Today, April 17, a letter came by U.S. mail that we will soon frame and treasure forever. Here's what it said:
It was so cool to read your magazine and see the fact that my anger is the truth, not something I should just deal with or be ashamed of.
Thank you for announcing the truth, and reminding me why I fight everyday
From: "thornyrose" <email@example.com>
Hi, Thanks a lot for putting your magazine on the net. A friend from a pain forum referred it to me & our Forum. Our forum had a big to-do over your SEX page - most of them are 'devout' Christians & screamed PORNOGRAPHY like pigs. I loved it!! And I like the mag as well. Love the militant attitude.
I am a disabled RN so your stand on "do-gooders" bothers me some but something had to! Believe me, I was a militant nurse rocking that medical shit boat while I was able to work!
Please hang in there and keep it on the net. (I've referred ppl to it). Hopefully it will help you grow & expand in whatever direction you would like.
Subject: I just checked out your website - Wow!
finally had a chance to visit your site after hearing so much about it
from others (including Josie Byzek). I love your frankness and the brutal
honesty of your stories. I will check back often, and I am glad that an
alternate resource like yours exists.
Kristi and other readers may (or may not) be pleased to hear that Mouth will soon publish an issue on Transition Plans for Professionals. Recovering professionals, many of whom subscribe to Mouth, will be writing about how they help other staffers and professional do-gooders take their first transitional step into the real world. Stay tuned for that.
I am glad I found your website... Now I can be edisabled!!!
Shown here, above and below, two Bruce Faw
Letter in answer to our call to hear about good charities:
Our editor wrote back to her as follows:
Laura, and it does warm my cold little heart. There's this niggling worry
I have, tho. MDA's "scientists" long ago concluded that there is no cure,
that only prevention can serve to end "the agony of MDA." Prevention means
birth prevention. That translates into "genetic counseling" and consequent
pressures -- some mild, some very hard-line especially if you're on Medicaid
-- to abort. Health care administrators have long since figured out that
we're cheaper dead than alive.
I share your concerns
100% with about everything you said. I believe Jack Kevorkian is a serial
killer as well. If I personally wanted to choose to die, I would choose
to do so-but I do not wish to put that power into politics and into other
individual's hands. I want the right to choose to die if I wish, but I
do not want to impart the power of life over death into another individual's
hands. We all know where it will go, as history does indeed repeat itself.
I personally feel that
partial birth abortions are one of the most horrible things of which I
have ever heard. I believe aborting fetuses because of disabilities is
not only an outrage to disabled individuals in general, but also robs
in a myriad of ways from the non-disabled community.
I do not interact with
the MDA as I am disgusted with the amount of money that does NOT get into
the hands of people who need it. However, the FS M A does not advocate
or counsel abortions because of the genetic disease S M A. There is no
pressure to choose this--as a matter of fact it has been a matter of huge
debate from the members in the past as to what the "right thing to do"
is, with no input from the organization other than "Each parent must do
what they feel is right for them and their families".
There are some parents
who do choose to abort because of S M A (pre-natal testing is available
at 10 weeks gestation) and some who do not choose to test and/or abort
if the test returns positive for S M A. In general the people who DO choose
to abort because of S M A do so because the child has Type I S M A, which
is 100% fatal, usually by the age of 1. The child becomes completely paralyzed
as a baby, needs a g-tube to eat, and quickly help of some kind to breathe.
There is no cure so many parents don't want to put a baby who has no chance
or understanding of what is happening through that. Some just can't handle
it themselves. I have lost two sons to S M A Type I, one at 13 months
and one at birth.
The MDA scientists are
mistaken...there is indeed a cure on the way, and it is coming quickly.
Scientists just cured S M A in mice and now only need to translate that
to humans. S M A is basically a protein deletion in an otherwise "normal"
gene. Researchers cured the S M A in mice in utero and after birth by
adding this protein (called SMN2) directly to the mice. Adding this protein
replaced what was missing in the S M A mice, and they not only were then
born perfectly healthy, but the mice who were affected and not injected
until after birth saw a reversal of symptoms all the way back to "normal".
So it is exciting.
It's not gene replacement
therapy (which thus far hasn't worked in anything), but basic protein
replacement. Interesting stuff! They feel they will have this in 1-5 years.
I wonder if they will change their tune during their genetic counseling
sessions when that comes to fruition.
Other than the occasional
appearance of politics, I have been pleased with the FS M A as a "charity"
organization these last two years.
I've started websites for people specifically with S M A, and one section is "S M A Inspirations" which targets people with S M A who go on to do inspirational things. I don't mean going out for a beer, I mean the woman who is 28 years old now, outliving her original diagnosis by 20 years, and is a singer with 2 CD's out contrary to what every doctor ever told her about her ability to breathe, let alone sing. That kind of stuff. So if you hear of any others, would you pass it on?
Just got my first issue,
on contaminated help. As a parent, I understand better what my child has
been trying to express about her experiences.
We learned a long time
ago that if we thought she needed help, we should ask if she needed it,
raised hell at the school (which still doesn't get it) when they tried
to tell her what she was capable and incapable of doing, and listened
to the patronizing crowd at the all-star basketball tournement congratulate
us on her courage.
And my reply? "She takes
my breath away." Not because of what she does, because of who she is.
She understands that to others she is missing a hand and "she just makes
the best of it, 'because she has never known any different, she was born
that way.'" She knows for herself that she has to continue to play basketball
when she breaks two of her fingers, and play even better, just to be considered
"as good," to stay on the team and play the sports that she loves. She
knows that every time she is on the sports field, at physical education
class, or just "hanging out" she is judged by what she can do (compared
to the Normal kids) as well as who she is. She knows that if one time
she gives in, if one time she says she needs a break, the next time the
expectation will be that she cannot do "it". When will the world let her
be twelve instead of superhuman?
She takes my breath away.
She is her own person, intelligent, strong, gentle, kind, thoughtful,
and has a great empathy for those who mistakenly think that she is living
a life that is less than their own. She knows that she is more, so much
more. And she lives that way.
Thank you for the "in
your face" magazine that her family can share. Thank you for shining a
light on my attitudes, and thank you for a forum to support our family
support this child. Thank you for creating the road map abolish victimhood.