The only comment I get more than ‘If there is anything I can do to help?’ is ‘I don’t know how you do ‘it’.
People often tell me how they don’t think they could do what I do and comment on how strong I am.
They tell me how if it were their child who was sick they would be emotional wrecks and simply couldn’t cope.
“God, I’d be SUCH a mess…. I DON’T know how you function….I DON’T think I could do it…” (and yes all the capitalized words are emphasized in conversation)
I hear these words over and over again from very well intentioned folk.
I think people choose words with the intention of giving credit and acknowledgement for the courage, capacity and strength it takes to care for a sick child.
But when it is worded like this, it makes me feel even more disconnected from the ‘normal’ people and the ‘normal’ world around me.
I usually walk away a little miffed and my irritated condescending inner voice kicks in.
“Yup, I guess you’d be an emotional basket case and I’m not because you love your kid more than me….” (insert 🙄)
I know this absolutely isn’t true. I get it, most of us associate dramatic emotion with deep love.
But honestly, what most people don’t understand is how the trauma and terror of cancer subsides.
I mean, I know our situation is shit but I have also come to know how once unfathomable things easily become a part of daily life and reality.
‘Gloved up’ and giving chemo on the fly.
When people share how they could never do what I do, my reply is always the same “I really have no choice but to be strong and FYI you could do it too if you had to.”
I smile half-heartedly hoping they feel their words gave me some comfort and walk away after the awkward hug that almost always follows with a slight eye twitch.
“Nobody ‘gets’ me. Nobody ‘gets’ this.
Nobody knows what to say. Let it go Jenny….
Practice the 4 f’ing agreements. You know better, for god sakes, than to take anything personally…”
The other day I got a message from one of my India tribe members. She wanted to see how I was doing and rather than letting me BS my way through our exchange, she asked me a question.
“Tell me, how you are coping?” She asked. “What do you do to take care of yourself?”
It really got me thinking….
How the hell do I cope?
Why is it that I am not falling apart all the time? (Is there something wrong with me?)
Should I be I be concerned that I have become so exposed to shitty and hard situations that I don’t ‘feel’ anything anymore? Am I emotionally detached?
I do love wine and I joke about drinking too much but really, why have I not tipped over the edge and numbed myself into needing a sponsor?
I was deep in thought about it all while sitting in the oncology clinic waiting for Logan to get blood when it hit me.
The Canuck Place people had come to see a family we were sharing a room with and as I watched the two ladies approach the door my stomach lurched.
Logan has been doing pretty crappy for the past few weeks. She has new symptoms and because we lowered the dose of chemo of course we worry her tumour is growing.
We have been dodging our orientation into their program like a flying bullet. Juliette (our oncologist) wants us to utilize their resources. I was sure she sent them to see us.
As they approached the door I grabbed my cel phone to aimlessly scroll and avoid eye contact.
“I am going to lose my shit on Dr.Hukin for this….Oh, fuck, things ARE getting worse…..The tumour IS growing.” My thoughts immediately spiralled into panic mode.
When I finally worked up the courage to look up, the Canuck Place ladies flashed me an uncomfortable smile then panned over to the family sitting next to us and asked for privacy.
Immediately my stomached plummeted into deep and painful knots and I literally bolted.
The very first thought I had as I gave a look of compassion to the mom I left behind in the teen room was…
“I don’t know how you do it…..”
Fuck me.
How can I possibly loathe when people say these words to me yet the exact same words come to mind in uncomfortable situations?
I pondered this epiphany as I sat outside the door.
Compassion is such a complicated process.
It is so much easier to say “I don’t think I could cope with what you are coping with or I’d be a total mess ” and deflect the conversation than it is to feel the deep pain and emotion for someone else and be compassionate and empathetic and truthful.
Compassion is what we want to show others but is so fucking hard to do because it takes a lot of courage and vulnerability and to be honest most of us have never been taught how to be open. We don’t want to face the shitty parts of life or get thrown in the trenches.
For most of us, life is just too busy and stressful and it is hard enough to try to stay happy and content in our own worlds.
I get it.
But the truth is….
Shitty, hard things are always going to be a huge part of life and the more we avoid them the less connected, engaged and whole we feel in every aspect of life.
As I sat outside the door and waited for the hospice people to leave I felt the familiar feeling of the walls closing in on me. I felt the cries of the kids in the clinic piercing through my bones. I felt the tension of the parents bickering and the stress coming off the nurses who were trying to ‘help’ although they know all they are doing is ‘hurting’.
It all hit me like a ton of bricks.
We cope (or at least I do) most of the time by not letting myself ‘go there’
Denial.
Yep, the first step in the process of grief is personally where I chose to vibrate the most.
And I’m not talking about walking around with my head in the clouds like my kid doesn’t have cancer, but instead just chunking things down into the moment.
