve never really considered my relationship with my body. Or rather I’ve never really even thought of my body beyond the immediate “ow” after a stubbed toe or the mirror glance where I pinch the fat. That has been my entire relationship with my body. Not a negative one, but one of more indifference.

I know people have complicated relationships with their body, but I never gave it more than a negative glance or an “ow” before moving on with the day. The brain, that I spent time on. That I was obsessed with, especially with how it learns, but the vehicle that stored it, was just along for the ride. 

Until it stopped riding.

I wake up in pain. I am a good foot away from touching my toes. Every step my body recoils. Tightness everywhere. Even a soft touch to my neck burns, everything tender. And you know I have not been working out. I haven’t pulled anything and no toe has been stubbed. 

I had no idea that the body can turn on you like this. My mind is totally fine. I’m not depressed, but the anxiety in my body is very real.

So hello body.

Turns out you are something to consider now and then.

As you can turn quickly.

Headbands

Yes, I’m a hypocrite. 

I am an adult wearing a headband. 

I succumbed. 

I know I made fun of you. I did. And here I am, wearing a headband.

It really was just a way to deal with my hair that I can’t muster the energy to put effort into and living at sea is not Jew fro friendly so I decided to try this thing out. And then I realized something else. It gave me a terrible throbbing headache. It was wonderful. I know a strange thing to say. But it was this throbbing pain that made me feel one with my body and it distracted me from the anxiety.

It was welcomed pain.

So headbands it is. I am a 40 year old woman wearing a headband. 

But I had a good day!

Physics

Physics. Let’s talk Physics. 

The First Law of Thermodynamics (Conservation) states that energy is always conserved, it cannot be created or destroyed. In essence, energy can be converted from one form into another, but it never disappears. 

Energy is important concept in learning about trauma. Physics is at play here. Or at least I think it is.

When you are threatened your body instinctively generates energy (a whole lot of it)  to help defend against the perceived threat (ex: fight or flight reflex). This surge of energy explains the superhuman strength people report when in dire situations. Interested in these stories: Go Here, there are CRAZY stories of energy explosions.  But when the threat doesn’t have a car or a hole to jump over or any action to resolve, it just sits. And it sits in your nervous system. Your nervous system now has stored explosive energy with nowhere to go. Mine has over a year and a half of trauma energy and there were no cars to lift, no cliffs to jump, no “run for your life” type of movement required. If anything my trauma required “sitting.” Sitting for days and nights in a hospital.

And remember the first law of thermodynamics! Energy cannot be destroyed and there has been no transfer. So there is energy trapped. Inside you/me.

So when trama is labeled as a primary physiological issue (note: not psychological), it makes sense. There is literally an energy in your body that is not naturally there.  Trauma living in the body. The energy still coursing through your veins.  Of course, it will affect your mind and emotions, but it lives in the body, that is the source. This explains the weight. The weight and the issue with my breathing. My mind is totally here. It’s my body that is elsewhere. Captive to this trapped energy.

And we know that this is real.

Science has loads of examples. We see it in other species. Watch the video below. You will see the impala “play dead,” when caught by a predator, but really this is an “immobility response” to protect it. The impala looks frozen, however, it is anything but frozen. The body is pumping like mad to keep that frozen state. The body is in terror, and therefore, it is creating a firestorm of energy. Now watch the video (its literally 1 min and 52 seconds- you got this time).

Did you see that crazy weird shaking thing the impala does BEFORE it runs off?! You may have been screaming into the computer “run impala run! Stop doing whatever that is and get the hell out of there. Do you have a death wish?! RUN IMPALA RUN” However, this happens every time. That crazy dance is the energy. All the energy being released. All the synapses of fear firing now being released. It isn’t the most graceful thing, but its involuntary. The impala cannot function until all of the energy has been transferred. And then it just leaps away. 

I want to leap away. 

So that is where I begin. Physics. I have energy to transfer. Now I just need to find it and get rid of it. I’m assuming there is some crazy energy storage going on. It has been a year and a half of living each day wondering if it would be someone I love’s last.

In the wise words of Taylor Swift,

Shake it off

Shake it off

Research mode: trauma

I’m back in research mode. I guess that is where I cope. Trying to learn to solve. Trying to get my body under control. I can’t live like this. 

I started with a case study.  There is one right in front of me, Steve Brody. He has experienced the same exact trauma. It’s a data scientist dream, minus the fact that we aren’t twins, but still very promising.

But no. Scratch that. He has not only experienced the trauma of hearing a doctor give your child a death sentence (20% survival rate), but has also been given one himself. He has been told he has stage 4 lung cancer. That survival rate is much lower than even Jacob’s. He has had the trauma of all trauma. He thought he was going to die. But yet he walks around me the same.

I had to learn more. Why is he not having this?! What can I learn?

Steve shared that he is incapbale of having post-traumatic stress.  He can’t have post-traumatic stress, as there is nothing “post.” Jacob is in remission of an incurable disease with a 50-60% relapse rate. So Steve just continues on in the state of FIGHT. He never let his gaurd down. He hasn’t processed anything as he is still very much in it. There is no post. There is only the now and it says “go go go!”

Sigh.

That made me sad. So sad. That didn’t help and made me sad for Steve. My envy disappeared. That doesn’t sound like a way to live either.

But thanks to all of you, I’ve found better research as Steve and I learned we cannot be compared. Too very different beings. I am not a fighter. And my body is making that clear. It is making its own decisions now. Trust me. I wish I could wake up without feeling crippled.

