To See and Be Seen

           

A favorite song of mine is Mr. Cellophane from the musical Chicago. So much so that I think I’ve quoted it in this blog before.

Cellophane! Mr. Cellophane

Shoulda been my name, Mr. Cellophane

‘cause you can look right through me,

Walk right by me

And never know I’m there.

This song is a lament, not a celebration.

Being invisible hurts.

Ok, so this being a favorite song is maybe more related to my non-existent self-esteem/social anxiety thing that plagued me for years.  Well, that and that it is a great soft shoe number.  I wanted to be a part of things but EVERYTHING WAS TERRIFYING AND I WAS SO AWKWARD. All capital letters awkward.  In social situations words left me completely, and I floundered, sputtering and incoherent.  I remember in high school the boy I liked once asking a friend if I even talked.

My husband would undoubtedly find this question hilarious, based on the word tsunamis he endures when he gets home from work each night.  

Being invisible hurts.

Honestly, I think this is partly why the lack of closure at my old job rankles, that sense of being unseen, unworthy of engagement hurts.

I have been reading a fair amount about people in America who feel invisible, who exist unseen by those with more economic means, educational opportunities, social stability. My heart hurts for how so many Americans feel like cellophane, like something invisible and discardable. 

I have been guilty of not-seeing people when they have hurt me—of using that same disregard as a weapon. I am not proud of these times. Intentionally NOT seeing people is hurtful and there really is no excuse for it. I am sorry for those times.

On the flip side, being SEEN creates profound joy and connection.

My third-born and I trekked up to Maine last week to see my survivor kid on her 21^st birthday. When we entered the camp where she was volunteering, we were overwhelmed by the love, joy, and greetings of friends galore. Hugs, smiles, cheers—it was like we were the long lost travelers returning from dangerous journeys abroad. Like the Grinch, my heart grew three sizes in about the first 10 minutes.

SO MUCH SMILING!

Buoyed, strengthened, flooded with positive emotion and connection—being SEEN just for being THERE in all our goofy glory--not for doing anything or bringing anything or anything other than just BEING THERE-- had a powerful effect on my spirit. It is hard to explain, but the connection and solidarity of being seen made me feel like I could get through another year. I could do the hard things. I could keep going.

I felt heart-full in a way I rarely experience.

What if we could do this for each other all the time? What if we could practice seeing those who are often unseen? The poor, the immigrant, the sick, the elderly, the cashiers, the baristas, the sanitation workers or linemen working in our towns? What if through a little smile and friendly comment we could foster those connections and make people feel SEEN?

What hurts could be healed? What hard things could we all do if we knew we all truly SAW each other, not just the good parts, but the tough parts too? 

             Certainly the folks at Camp have seen me at my neurotic worst (yeah not listing these), at my most vulnerable (Exhibit S for Sorafenib, aka Crazy Crying Lady 2012), at my weirdest (Exhibit O, head banging ORFFAPALOOZA!!).  And yet they do not turn away. They see. They embrace. They celebrate.

I just read Dignity by Chris Arnade, which explores those “unseen” in America. While a bleak sort of book, Arnade does suggest that if we really listened to each other, REALLY saw/heard what those in different parts of American society had to say, maybe we could fix some of the hate swirling around.  I have to agree. Seeing is the first step to connecting, which can grow into solidarity.

I am not sure how to make this happen on a broad scale, especially in the current climate of name-calling, “alternate facts”, and different moral priorities. But I know that on a small scale, I can practice truly SEEING those around me without judgement, without fear, with friendly curiosity and cheerful camaraderie. No cellophane on my watch.  Maybe, just maybe, we can figure out how to move right along with those we have not seen before; and that, I think, will make this world a better place.

Zen and Memory

“MEMORY! All alone in the mooooooonlight! I can smile at the old days….”

I will take “Oversung Karaoke of the 80s for 200, Alex…”

With all of the sturm und drang of the last few weeks, I have been thinking a lot about zen and memory. I tend to think about memory a lot, for my entire life I have been intrigued by the history of things, the memory I can feel in different places. I know that sounds a bit wooooooo, but I do.  Kind of in a “the rocks cry out” sort of way. Places hold memories as much as people do, and if you know their stories, you can feel those memories of place.  No wonder I became a history teacher. But THAT is another story for another time.