No big picture over here….
No looking too far ahead or thinking about all we’ve been though because it’s too fucking intense and when I do, I can’t breathe.
Anxiety comes on so strong, it is literally painful.
So, I just put one foot in front of the other and try to stay in the moment, every day.
Because I am not processing much around me, I also find I have very little focus and rarely remember much. Sorry in advance if you’ve had to remind me about something 27 times.
I’m not trying to be an asshole. I’m just coping 😉
I also cope by joking about things that are too heavy to actually face. It’s probably why I’m not clicking with the Canuck Place people- they are WAY too serious and quite frankly I’m not ready to go there yet.
Listen, I know none of this is funny but sometimes I feel like the only choice I have is to either to laugh or to cry.
I know you don’t always ‘get’ my humour and you don’t know how to take me. It’s ok- just know if I chose the latter emotion our interactions would likely be far more awkward than my stupid jokes about my bald kid.
Give it to me…
Oh and it’s ok to laugh with me….my inappropriateness is not contagious 😉
I cope by planning adventure.
Putting things on the calendar (planning a trip around the world) and keeping busy gives all four of us a sense purpose.
You might think it is absurd to learn how to change my kids feeding tube and talk about getting a five hundred dollar MRI in Ethiopia but this is OUR jam.
It is what we want to do.
Have experience and fun. Period.
We want to feel alive and do cool shit. We want to plan adventures and spend our time together daydreaming about those very adventures. The trips we’ve collectively taken to over 20 countries since Loggie has been diagnosed has been the very thread that has kept us going.
Seeing the world for all that it is- beauty and struggle- gives us hope. Getting lost together so we can find ourselves and reconnect outside of the bullshit has been the best thing we’ve ever done.
What makes my heart the most full. Traveling with these beauties!
It’s not for everyone and it’s not about running away from our problems. (Ok maybe it is, a little bit 🙄)
But it is NOT a bucket list.
We are not an race to check off seeing the Eiffel Tower or the pyramids in Egypt. Instead, we want to saunter around seeing the beauty in this world and feel alive.
Really, our circumstances have been difficult but we know life and humanity and the world as a whole is not terrible. It is amazing and awesome and here for us to experience and enjoy.
Throwing in the towel, blowing money we should be saving, quitting jobs and selling our stuff to traveling the world is our own version of a ‘fuckit’ list.
To you, it might not seem smart or responsible or right but again… that is why it we call it a ‘fuckit’ list.
I believe it will all work out. It’s only money we’ve been through much worse than being broke- although we have been that too. 😉 💰
Travel has also been a good form of bribing Logan.
“Get up and get moving and start feeling better or you aren’t coming to Mexico.” The fear of missing out always gets her out of bed.
Plus, she is also pretty wise.
“Mom, you work so hard to save my life. You have to let me live it.❤️” is what she tells me every time I suggest we stay home.
Sometimes, my coping skills suck and I scream and holler and vacuum the road outside my house. Sometimes all I desperately want to do is run away or punch someone in the face. Sometimes I don’t answer my phone and I avoid situations that I know will piss me off. Sometimes I say mean things to the people I love. Let’s be honest, sometimes, I do drink too much wine.
I am human.
I am broken and I am truly so fucking afraid every single day of my life.
But I guess I stay ‘strong’ mostly, and simply because I want to. Falling apart and being sad and angry all the time takes a shit load of effort and far too much energy.
Strong is a choice. I work at it because I don’t want to fall apart. I have done the whole falling apart thing. I’ve numbed myself with medication and distraction and learned that buried hurt doesn’t really ever go away.
It always catches up with you.
You have to face it.
You have a choice. I choose to sift through the shit and look for the goodness.
Life really can be good despite the bogus dirtbag crap that cancer brings.
There is good all around us and when you look for it and you decide to do things and migrate towards situations and people that make you feel happy and comforted the less power the cancer has.
Your own personal energy is like a fucking magnet. When you get stuck in feeling shitty and you attract shit. You wake up each day and say “I’ve got this” or “You are doing a great job” even when you don’t believe it, you start the flow of energy and change.
Sometimes, you have to use the negative emotion inside you to elevate you into positive action.
I was so pissed off at cancer for so long I finally got mad enough to put it in its place.
Cancer is a part of our life, but it is NOT our life and it needs to know where it belongs.
I am not saying this to inspire anyone by my profound strength (insert eye roll 🙄) but rather to explain.
A. You wouldn’t be a mess- all the time- if your kid was sick. (Just some of the time 😉)
And
B. It is a process- all of it.
Life is a process and we get better at things with time and experience.
Sadly, I am better at cancer ‘momming’ than you.
Simply, for one reason and one reason only…
I’ve got a kid with cancer and you don’t.
