Tag Archives: cancer life

Not Fine

Dear Whole Wide World,

I’m not fine.

Really, really not-fine. And it seems like our culture is built around a number of fleeting encounters that ask the question, but discourage real answers. Too time-consuming. Too uncomfortable. Too intimate. How am I?

According to the doctor, I’m depressed. Post traumatic stress says one psychologist. Another told me my blood must be pure cortisol at this point.

Which pretty much means I’m a mess. The truth is, it’s been a long time coming. And while we still have nine months of chemo and a pretty sick girl stuck at home this week, this is as close to peace as we’ve had in a long time. Everyone else in the family seems to be doing relatively okay. Which is probably why my body/mind chose now to short circuit.

It’s not what I expected. I’ve got quite a bit of up close and nearby experience with depression and anxiety at this point in my life. I’ve even accrued a substantial resume of grieving for myself, which I’ve always thought of as a close cousin to depression. But seeing and being are vastly different animals.

I told my friend Liz that I knew I was going to break down eventually, and when I did it would be spectacular. I imagined something alarming… cinematic. Michelle Pfieffer in The Deep End of the Ocean when she realizes her baby is missing. Scarlet O’Hara in the face of defeat. Scared Sorority Girl number three.

No dice. I still look pretty much the same. Except my shirt may be inside out and I probably haven’t brushed my hair. Oh, and I wear glasses now, because contacts require effort. I place one foot in front of the other and somehow no one notices. All the screaming is inside my head.

Meanwhile my family gets to see me unravel every day. Playing ‘Pleasant Citizen’ doesn’t work at home; I just don’t have the energy. I crawl back into bed a lot. I hulk out over the smallest problem. My feelings are delicate flowers, wounded by the smallest slight (and I have teenagers, so you can imagine how well that’s going). I can’t fall asleep. I wake up in a panic and run to check if my children are still breathing. I clutch my chest to try and lift this weight off of it. Overwhelmed. At any moment, and sometimes for no reason, completely overwhelmed.

I used to whirl around in a tornado of efficiency – packing lunches and dispensing medications and solving problems. Now I just whirl around and around and around and forget what I’m supposed to be doing. I put the milk in the cupboard. I forget to start the car and am confused when it won’t drive. I need people to repeat things to me several times before they make sense.

I thought depression would be sadder. I still laugh and enjoy things, though nothing is as bright or clear anymore. I’m so touched and grateful that my family is picking up the slack and giving me the constant reassurance I seem to need.

And every once in a while I just feel fine again, confident that the worst is over and I can be myself now… wondering if maybe I’ve been overly dramatic in presenting this to my doctor and counselor. Then I unload the dishwasher and must retreat back to bed for a nap.

So why am I writing an ode to my mental dysfunction for the whole wide world?

Partly as an apology, because as irrational as it may be, I still carry a lot of baggage with me about being selfish and letting people down. I’m trying to figure out where it all came from, but I suspect it’s largely inborn. So, this is me, giving notice that I’m going to be taking care of myself first for a while. Because there’s still a lot riding on Mom, and I can’t take care of them if I’m not a healthy me.

All these months (years, let’s face it) of suppressing my own emotions and needs have been necessary. We’ve done the best we can, and we’ve had SO much wonderful support, but there’s a reason cancer parents have high rates of PTSD. In the face our worst nightmare we put on a brave face, sing a song, make a game of it… anything to make it easier for our babies. And our own trauma gets stuffed way down. Just yesterday I had to bring her in for another blood test. I crawled up into the bed with her, wrapped her in my arms (and legs) and tried to distract her while she cried and struggled and screamed. It was an easier one. She’ll never know how much it kills me inside, because Mom is always calm in the hospital.

I guess I’m also writing because I want the world to know that even though you might see my calm Mom face too, I’m not really okay.

And I’m okay with that.

So, if you ask me how I am, I might give you a polite lie and move on, which is probably easiest on us both. It’s not a social convention I love, but it’s the way things work. I’m getting good at evasive but true answers like “still kicking” or “hanging in there.” Sometimes, probably more often than is socially acceptable, I answer truthfully. “I’m not doing well at all.”

