Zen and the Weight of Ugh -- A Digression

So: Zen is a path, a moving moment in a spectrum of experience. Zen can’t be forced, it has no endpoint. I can’t control my zen, but I can practice healthy striving towards being my best self. I can use the tools I have learned to keep movin’ right along…

As long as it is a good day.

Let’s just call this The Great Reality Check. Again.

Most folks reading here likely know that in 2004 my then 6 year old daughter was diagnosed with a large brain tumor, secondary to a genetic condition called Neurofibromatosis Type 1.  While I told her story (up to a few years ago) in this blog,  this space was originally meant to be a space for medical free writing. 

Yeah, that has only sort of worked. Context is everything, and brain tumors completely changed the trajectory of our family's life.

For my kid, after one failed chemo a second tumor area appeared. Throw in a third chemo fail a year later and add a third tumor in an even more precarious location.  

G, the week after diagnosis 

and her first surgery

This kind of diagnosis and its concurrent ongoing horrors leave a mark, to say the least. A mark on me, my spouse, my other children, my extended family, my friends…and of course on my child who remained a sparkly smiley diva queen goddess through the awfulness of her suffering. 

Dressed for Chemo Protocol #5, 2012

She never lost her faith. She would wail and express loudly her displeasure (OH SO LOUDLY), but she stayed so positive. For her, we all kept going.

Everything fell apart over two years…and then barely held stable for 5 (many scares)…then fell apart again over another two years…then two other unrelated medical issues in subsequent years…we are talking a decade of really difficult stuff.  Her older brother and younger sister endured a complete upending of their lives, too, over and over. And overall, despite her own fears, my mighty G stayed positive and hopeful.

In the middle of this we found out her younger sibling had medical issues as well—challenges she prefers to tell in her own way, her own time. That is all I will say about that… well, and that she too remains positive and carpe every day-ish about her life. 

I wish I could say the same for everyone in their orbit, starting with me. 

In my old job some colleagues found me “scary” and told me so.  Hearing this hurt. But they were right.  Faced with a life and death battle for my kid, the "don't rock the boat", "avoid conflict at all costs" pre-Ugh version of me ceased to exist.  Life is too short to put up with garbage--especially when my kid's peace and well being were compromised. 

Massive anxiety caused by the general chaos at my old job also made me “scary”.  I desperately needed order, needed SOMETHING to work smoothly, because the weight of G’s Ugh, the chaos it wreaked and the late effects it caused were (and are) omnipresent, even when we were not in the middle of actual medical crisis. 

Stable brain tumors are still brain tumors.  In my kid's head. 

!@^&!(@%!#%

I can’t begin to talk about trying to be more zen without acknowledging the Ugh—because it is always there. Always. No snow days for ugh. Always there.

The weight of ugh is real. And some days, the weight of the ugh that hit our family in 2004 just flattens me. Anxiety and mild depression were my companions BEFORE my child got sick – pediatric oncology didn’t exactly perk things up for my brain. 

So—this is how I see the Weight of Ugh in life. Maybe this is helpful. Maybe not.  I think everyone has something—or at some point you will. I hope not…but life tends to smite. And learning to live in that smite and still keep moving forward has been the work of the last 14+ years here. 

If nothing else, know you are not alone when you are carrying Ugh. The isolation Ugh leaves in its wake is one of its most awful legacies. You are not alone.

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In the beginning, the weight of ugh is everywhere and everything. It crushes the soul. There is only darkness and shock and despair.  In our particular journey, we’ve had a few repeats of this stage of the weight of ugh. 2004... 2005...2006...2008...2011...2012...2016.

This is the stage (at least the first time) where people rally support and love. This is the stage where you really need folks to run interference for you on information sharing, etc. This is the stage where you feel like darkness is swallowing you. Everything is darkness, darkness is everything. "I wake and feel the fell of dark, not day..."

This is the stage where you can taste terror, where you can feel it. Hearing a devastating diagnosis...having a chemo fail...having new tumors show up...having all the tumors grow dramatically instead of shrink while on a trial--in these moments terror's metallic taste fills your throat, and a vise tightens around your chest, your blood pumps hard in your ears. 

Even typing this, I have to take a deep breath.  This is not today, at least not the today when I am typing.

