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.

Normalcy is not a 4 letter Word

So I find it vaguely ironic that when trying to write about normalcy, my computer crashes and the long post is utterly sucked into a cyber void of some kind. Normal life…ergh. My motivation to try and remember what I said also got sucked into said void…alas.

But here, in what may be a final installment of What Not To Say, is a condensed, rewritten note about “Normalcy is not a 4 Letter Word”. It’s a little rough, but I have to post something. So…here goes. And this one is dedicated to all my friends who can hear my yikes and acknowledge that it rots, and then share their lives with me, too….

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So often I have heard, after a friend starts to tell me about a child with the stomach bug or a tough time at work…

“I shouldn’t complain, I know this is nothing compared to what you are going through.”

THIS is a what not to say.

Ok, so in terms of cosmic giganticness, kid with brain tumor might trump kid with ear infection in terms of where each fall on the yikesometer. I know, our reality rots. But that doesn’t mean your tough times don’t count! Please, normalcy is not a 4 letter word.

Seriously, count the letters. There are 8.

But what I mean to say is that everyone has stress. Everyone has tough times, times that challenge us and make us want to hide under the bed. The disclaimer that your yikes isn’t as bad as a parent’s with a catastrophically ill child is kindly meant, but depressing. It’s ok. We KNOW you feel bad. We know that you feel bad about having even a hint of “there but for the grace of God…” thought when you see us. Honestly, at different points in this journey I think most parents have that thought when talking to parents further down the scary road. It’s ok. We understand. Please don’t negate your own challenges just because they seem somehow less yikes than ours…it is so sad and isolating and ugh.

Years ago we had a really difficult season here. I was at the doctor’s office with my baby every single week for about 4 months. I had to juggle various distasteful medicines (well, juggle them into a reluctant 18 month old), learn how to use unfamiliar medical equipment on said kid multiple times a day, manage food shopping and cleaning and laundry (said 18 month old generated a lot of laundry) and generally still do everything even though my baby went from one sickness to the next all winter long. It was brutal. I felt beaten down, discouraged, and exhausted.

And this was the only child in this house who does NOT have a brain tumor. Go figure. And at that point he was still an only child! Still, this yikes flattened me. Every life has stress, and we do what we have to do. Getting to be there for each other is part of what makes OUR horror more bearable.

Let me explain…

Sharing your normalcy with me makes me feel …better? Useful? I’m not even sure the right word. But just as parents in our position hope that at the end of the day we still have friends around who can support us (and alas, so many are gone now, which is more my fault than anyone else’s)…we hope to be able to BE supportive friends. Part of that is being able to support you in your normalcy. Sharing the normal ups and downs of life with us helps, it really does…

I used to have a friend who would occasionally call when my daughter was in the worst parts of her treatment, this friend would call just to share some funny story or weird anecdote…because he understood that while the pain was always with us, a funny story bridged the gap between pain and hope. Normalcy was healing.

At the end of the day, we all HOPE to get back to normalcy. I am starting to accept that we never will get back to normal normalcy (ok, I am not accepting that WELL, but I am starting to choke it down. Hey, it’s only been 7.5 years, give me time!) , but we do hope for that. Hearing about normal life stuff is almost refreshing.

Speaking for me, I feel like a friend trusts me if they can say, “Sally will only eat pasta and I am losing my mind”. Is that a huge deal? YES! It certainly was for me years ago, in our time B.T. (before tumors)…my picky eaters and my strong willed child drove me to distraction. Even today, the travails of my teen often cause me massively more anxiety than dealing with my child’s horrible illness. And maybe I know a way to help Sally eat more than pasta (ok, I don’t, but really, is pasta that bad?). I can be useful as well as ornamental, and that is so refreshing and delicious and almost empowering.

Normalcy can bring us together. Sharing normal moments builds relationships, and helps friendships survive the catastrophe that threatens any friendship in its path.

Now, I know…there are days where certain kinds of normalcy just kill me, and I have heard this echoed among my bt & nf friends. Days where we are at the store, or a child’s activity, and we hear other parents going on and on about the travesty of little Joey not getting the Lead in the school play, he was DEVASTATED,how can he be Newt # 4 instead of The King of Spring, I am calling the administration, how dare people blah blah blah, especially since Joey is lactose intolerant, how could anyone NOT see that he is so fabulous.

Ok, so my normal response to that is visualization of ninja moves, or some kind of 80s movie-style meltdown with Journey playing in the background. But this is DIFFERENT. I promise, it is.

Overhearing people kvetch about trivialities hurts when you are thinking, gee, I hope we don’t flunk chemo the first week of spring and then have to think about risky neurosurgery or a new more horrifying chemotherapy. I once lost it in a restaurant when I heard a nice family cheerfully talking about a planned trip to Disney…we had been pondering contacting Make a Wish for the same thing, and that just crushed me, the context crushed me. But sharing normal conversation with a friend is DIFFERENT.

This happens a lot when I talk to pregnant people. I ALWAYS ask how a pregnant lady is feeling, pregnancy for me was kind of super not fun. Often I find that people somehow KNOW that my pregnancies were train wrecks of hyper-emesis. With Kid #2 I ended up in the hospital when I hit 102 lbs. Yikes. But my babies are OLD. I am over it. Really. I really care a lot about pregnant ladies, I have great empathy for anyone carrying a new life within them…but so often, I hear, “I feel queasy a lot, but I KNOW that is nothing compared to what you went through…”. BUT I AM NOT COMPARING! Really. It’s not a contest, asking how YOUR life is becomes a way to connect, to express solidarity.

