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!

I am now unable to work and have become permanently disabled. For 30 years of my life until I became ill, I contributed to the Social Security Program as many millions of people do every day.  I never expected to have to use those benefits until I was old enough to retire.  In December of 2001 I applied for Social Security Disability which I assumed would be there to help me in my time of need. I had heard nothing but discouraging stories from others but figured every case was different and anyone with the laundry list of illnesses that I have would surely be able to get the help that I needed. I was sorely mistaken and the following is what I have discovered in the process.  

Social Security Disability (SSDI), is an insurance plan administered by the Federal Government that is paid for by FICA Tax deductions out of American's hard earned paychecks.  There is a huge shameful scandal involving this program, that most Americans know nothing about unless they need to apply for this benefit themselves.  It’s supposed to be a safety net for millions of disabled Americans, but because of current program problems, the process of getting SSDI benefits can cause devastating, irreversible harm to your health and financial wellbeing, and it affects every aspect of a claimant’s life. It often exacerbates/creates new health issues, and many lose all their financial resources, their homes, even their lives while waiting for help.  If you don’t suffer from depression before applying for benefits, chances are you will, in fact many contemplate or attempt suicide.

While the majority of Americans were shocked at the reaction of the Federal government in the aftermath of hurricane Katrina, I wasn’t surprised at all.  Nowhere is this more evident, yet rarely mentioned, than in the way the Social Security Administration treats the disabled population of this country.  Americans saw when hurricane Katrina struck, how the poor and disabled were left to die in the streets when they needed help the most.  The SSDI/SSI claims process has been systematically destroying disabled Americans for decades, and Congress as a whole has failed miserably to do anything about it.  I shudder to think of how many more lives will be further ruined or lost, when the mentally and physically disabled victims of Katrina, other natural disasters, 9/11 victims who survived that day, but are now disabled and facing a similar fate, and the other disabled Americans in general, encounter their next experience with the Federal government as they apply for their SSDI/SSI benefits.  Also nothing is heard about the Veterans who are injured in the line of duty and have to go through this same scenario to get their benefits too.  There are cases of Veterans rated 100% disabled by the VA who get denied their Social Security Disability benefits and end up living in poverty on the streets.  Horrible treatment for those who protect and serve our country.  Now, because of the endless cycle of poverty that has been created, SSDI/SSI claimants are often viewed, as the world witnessed first hand during Hurricane Katrina, as “disposable” citizens, yet their millions of horror stories of homelessness, bankruptcy, destruction and death at the hands of the SSA, never

make the news. 

illions of people across the country become disabled unexpectedly (over 6 million people since the year 2000 applied for long-term disability benefits – over 300,000 file annually in NYS alone).  I find it incredulous that the government has done virtually nothing to initiate reform of a system that is wreaking havoc on the weakest citizens of this nation.  They obviously don’t care, as this is how they keep your money from you, in order to use it for “pork barrel” spending, catering to corporations and special interest groups, investment in other countries, financing wars, or outer space travel while the disabled are suffering and dying here at home and to date our cries for help have continually been ignored.  Over 68% of claims are denied at the initial filing for benefits.  It can take up to 1153 days (3-1/4 years) or longer for a claim to be processed if it’s denied at every level which often occurs and the waiting time continues to increase. 

After filling out several pages of paperwork, which I was told was greatly reduced from what it had originally been, and submitting a huge stack of medical records supporting my claim, I was told that it would take 4-6 months to go through the process.  I was shocked and asked the caseworker at SS what I was supposed to live on, and was told to apply for social services (Medicaid, food stamps and cash assistance) while my claim was being reviewed.  I did just that but was denied any help based on the cash value of my life insurance policy, which is not even enough to bury me when I die.  Due to all my illnesses if I cashed in that policy I would never be able to get insurance again!  That process and paperwork was very difficult and humiliating and then to be denied, just added even more to my stress.

Often SSDI/SSI applicants are forced into poverty while waiting for their claims to be processed, and many have to apply for other state funded programs such as Medicaid, food stamps and cash assistance, who wouldn’t have needed them, if their disability claims were approved in a timely manner.  Another very stressful demeaning process to say the least. This causes an enormous burden across this nation, on those state Social Service programs.  This problem would be greatly reduced if  the Federal SSD/SSI program was fixed, and the states would definitely reap the benefits in the long run.  If a healthy person files for Social Service programs and then gets a job, they do not have to reimburse the state once they find a job, for the funds they were given while looking for work.  Claimants who file for state Social Services assistance while waiting to get SSI benefits in many states, have to pay back the state out of their meager disability benefits once approved, in most cases keeping them below the poverty level and forcing them to continue to use state funded services for the rest of their lives in addition to the Federal SSI program.  They are almost never able recover or better themselves, since they can no longer work.  This practice of pay back to the states out of SSI retro benefits is discrimination against the disabled, and needs to be eliminated. 

