Subject: Sketchy Albedo

Date: Sat, 04 Oct 1997 05:13:38 -0400

From: "Rev. Random the Other" <cmcjp02@nt.com>

Organization: TOXIC COW

Newsgroups: alt.slack

 

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 public.

 

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.

 

Disgustedly,

Rev. Random the Other

Gription Clench