Sunday, January 23, 2011

My brain is too full.

Update for those of you who found HN through Ebert's Tweet and who've been following the Tashi & Wash thing:

Tashi says her blog got sixteen thousand new visitors in 24 hours.

She thanked me for that. I don't know why. As I told her, I added the link for HN to the end of the email I sent Roger Ebert as a dithered-over afterthought. I thought maybe he might be interested in reading about somebody else's oral cancer; I had honestly forgotten that the top post was about Tashi and Wash. I was, in short, attention-whoring.

And so much good has come out of that. Even if Tashi still has to worry about money--and more on that in a second--she knows that there are *that many more people* who know about what Wash is going through. Raising consciousness like that cannot ever be a bad thing. I'm a firm believer in the idea that the more you tell a story, the more power you have to affect how it turns out.

This is an excellent example of how a) chance favors the prepared, or b) even grovelling ingrates like me occasionally get things right.

As for the money: That's a big deal, and it's not one I'm ashamed of talking up. Arizona's state indigent care program barely covers the necessities. They consider Wash ineligible for things like nausea meds and antidepressants, because what's it matter? he's just gonna die anyhow. That means that Tashi has to do things like buy drugs instead of pay car insurance--or, rather, with the grace of God, she *did* have to budget that way. Maybe now things will be a bit easier.

My dream for her and for Wash is that they have a couple or three months where they don't have to worry about the necessities, and maybe have money for a few small luxuries, like a dinner out. Wash worries about being a burden, and he worries because he can't make things easier for the woman he loves. I would like it if that worry could be removed.

And Roger Fucking Ebert, of all the kick-ass people, has made that more possible. Because of a simple, solitary re-Tweet he did of this blog, and a follow-up that he did of Tashi's blog independent of this one, it's possible. It's just barely possible.

I told Tashi that the only reason this has all happened is because she conveys so well what it's like to care for somebody who's living with a brain tumor. She writes beautifully, and it's raw and often painful to read, and it's amazing. If she'd been one of those folks who misplaces apostrophes, things would have not turned out like this.

The tl;dr of all of this is this: I don't want Wash to die. If he has to, I want him to have a peaceful, gracious, dignified death unmarred by worry. I want his death to be as loving and joy-filled as his life has been. And I want Tashi there with him, and not having to worry about fucking money. And I want her to see that, even if living without him feels like all the air's been stolen out of the world, people still care about her.

*** *** *** *** ***

In other news, I would like to remind the readers of HN what they did this year:

They kept the author of the blog alive and hopeful. There were a lot of times I felt really dark and awful and like giving up, but somebody always emailed or commented and said exactly what I needed to hear. This is, obviously, the most important thing to me.

They bought a Therabite jaw rehab device for somebody who really, *really* needed it. The person in question had been through surgery and radiation and had a mouth opening of something like ten millimeters. The Therabite allowed her to stretch her jaw muscles to the point that she could eat, and brush her teeth, and talk intelligibly.

They donated nearly a thousand dollars to the Oral Cancer Foundation. That money will be used for research, education, and patient support. OCF is run by two people, mostly on one of the founder's money, and it provides *invaluable* support for people with head and neck cancer.

They donated a thousand bucks to Tashi and Wash when they needed it desperately. That money paid rent, bought at least two prescriptions, gassed up the car for appointments, paid co-pays, and bought Wash some hats to cover his bald head. And then some.

*** *** *** *** ***

Every couple of days has been a new year for me, these last few months. Every few days I'm filled with excitement and exultation over the possibilities that you all have brought to reality.

I am immensely thankful. This blog's readers are the best readers ever.

Thank you. I keep thinking that nothing could get any better, and you guys keep proving me wrong.

10 comments:

Lynda Halliger-Otvos said...

You are the leader of this band of rag-tag readers; may I thank YOU?

Jo said...

Lynn: I seem to be a scruffy-lookin' Nerf herder, that's for sure.

Penny said...

I had to Google it. "tl;dr" means "Too long; didn't read". I fear for the future of this country, when it ends up in the hands of people who have been texting such idiocy to each other their whole lives.

Other than that: Mysterious ways, Nurse Jo. Mysterious ways.

Rosanna said...

Jo,

I'm not very good at words after my stroke, but I think you're genuinely helping to make (The Public's Perception Of) ALL of us nurses kind of "be" what it commonly used to "be," not that long ago, i.e., when your BACK is pressed-against-the-wall....and there ain't NO PLACE to turn for practical/get-real help....and there's really NO ONE to help you, either............ find.a.nurse.

Both Wash & Tashi's courage and tenacity: astonishing, genuinely astonishing. And this (relatively) young wife Tashi....with a love for her poor, dying husband Wash that *awes* even those of us (me) who've been married now for 37 years!!....has the word, (i.e., that *wonderful* LIFELINE word!), "Nurse" on her personal "Blogs I Follow" List............ just ONE time.

And all of us reading (the blog that we're reading) right now............ certainly know WHO that "lifeline" nurse is. (Even if the splendid outcome with Roger Ebert was unintentional, ya STILL make all of us look damn good, Jo. So there!!)

With thoughts & prayers for poor Wash & Tashi; and for you, too....dear "Jo of Arc," (scruffy-lookin' Nerf herder that you are, haha)!!
Rosanna

Anonymous said...

You are the shit. That is all.

me said...

What gifts you've brought in to being with your words, Jo!

You are made of awesome ~

Anonymous said...

I have been reading Tashi for a few months now, and then I found you. It is great that they got some money.

I live thousands of miles away but hope that someone reading this lives in AZ and finds a good cancer support group to adopt these two brae young people. Tashi is overwhelmed with managing his illness, with the myriad of runs to the pharmacy, doctors appointments, personal errands, shopping, cooking, ed, and the hundreds of other things that she has to do.

It is obvious that their families are indescribably useless, so i hope someone in AZ will take the task of finding some sweet folks to drop off some meals, make pharmacy and food runs, look for some entertainment for Wash and occasionally sit with him while Tashi gets out. It is great that the fraternity made a huge and meaningful financial donation, but there are a lot of them. How about doing some good deeds guys? I think there is a Jewish cancer support group there, anybody know them? Someone should step up and organize a daily visit/errand, whatever is needed. Tashi is too darn busy to organize it, but I know there is a mini-HeadNurse out there who could do this job in their sleep. Come on folks, money is good, even great, BUT NOT ENOUGH.

Anonymous said...

Heart's brimming over, too...

Albinoblackbear said...

It is truly amazing an magical to see all the good that you have brought to so many people. Especially since it was through your writing and healing, during a time when many people would have simply retreated into a dark place of despair.

Truly amazing.

inkgrrl said...

Truly, you are The Shit. People like you are why nurses rock.

I'm pinging my aunt in AZ to see if her church is good for anything more than hating on LGBT & POC. Do you know where in AZ they are? I'm assuming all resources via the American Cancer Society and his hospital's case managers have been exhausted or are not available? Sorry I'm not reading through the entire blog to get details - wouldn't normally be so lazy but am adjusting to new pain meds so my attention span is fruit fly meets boiled doily right now. If you'd rather answer offline or I'm being clueless and not seeing the answers right in front of me, pls to inform or can email me at inkgrrl at gmail.com if easier way to apply clue bat.