I was hoping beyond hope that my SSDI claim would be processed and accepted but on 4/25/02, I got the incredible news that my claim had been denied!  I filed for an appeal, had to go through an even more complicated process, and was told it would be at least August  of 2003 before I even got a hearing if I didn't die first - where is the justice?  I also discovered that the Social Security Disability claims process is currently structured to suck the life out of it's applicants in hope that they give up or die, trying to get their benefits.  It is common knowledge on the streets and in legal circles that it is RARE if anyone gets accepted the first time they apply and it is set up to discourage everyone, even those who feel brave enough to tackle the system.  I cannot understand how it is possible that anyone could read about all the medical problems I have, and it not be totally transparent that I should qualify for benefits.  I had heard too many horror stories in waiting rooms and other places I’d been, of people who lost everything, were in homeless shelters, totally bankrupt, no health insurance, and still having to deal with the stress of their illnesses.  I know first hand what they meant now.  Something is extremely wrong when you have to deal with the pain and suffering physically and mentally that comes along with the illnesses you have, and then have to struggle so hard to get the benefits that you have worked for all your life.  This program is also set up to line the pockets of the legal system, as you are encouraged from the minute you apply to get a lawyer.  Why should you  need to pay a lawyer to get benefits that you have earned?  It is built into the claims process that is in a lawyer’s best interest for your case to drag on since they get paid 25% up to $5300 of a claimant’s retro pay, so the longer it takes to process a claim, the more they get.  It is an automatic disincentive for them to help speed up your claim.  This is highway robbery without the ski mask and gun and this travesty needs to change immediately!  Instead SS should provide claimants with a listing in every state, of FREE Social Security Disability advocates/reps when a claim is originally filed in case their services may be needed.

I didn't know at the time what constituted a dire needs case in the eyes of the Social Security Administration, but I should think that not being able to afford health insurance, medicine, other necessities of life, and wiping out all your financial resources when you have no income at all because of your inability to work, is a dire need, but nothing could be farther from the truth!  All my incurable diseases got worse with each day that went by, due to the ever increasing stressful conditions I had to live under - yet that was not even considered a dire need!  Worsening health doesn’t seem to be a factor in speeding up SSD claims, as there are several reported cases of people who have died while waiting to get their benefits.  I found out after, that a dire needs case in the eyes of the SSA means that you have to prove in writing, that you are going to have your home foreclosed on, be evicted from your apartment or have your utilities shut off.  Nobody should ever have to deal with that sort of thing when they are sick!  This is outrageous when something this serious, and a matter of life and death, could be handled in such a poor manner.  No other company or other government organization that I know of operates with such horrible turn around times.  If any other corporation in this country did business this way, the majority of employees would be fired on the spot, and the company would be shut down within a year, yet these problems have been growing worse for decades.   

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.

Due to the enormous wait to get my SSDI claim approved, I had to wipe out my life savings and live off my pension from a previous employer which is totally gone now.  All the SSD retro pay is gone now too – used to pay off debts incurred while waiting for approval of my benefits, which are no where near enough to live on for the rest of my life.  Under Federal law, there’s a five month benefit waiting period, and five months of back money withheld, which I will never see again.  SSDI recipients must also wait another 24 months, in addition to the 5 month waiting period from disability date of eligibility (the date that SS determines that you were officially disabled) in order to qualify for Medicare benefits.  As a result I didn’t become eligible for Medicare until June 2004, having to spend over half of my SSD check each month on health insurance premiums and prescriptions, not including the additional co-pays and fees on top of it.

For some unknown reason people are under the mistaken notion, that once a person is finally approved for their SSDI/SSI benefits, that everything will be fine, and their life will suddenly return to “normal.”  Sadly the opposite is the reality of what the majority of the disabled have to deal with, since the devastation as the result of the SSDI/SSI claims process, often leaves permanent scars on their lives as it did mine, from which they are never able to recover.  Plus there is always the stress of having to deal with the SS Continuing Disability Review Process every few years, where the threat of having your benefits suddenly cut off constantly hangs over your head. 