It’s a relief for me. It doesn’t need to be a burden for you. I don’t need to be fixed or saved. I don’t need platitudes or sermons or super-human effort from you (though I know these are coming from a good and generous place inside you). I just need to be seen and heard. “That sucks; I’m sorry” is the best response for me.

Someday you might want to give an honest, but uncomfortable answer too – on those days, I’m your gal. Not Fine is an awful and important part of being human.

 

So here’s me, learning this thing called ‘self compassion’ via counseling, writing, art, meditation, prayer, fresh air, silly tv shows, hot baths, talking, talking, talking, dates with my husband, anti-depressants… and most of all, lying in bed.

 

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An Apple a Day

There are 740 unopened emails in my inbox. I used to blog at least twice a week; this year I’ve posted once, all year. I can’t remember when I last scrubbed my toilet, mostly because I forgot where I keep the toilet brush. I know I have one. Somewhere.

It’s probably not a surprise that I spend an inordinate amount of time staring blankly into space. Thoughts come and go, but the energy to shape and communicate them coherently remains elusive. I have wondered if this is depression. But it seems nothing like the dark heaviness that others have battled through. If anything, I feel emotions more sharply: incandescent joy, crushing sadness and chilling terror – and that’s just a night of Netflix. Don’t get me started on American politics.

There is so much right now. So much everything. And I feel unpeeled.

Which sounds like one of those dire, but vague status updates on Facebook. Obnoxious with its lack of information and obvious in its desire for sympathy. I apologize. Listing my every struggle and concern seems equally distasteful, but it does make me feel better. After all, writing is cheap, accessible therapy for me.

I have teenagers. I have special needs children. I have chemotherapy to administer each night and a marriage to maintain. I have homework from a university course (Spanish) as I inch toward my English degree. I have four children in three schools; two only part-time. I have physiotherapy exercises and pounds to lose. I have meals to make, friends to call, medical appointments and therapy sessions to coordinate, laundry to fold, lunches to pack… all the side effects of a wonderful, overwhelming, messy life.

And the driving. Oh, the driving.

It’s exhausting.

Life is very much right now. Small and urgent and in the moment. It reminds me of our brand new baby days, when my own identity was wrapped in and around the life of another; when ‘survival mode’ became normal.

Last month they wheeled my baby girl out of the operating room after injecting chemo into her spine. As they hooked her up to oxygen, a SAT monitor, a blood pressure cuff… I calmly ate my apple. She isn’t able to eat before a procedure so I’ve learned to snack while she’s getting her lumbar puncture. She has one almost every month.

It used to be a nightmare. I’d cry every time they ushered me out of the room and wait on pins and needles. The oncology nurse looked at me oddly as I crunched away on my snack. There was nowhere to put it down. I considered throwing it out, but it was a particularly good one, crispy and sweet. Ambrosia, my favourite kind. And I was hungry. So instead I shrugged my shoulders and kept chewing. I told her, “I’m pretty sure you can get used to just about anything.”

In the room next to us a mom was crying her heart out. Her child had been diagnosed that day. There seems to be at least one of these each time we visit. The other reason parents might be crying in the oncology department of Childrens Hospital is something I cannot bring myself to consider.

Here I am, in the middle of all this, eating my damn apple.

 Apple a day from Flickr via Wylio© 2012 Patrick McFall, Flickr | CC-BY-SA | via Wylio

So here’s me.


So This Is Forty

I’m waiting. Cursor blinking. Bated breath.

For the epiphany.

The flash of insight that will make this birthday somehow mean more, and less, than I expected.

We’re none of us really grown up on the inside. Being comfortable in your own skin is the best gift of all. These aren’t wrinkles around my eyes, they’re laugh lines, and that makes all the difference. Age is only a meaningless number (also insert ‘weight‘ and ‘income‘ as needed).

Yada, yada, yada… heard it before. Said it before. Sometimes I even mean it.

I’ve always approached birthdays, milestones especially, with intention. That same personality quirk that compels me to contemplate my life and think deep thoughts and talk about it ad naseum to all the world (INFJ). Shouldn’t forty be the same?

I wanted revelation, existential understanding, spiritual discovery… instead I’m slogging through the mire. Literally. The raccoons got in the garbage again last night. B has a viral infection, so there has been plenty of vomit and now the other… I’ve just started yet another load of laundry. After a day and night in hospital the backlog of grimy dishes seems overwhelming. The floor is sticky where I spilled a syringe of morning meds. What clean clothes we have are impressively wrinkled after a week in various baskets.

