Be aware that what I am
going to say is 100% fact and it is very gruesome.
I need to tell you all the gory details so you can truly
understand what a miracle it is that I am alive today.
On Sunday 11/3/96, I bumped my head on the
door frame while exiting from my car. It
stung a bit for a few moments and I thought nothing else about it. On Wednesday of that same week I started to
get headaches, and a huge lump called a hematoma (blood clot) formed on
the
back of my skull so I starting taking Advil for the pain.
I called my doctor and was told that it
would be very painful for at least a month until the blood reabsorbs
back into
my system. On 11/23 I called my doctor
because by this time the pain was getting worse not better like he said
it
would. I was referred to an after hours
doctor who confirmed that I had a blood clot and sent me home. On 12/9 I saw my doctor again and by this
time the blood clot had grown to a size of 6x2-1/2” and could be seen
from
across the room. He then ordered a CAT
scan to check for a skull fracture, and ironically the blood clot
didn’t show
up on the scan because the contrast medium wasn’t ordered, and no skull
fracture was found.
For the
next month I went to the emergency
room twice and was sent home both times with no answers.
I had x-rays, saw a neurologist, went to a
pain clinic, saw a neurosurgeon and visited my own doctor several times
with no
relief in sight. I was given every pain
killer known to man: Fiorinal, Daypro, Amitriptyline, Tylenol 3 with
Codeine,
Ambien, Demerol, Clonazepam, Darvoset and finally Roxicet – none of
which
helped to lessen the horrendous pain at all.
I was taking a regimen of 3 extra strength or 1 prescription
Advil and
alternating with 2 extra strength Tylenol every 2 hours for over a
month. Even this didn’t help me. I also tried alternative medicine: feverfew
which is normally taken for migraines which I have never had, and a
topical
herbal mixture of St John’s Wort oil, Arnica oil and Aloe Vera Gel
which had a
salad dressing consistency. I would
plaster this greasy mixture onto my head every day, which made my long
hair a
nightmare to look at and had a nasty smell to it. During
this whole period
of time, I only missed one day of work, and worked 45 hours a week even
though
I was not getting any sleep at all.
I’ve never been a fan of suicide, but Dr Kevorkian was looking
real good
at this point. I could truly understand
for the first time why someone wouldn’t want to live, if that was how
the rest
of their life was going to be. I would
get down on my knees literally crying and praying to God to take my
life so I
wouldn’t have to suffer that horrible pain anymore.
It truly felt like something was eating my brain!
On Sunday 1/12/97, I was
at my boyfriend Arnold’s
house and having a very difficult time walking. The pain was
extremely excruciating and I
had to lie down on the bed. After that
I lapsed into a coma. The following
scenario is what he told me happened, while I was in the coma, since I
remember
nothing of the next three days. After
Arnold realized I was in trouble, he called my doctor, who told him to
let me
sleep my coma off and then to call him back in the morning. Next
day (Monday) Arnold called back and
insisted that the doctor see me. He had
to drag me into the office since I could not walk on my own. My
doctor then told him that I probably was
suffering from a drug overdose and sent me home. By Tuesday
morning when I still didn’t wake up, Arnold was
furious, called the doctor’s office back, and told them he was going to
call an
ambulance and get me to the hospital.
When I arrived at the hospital Arnold talked with the neurologist that
I
had seen previously about what was happening and they ordered another
CAT scan
for me, but this time they put the contrast medium in. To the
neurologist’s horror they saw a white
mass in my cerebellum, which they couldn’t identify. At this
point a neurosurgeon was called in. He checked out the pictures
and said that he
would need to perform brain surgery on me the next day when he could
get his
team together. Thank God I was in the
coma because I would have said no way!
He said he was going to get his operating team together and be back in
the morning. After only a few minutes,
he came back and said that after assessing the situation further, he
must do
emergency surgery on me that night instead of waiting, because he felt
I
wouldn’t live until the next day.
Here comes
the gory part. My brain was so swollen
with fluid, he had to put a hole in the top left side of my skull the
size of a
quarter and insert a drainage tube in.
