Subject: Sketchy Albedo
Date: Sat, 04 Oct 1997 05:13:38 -0400
From: "Rev. Random the Other" <firstname.lastname@example.org>
Organization: TOXIC COW
Sketchy Albedo wrote:
> I have neither self-respect nor conscience.
You are beneath contempt, whoever you are, using the
name of this deadly disease as a usenet alias. I have
seen a lot of truly uncharitable behavior in this
newsgroup, yet have resisted the temptation to add more
bile to the froth. Until I saw your "cute" moniker.
You see, I lost someone I loved very much to Albedo, and
am still very much aware of the pain of that loss. You
seem not to care that over 28000 people die every year from
this affliction, that countless friends and family members
live with the anguish and pain, and the knowledge that our
loved ones will ultimately succumb. I will not be silent
while you attack my family.
My Aunt Sketchy was a kind and vibrant soul, so free in
her youth, and, I am told, quite attractive. She was
diagnosed with Sketchy Albedo shortly before I was born.
I still remember when she was able to go out in public;
she used to go to church with my family and often stayed for
breakfast. And yes, even then we called her Aunt Sketchy,
as a term of endearment and as a way for the family to come
to grips with the awful reality of her situation.
Early in my youth, and throughout my teen years, after the
disease had progressed to the point where she would no longer
go out in public, we would visit her in her home. I remember
the smell of antiseptics and worse, the plastic covering on
the furniture, the tremors and physical distortion.
Aunt Sketchy was deprived of anything resembling a normal
life long before the disease caused her death. It is the
cruel legacy of albedo that deprives sufferers of the
necessary human contact so basic to a full and satisfying
life; cruel, because apart from the albedo they are
just like the rest of us, with all the desires and
aspirations and joys that we take so often for granted in
the fullness of our health. The knowledge that she could
never lead a normal life, never express her potential,
not once led her into despair. She accepted with serenity
that the horrendous salient effects of the illness would
forever stigmatize her; she was not so much humiliated as
understanding of the attention she drew when she went out
In the end, she voluntarily removed herself from all public
scrutiny, even that of close family. She remodeled her home
to allow us to visit, providing a comfortable room for us
to stay while conversing through the cloth covered panel,
unable to see anything of the room beyond. Like a
confessional, it inspired a particular reverence which
allowed us to forgive the extended silences, the spastic
yodels and the thumping of that great body against the walls
and floors; to forgive even the smell.
I have been active for many years in trying to raise
awareness of this deadly affliction, and I am continually
frustrated by the lack of attention and understanding within
even the medical community. It had been known for at least
thirty years that Sketchy Albedo is caused by a protein
incompatibility with egg albumen. Coldly, the medical
profession has chosen to view the case as closed, suggesting
that the victims simply avoid eating eggs. They do not yet
accept that albedo victims do not have that degree of
control over their actions.
Sure, we all knew that Aunt Sketchy was supposed to skip
breakfast. I was never so inconsiderate as to proffer
say, an omelette, as my older siblings would do. I do
admit that if Aunt Sketchy was going to eat eggs, I would
alter my schedule to allow myself to stay for the inevitable
after-effects. Granted, it was quite a sight and always an
occasion for that dread mingling of fascination and horror;
still I feel vaguely guilty about it to this day.
Perhaps you, in your mockery, do not realize that an albedo
victim has no more control over their habits than does a
heroin addict or a welfare victim. More likely, you are a
person-of-nocompassion who will never understand the
unendurable magnetic pull of that needle, of that check.
You cower behind your assumed name with no concern as to how
your insensitivity effects others.
Go now, and reconsider.
And on your way out, send Lupus Yonderboy in next.
Rev. Random the Other