If that’s not enough to make me cry, our weekend plans, for Glen and I t0 spend two glorious days and a night at Harrison Hot Springs – without kids, are postponed indefinitely. B is home from the hospital on a pass, but we’re expected back this afternoon. She’s too sick to leave right now.

Except.

Except, I don’t feel any need to cry. I really thought I would. My life is somewhat of a shit show these days. I’m tired and feel older than my years. I’m in the worst shape of my life and beyond sleep deprived. None of my plans are working out. None. My life is not my own.

They take pieces of me, these ones that I love. Carving away my time and energy… slice after needy slice. Sometimes I feel like there’s nothing left. Fifteen years of non-stop diapers and accidents and cleaning up someone else’s crap. The worry and the hassles and driving, driving, driving.

*break. I had her tucked up into my bed while I washed the sheets from her own. Now I have yet another load of laundry to do. She’s cleaned up again, but broken hearted that Team Umizoomi is gone from Netflix. She just doesn’t understand. How could you do this to us Netflix? Why? WHY?

Back to my Reason-I’m-Not-Crying-Today. It’s not because I’m some kind of saint. Or ‘so strong’ as some people suggest, which is always embarrassing because I feel like I should explain how ridiculous it is so as not to feel like a phony. Marriage and parenting has made my ability to be petty and selfish and extremely, extremely whiny abundantly clear (see above for proof). Frankly, there’s absolutely nothing wrong with crying when life is hard. It’s a healthy and necessary reaction. And there will be crying at some point. I have no doubt of that.

But right now. Right now, I’m happy. This is a happy birthday.

It has nothing to do with being forty and wise. Or having reached my goals. Or having any thing at all.

My life is not my own. But those I share it with, share their lives with me too.

This morning they tried to let me sleep in. Twice the boy snuck away and tried to climb into bed with me. “I missed you so much Mommy” he’d yell (the inside voice/outside voice lesson isn’t really sticking). When it was time, he snuggled up beside me, then on top of me, then kissed what parts of my face he could reach. His gift: that I am his favourite person in the world and I will never run out of hugs and kisses.

B made a unique and sparkly necklace at school. She likes to point out every single colour of every single bead over and over again. She’s absolutely tickled that I wore it today. Every once in awhile today she gasps and says “happy birthday Mama!” – each time as if she’s realizing for the first time and is blown away by the magic of it. I know from experience that this will carry on for several months. Her gift: that I am celebrated with genuine enthusiasm, that everything I do matters and I will never, never go out of style.

My teens made me beautiful gifts also. The kind of art that I appreciate for its own sake, as they have grown in creativity. From L, a painting that represents each family member, symbols we’ve talked about before. From C, a beautiful and insightful sketch of her sister – putting her fight with cancer, her imagination and her dreams of the future all into one image. From both, a ‘flower’ arrangement made out of my favourite candy. Their gift: that I am heard, that I am a small part of the people they’re becoming and the ways in which they’ll make the world better.

My husband gave me a gift that was a true surprise. It’ll cost him more in worry and stress than in funds. He remembered my futile (I thought) longing to try para-gliding and has put the plan into motion. His gift: that I am known and understood, that there are always adventures ahead and someone who’ll hold my purse for me.

What’s more, I have birthday wishes from amazing family/friends and virtual strangers and everyone in between.

As I sat down to write this, a friend texted me a picture – she had her baby. Today! A sweet, tiny little human, with her whole life ahead of her.

Baby girl – you can count your age in hours, while I have forty whole years under my belt, but we have a lot in common. All the stuff that really matters.

It’s terribly hard work being born. And sometimes, it’s terribly hard work living life. But we are surrounded by people who love us fiercely. We have a world of opportunities ahead of us. There are so many things to learn and experience; mistakes to be made, for sure, but masterpieces to create and friendships to build as well.

Old people like me make it all so horribly complicated. It doesn’t need to be… Love. Be loved. Enjoy a nap when you can.

There’s a chill in the air, the first taste of winter, and it’s raining outside. It’s a good day to be alive. It’s a good day because we’re alive.

Happy birthday!

 


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