He then made an incision from the base all the way to the top of my
skull. All the neck muscles were then
stripped from the back of my head. When
he opened me up he saw that the skull bone was full of holes and soft
at the
base due to an infection (Osteomyelitis) that had eaten it away.
He had to cut it all away to keep it from
spreading further. He then removed a
tablespoon of pus from the cerebellum area, which ended up being the
white area
that had shown up in the CAT scan. The
hematoma that was originally the source of my pain, had become infected
with
two forms of strep and a staph infection.
These infections then literally ate their way through my skull, and
formed an abscess in my cerebellum. If
the doctors had only ordered a blood test when I was having so much
pain, they
would’ve seen that my white count was in triple digits, and could have
given me
antibiotics, which may have killed the infections, and I never would
have
needed this horrible surgery. Instead
they just kept taking my temperature, which was never elevated during
this
whole time. I usually don’t get a
temperature when I am sick, and the all Advil and Tylenol they had me
on,
probably kept my temperature down as well.
The next thing I personally remember was waking up in the ICU with all
kinds of tubes hanging out of me, and a reverse Mohawk hair cut.
They closed the huge incision with metal
staples so I felt like I had a zipper up the back of my head. They had
me on a
mixture of three different very strong antibiotics for the first week
because
they had to make sure they killed all three forms of the
infections.
These were so strong that they caused very
nasty side effects. After spending two
weeks in the hospital they sent me home with an IV Pic line implanted
in my arm
and I had to administer IV Vancomyacin to myself several times a day
for the
next month. The IV Pic line broke twice
during this time so I had to undergo two re-implants as well during
this
time. I eventually developed an
allergic reaction to the antibiotic called Red Person syndrome. I
was covered from head to toe with a
horrible rash and had trouble breathing, so needless to say they made
me stop
taking it. Since there was no other
antibiotic that would properly kill this type of infection I had to
hope that
it had done its work. I was put on a
pill form of antibiotic called Biaxin for precautionary measures.
By the beginning of March 2007, I felt that
I might be ready to go back to work but the story doesn’t end here…
A few days before I
was scheduled to go back to
work, I started having horrible pain again in the back of my head and
neck. It started out as a mild
stiffness, which increased to pain, that very quickly became
unbearable.
It was very frightening, and it felt like something was eating
away at my
spinal cord. I thought that the
Osteomyelitis (bone infection) was back again!
I had several doctor visits and tests but they couldn’t find anything
wrong with me. I learned a lot from the
ordeal I’d just been through, and got very efficient at surfing the
web.
I took my life in my own hands now – you’d
think after all I had just been through, they would finally listen to
me. Being a woman, I find that doctors very
often don’t take us seriously, and they seem to think that everything
is stress
or hormone related. I discovered on the
web that one of the best tests to show up a bone infection is an MRI
with
contrast, and I insisted that they give me one immediately. They
put up a fight but I was in no mood to
deal with incompetence again. I kept
insisting, won the battle, and had the test.
I now saved my own life this
time. The MRI revealed that I had a
blood clot in my brain in a very dangerous in-operable area – the left
internal
jugular vein. I had to make the
decision to take Coumadin, which is the medical name for Warfarin (RAT
POISIN). This was a tough decision
because if I didn’t take the Coumadin I would die for sure, and the
Coumadin
could cause a deadly brain hemorrhage as well. I chose the risk
of taking the medicine. As you can see, I made the right choice
at the time, but
eventually my brain surgeon took me off the Coumadin, after losing a
patient
who bled to death from a brain hemorrhage caused by the
medicine.
After
all that I have been through, you may be
wondering why I did not sue for tons of money.