UPDATE 2009:
  Since my brain surgery in 1997, I take an aspirin a day and pray as my only treatment for this huge clot in my brain.  I also now suffer from several incurable autoimmune disorders including: Scleroderma, Raynaud’s Disease, Rheumatoid Arthritis, Fibromyalgia, Calcinosis, Sjogren’s, Telangiectasias and Hashimoto’s Thyroiditis  which I believe were caused from my autoimmune system working so hard to fight the brain infection, that it never turned off, and is now is attacking all the other parts of my body.  I was hospitalized again in the Spring of 2001, from what I thought was a heart attack, but was ruled to be a result of my autoimmune system attacking my esophagus, causing severe pain and esophageal reflux disease. Scleroderma is a collagen disease, which in its extreme form hardens tissues and vital organs throughout the body and eventually kills you. The worsening Rheumatoid Arthritis causes fatigue and lots of pain in the joints throughout the whole body, and Fibromyalgia causes major fatigue and pain in the muscle tissues and nervous system.  The Calcinosis has caused very painful stone like calcium deposits to form on my joints and fingers.  As my Raynaud’s disease worsens each year I face the real possibility of hand/arm – foot/leg amputations, and damage to my internal organs as well, and I suffer from very painful ulcerations all over my fingers, which I endure for weeks at a time until they heal, only to recur again later.  The only medicine I can take to try and reduce the symptoms does not help much at all.  In July 2004 I had surgery to remove stage one melanoma skin cancer.  I have severe neck, spine and back pain, numbness, tingling and pain in my arms, hands and feet, Osteopenia of the hips, Osteophytes/Osteoarthritis in both  knees, and Plantar Fasciitis in my left foot which makes it painful to stand or walk.  I have severe headaches and nosebleeds, irritable bowels, memory loss, inability to sleep or concentrate, anxiety and situational depression as the result of all my health problems and worsening financial situation.  I am very anemic to the point where I needed IV iron infusions, but they made my irritable bowel symptoms worse, so now there is nothing I can take to stop the anemia.  I was just diagnosed in 2007, with having an En Plaque Meningioma (brain tumor along the tip of right temporal lobe) growing on the surface of my brain, behind my right eye.  Due to my medical history, shape and location of the tumor, any further treatment is not feasible at this time, so my brain surgeon is going to monitor it with regular MRI’s for now. I also discovered that I have Celiac disease – allergies to Gluten/Gliadin, wheat, rye, oats, barley, malt, maltodextrin, whey, wheat starch, modified food starch, bran, orally ingested grain alcohol, and  Diverticulosis so I must also avoid all nuts, kernels, seeds etc.  I must read all labels on any food that I purchase/eat and any medicines that I take. and anything that I can eat/take now is often very expensive.  It has made an already severely compromised lifestyle even more unbearable.  Since my body is under so much stress I have frequent very painful Shingles attacks.  In addition I have way too many more health issues to list here, which fill 2 pages of 8x10” paper single spaced. Since there is no cure for these diseases, I just live each day as if it will be my last, making the most of every second that I have. To learn more about some of the various diseases I have, check out the following websites:


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.

Note: Used with permission granted by Lisa Copen – National Invisible Chronic Illness Awareness Week - Founder & Coordinator
The source for these statistics and information on “invisible illness” is listed here:

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. 

I have recently written a proposal for Congressional legislation titled the Fullerton – Edwards Social Security Disability Reform Act.  I have been fighting so long and hard for these changes, and I only hope I live long enough to see my proposals become a reality.  A personal goal of mine is to one day speak before Congress, to raise the awareness of this crisis situation.  I have also submitted written testimony for the record several times to the House Ways And Means Committee hearings on various Social Security related issues which can be read at the Hearing Archives – House Ways & Means Committee - Statements of Linda Fullerton, Social Security Disability Coalition, Rochester, New York: <>

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
©Copyright 2004 – Revised ©Copyright Writers Guild April 2006/September 2007
NOTE: Unauthorized use is strictly prohibited

LJ Fullerton Brain Surgery January 14, 1997

LJ Fullerton - Brain Surgery January 14, 1997

LJ Fullerton
E-mail: ssdcoalition@hotmail.com - click on mailbox below


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