This is the most important posting I have ever made here. Let me introduce
you to a gentleman by the name of James Swayze who is a keen mind trapped in
a quadriplegic body that is wracked by pain. I have been in private
correspondance with him and he is one of the finest people I have yet met on
the net.
He wishes to have a cryonics policy but would prefer paying his own way with
some help rather then simply take charity. In trying to deal with his
situation he has conceived of various devices that would greatly help people
in his situation. In partnership with one of you here he could perhaps
bring these to market and raise funds for himself. But if all else fails he
would be willing to accept donations to a cryonics organization so he could
be eventually suspended.
In his words you will discover an individual who is very articulate and
thoughtful who has suffered in ways that would inspire dread in all of us.
He sees cryonics as a possible route to a healthy body and absolutely
deserves his chance I believe.
Among extropian digest members there are so many capable people. I would
ask that those of you who feel you could help (and be helped) by James
Swayze to contact him.
I realize some of you do subscribe to Cryonet but many others do not and so
I have reproduced his two posts here to share with you all the thoughts of
this man. I could have recommended going to the archive but then many might
not get around to read his words.
He starts out in the first post sounding somewhat angry and bitter but this
is in response to a Cryonet topic of why some people choose death over
enduring pain. But later in the next post he shares how his heart had been
touched by the outpouring of support he had gotten from the list members.
James goes on to discuss how government barely gives him enough support and
yet prevents him from trying to better himself! It would be a terrible
dilemma to be in.
While the Cryonet list members are considering various ways of helping him I
am sure the extropians need to be made aware of him also. When you read his
posts you will know that he is one of you. And if any group of people have
the skills to help him it is right here.
sincerely,
John Grigg
Message #13011
Date: Tue, 28 Dec 1999 08:17:04 -0800
From: James Bryan Gustafson-Swayze <swayzej@earthlink.net>
Subject: Re: CryoNet #13008 - #13010
References: <199912281000.FAA15857@rho.pair.com>
RE: DAF discussions
I've only read a few of the arguments here about DAF. From what I have read
I
find it difficult to "extrapolate" much more than a bunch of wordy
individuals
that delight in sounding intelligent through the use of 10 dollar words and
circular logic. I can further tell that none of you has ever really
suffered. I
have and still do. I have been a quadriplegic for 20 years. Contrary to
common
conception I DO have pain, very much of it in fact. I along with the
paralysis
happen to suffer a bone disease and the dubious distinction of being the
worst
case of that disease. I am also diabetic. I am alone and impoverished and
have
little practical prospects for alleviating my loneliness.
So, I suffer 3 kinds of pain. The first is familiar to all, your basic pain
felt
where my nerves still transmit. The second is terribly insidious and is
called
"Autonomic Hypereflexic Dysreflexia". This causes my blood pressure to rise
rapidly and dangerously in response to pain stimulus located in areas where
my
nerves no longer transmit. There is much anguish to go along with this kind
of
pain as I am in danger each and every day of suffering a stroke from the
heightened blood pressure which for some odd reason targets especially the
brain
causing unbelievable headaches. These headaches increase in magnitude with
each
and every heart beat pushing me closer and closer with each pulse to
possible
stroke,
loss of control or plain oblivion.
The third type of pain is mental. I mentioned the loneliness. Imagine if you
will that every time you see an attractive woman you must swallow your pride
and
forget any aspirations because you, to her, are invisible. Imagine not
having an
orgasm whether self induced or with the congress of said attractive woman
for
more than 20 years and having no hope of ever having one again in ones
lifetime.
Imagine being inventive and intelligent but lacking the use of ones hands to
bring any brilliant ideas to fruition. I could go on and on but I think I
have
made my point. I doubt any of you really knows suffering as I know
suffering,
pain as I know pain. Such suffering and pain that could cause one to seek
relief
from oblivion.
I consider it every day. So far I have chosen to endure. However, that could
change. I would rather be transported and have at least a small chance of
realizing the life I lost. For I am not living now I am only existing. I
have
for brief periods experienced nonexistence. I was coded when my heart
stopped
once. It was total unconsciousness. I know this because I have no memory of
how
it felt, only the loss of time. I know this is how death would be. No
consciousness....no pain! It's quite simple really and no need for circular
syllogistic acrobatics.
