sadness

[serene]

I met Stacy in 2003. She had been stonebender's morning
attendant for a couple years by then, and it's hard to describe to someone
who hasn't dealt with attendant care how much of a treasure she is. She
came every day. On time. She did her work with barely any direction, and
she became a member of the family and a part of the Gilly-parenting team
(the permissive aunt, if you ask me).

She's never been told explicitly who I am to stonebender, so I
didn't spend a ton of time around her (so I wouldn't have to worry about
being circumspect), but I've always suspected she knows.

Stacy immediately took a liking to me (and my hair!) and asked about me
often; I think she's excellent in many ways. When she got sick, we sat by
in frustration as doctor after doctor failed to explain/diagnose/treat her
illnesses in satisfactory ways. She was misdiagnosed at least three
times, and she eventually was in so much pain that she quit her job, which
she could not afford to quit. She is poor and uneducated, and I suspect
she had difficulty navigating the kind of hardcore advocacy that patients
need to display these days just to get baseline care.

Anyway, she's really ill now -- terminal cancer -- and I am mute with
frustration. I keep typing a sentence and deleting it, typing and
deleting, because there are no words for how fucked up this is.

She's not much older than I am. She should've gotten so much more from the
people who were supposed to be taking care of her.

Comments

[cerulean-me.livejournal.com]

That's so sad and frustrating. :(

Can we help her?

[mamagotcha.livejournal.com]

What can we do? Use your LJ powers for good, Serene!

And I happen to think you have eminently likable hair, also. She sounds like a woman with her priorities straight.

re: sadness

[betonica.livejournal.com]

She sounds like a treasure; how sad that she's dying and in pain.

I would love to be able to help. Please check and find out if there's anything she's not getting because of something like money, and I'm sure many of us on lj would be delighted to help out. Or if she would benefit from companionship, perhaps those of us who are far away could assist one of you in a way that would free up your time to be with her? There are probably a lot of little things.

[marea93.livejournal.com]

What they said. I'm so sorry, Serene. Seems this happens often with caregivers.

[aquaeri.livejournal.com]

This is so sad, and so frustratingly angrymaking. I know exactly what you mean about "hardcore advocacy" and it's a number one trap for depression, because it's so hard to summon that energy.

[darklily1.livejournal.com]

Well, I hate to say it, but lack of education and money sometimes have nothing to do with it. Some doctors just suck.

I know it's a looong ways away...but try contacting the VCU/Massey Cancer Clinic/Thomas Palliative Care Unit. (http://www.massey.vcu.edu/treatment/?pid=2020)
Maybe they can point you in the right direction out where you are.

[stonebender.livejournal.com]

Just this morning I was telling Dana about you and loracs and I and our being poly (well, I didn't use the word poly, but I was clear.) Anyway, Dana said, "Oh, I know. Stacy told me."

[serenejournal.livejournal.com]

See? Toldja. :-)