Memory can feed and nurture zen. I remember visiting my great grandparents in Western Kentucky—the smell of Grandma’s house (often a lovely bacon-y smell, she made us bacon every day for breakfast, a rare treat), the heat of the sun in her backyard against the cold water from the hose that we used to fill up an old metal basin to play in, the comfy chair where Grandpa spent his days. Even the ughulous  parts of those trips are not bad memories, even though I joke about them—the epic van breakdowns in New Stanton, PA, Zainesville, OH, Bruceton Mills, WV, the scary hotel situation where mom unleashed her Jersey on the staff while dad was packing the car. ;)

 I remember childhood church-ish picnics where my mom would bring cold chicken and green grapes and we would sit in the sun and have fun activities with other families.  I remember playing elaborate games of time machine in our backyard apple tree. Memories of my childhood home, of Christmas traditions, of love and family feed my zen when I remember to revisit them.

But what if you can’t smile at the old days? What if those memories are BAD?

My son has told me in the past that he does not remember much of his life before he was 10.  He said it sort of nonchalantly one day, and it took my breath away…since those years were full of t-ball and playgroup and homemade Halloween costumes and the Yankees winning an awful lot in the fall—good, zen-feeding things.  But when my son turned 9, his 6 year old sister was diagnosed with brain tumors. Everything fell apart.  He does not remember before that.  The bad memories clouded the good.

Bad memories have a way of sticking around. Not every single detail—but the worst moments are branded into our consciousness somehow.

14 years later, I can now remember and talk about the early days after my G’s diagnosis without weeping. Even THAT took years. Those memories are excruciating, and certain moments are seared into my mind.  The first two years after diagnosis were brutal.  Now my memories can sometimes help people (G failed so many protocols, we have a lot of experiences of different drugs we can share—without the emotional turmoil and terror each failed protocol produced).  The 5 years AFTER the first rounds of treatment were pockmarked with small progressions, scares, and the ever present threat of an immediate resumption of treatment.

Memories are hard sometimes. The “old days” were not always beautiful.

My Rosie asked me yesterday if she used to be super happy when her siblings came home from school. She saw some of our neighbors’ kids running out to greet their siblings, and thought it was so cute. “Did I do that, Mom?” she asked.

I couldn’t remember.  I Could. Not. Remember. I realized…Rosie was 2 when G got sick. G was on treatment during the whole time R would have been the little sibling at home. I don’t remember.

I hate not remembering almost as much as sometimes I hate remembering.

I have no great answer for what to do with difficult memories. Denying them is not healthy, nor is wallowing in them—although honestly, sometimes that just happens, they rise up like a blob and encompass me. This is what happens the day after scan days—I have to dig out of the morass of memory that rises up when we return to the hospital, we look at the brain tumors (which are all still there). 

Often I do that by writing. If I can put those dark thoughts/rememberings into the light, they lose some of their power…not right away, usually, but eventually.  And every time a new ugh memory pops up (that happened this week when a friend shared struggles her child was having in school—struggles that reminded me of some of the cruelty my own child faced in her middle school years), I try to give it light and then keep moving forward---not without the memory, but in control of the memory.  Sometimes I can use those memories to help others. That is empowering, too.

For all those women and men who are publicly dealing with difficult memories right now—stay strong. You are stronger than your memories. Unlocking dark memories and forcing them into the light gives YOU the power, not the memory.  Stand strong in your truth, and your memories become part of your power. Your memories and courage are helping others.

And I truly believe that in truth and power we find healing, and in healing we find zen. Memories are powerful, but they are OURS. We are not theirs. Working through memories is such a hard work – for me, especially with certain things (er, most things) related to my daughter, I still have so much work to do.  But once the memories are out in the sun, they cease to fester and poison my brain.