Like I said I would rather be transported, perhaps even downloaded--provided
it
meant some hope of feeling something again. However, I must face reality. I
haven't the funds to pay for cryonics. I will keep trying as long as I can
to
produce them but there may come a day when I must decide an awful choice. I
must
make my choice while I still have the capacity to do so. I am 41 years old
and
the quadriplegia, the bone disease and the diabetes are eating away at me.
One
day I may not be able to, for myself, end my pain in the face of the reality
of
no chance for transportation. Shouldn't I deserve if not in life at least in
death, some small bit of dignity? What would you do?
James Swayze
swayzej@earthlink.net
Message #13052
Date: Mon, 03 Jan 2000 20:57:10 -0800
From: James Bryan Gustafson-Swayze <swayzej@earthlink.net>
Subject: Re: CryoNet #13038 - #13044
References: <200001031000.FAA15809@rho.pair.com>
RE: Gracious response I have received
First let me say sorry for being silent so long. The New Year and fatigue
and a
computer mishap
(locked up and wiped an entire letter I was working on to post) got in the
way.
I am humbled and awed by the caring response I have received from you all to
my
post. I Have written some of you individually so forgive me if I repeat
myself
here. I am feeling a bit silly for the antagonistic tone of my post. Not one
of
you has criticized me for that. I have great hope for humanity and faith in
humanism and you all reinforce that for me so incredibly much. I also want
to
apologize for mistakenly giving the impression that I may be actively
suicidal
presently. In my effort to make my point I chose the wrong words. I should
have
said that it is something that given no better alternative is everyday in
the
back of my mind. However, I don't brood over it constantly and I would not
describe myself as clinically depressed. I like to consider that my
depression
could easily be cured with a job and a girlfriend, in other words a real
life.
I must also say when I wrote my first post I had no intention to solicit
help
from you all toward the
goal of cryonic suspension. I was surprised and frankly flabbergasted from
this
result. That being
said I want you all to know I definitely would accept any help I could get.
Only
a fool would refuse
if under my circumstances. After all, in my belief, it would be the saving
of my
life and hopefully
so much more. Not three weeks ago I contacted one of the contacts for
acquiring
insurance policies to cover suspension contracts that was listed on Alcor's
site. They were compassionate towards me but did not know of any company
willing
to take the risk with all of my ailments. I admit I did feel some despair
from
that and perhaps it came out in my post here that day.
I have been in touch with some of you individually where I proposed my wish
to
do what I can to do my part. As I mentioned in my post I am inventive. I
have
been seeking for some time any who could, for a full partnership, help me in
obtaining patents and such as needed to bring my ideas to fruition. In this
way
the help will be in helping me help myself. I am not in any way refusing the
pledges I just want to be a part and do what I can. I and those of you I am
in
contact with are discussing several ideas even a book about my life, which
is
actually considered quite a story. Further I am an artist and can paint
(when
the muse is kind to me) and wish to try sculpture for which I have several
ideas
floating around for quite some time. One of my biggest problems is too many
ideas for time and ability to accomplish. I have also been known to build
model
airplanes using special rubber band and paper clip clamps I designed which I
can
grab with my teeth and a thumb and clasp around a part to hold while gluing.
Perhaps I could do art or crafts (I build clocks out of old pc hard drives
and
motherboards) for commissions.
Some may be wondering how a quad can do all I have mentioned. Though I am a
quad, meaning four extremities paralyzed, I am not as impaired as Chris
Reeves
when it comes to the use of my hands and arms and breathing. My level of
injury
is C5/C6, where C means cervical. Chris's injury is higher than that and
thus he
has more impairment. My triceps muscles and many others in my arms do not
work
but my biceps and shoulder muscles do. My hands are clinched into a semi
rigid
fist. I type by stuffing two sticks with rubber tips between my fingers and
can
manage maybe 30 words per minute for a short stint as I get fatigued
quickly.
Since I am able to do the things I mentioned and more that I haven't one may
fairly ask why can't he work a job? Some may already know the answer to
this--disincentives. Now I have heard a rumor that legislation was signed by
Clinton that would change some rules that make it impossible for a lot of
disabled people to work but I have not seen any news reports of it. I
already
planned on looking further into it though. However, this may only be federal
and
not affect the local level much. So far for all of my life as a disabled
person
the rules have been prohibitive.