In the second stage of ugh, you start moving as best you can—dragging the horrible weight, barely able to stand under it. In our case this stage was the start chemo/do research/disaster response portion of things…and honestly, stages one and two wavered back and forth a bit. I would just lift the darkness a speck to do mom stuff and then school would call to tell me my kid could no longer see any letters beyond the big E on the eye chart. I could rally my 6 year old for clinic and then find out her chemo failed, tumors grew.  Stages One and Two are a nauseating seesaw back and forth. 

By stage 3, you learn how to balance the Ugh a little and drag it along, but gosh it is heavy, and you strain to get through the days. Time has passed now. Some of the support crew have moved on to other needs and crises, and hopefully you find some other support within the Community of Ugh. You realize at school events or other social things that you are living everyone's worst nightmare, and that gets super awkward, super fast. But you keep going as best you can. You have responsibilities. What choice do you have? Laundry continues to pile up. Kids have to get to baseball practice or ballet. People at your house still want to eat dinner. You keep moving.
                                     
Stage 4—the Ugh is just a part of your day. You can drag it along with you, do what you need to do, but don't forget it. Ugh has changed you. Not necessarily for bad or good, just…changed. We existed between stages 3 and 4 (back and forth) for a long time. This is when I was most scary. Ok, I still am scary if you mess with my kid. She doesn’t have any scary in her, so that is my role. I remain utterly unapologetic about that. Still—in this stage of Ugh, other folks may have moved on or forgotten that you are still dragging this thing behind you. They resent that you aren't the same, or they just move on. You have a new normal. Meh. 

But you know that your people in the Community of Ugh are YOUR PEOPLE. And you are grateful for their strength when you have none, and you can share your strength when THEY are being smote by new Ugh. 

You cannot ever GET OVER the UGH. Like I said a few posts ago, you have to just learn to BE with it. Ugh has become a companion for the road whether you like it (um, no) or not.

THIS IS SO CRITICAL. The Ugh exists as context for EVERYTHING. Every. Single. Thing. All things filter through the lens of whatever catastrophe struck. Just like I can only see my computer because of my Coke-bottle lenses on my glasses...I can only see my days now through the lens of my lived experiences through Ugh. 

And thus we reach Stage 5 of Ugh, when Ugh lingers in the background. You know it’s there. Its shadow is long. But you can live. In our case—we interact with people now who do NOT know our story. Since more than half of my mom life has been consumed by this Ugh, that is pretty amazing. But now that it is in the background, we can leave it there. Cautiously. Alertly. It takes very little--a headache, a wave of dizziness--for us to be on high alert again.

It isn’t gone. It is still always there. THIS is why  zen work is so hard. This is why metanoia, that change of mindset, can be impossible to grasp at some days. Ugh is not an excuse, but  the Ugh is the context for everything

I can't help it, I'm a teacher, I have to repeat the important parts--and in life, even without Ugh, context is everything.

If you are carrying/dragging/keeping a side-eye on Ugh of your own—know you are not alone. 

Everyone has some kind of thing they are carrying—maybe not as big as catastrophic illness, maybe bigger—maybe the loss of someone you loved. People carry chronic illness, mental illness, stress, financial woes, strife in the family or workplace. We are all carrying ugh.

Be gentle with yourself. 

Be gentle with each other. 

Let’s keep movin’ right along together. 

As this is posted, we are en route to the hospital for MRI day, to see if my daughter’s tumors remain stable. Last time we had MRI day I stopped writing altogether for months. This time, as per my sister's advice, I wrote this blog ahead of time, as my mind goes towards our impending hospital trip. Even today, two weeks before our actual trip,  I can only write about ugh. 

And that’s ok. That is real. That is the context of my life long road trip—and I have to just keep practicing being at peace with it so I can keep movin’ right along.

How do you manage through the difficult stages of Ugh in your own life? Would you add any other stages to my 5 part staging of Ugh?

Stay strong, friends. You are not alone.

Zen and History

History is happening—always, right here, right now, you are historying at this very second!—and right now, the history happening seems to be pretty solidly anti-zen.  While I am not in a history classroom of my own these days, I find myself still filtering everything through the lens of history—what has happened before, and what have we learned (or not) from those happenings? And one step further—how do we make sense of the history happening around us, and how do we most appropriately and effectively respond to those happenings?