So I am going down a new rabbit hole of reasearch. This time on trauma and healing. I will share what I learn with you all as one thing I’ve discovered through this blog is I am NOT alone. Many of you are trauma survivors yourself. Some of you have had PTSD. I had never heard of PTSD beyond the military. I haven’t bombed a village nor have I witnessed my friend die in front of me in a war, so this is all a very new concept to me. 

But I like new concepts. I like to learn.

And like with everything, I will focus on the science. I know that science will ground me. Learning is where I thrive.  That is the greatest gift one can have and I’m lucky to have the ability to learn anything I want to. And now I WANT to learn how to heal.

Capable to incapacitated. Overnight.

How does one go from a very capable human to a mess?

No, Seriously do you know how?

And if yes, how do you undo it?

I am very capable, I know that in my heart. More capable than most (at least I think). I can problem solve, I drive a boat, I will escape any room, I’m okay talking about most topics (as I can reason my way through them), and I can carry multiple responsibilities. 

And rationally I know, I once worked from 7-7 in a job that was anything but mundane. Never knew what would happen in the day and the chances of sitting for a stretch of 45 minutes straight were rare. It was go go go. And while doing that had two kids, had a pretty active social life, and juggled it all. Sure I was tired, but I oddly thrived. The job matched my energy.

Then I had a child with pediatric cancer. I had a whole new juggling act. And this one was 12AM-12PM type of gig. During this time, I still worked, started writing, and seized any non-hospital days with vengeance attempting to have some sort of family normalcy. Was it easy? No, but did it. I didn’t have to “will” it in any way. Just did it. 

But yet now… I can barely get from point A to point B. I can cry at a drop of a hat. I randomly become so nervous I vomit. WAIT. I know what your thinking. NO. I’m not pregnant. 

It’s so bad that I can become so crazy anxious at any time (nothing! Seriously nothing is happening) and I have to remind myself to breathe. I find myself avoiding my phone like a plague. Scared of even a text or an email. What could it possible say? And now I’m scared of my inbox that keeps piling up, even though I have combed through them to know they are all safe. I even find myself stopping and counting to 4 to ensure I’m breathing. At times I’m not too sure I am. Just got to double-check that now and then.

 If you see me you may not even notice. I do my very best to look okay, but secretly I’m just watching everything and even myself. You may catch me counting to 4, the boys caught doing that  a few times, but other than that, normal. I know because I can oddly see it all unfold. I can see myself. Only 3 to 10 feet away. And I want to scream at her to fix her hair, but I know better, she is not capable of even doing that. Waste of breath that scream would be and there is no way in saving that hair. 

And it’s scary. Like really scary. Feeling so useless and incapacitated. I’m not a fan of this girl. She sucks. She just wants to sleep. She just wants to cry. She is totally incapable. I mean she needs to remember to breathe.

So on that note…anyone have info on this therapy or even better have done it?! Looking for any intel.

Eye Movement Desensitization and Reprocessing Therapy

7.4.2020

The fourth of July. I had big plans for you.

But like everything, life laughed. It had other plans for sure, ones that included a health pandemic. 

But this day was important. 

Last fourth of July, we were given the gift of Jacob being out of the hospital (it was fleeting only 2 days) and were able to see the fireworks as a family. I can still feel the BOOMS as we sat only 100 feet away from the Macy’s 4th of July firework barge in Brooklyn Heights. I remember the sky thundering. It sounded like the end of the world. BOOM. BOOM. I remember Benno recoiling from the sound, but myself leaning deeper into it. Relishing it.

I finally had found a sound that matched the beating of my heart. BOOM BOOM BOOM. And I held Jacob who had just finished his first round of induction chemo in my arms as the world sounded like it was on the brink of the end. It was oddly comforting having the world match my inner workings. BOOM BOOM. Yes. The world is ending. I hear ya.

And then the sky lit up in purple. I’m sure it was a case of perception bias, but at the time I swore that every other firework was purple, not red, not white, not blue, but purple. 

A sea of purple.

Jacob’s favorite color.

And I had hope.

I’ve oddly carried that day with me. I have written about it on occasions. Not wanting to sound crazy I don’t tell exactly what that night meant, but it was this one night that allowed me to make it through the countless other dark, soundless nights (with the exception of the clock). I would picture the 4th of July sky, all lit up in purple. The sign for the universe that Jacob was going to be okay. I kept reading about “love and light.” Maybe this is what that means? God literally sent purple light to tell me something. Telling me that love will win.

And I clung to that for a year. That. I even kept collecting purple things. A purple marker, went with me everywhere. Needing to see that color to remember. The universe spoke. It will all be okay.

So here it was, the big day. I had plans (of course) to thank the universe. To pay it forward.  It was going to be a fundraiser. We were going to light up the sky in purple. We were going to cure Neuroblastoma so no other family would go through this pain. We were going to even plant a flag. A flag declaring the date of a cure. We were going to set a goal. We were declaring victory before we had it. Setting intentions.

Instead, however, in this COVID world, we spent the 4th of July with the closest of friends and a few late-night sparklers. It was quiet. There were no large booms. There was no explosion of purple, trust me I was looking for it. 

But I’m trying not to find meaning or maybe it is just another kind. 

 It was a different sign. A quieter one. One that begs to SLOW down rather than SPEED forward. One that says be kinder to myself. One that will attempt to accept this PTSD thing rather than continuing to fight it. 

And I am going to SLOW down. I am going to stop trying to solve for a bit. Maybe be a bit more selfish. Maybe be a bit less about solving the world’s problems. Seems like an odd sign to get from the universe, but maybe the sign is to focus on my kids and husband and self for a bit.

So thank you Nantucket. We will be back.