Looks can be deceiving

I posted a picture of my family on Facebook. An old high school friend commented how beautiful we were- some variation of winning the genetic lottery. Ha! That’s for sure. Just not the way he meant it. (Thanks VHL!)

We’d just received my mom’s diagnosis days earlier. When that photo was taken we were awaiting a call from her doc. Her illness was the precipitator of the photo itself. My sister in law wanted to be sure my parents had a picture with all their kids and grandkids. It had never happened before.

I read the comment and wanted to say “Oh dearest Joe, looks can be deceiving”.

But I couldn’t say a thing. My mother had yet to share publically that she’d entered into the world of Cancer, joining the ranks of my Dad and me. Looks can be deceiving repeated on loop in my head. We look good on the outside but inside we’re a hot mess. A secret my Dad joked best kept to us.

I kept thinking of all the times in life we look at people and see one thing. But the truth is very different. You think that beautiful couple is happily married but they struggle every day to stay together just for the kids’ sake. He dreams of his ex and she longs for the open road.

And the next time a friend complains about their lacking sex life. I’m simply gonna say “once in 6 years. So, if you’ve had more than that, do shut up.”

I’ve had short hair for nearly 16 years. But have been growing it out since my diagnosis. The curls that everyone in support group assumed was “chemo curls” were simply natural.

I planned to shave my head in solidarity with my mom. After all, I’m the thespian daughter who already owns 6+ wigs. I’m prepared. She refused to allow it.

I shared this little tidbit with a friend who confirmed that indeed I was not allowed. When I inquired why, she said “because then I’d have to accept the reality of you and cancer. In my mind you had cancer”, she continued “but now you don’t.” I couldn’t shake the look on her face. The horror I feel daily, that I and cancer are inexplicably linked.

My dearest BFH confirmed “Looking at you, no one would have a clue what you’re really holding up. What you deal with on a daily basis”. This is unbelievably true. Even living it it’s hard to accept.

I’m a walking example of when it rains it pours. I’m not sure there are many people that can say THEY and both their parents are dealing concurrently with cancer. They have spinal cord damage. They are embroiled in a legal hornet’s nest. And these are just a few highlights.

Sometimes I try to forget. Cull myself down to the smallest increment of time, second by second, and deal with only what is immediately before me. Let the rest fall away.

I’ve always struggled with the gap between the internal and external. At one of the darkest points in life, around 13, this hit a pinnacle. I was suffering emotionally. And felt unable to share what I’d been through. I felt broken and needed to be held, told I was loveable. My continued silence sent me into a dark spiral.

One afternoon I set to rebalance the inequity. I placed my arm across my bathtub and using a heavy book tried to break it. I remember thinking now I will look the way I feel. Thank goodness the radius and ulna were stronger than me. I know the feeling of being bruised inside.

———-

Over the years I have developed a very dark sense of humor. This vital coping mechanism nearly landed me in the Psych ward during my hospital stay. Only a select few can join me.

“How goes it today?”

“I can feel the wind on my toes as they dangle the ledge.”

“Oh no you don’t, not without me!”

15_0615 Text message

“You had an ovarian cyst rupture and got in a car accident. It’ll be fine.”

“You’ve got 20 coming for thanksgiving dinner and the twins pulled the oven out of the wall. It’ll be fine.”

“Your husband left you and you found out your pregnant! It’ll be fine.”

———-

Today, one of the blog’s I follow quoted Paulo Coehlo, “If you’re brave enough to say goodbye, life will reward you with a new hello”. Often this true, you have to let go to move on.

But I know intimately that sometimes it is only the echo of your own hello you hear. Inside that space you will meet yourself anew, the good & the bad. If you’re lucky find a warrior, my Valkyrie.

This space, like most, is transitory. Life continues around the wheel. Time is complex, layered.

Occasionally it even returns past friends to the present. Goodbyes become hellos imbued with all the complexities of history.

Recently when you returned I was numb. I was surprised to find I still held some resentment. I wanted you to come directly to me, most definitely not through her, or because of mom. To feel as though it were our relationship that was being repaired, not an extension of the family dynamic.

This is all further compounded by my mother’s cancer. And my father’s for that matter. You are a family friend. Hell, you’re really a family member in many ways. So naturally now would be the time you show up with love and support. I’d want nothing less. But for me all of this is complex.

I cannot begin to convey the weight of my world since my own diagnosis a 1 1/2 ago. And the complicated nature of what I navigate on a daily basis. Right now the mirrors are intense. I have never been so fragile or so strong. My limits are being tested every day. Sometimes I win. Sometimes I drink scotch. 😉

And though WE have sadly let 12 years go by wasted know I still love you too. Always have and always will.

———-
This week my biggest reflection arrived from Deanna Pai in her Cosmo article I Have Cancer…And it sucks.

I too am angry.

I too understand the feeling of playing whack-a-mole because you quickly learn there is no such thing as a clean scan. And my health history has been an adventure in the rare. One surgery followed by the next.

I too have the feeling as though I didn’t actually have “legit” cancer. But understand intimately that stage one cancer with surgical excision can return. I still have a pesky lump in my lung. Could be nothing but…

I too relate to having so many aches and pains you feel like shuffleboard and canasta are you’re only available outlets. I learned bridge. My body belies its age.

And I too know what it feels like to “Mourn the loss of what I thought my whole life would look like.” To not be able to shake the ARE YOU FUCKIN KIDDING ME indignation and the “Gollum” feeling the isolation of “carrying this One Ring to Rule them All by myself”.

The “Why me of cancer” is erroneous. “Cancers are the work of plain bad luck”, sometimes the short end of the genetic straw. But even my mom, the crunchiest, healthiest eater- takes her vitamins, drinks tons of water, exercises regularly, never sick a day in her life has cancer just like my Dad and I. So please do not lecture me about lifestyle or beseech me my glass of scotch.

There’s a very real struggle. Like me, my Dad has never had chemo, or radiation, nor has he had to have surgery-lost an organ- but he still has cancer. My mom now a bald beauty hasn’t had surgery or radiation yet I’ve had to remind my siblings my Dad is no less sick than mom. For the outsider it is a visual thing. Remember Looks Are Deceiving!

“And please don’t tell me to stay positive. Are you an oncologist? ….You don’t have an MD? Then leave me alone…. I am not “surviving” cancer or “battling” cancer or going on some dumbass “cancer journey.”

———-

So again like when I was thirteen I find myself wedged between the internal and external, living shadow cast. Desperately wishing my outside reflected my inside and ever grateful they don’t. The desire to shave my head like the desire to break my arm, balance the inequity in reflection.

Instead I’ll proudly grow out my Goldilocks and maintain my sanity with a tight knit few who truly know. Not the friends with well-meaning optimism but those with bitter sarcasm and gallows humor. And in the meantime BFH & I will write our line of cancer greeting cards.

Outside: I love you enough not to sugar coat shit.
Inside: And Cancer is a big pile of steaming Shit.

Outside: Sorry to hear you have Cancer.
Inside: I promise not to say anything stupid.

Outside: The Big C?!!! I’ve no clue what to say….so
Inside: I’ll talk to you when you’re better.

Outside: I hear you’re terminal. You won’t find prayers or well-intended optimism in this card.
Inside: How about we simply drink to a smooth finish?

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