For all those brave, brave people forcing your memories into the sun…I salute you. And hey, maybe Andrew Lloyd Webber had it right…

Daylight! I must wait for the sunrise!

I must think of a new life…and I mustn’t give in.

When the dawn comes tonight will be a memory too….

LOOK, a new day has begun!

Great Expectations

Great Expectations.

Is the worst book EVER, so don’t worry, I am not going to blog about that.

(Since I was long ago an English major, I can diss major works of literature with impunity, no worries!)

I have been pondering expectations. Maybe that’s an inaccurate way to say it. I have more been realizing that some expectations will never come to fruition (my 18th century farmhouse in the country), some are in jeopardy (will not speak of those here), some are worth fighting for (my history students CAN do what I expect them to do! They are awesome! So…Yeah!) , and some just have to be set free (my paperwork will NEVER be organized. It just won’t. Get over it, self).

Expectations can be empowering or paralyzing, and this is sort of what I’ve been pondering. I had a throw down with someone recently about expectations, mine are high, this person’s are low, and our expectations seem to spill over into every area of our parallel experiences. My high expectations shape my behavior, the ol’ “I believe I can fly….I believe I can touch the skyyyyyyyhiiiiiiigh” (I am so sorry for those of you who will now be singing this all day). I feel energized by high expectations. I feel like a ninja (which is only natural, since of course I am a ninja in heels every day from 9-12:15). I almost feel…optimistic! Sorry-I should have warned you to sit before I threw THAT idea at you. ; ) The person I was conversing with has very low expectations, and that is reflected in their approach to everything, it’s contagious and sad.

I came out of this conversation really bothered. Expectations have a ridiculous amount of power.

I know the month BEFORE we started chemotherapy, expectations were killing us. My poor 13 year old was a wreck of anxiety and dread. I was about the same. The fear of the unknown made us expect the worst. This was paralyzing to both of us, and by extension made things kind of stinky for everyone who lives in this house. Even Santa was bummed out by December at the Casa Camiolo.

Actually starting chemo was a relief. The expectation was worse than reality, even if we have to now admit that even “easy” chemo like Sorafenib rots.

As we cruise towards scan day in 10 days, I am trying to keep my expectations at bay. Generally my expectation of what April 5 will bring keeps me up past midnight and wakes me at 5 a.m.. Who knew expectations have claws that clutch at your insides when your insides really, really want to be sleeping?

We’ve had about 30 of these days before, closer to 40 if you throw in kid #2s forays into the Siemens Magnetom. Many of them have been ok in context, ye olde “stable, with some areas we need to keep an eye on”. A very few have been actually good: “rock solid stable!”. An extremely memorable handful have been trainwrecks of woe—“tumors have grown”…”malignant transformation”…”chemo failure”…”new tumor”. So my expectation are certainly tempered by experience. And I just can’t expect that these 6 pills a day are actually working. That seems presumptuous, somehow. I mean come ON, we are the Camiolos, Harbingers of Smite.

Call it defensive pessimism, call it glass half empty, call it negativity, call it Kristin (or half a dozen other girl names, with 6 sisters I answer to most names), but that’s kind of how it is.

At the same time, I have to be a ninja for my G. And she doesn’t think she has such a bad case of NF. She actually SAID “I don’t have such a bad case of NF” a few days ago…!!! That blew my mind. In her mind, life is what it is, her feet hurt from chemo, she is so very tired, can she have some pretzels, and did Scotty McCreery or Matthew West come out with a new album yet?

And that expectation, that there ARE folks worse off than she is, and her favorite singers will keep on singing…that gives HER power. How could a child go through what G has gone through over the last almost 8 years and NOT be swallowed by despair?
If I can carry that for her, I am glad to be useful as well as ornamental.

I don’t know what to expect next week. Right now my expectation is kind of whomping me. But I also have a secret plan for what I will do if my expectations prove wrong…

It’s big. And it involves God’s greatest natural resource…

Stay tuned.

(because once again I have a delusional expectation of blogging more often, I have to do something with all the stuff that races through my head when I can’t sleep. Thank you, Captain Insomnia!). ; )

I am not Aretha Franklin. Sigh.