I thought it best to let the New York
State Medical Misconduct Board investigate, and they found my
primary care physician not guilty 2
times. I was told that they felt that my case was too unusual, and complicated with
many so errors made in my care, to find him or anyone else involved ,
specifically to be guilty. I am not bitter and am using the whole
ordeal as a
learning experience. Hatred is the
worse form of disease that anyone can have, it is very destructive, and
a waste
of time and energy. I
believe with my whole heart and soul
that it is very important for my story to be heard by as many people as
possible, especially women who are dying by the day, because doctors
don’t take
their medical problems seriously enough. I have heard many horror
stories since
this has happened to me, and people need to know that they must start
taking
charge of their lives and their healthcare. If they are too sick to do
it
themselves they must appoint someone they trust to be an advocate for
them. If Arnold was not there, I would be dead and if I
didn’t take charge when I was functional I would have been dead a
second time!
Congressional
offices
in
many cases contact Social Security on behalf their constituents going
through
the SSDI claims process, so they must be aware that there are so many
problems. I wrote to ALL my elected
officials including three NY state senators, my Congresswoman, my
Assemblyman,
the attorney general, the Governor, the President, Vice President, and
various
other members of Congress with little or no response.
As a registered voter myself, I was very disappointed,
disillusioned, and disgusted that my elected officials whom I have
supported in
the polls every year, when I asked for help in my own particular case,
that the
very few who responded at all, said that I needed to be become homeless
or have
my utilities shut off before they could help me, and there was nothing
else
they could do to expedite my claim. It
was totally appalling and unacceptable to me, that never once, did they
say
that they would do anything to try and correct the flaws in the system
that
cause the horrors we SSDI/SSI applicants face.
The bi-partisan apathy in regards to this issue is not only
unacceptable, but criminally negligent behavior, and they need to be
held
responsible for it. We elected them,
trusting that they would protect, serve, and be there for us in our
time of
need. I am sad to say they have failed
miserably at their jobs, doing us a grave injustice in this area. They need to stop the abuse being committed
against their constituents at the hands of the SSA, and fix the major
corruption of this Federal program now.
Time is of the utmost importance in this matter, as millions of
SS
Disability applicants, even as I write this are suffering and losing
everything, including their lives, while trying to get their benefits. Only Congress with your urging can get the
funding and create the legislation
needed to address this crisis.
The clot in my brain and worsening
financial
situation kept me from taking the medicines and seeing doctors that
could help
me deal with this horrible existence. I
wiped out my life savings, and lived off my pension from a previous
employer
which is almost gone now. I didn’t ask for this fate and would trade
places
with a healthy person in a minute. I
then did some research and found out that I could request copies of the
reports
of the SSD IME doctor I was sent to, and the notes of the original DDS
claim
examiner that denied me, and when I received them, my worst allegations
were
then confirmed. In desperation I
contacted all my elected officials, and had to fax SS copies of their
own laws
when they tried to violate my rights under Federal Law, (Freedom of
Information/Privacy Act) when I requested copies of what was in my
Social
Security file. Once I received my SS
file, I discovered that the DDS claim examiner purposely manipulated my
medical
diagnoses on the SS form to deny my claim. Even though I filed my
disability
claim based on all the physical problems I have, as a PRIMARY diagnosis
for
disability, the DDS examiner purposely wrote depression as a primary
diagnosis
instead of as secondary one, so of course I would be denied based on
that as a
primary diagnosis. This was after I had
already submitted tons of documents to prove my PHYSICAL disability –
reports/documents that he chose to ignore.
Even though I have no real neurological problems Social Security
sent me
to a neurologist to examine me, so of course he would find nothing
wrong with
me and say that I did not qualify as disabled.
I should have instead, been sent to a Rheumatologist since most
of my
problems are caused by the numerous autoimmune disorders that I have. I also filed a formal willful misconduct
complaint against the DDS office, the Social Security Office of Public
Inquiries and the Inspector General’s office in MD.