True, some days even bland normalcy makes me bite people’s heads off, which is totally unfair. I hate that I am the wicked witch of the east sans stripy socks. I just don’t care about political primaries in other states, or how green beans might save the universe if we only believe hard enough, or that reality TV makes you a sociopath. While it’s normal to have an opinion about those things, I just don’t give a flying wahoozie. I wish I could. Right now, I can’t. I have come to realize that turning Grown Up Age in combination with Kid #2 Relapse has made me a serious menace…sigh. I am sorry.

But again, these are impersonal normalcies. Except the reality TV thing, Project Runway IS my happy place, that is so personal. ; ) Sharing your life means something, it means a lot. So thank you for taking the leap.

In sharing normalcy, there is trust, and back and forth, and an implicit belief that maybe, just maybe the smote will not be in this parallel universe forever. Maybe there will be a day when an ear infection is the worst thing we have to deal with. Gosh, I hope so. And I don’t mean for that hope to disrespect people in the throes of yikes. I hope to support those friends, too.

When we can support each other, life makes more sense. And that is why normalcy is NOT a 4 letter word.

TV Pitch: What Not To Say!

Television Pitch: What Not To Say!

So I had a block of time yesterday to just sit and think, in between snippets of Adele and the jackhammer like sounds of a Siemens Magnetom, and I realized that there might be a niche market for a new show called “What Not To Say!” . I don’t know if Clinton and Stacy from TLC’s What Not To Wear will be available, but I have a couple of fabulous sisters who could likely stand in as hosts. Their job would be to swoop in on unsuspecting people who say ABSOLUTELY THE WRONG THINGS when dealing with catastrophe. They would burst in unannounced, surprising the miscreant mis-speaker, and take them on a whirlwind training of WHAT NOT TO SAY. At the end, the reformed guest will be released back into the wild, er, go home, and be better prepared for the next challenging conversation with someone who is being smote.

I don’t mean people who are just obnoxious: I am talking about situations in which truly, there is NOTHING good to say. Some things really are so big and challenging and yikes, there just are no words to answer the alas—and I think people dealing with a massive crisis appreciate that. It’s almost unfair to think that anyone can have a CLUE about what to say. But sometimes even things that are meant well are just said epically wrong. Some things that truly just shouldn’t be said.

Other families dealing with crisis might take issue with my list. I respect that. This Magnetom inspired collection is reflective of our family experiences and my personal biases. As I go along, if anyone wants to add THEIR input to the list, please do!

So here’s part one of my quick and handy guide for the public, in case my show does not get picked up by TLC. Also included (BONUS!) are things TO say…also based on family experience. Thank you, friends…

First WHAT NOT TO SAY category:

Horror Story! Aka “Who Told You You’re Allowed to Rain on My Parade?”

a. “My Uncle Clem had (insert catastrophe of choice), and oh my gawd, it was horrible! His hair fell out, he couldn’t remember Aunt Tildy’s name, he walked into walls, the medicine turned him purple, and then he DIED. It was awful!”

I have NO IDEA why folks feel like someone dealing with a catastrophe is served by hearing about the Woes of Uncle Clem. If you know someone who died horribly after the same catastrophe your friend is facing, keep it to yourself. Really. It’s not motivational. It’s not a common ground that ANYONE wants to share.

Knowledge is not always power. Sometimes, ignorance really IS bliss, and if Uncle Clem spontaneously combusted while battling what my kid has, I truly don't want to know. That knowledge serves no purpose other than to drive a parent one step closer to insanity...which is a short walk sometimes, mid-battle.

In a similar vein, moms with kids should NEVER tell newly pregnant ladies about their labor horror stories. I don’t. Heck, I try to avoid telling them my pregnancy horror stories. The world needs to be populated. These stories don’t help.

WHAT TO SAY: “Hey, my Uncle Clem battled (insert catastrophe of choice). It was a tough road, but he’s doing great!”

If you have battled THE SAME catastrophe, feel free to share hope! Hope is slippery, and folks mid-battle can always use more experience-based hope.

b. “Well, side effects take a few days to show up"

Yes, there is some bias in this one, since someone said it to my cheerful 13 year old last week as she was bubbling with enthusiasm over successfully starting her new chemotherapy and NOT feeling instantly hideous. Her relief was palpable. This person rained on her parade. I have not yet crossed paths with her, but I will be sure to carry an umbrella.

YOU NEVER NEED TO BE “THE VOICE OF REALITY” FOR SOMEONE BATTLING CATASTROPHIC ILLNESS, ESPECIALLY A CHILD. I assure you, even a kid knows that what they have is serious. They know what reality is, because after your one sentence smackdown of their hope, they have to go live the rest of the days and weeks in the reality they are in. They still have at least 180 doses of that chemo before we even get to check if it’s working. They hang out in oncology clinics. Strangers stick them with needles and poke and prod them and talk about scary things while you are back getting groceries or whatever normal life you have. You do not need to be someone else’s Voice of Truth. Really. That’s why we have doctors and WebMD.

Only kidding, just the doctors part. Ahem.

WHAT TO SAY: “I’m so glad today is a good day for you.” See? That’s not hard, right?
OR: “I’ve heard that hospital is really great”…
”just read that a lot of research is being done in (insert catastrophe of choice)”… again, foster realistic hope!

Stay tuned : More this season, er, week, on What Not To Say:

Merely a Flesh Wound!

I Thank God Almighty I am Holier Than Thou!

And Normalcy is Not a 4 Letter Word