Our founding fathers were hyper conscious about their place in history, about the legacy of their actions in forging a new sort of government.  You can see this time and again in their writings. We’ve lost some of that today in the glut of media and the reduction of speeches to sound-bytes, in the replacement of thoughtful responses with strident reaction.  A sense of spectacle has displaced a focus on legacy.  Appeals to chaos, fear, and emotion create an environment in which division and anger thrive. Yes, our founding fathers argued and politicked and published nasty articles about each other—and pretty much ignored the founding mothers-- but at the end of the day, they truly believed they were working for a larger good, NOT for their own egos.  They took time to think. To read. To learn. To write. Not just to spew.

I think I can safely posit that we are not in founding father land anymore.

 Being conscious of history we are forging NOW only works if we have a strong foundation of history in the distant and recent past. Recognizing evil in speech and action is easier when we understand this is nothing we have not seen before—the targets of prejudice and discrimination have just changed with each passing decade.  In this context, history seems completely anti-zen – so many bad things have happened, so many people have done terrible things to each other, even in this country I love so much. Responding to dark moments may seem impossible if we cannot look back to those who have stood in the face of darkness before.  History teaches us that bad stuff happens. A lot. And good people in EVERY era of history, without fail, stand up to answer the bad, often at great personal cost. We can make THAT kind of history.

History teaches, but rarely comforts (except to show time and time again that in spite of pretty hideous events and actions, time marches on and the world keeps going).  Progression – not to be confused with progress – is inexorable. History helps us make sense of dark times even as it gives us hope that the dark times are not forever.

The facts of history are set, but the interpretation of those facts is fluid, and if we study history honestly (and without need for self-aggrandizement ala our past) we can fulfill our responsibility to interpret history without erasing the less than flattering parts.  Interpretation takes time. Insta-interpretation is dangerous, reactionary.  History is, beyond anything else, proof that the passage of time is inherently powerful—and that over time the full import of our choices will become clear.

I sense a certain vibe of “um, yeah, and? So what? This is not your normal kind of post.”  I know. Over the last few weeks I’ve been thinking a lot about history and how much I wish people would study it—maybe because I am not teaching it right now (although I have been covering a fair number of history classes in my substituting job).   Nationalism vs. patriotism, the Constitution, patterns of immigration and discrimination in the US (and elsewhere), there are so many things history can teach us about—but we have to go and learn. Learning takes discipline, and work, and a willingness to acknowledge when our own understandings have been limited or flat out wrong.  Knowledge really and truly is power, just sometimes it is a power gained through painful re-evaluation of things we thought we knew.

I love history so much.

I know I can learn from my own history. I can understand my own fears and behaviors and then respond to them in a much more zen like way if I can place them in context, my own historical context.  I was at CHOP last night with one of my kids (routine visit, just weirdly at night), and the smell of the blanket they gave me to keep warm, combined with the darkness outside, put my brain in a pretty bad place—but I understood why. I have too many memories of nights at CHOP, trying to sleep on a sheet that smells like hospital. Knowing this history helped me just breathe through the moment. I could respond, not react. I did not just start rocking back and forth and cursing at the MRI machine. I have done that before, so…yeah. I just took a deep breath, said a little prayer, and opened a Dorothy Sayers mystery to read.  History helped.

Can you imagine if we could do this in our life here in the US? If we could understand civil rights history in our country and thus respond thoughtfully to the concerns of those voters who rationally worry that their voices and votes continue to be suppressed? If we could learn about the Chinese Exclusion Act, or the quotas of the 1920s, or the “No Irish Need Apply” signs in store windows and thus respond with compassion to those people who come from afar in search of a better life like our own ancestors did? If we could look at politicians from not that long ago who worked together and got along despite deep philosophical differences, and we could hold name-calling politicians accountable for rhetoric that reduces our civic discourse to a playground argument?

The tool of history is one of the most versatile and valuable in our civic toolbox. We may not find zen, but if we understand the past, we can more thoughtfully and responsibly approach our future.

Peace to all, and to our country. Now go vote.

Reviewing the Situation

8 years. Sigh. And still  that smile...

Text.
Context.