In April 2003, I requested an immediate pre-hearing review of my
case on the grounds of misconduct and additional physical evidence. Again I had to fax copies of the regulations
on what pre-hearing reviews were, since the people at the SS Office of
Hearings
and Appeals in my state, had no clue what I was asking for. Once they got all my paperwork to request
the review, a senior staff attorney, and then a hearing and appeals
judge
granted my request and my case was then sent back to the DDS office
that
originally denied my claim. Finally it
was seen by a different DDS person who actually knew how to do their
job. In two weeks my case was approved at
the DDS
level and then was selected randomly by computer (7 out of every 10
cases get
chosen) for Federal review. It then
took another three weeks to be processed there. Finally
one month before I lost everything – becoming bankrupt,
homeless, losing my health insurance and everything I worked for all my
life, I
was approved for my SSDI benefits. It
took 1-1/2 years (12/6/01 to 6/6/03) and I did it on my own without a
lawyer.
The strange thing
is, that if you saw me, you
may never know how sick I really am, since many of my illnesses are
“invisible”
and the severe damage that many of them cause, is on the inside of my
body. One of the reasons I am
sharing
my story is in hopes to educate the general public, healthcare
professionals
and government officials about the affects of living with diseases that
are not
visually apparent. It will help the
public learn about how often illness is invisible, how to be sensitive
to a
person who faces these challenges, and also learn from their unique
experiences. Despite the fact
that the majority of the US
population looks rather healthy, these staggering statistics show a
different
story:
Nearly 1 in 2 (133
million) Americans live with a chronic
condition. This could be an illness
like cancer or rheumatoid arthritis, or a condition such as arthritis,
migraines or back pain from a car accident.
When studies are done about people with illnesses and
disabilities,
those who deal with chronic pain on a regular basis, but have not yet
been
diagnosed are often overlooked.
If it's not you, it's
someone you love. That number is projected
to increase by more
than one percent per year by 2030, resulting in an estimated
chronically ill
population of 171 million.
96% of illness is
invisible and 60% of the people are between
the ages of 18 and 64
Depression is 15-20%
higher for the chronically ill than
for the average person
Various studies have reported that physical
illness or
uncontrollable physical pain are major factors in up to 70% of
suicides, and
more than 50% of these suicidal patients were under 35 years of age
The
divorce rate among the chronically ill is over 75%
90% of seniors have at least one chronic
disease and 77% have
two or more chronic diseases
Four in
five health care dollars (78%) are spent on behalf of
people with chronic conditions
20.6% of the population, about 54 million
people, have some
level of disability
9.9% (26
million people) had a severe disability, yet only 7
million persons used a visible device for mobility. Thus, 19 million of
the people
who were defined as severely disabled, did not use a wheelchair, cane,
crutches
or walkers. In other words, 73% of Americans with severe disabilities
do not
use such devices. Therefore, a
disability cannot be determined solely on whether or not a person uses
visible
assistive equipment.
Who Hates to Hear They
Look Great? Over Half
of the Chronically Ill! - San Diego – August 2007 — In a recent survey
of 611
chronically ill individuals, done by the National Invisible Chronic
Illness
Awareness Week committee, 53.27% of the respondents said that the most
frustrating or annoying comment people make about their illness is “But
you
look so good!” Respondents answered the
survey at www.invisbleillness.com and reported the following other
annoying
comments people tend to make:
“Your illness is
caused by stress.” (14.22%)
“If you stopped
thinking about it and went
back to work.” (12.42%)
“You
can’t be in that much pain. Maybe you
just want attention.” (10.95%)
Living with a chronic
illness is extremely
difficult, as it impacts everything about one's life - the daily
schedule,
ability to work or participate in fun activities, as well as the
financial
burdens. Trying to be a parent or grandparent, spouse and child also
adds to
the challenges. On top of that, is the emotional struggle. The ability
to face
each day in significant pain, while both loved ones and strangers
believe that
you aren't "feeling that bad" or just need to "get over it"
can be heartbreaking. The feeling of "no one understands" paired up
with people's skepticism can be devastating and many people spiral into
deep
depression.
