Letter from Jordan

[Guest guest]

Dearest Crew,

Hi, this is Jordan Harlow and for those newbies, as I hear we have tons, I am an

old crwixxxxx

Crew member from the beginnings of the Crew years. I left last year due to

vision loss, and over

the last few months I have become totally blind. I wanted to take a moment to

talk to all of you.

I know Kim M. has been keeping you updated with my health news throughout the

year and quite a few

of you saw me a few weeks ago in Houston. I wanted to chat with you myself about

my health and how

I am feeling and dealing with it. I do not want to start a depressing round of

posts nor do I wish

any of you to leave because this is a tough subject and you only want the Crew

to be a happy

place.

Well, I agree, it should be a positve place but our health is the reason we are

all here together

and should be talked about sometime but what makes this group so wonderful is

the people and your

attitudes and feelings and personalities and senses of humor. I loved being a

part of the Crew and

was proud to say I belonged to it, so with that said, I will now give a brief

rundown of what is

going on with me...

I have been diagnosed with NF2 for alomxxxx almost twenty years and in that time

have had many

surgeries and lost many functions... hearing, vision, balance. The doctors have

told me there is

nothing more they can do for me and not risk my life trying to get at the

numerous tumors stll

left in my head. I have taken the choice of quality of life over quantity of

life. That is MY

decision and mine only. I do not try to nor want to tell you the best game plan

for yourself. I

have a very aggressive form of NF2 with rapid regrowths so what works for me may

not be what is

best for you.

This summer has been a hard one. I have experienced many things which I have

dubbed my brain wacky

cycles. We worked all summer on getting meds that can help me be comfortable and

in little or no

pain. Well it was hard to find the right balance and often times I was suffering

quite a bit. But

we have found a working regimen for the moment and I am comfortable and resting

easier. Yes, my

life is at a slower pace now but I read, take my siestas, grin... see friends,

and type on my

computer and read email via braille. It takes longer to do the computing and

reading email things

but I stay in touch with friends and am enjoying my days.

Kim told you recently we contacted hospice. One thing I want you to know is that

hospice is NOT a

hospital where people go to die. It is a program where terminally ill people can

remain at home

for as long as possible receiving spiritual and emotional support, medications,

personal care, and

specialized information. Hospice emphazixxxxx emphasizes quality of life and

symptom controll.

They teach the family how to do certain things so that the person can be

comfortable and safe in

the home environment. We had a preliminary meeting with hospice last week to

find out what

services and help they could provide us with for the future. The major reason we

contacted them is

to get help in retguxx regulating and monitoring my meds bc the docs are at the

point of only

being able to make me comfortble.... well what is comfortable and what is over

comfortable?? The

hospice people regulate those meds and offer advice on ways to help me be

comfortable in my home.

Right now I am taking thirty mgs of morphine by mouth at night to help me sleep.

During the day if

I have a pain cycle then I use a fast acting pain med called Stadol which I

snort thru my nose,

grin. With an anti- nausea pill, that rounds out the only meds I am taking.

Now for my feelings about all this.... this summer was hard and I had to do alot

of soul searching

about how I wanted to live out the rest of my life... a sad sack depressed over

what might not

come for months or enjoy the time I have left with family and friends who love

me and want to be

with me? My vote is to live my life to the fullest and happiest that I can for

as long as I

can. I am not depressed nor sad about where my life is at the moment. Sure, I

wish it could be

otherwise but it can not for now. There is no cure for NF2 right now so I have

to deal in my

realities and I choose to live them with happiness and love and friendship. I

have had wonderful

opportunities and met some fantastic people and feel very blessed for the life I

have had. So it

is hard for me to be gloomy all the time right now and hope that my friends

would watn to help me

celebrate the life I have. Please do not feel I am in lots of pain and

discomfort and sadness for

I am not.

I really love all you guys and am so happy to hear the Crew is growing and

growing. It is a

wonderful place to share friendships and silliness as well as the pain of

everyday living.

I am sorry for all the typos but I like to type my own letters and spell

checking is out of the

question for me these days! Also if anyone writes to me it could take a week to

ten days for a

note to be transcribed for me so do not freak if my reply is not immediate. I

will reply as I can.

Take care all of you and God bless!

warmest of hugs, Jordan