Subtext.

In the weeks following Miracle Monday, I’ve been sifting through completely foreign feelings and ideas. Good news of that scale has NEVER happened to us in oncology world. Only a few days after the scan, I started waking up with questions about what we had seen, what did it mean, how did this happen?
August has not traditionally been a super awesome month at the Casa Camiolo. G remembered the other day that it should have been her “done with chemo” 6 year anniversary…if um, she hadn’t had to be back on chemo again.

Last year I read a book about teaching history in which the author (Bruce Lesh, “Why Don’t You Just Tell Us The Answer?”) talks about having students DO history instead of just being fed dates and facts and yawnfests of boredom. Primary source analysis is one way that Mr. Lesh suggests that students can DO history, and he suggests 3 handy points to consider.

Read the Text. What does it say? (Diminished mass, decreased mass effect, diminished enhancement. Words that do NOT get old).

What is the Context? What facts surround the writing of this document? (TUMOR FREAKING EVERYWHERE. Eight years of roller coaster, more down than up, except for some shaky kind of horizontal kind of leaning over parts. Ahem).

What is the subtext? What is implied, or what is the tone, what is NOT said but said? (this was so much better…how much is so much, really, in the big picture?).

I realized that we compared the scan to May, which was the baseline for this protocol and which I had heard was essentially identical to the tsunami of woe scan that we had in April. I refused to see the May scan, an epic first and a vague attempt to not completely descend into despair.

So I asked about our subtext, how did this scan look in relation to December, the scan that started us back on chemo? What was it NOT saying?

This scan WAS a bit better than December, our doc remembered that and then we checked together when the girls and I were next in clinic. This is a relief.

I am so grateful, so grateful for this time.

I am also aware of the context of this wondrous news…we are a little better than December…which leaves us still with a massive amount of tumor.

This does not diminish the wonder of that day. I still thank God EVERY DAY for this blessing, this time, this time that equals hope.

I think…I only just started seeing people again, I am getting back towards school and now I am running into folks who have prayed for us for so very long, people who are SO HAPPY for us, and I am so happy too…

Is it weird that I feel like I am misleading people or something by not adding in “we still have massive amounts of tumor?” I don’t want people to be like “whaaaat?” if things turn again, or something. I know, I am a psycho.

I feel like there is a tiny asterisk that accompanies my happy, and that is bugging me, but I know that in truth most folks didn’t really know how bad things were, most folks don’t really know the scope of things, largely because it’s all insanely complicated and depressing and I am ridiculously shy in real life, so I just make sarcastic snarky commentary instead of real conversation.

Knowing that chemo is working is AWESOME…the text! Context…chemo inherently stinks. Subtext…the unsaid…now we can continue doing this chemo. It’s not like G is all better. And I know how Avastin can sometimes work…or not…but today it IS working and I am clinging to that.

So we find ourselves in an interesting spot. The initial intense shock over our good news has passed, leaving behind a gentle almost-optimism (which is near crazy talk for me, I know you all know that). I still have to follow through on a few of my bargaining with God things, but I am glad to say I have continued to try and make healthy choices for me in other areas (ie no more reading the Blog of Insane Lies About Health. This one actually does take some willpower, righteous anger is often preferable to terror over our medical reality. Ahem.) I am making progress, in teeny tiny increments.

People are so happy for us, and I am too. We have time, and time equals hope. That day, August 6, will ALWAYS be Miracle Monday for us. I needed that pep in my step to get through the half marathon we signed up for in 2 weeks for NF Endurance. I needed the cloud to lift a bit so I could try and focus on the courses I’m teaching this year. I am so grateful for this reprieve.

I think I am just a little scared of happy.

Tomorrow is our 8 year mark. And that, all those years, just…everything…that’s context that weighs heavily some days, even as we feel the sun of hope on our faces.

Eight years ago everything in our world changed forever. Everything. And I am so grateful that we still get to fight.  September 1 starts Pediatric Cancer Awareness month. A lot of my friends don't still get to fight, their battle now is to keep going and to cling to the hope that they will be reunited with their children some day.  I am grateful for time, even as happy scares me.

Fear or not… I may not know how to do happy all that well, but I can do grateful.

And grateful can carry us an awfully long way.