My “American Dream”
has now turned into the
“American Nightmare” through no fault of my own. I
will never, short of a miracle, or winning the lottery, be able
to recover from the financial, emotional, physically permanent damage
that this
experience has had on my life. I will
never be able to own a home, and afford to live in a safe, universally
designed, handicapped accessible, allergen free environment, which is
imperative for a person who has all of the autoimmune conditions that I
do. Again, there’s no cure for any of
my illnesses, which are getting worse by their clinical nature with
each day
that goes by, especially due to the ever increasing stressful
conditions and
worsening financial situation I have to live under.
These conditions continue to keep me in an endless cycle of
poverty, and nobody in their right mind would willing choose this
horrible existence. I continually face the
looming threat of
bankruptcy and homelessness, due to the cost of my healthcare, basic
living
expenses, and still not qualifying for any public assistance programs. I am seeing doctors or having tests now
every month and sometimes several times in a month.
These co-pays for visits add up very quickly.
Whenever a major appliance (stove,
refrigerator etc) breaks down, I cannot afford a replacement so I have
to do
without it. My car
which is over 10 years old now, is a
major source of concern and stress for me, and it is the only mode of
transportation I have to get to my
doctor appointments etc. Things by
nature are starting to wear out on my car and getting too costly to
repair now. Due to my health issues I
cannot use public
transportation, and my community greatly lacks quality affordable
alternatives
so when my car finally goes, which could be any day now, I am in
serious
trouble! I worked hard all my life and
was always a very independent person.
It is a continued source of frustration for me now, that when
something
breaks down, I do not have the ability to earn a paycheck since I am so
sick,
and be able to afford to replace it and I know I am not alone in this
frustration.
SSDI is not welfare, a
hand out, reward,
golden parachute or jackpot by any means, and most people would be hard
pressed
to survive on it. Yet, often claimants
are treated like criminals – viewed as frauds trying to scam the
system, and
that the SSA must “weed out” them out by making it as hard as possible
to get
benefits. The percentage of claims that
in fact, aren’t legitimate is very miniscule.
In 2007, the average monthly Social Security Disability Insurance
(SSDI)
benefit was only $979. Nobody in their
right mind would want to go through this process, and end up living in
poverty
on top of their illnesses, if they could in fact work. In our
country you’re required to have auto
insurance in order to drive a car, you pay for health insurance, life
insurance
etc. If you filed a claim against any
of these policies, after making your payments, and the company tried to
deny
you coverage when you had a legitimate claim, you would be doing
whatever it
took, even suing, to make them honor your policy. Yet the
government is denying Americans their right to legitimate
SSDI benefits everyday, and you should be outraged!
Keep in mind a country
is only as strong as
the citizens that live there, yet as you can now see, the Social
Security
Disability claims process preys on the weak, and decimates the disabled
population even further. I know first
hand about the pain and poverty that this problematic system can
cause.
I am using what I learned from my experience
with the SSDI program, to help those still struggling get their
benefits by
sharing information, and trying to get legislative reform of this
important
benefits program. To draw attention to
the Social Security Disability System and its flaws I have written
various
essays including “Social
Security: The Hidden Dangers of Privatization.” I don’t want
anyone else to suffer the hell
that I endure on a daily basis. I am
President/Co Founder of the Social
Security Disability Coalition an all
volunteer organization which I started with a woman in Nashville TN
named
Stephanie Varnado. She is a social
worker/activist who contacted me, offering to help in January 2003
after reading
a letter I posted on Congress.org.
We
now have a website and the SSDC has thousands of members, who are
helping each
other, some are Social Security Disability recipients, but most are
disabled
Americans at various stages of the SSDI/SSI claims process. Our
group and their experiences, are a very
accurate reflection, and microcosm of what’s happening to millions of
Social
Security Disability applicants all over this nation. I have also
authored the Social
Security Disability Reform
Petition, which also has thousands of signatures and horror stories
from all
over the country. It has been seen by
members of Congress, the media and the Social Security Administration
itself. If you visit the Social
Security Disability Coalition website, or the Social Security
Disability Reform
petition website, you will read many years worth of documented horror
stories
and see thousands of signatures of disabled Americans whose lives have
been
harmed by having to file a claim for
SSDI/SSI benefits. You cannot leave these sites without seeing the
excruciating pain and suffering that these people have been put
through, just
because they happened to become disabled, and went to their government
to file
a claim for disability insurance that they worked so very hard to pay
for. We hope to one day achieve our goal of
complete reform of this overly abusive system. A major step towards
reaching
that goal is that the SSD Coalition, now provides constant feedback
directly to
the Social Security Administration.
