Peace online: one comment

I could write scores of pages on why I hate the whole "fight cancer with hope" thing, but it's still a trigger for me, and I know the vitriol which calls those words from me isn't natural — or at least, I don't want to make it a permanent part of me. So I have avoided blogging about it, and for the most part, I've stopped baiting Lance Armstrong on Twitter.

Cancer burnt Gavin and me, but lying about it and pretending he wasn't mortal were what broke our marriage apart as I prepared to lose him, alone, while he dreamed of miracles.

My feelings about this dance, four years later, overlie and conceal true pain, which I would love to deny, but which I must own if I am to be human.

But I come upon people with cancer, and they're all different: both the cancers and the people. Their string of eternal hope is often visible, and looks so dangerous to me, but I'm not a doctor. My story matters, but I'm a jerk to walk around with a cape that tells people my husband died from it (it doesn't quite say that, but one can imagine). This is true whether they're "internet friends" or "real friends."

These humans with cancer have to manage their lives and their information and their emotions any way they can. I know, because Gavin and I did it nimbly, brilliantly for nearly two years after he received his terminal diagnosis. Real people need hope, and who am I to say how they should receive it or balance it? Who's to even say that Gavin and I did anything "wrong" while lying to ourselves? Just because we got to hospice too late, doesn't mean my intervention, tactless as it usually is, will get someone into the right hands sooner.

But I still bear the weight, and I'm saying it even without a word. And I'm pulled so hard to intervene, to share, to, I wish!, help them avoid my particular doom. It draws me so hard, in fact, that the message is painful to get out, and it's never "right." I'm left stammering, my force gone, sad and unsure with all my triggers set off and the lamest "I'm sorry… how are you doing?" on my once-strident lips.

I was like this when I first met Susan Niebuhr, founder of Mothers with Cancer, at BlogHer09 at Kate Inglis' panel. She saw my mourning/superhero cape, I saw her lymphedema sleeve. We danced without causing each other, I think, any real damage. We were both brave enough to keep in touch; Last year she cheered me on when I announced I'd finally prepared a will.

But I finally did something right in, of all the small things, a blog comment. Susan's doctor gave her some new information, and she asked her readers how to talk it all when she wasn't even sure how she felt about it. (It was a long time ago... did I ever mention I'm a slow blogger?)

For once, for her, my message walked out of me in a loving, non-triggery way. I told my truth without hostility. I tried to account for all her possibilities. I tried to limit my story to the parts I know, the ones I can testify about, and still not lose the parts that I can't prove, like the hurt and fear. I tried to take the shame out of it and hint at what it might be like to be her loving family. I wanted her to know I take her fight — and her choices as a writer — seriously:

Personally, I want to hear you as honest as you can be. The struggle to be brave and positive was extremely oppressive to me when my husband was sick, and we were parenting our infant/toddler.

As a mom, I know there's a balance of hope and courage that's necessary, but I also know that children can handle more feelings than most of us think and often, provide us with new and helpful perspective. They can't do this when we're "putting on a good front," so much, and we wouldn't hear it anyway.

Being honest makes it easier to be calm. There is a calm kind of fear, too.

I'm not your husband, but when I was the wife of a patient taking Nexavar (post clinical trial but pre-market) (Nexavar reduced his tumors 75%+, BTW!), I would have preferred him showing me that I could be honest and share my fears. Instead, we both grew apart showing the wrong face to each other as well as to the world.

Yes, I would say this even if he had lived. I have relived those last months many times and that's when the damage was done: living with the strain of being "brave" and thus, being separate. I absolutely would say this even if he had lived.

As a blogger, I know that what we show isn't always the whole story, and that voice is your choice. Those who connect with you outside will respect your decision, your difference, if you choose that.

YOU ARE LOVED. And I don't feel your story is anywhere NEAR over. 
And then I held my breath. Later that day, Susan responded. 
Thank you. I needed to hear this. And I think I needed to hear this from you. 
And I cried with relief, because I made a difference. For once.


Anonymous said...

I just want you to know - you make a difference for me, and for many other widows who follow your blog and whom you support in so many ways.

Thank you

Supa Dupa Fresh said...

Oh yeah. THANK YOU. :-)

Merry Widow said...

Thank you. My husband and I kept wondering where "faith" ended and "denial" began. We had hope and faith and were busy living right up to the end (hospice for 2 hours) but sometimes I wonder if we did it right. I don't know and it doesn't serve me to rethink our decisions of the past but I do think it is a great thing to occasionally put on that cape of yours and help others know it is ok to prepare for death. Thank you again!

Unknown said...

If by 'for once,' you mean 'once nearly every single day,' then yea. You nailed it.

Artemisia said...

"living with the strain of being "brave" and thus, being separate."

This is so deeply and painfully true, when people are terminally ill, especially, but in other dire situations as well. You did nail it. However useful denial can be, it has a cost long-term.

Do I dare ask how you feel about pink ribbons? (ducking)

carolyn said...

Yes, Supa, all of the above - you help more people than you'll ever know, because you are brave enough to be honest.
Being brave and thus being separate - we were GREAT at that.
Him alone because he thought he'd live, and me alone because I thought he'd die. What a colossal waste of time, like so much of our marriage of made-up individual stories.
I could write pages on all I despise about cancer language. Not least is the notion that dying is losing, and accepting there is no hope for living is giving up. I am struggling with this a lot lately. I have made friends (online) with a couple: husband stage IV same cancer as Jeff, wife w/ very young child asking me for help/advice on how to get through this. And I have no happy ending. It is hard to know what to say. Naturally, I try, but I am not sure how helpful my message of no hope is.

Supa Dupa Fresh said...

Thank you, Merry and Efrvsnt!

Artemisia -- (TOSSING)

Carolyn, I think what I'm so impatient with is that folks will hear it when they are ready to. All we can do is let them know I'm here when they are.
Also, poking. Poking works really great.
OK maybe not.

Susie P said...

Thank you for allowing me to read your post. My husband knew - yet I was in denial. We never talked of it - if only, if only. Even 17 mo later I relive - if only we did - I would have some comfort in what we would have said to eachother. They say time softens the pain - time goes slow.

Supa Dupa Fresh said...

Suzcape, Thank YOU for reading.
One thing I'm learning... is just how long time is.
People who pooh-pooh that time doesn't help haven't waited long enough.
Course, it would be nice to not have to wait till the glaciers melt...


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