For instance I am not allowed to own anything over $500 in value so,
technically
I can't own my pc or my TV or my stereo, etc., etc. I am not allowed to
have
more than $1500 in liquidible assets or savings. I cannot own a home in
which I
do not also live in. I cannot own stocks or bonds. I may
only own one vehicle. I must report any income over $25 and that which I
report
gets taken away from what I receive so the net gain is zero. These rules
were
devised to stop welfare fraud and when applied to the able bodied are
justified.
Now there is some allowed extra income for Social Security Disability
pensioners
to earn up to a certain amount but it is totally unrealistic in the real
world.
This also doesn't take into account the way it meshes with the state portion
of
the equation.
The biggest disincentive is losing medical coverage. I get $516.55 per month
social security disability (SDI) and supplemental security income (SSI)
combined. Of that the supplemental security income is $36.55. That is my
entire
income unless you include free rent in my folks' home. If I got more from
SDI I
would get less SSI. SSI pays my Medicare premium and qualifies me for state
paid
Chore Service or my care attendant, which by the way has been my step
brother
mostly for these twenty years. If I earned more I would lose SSI and thus
lose
the chore service and have to pay for that myself which I could begin to do.
My medical costs for supplies, drugs, nursing service fees and wheelchair
service was $41,000 last year. This did not take into account doctors fees,
the
chore service of $1229 per month and
hospital costs. My wheelchair cost $25,000 and is 8 years old. I haven't
been as
active as I could
be or would have to be if employed but when I was I wore out wheelchairs at
a
rate of one every
three years. A vehicle for me to drive would be in the neighborhood of
$50,000.
If I were employed, away from home, I would need more than one chore person
to
manage me and my household chores. Right now the state has me at the highest
rate of pay for my step brother and for this he is supposed to cover my
needs 24
hours a day 7 days a week. It's ludicrous and would be illegal for minimum
wage
alone if they didn't get around it by making him an independent contractor.
Something can happen that requires assistance at any time of the day or
night
and there is no planning it. Often it is the type of thing that if not dealt
with right away can cause injury or even death. The two most dangerous and
common are bowel and urinary difficulties. I already described what can
happen
if either cannot be emptied. In the case of an accident the skin is
immediately
in danger of break down which if occurs takes months to heal and can lead to
costly surgeries with skin grafts. The only way we manage is that I am
fortunate
enough to have a loving family that pitches in when my step brother is away
at
his other job or living his own life.
This is all probably more than you all wanted to know. I apologize for
rambling
on. I do not mind
telling what life this way is like. If more people knew perhaps the
government
would be compelled to better remove the barriers and let us do something to
contribute. Even if we couldn't reach break even point I think the overall
cost
for the country would be less. Once about ten years ago I calculated what I
would need as starting out pay to sever the umbilical chord attached to
Uncle
Sam. To provide enough to pay for the medical and the care and the equipment
and
the trappings that one needs to stay within the social level of ones peers
would
take at least $125,000 per year and that's conservative and half of it is
chore
and household care. Why the social level part? Does anyone trust a salesman
that
drives a junker? How many successful executives compete very well in the
ladder
climb wearing cheap clothes living in run down quarters or otherwise not
showing
the signs of success? Are there a lot of $125,000 a year jobs out there? Not
many I assume. Should the figure be adjusted upwards for 10 years inflation?
I
would be glad to work if it comes about either through realistic removal of
disincentives or some end around that would allow me to work without losing
my
medical coverage and pay for a care attendant. I would of course be very
happy
and would really love working as a volunteer for any of the Cryonics groups
These disincentives are why I have for many years pinned my hopes on one of
my
inventions one day paying off. If I were able somehow to provide for myself
with
the aid of some opened doors the pledges made on my behalf could be
nullified or
provided for someone else. That of course is not up to me. However, I want
to
pledge that should the fruit of my newly shot in the arm endeavors end up
being
beyond expectation, in other words should we make a pile from one of my
inventions or a book or what ever, I will sponsor someone of need as well
myself.
In closing I wish to say I would eagerly welcome and invite anyone to
contact me
in any manner. If anyone is near my area or passing through please do stop
in. I
crave intellectual conversation and the company of like minded thinkers. My
family though I love them dearly do not all share my beliefs. Fortunately my
best friend and step brother does. Here is my contact information.
James Swayze
11316 NE 189th Street
Battle Ground, WA 98604
Ph# 1-360-666-0936
Thank you all again,
James
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