In July of 2004 the SSD
Coalition made (Center for
Disability Rights - Rochester) CDR Annual Disability
Rights Top 10 List.
Subcommittee on Social Security - Hearing
on the Performance of Social Security Administration Appeals Hearing
Offices - Tuesday, September 16, 2008
Full Committee - Hearing on Clearing The
Disability Backlog - Giving The Social Security Administration the
Resources It Needs To Provide the Benefits Workers Have Earned -
Wednesday, April 23, 2008
Subcommittee on Social Security - Hearing
on Social Security
Disability Backlogs - Wednesday, February 14, 2007
Subcommittee
on Social Security - Hearing
on Social
Security’s Improved Disability Determination Process - Thursday, June
15, 2006
Committee on Ways and Means - Hearing on Implementation of
the Medicare Drug Benefit - Wednesday, June 14, 2006
Subcommittee on Social
Security - Hearing on Social Security
Service Delivery Challenges - Thursday, May 11, 2006
Subcommittee on Social Security - Joint
Hearing on
Commissioner of Social Security’s Proposed Improvements to the
Disability
Determination Process - Tuesday, September 27, 2005
Subcommittee
on Social Security - First in a Series of
Subcommittee Hearings on Protecting and Strengthening Social Security -
Tuesday May 17, 2005
Subcommittee on
Social Security - Joint Hearing on
Commissioner of Social Security’s Proposal to Improve the Disability
Process - Thursday, September 30, 2004
Subcommittee on
Social Security - Hearing on the Social
Security Administration's Management of the Office of Hearings and
Appeals - Thursday,
September 25, 2003
I suggest that together the SSA and
Congress immediately set
up a task force made up of claimants who have actually gone through the
SSDI
system, that has major input and influence on the decision making
process
before any final decisions/changes/laws are instituted by the SSA
Commissioner
or members of Congress. This is
absolutely necessary, since nobody knows better about the flaws in the
system
and possible solutions to those problems, then those who are forced to
go
through it and deal with the consequences when it does not function
properly. As if things are not
already
bad enough now, they are about to get even worse, as the SSA is facing
budget
problems, employee layoffs, and office closings, just
as the growing numbers of disabled/aging population needs
their services more than ever. Congress
also needs to legislate that Social Security funds cannot be used for
anything
other than to pay out benefits and administer the program.
It is important that you also contact your
Congressional representatives on this very important issue.
Remember that disease and tragedy do not
discriminate on the
basis of age, sex or race. If you think
this could not happen to you – you could be DEAD wrong!
I alert you to the case of Dane Edwards from
the Rochester area, who applied for Social Security Disability benefits
in
October 2006, because of terminal lung and brain cancer.
When he’d call to check on the status of his
claim he was told that he must wait like everyone else, and that he
should stop
calling to inquire about the status.
He obviously didn’t have the luxury of time.
Dane will no longer be calling and he never received his
benefits. The last precious, few months
of his life were spent in anger and frustration, fighting a system,
which in
the end failed him miserably. He was 53
years old when he died on February 13, 2007 - his SSDI disability claim
still
waiting for approval. Unfortunately I
must report that stories like his are becoming more and more common.
One
of my goals was to make Rochester NY a place that would
be highly recognized by the music industry and the rest of the country so that our local talent did not feel the
need to leave here in order to “make it” in the entertainment field. We
have
tons of amazing musicians here, that are unknown to the rest of the
world. I hoped to create a community
where musicians can live and work in an environment that is supportive
of their
art, and where they could live comfortably off of doing what they love
best -
which is making music.