I am not Aretha Franklin.

Yeah, it’s a newsflash to me, too.

You see, I always, always have said that I was going to BE Aretha Franklin when I grew up.

Today I hit an age where there is no question, I am Grown Up. There is also no question that I am NOT Aretha Franklin.

Realistically, I knew that I would not magically turn into the Queen of Soul. I think I just hoped I’d get that finger wagging, slippers wearing power of Aretha in the Blues Brothers, so I could say unto the world, “You Better THINK About What You’re Trying to Do to Me”. I think I really wanted confidence and attitude and yes, a set of pipes that makes the rafters shake.

I am not Aretha Franklin.

I still can’t sing, I stood up for myself last week and had someone get all up in my timid, non-confrontational face and try to jump down my throat, and I am literally about half the woman Aretha is. So I am left, unfortunately, trying rather unsuccessfully to NOT be Eeyore this year. I have long not been a fan of birthdays…pretty much since I turned 15. That was the first birthday where I received the wonderful gift of self-loathing. The crazy thing is, NOTHING BAD happened at that birthday. My mom made a lovely dinner, I had friends over, I have NO CLUE why THAT year was the year everything first hit the fan.

It took me until I hit 35 to finally, FINALLY not be overwhelmed with ugh on my birthday. I was ready to be cheerful and eat cake. Ironically that was the first birthday that I spent the night in a hospital waiting for ambulance transport for my child to the Biggest & Best Children’s Hospital a few hours away. I remember how surreal it was to be listening to jazz on an ambulance radio at 4 a.m. while we drove down the Jersey Turnpike, windows wide open to help my daughter’s temperature go down. That was a memorable birthday. My spouse eventually brought the cake down to the hospital, we were stuck there a week…

My youngest child cannot comprehend WHY Mommy doesn’t love her birthday. Why does Mom NOT want to do anything or mark the day? I wish I had a good answer other than it feels fake to me. I don’t even feel like eating cake. Yeah. It’s like THAT. Eek!

I still wish I was Aretha Franklin. I think on these days that mark the passage of time I just get a bit whomped with the way things are the OTHER 364 days of the year. The last several months have not been a fest of hooray—and as mom/wife, a lot of the reason for that comes back on me.

There’s a song I have been listening to a lot recently, a song that says, “you are more than the choices that you make/you are more than the sum of your past mistakes/ you are more than the problems you create” …I am trying to believe this. But some days, “it don’t take too much IQ to see” what I’ve done to me. Aretha trumps all.

So tomorrow will be the first day of a new decade for me. Tomorrow will be another regular day with work and baseball and rain (and maybe then no baseball) and laundry and vacuuming I don’t get done. Life goes on.

My almost 9 year old is standing next to me, balancing a Hershey Kiss on her face and trying to roll it into her mouth. My spouse stepped in to help the 12 year old with her English homework after I totally lost my temper. Even the teen is trying to not be hideous. My 12th grade class gave me a Boston Crème donut with a candle in it. The third grade girls sang an alarming rendition of Happy Birthday to me that was quite endearing if somewhat painful to the ears. I am grateful for the many blessings I have. …I’m just not a birthday kind of gal. And that’s ok.

And you know, even in the Blues Brothers, Aretha eventually gets left behind. She has to figure it out on her own, I guess, comforted by fried chicken and a Coke. Hm. I could live with THAT.
; )

So here’s to being a grown up. Maybe I can focus on becoming Judi Dench now…


NOTE THE OFFICIAL DISCLAIMER OF TRUTH: This is a No Fishing Zone: I am NOT FISHING. I am not fishing for reassurance and comfort or anything like that. I am just saying it like it is. My bs-ometer was blown off in 2004, and now I just Say Things, which is awful but true. Imagine family holidays: Yikes! Please don’t rush to say nice things, I Know you all, you are nice people, and you will want to. I’m telling you, my brain can’t hear it on May 17. It’s just one of Those Things. So don’t worry. Tomorrow is another day. I have no problem with Leftover Cake. ; )