Joanie

March 30, 2002

Dear Crew,

I did meet Joan at 1 or 2 Aldacons. As a senior on the crew who seems to have a relatively mild case of NF2, my heart goes out to all of you younger ones wrestling with this monster - and having to go through this loss - being a bit of a spokesperson for what it feels like. I wish I could do something to comfort all of you.

Hugs,

Barbara B.

(P.S. Not excluding older crewbies but I think it's mostly younger (42 is young) ones who have spoken of their grief.)

March 30, 2002

but you know what I fear Charlotte? Being incapacitated after surgery and

unable to communicTE but aware of whats going on and thinking "dont

pull the plug!!! give me time!" and since I cant communicate because I

cant voice or sign they think I shud be 'let go' and poof. I know joanie

had brain damage but even after my last surgery i was in so much pain I

was telling them I was miserable but no one cud hear me becuz i was talking

low. Anyhow, I dont want to die but i suppose if i was in joanies state

it wud be best. I'm still upset that she had the surgery at all, I dont

know bc no one has said but it didnt seem like a necessary surgery at this

point, she just wanted the abi! I was recently considering pursueing the

abi, but Ive made my mind up, no way no how, even if my recurrent an's

MUST be operated on at some point in time, I not taking any chances with

unnecessary procedures. know what makes me sick? Bobs dr's were actually

going to put aN ABI in him! He was scheduled and everything. only at the

last minute the dr's said no, better not. Well bob been telling us for

a year he has 4 lemon size tumors on his brainstem, duhhhhhhhh an ABI just

might be risky! I could have told them that, but he was optimistic theyd

do it! That right there is enough for me to not trust dr's judgement when

it comes to the ABI.

Sutter wrote:

I

only knew her thru Crew mail, so even though it greatly saddens me, too,

I would normaly leave comments to those of you who knew her well.

However since it was said that she had signed an advance directive for

no life support I'd like to comment because it brings up that subject. The

fact that she made this decision herself doesn't lessen the grief, but

it's something we all should think about rationally for ourselves before

we have to go in for an operation. Then your wishes aren't

interpreted as being possibly rash or not thought out. Whatever

you decide -- if and when you're in that position, you need to let your

next-of-kin know ahead of time how you feel and your wishes. I do

know that here in Washington even tho you've signed a DNR (do not resessitate)

when you're physically in the position of needing to be put on life support

or not they will ask your next-of-kin and it becomes their decision!

Personally I have signed a DNR and my husband, my kids, and friends all

know I mean it. I'd made this decision long before I even knew

I had NF2. If I was younger and had children at home perhaps

I'd feel differently, but that is a personal decision one can only make

for himself -- and I feel it's something everyone should think about. Charlotte

(Hoping this doesn't distress anyone but it's a subject I feel strongly

about).

March 30, 2002