I
came up with a plan using music
to revitalize my city known as the “Musical Cycle of Economic
Development” and I am
President/Founder of an organization which was created before I became
so ill,
known as the Rochester
Music Coalition.
Singing, music and comedy are the only
things that really
bring me any joy in life these days.
Music and laughter are the only medicine that is truly keeping me
alive,
and allow me to be able to cope with my circumstances.
I recorded a CD in the year 2000 called
Timeless, that is a musical commentary on the violence that has gripped
our
nation. It contains an original song
which I wrote with my cousin called Columbine 99. I
wrote a poem entitled "Forever
Changed" about the WTC Attack on 9/11/01, “Gone
In
An
Instant”
about the Space Shuttle Columbia tragedy, and an essay called "Suffering
For Their Art " a commentary on the need for a
supportive
music
community in my hometown. The thing
I would love to do most before I leave this world is to sing with all
my
musical inspirations in some way – (Sting, Bono, Dave Matthews, Peter
Gabriel,
Phil Collins, Elton John, Mariah Carey, Colin Hay, Steve Perry, Lou
Gramm,
Bruce Hornsby, Edwin McCain, Coldplay, Collective Soul) and too many
other
favorites to list here – hey everyone has the right to dream right?
In
spite of
everything, I am not asking for pity or sympathy for what has happened
in my
life. I am very grateful to be able to
share my story with you. I know for a
fact that there are others who are much worse off than I, because I
hear their
incredible horror stories every day, including the stories of those who
are no
longer with us, to be able to tell them on their own.
I tell you these things so you will realize how your
life can
take a downward spiral in an instant! I
tell you these things so you can see what life can REALLY be like for
America’s
most vulnerable citizens. I tell you
these things so you will never judge others, for you may one day be in
their
situation. If you have a dream or a
goal, do not put it off until tomorrow, but pursue it NOW, or you may
never get
the chance again. Do
not dwell on the
past because you can’t change it, only reflect on it, so you can learn
from it,
and not repeat past mistakes that you might have made.
Keep an eye on and prepare for the future,
but only focus on the minute at hand because that is the ONLY thing
that is
certain, and enjoy every second of it to the fullest!
I truly believe I was saved and endured this whole ordeal for a
reason, part of it being to help others and hopefully
saving some lives in the
process. I also believe the problems
with the Social Security Disability process happened to me because I
would not
sit back and allow these abuses of the disabled to continue without
speaking up
about it. I am also in the process of writing a
book about the things that have happened to me before and after my life
changing surgery. Knowledge is power, I
have learned many valuable things from what happened
to me, and I want the world to learn from my experience as
well, before I
depart from it. My goal is to
help and educate as many people as
possible about these issues that have drastically changed my life and
get
legislation passed so nobody else ever has to live like this. When my health problems allow it, I would
also like to speak to medical students and doctors so they can fully
understand
how important it is to listen to their patients, order the proper
tests, and
truly realize the devastating effect it can have on a patient’s life
when they
don’t. I also want everyone to
understand that even the permanently disabled, who cannot earn a
paycheck, can
still make valuable contributions to society.
If even one other person can avoid these problems by hearing of
my
experiences, then that is worth everything to me. Thanks
for your precious time to let me share this experience
with you and please share this story with all of your friends and
family. Feel free to contact me with any questions you may have.
LJ Fullerton - Brain Surgery January 14, 1997
LJ Fullerton
E-mail:
ssdcoalition@hotmail.com
- click on mailbox below
Please join the Social Security Disability Coalition
Offering FREE knowledge and support with a focus on SSD reform
Please
sign the Social Security Disability Reform Petition
Read the horror stories from all over the nation
Please
ask your elected officials to introduce/support the:
Fullerton-Edwards Social Security
Disability Reform Act
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LJ Fullerton -
President/Co-Founder
Social Security
Disability Coalition
E-mail: ssdcoalition@hotmail.com
This Web Page Created By
LJ Fullerton and Arnold Van Wie