photo by Sheri Dixon

Saturday, July 7, 2012

Coming Up For Air...

It's done and up and coming.

When I started posting to about our family's travails with Ward's medical issues, it was just to let people we love and who love us what was going on- maybe why I wasn't there as often as before.

Back around '09 I read through that thread- all 200+ pages of it.

And I thought, "That's not a's a journal."

Then I thought, "I don't even remember half of this stuff happening, it was so stressful at the time and we just went from frying pan to fire and back again like literally damned jumping beans.

Then I thought, "I need to make this into a book."

Not because it's "good", because it's horrifying, mostly. But because this little missive is different from most of the other gabazillions of cancer books out there.

It does NOT end with a dead main character. I hate those. Those "And in the end, he died but he taught us so much about life." Those are bullshit.

It does NOT give all the credit for any good outcome to God. IF there's a god out there, I need to get to heaven just long enough to ask him where the hell he is most of the time- not just because of the physical and mental insults that were piled on my good, gentle husband, but all those other little things- sickness, starvation, wars, pestilence of all manner. Don't give me that crap about "Those are the Devil's doing." God is supposed to be bigger than the Devil- DO SOMETHING, DAMMIT.

So I wrote it and it got read by a number of people who all said the same thing- they couldn't put it down once they started it and they loved the book while hating the subject matter. Some of those people don't even know us and they all said the same things.

But here's the "funny" part.

The book's entries end in 2009. And it ended on sort of a non-ending note. Which was fine, because it elucidates that there really ISN'T and 'end' to this mess- and by 'mess' I mean, of course Life. Till you die. Whatever. You know what I'm trying to say.

The FUNNY part is that as awful as the things that happened in the book were...we hadn't seen nuthin' yet. 2010 was WAY worse, and by WAY worse I mean that we came damn close to losing Ward...several times.

I gave myself a year to detach from the stranglehold a year of terror impose on a brain and heart and then decided

to rework the book.

Since it hadn't started out as a book, there was no preface, no history given, just started when it started and that's cool, but I know was confusing for anyone who doesn't know us personally.

So up front I added glimpses into our life together- the things that make Ward and I who we are as a couple, and Ward, Alec and I who we are as a family.

And then I added the rest of 2009 and up through 2011.

I cried through a lot of it.

My editor had to jump ahead to be sure it had a happy ending, even though she'd read the first one and KNEW Ward is still here.

Do I wanna make money? Shit, yeah. A decade of disease has left us pretty dry and with a credit score of -26.

More importantly

I want people to know that shit happens and sometimes God has nothing to do with it- the shit OR the good stuff.

I want people to know that they should NEVER be afraid of asking questions, expecting understandable answers and that they should DEMAND proper care- not just the medical stuff but human compassionly care- for their loved ones.

I want people to know that they are not alone. They have a voice. They need to use it and never be ashamed or embarrassed to do so.

The other day Ward's brother told me, "Sheri, I firmly believe your bitchiness and bullheadedness are the only reasons Ward is still alive."

Well, I appreciate that he acknowledges how much time, effort, energy and tears were shed on keeping his brother out of harm's way.

Personally, I believe that Ward stuck around to watch his only child grow up.

And he did have some help from the medical staff *wink*

But what we learned, over and over again is that the medical industry is just that- an industry, and it's expected to make money- meaning a lot of the human-ness goes out the window sacrificed for expediency.

People need to know that they can say, "STOP! Stop hurting him. WHY are you doing it this way and is there another way that's just as quick but more humane?" Most of the time, there is.


Speak up. If they don't listen, yell. And that's not speaking metaphorically. I've done it.

Do I look like a banshee fishwife sometimes? You betcha.

I don't care. I need my loved ones cared for, cared for well and cared for kindly and I really don't give a good goddamn how silly or unseemly I look to achieve that goal.

Medicine is great. Prayers are fab. But nothing gives a patient strength like knowing someone is in your corner who is not afraid to fight for you with anyone, anywhere and at anytime. Just because they love you.

Please pass it on.

*Coming to "real book" form in the next few weeks- I'll let ya'll know, or you can pre-order here-

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