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.

***********************************************************

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.