My Story, or "What?!
Me??"
In
July of 1996 I was admitted to St. Vincent's Hospital after a near-fainting
episode downtown during Spanish Market, the annual Santa Fe exhibit and sale
of traditional Hispanic artisans. After a series of tests it was determined
that I had suffered one or two "silent" heart attacks, major ones, resulting
in serious damage to my heart. My coronary arteries were all blocked, with only
one supplying blood to my heart, and it was 95% obstructed. I was, as the doctors
said, days or one Big Mac from death.
I had a very hard time accepting this and was, for the first
few days, a terrible patient. I did not fit the typical profile of the Heart
Disease victim; I was thin, active, had always led a fairly athletic life, and
my diet, while a little high in fat, was generally healthy - I ate mostly natural
foods and "health" foods, and used vitamins, minerals and herbs on a daily basis.
My only risk factors were my smoking and heredity - my mother and grandmother
had Heart Disease. But the tests, especially the angiogram, were conclusive
and I couldn't deny the truth. And the news kept getting worse; the cardiologists
were not sure I was a candidate for surgery, and without it, I would likely
die within days. My records were sent to the hospital in Albuquerque where the
surgery would be done (St. Vincent's did not do heart surgery). The surgeons
there decided that I was, after all, a surgical candidate, and I was transferred
to Presbyterian Hospital in Albuquerque for emergency coronary bypass surgery.
As it turned out, the three main arteries were not repairable
and one was completely destroyed, so two bypasses were done to secondary arteries
to resupply the remaining viable 1/3 of my heart with blood. A Medicine Man
from Taos advised us on what protections to take for the surgery, and the hospital
allowed them. A Blackfoot friend of mine, a Pipe Carrier, performed a blessing
and gave me a medicine bag, which the hospital allowed me to take into the operating
room. Friends did a sweat and prayed for me. It was a high risk surgery with
only a 50-50 chance of my surviving it. But, although the surgeon had a hard
time and they lost me a couple of times on the table, I did survive and the
surgery was considered a success. After a few days and some more tests, I was
released to go home, with half a dozen prescriptions, dietary restrictions,
extremely weak and with excruciating pain in my chest from the surgery. It took
nearly a year before I even began to feel well, after starting a cardiac rehabilitation
program and regularly adjusting medications. I went into a deep depression which
resulted in me being put on an antidepressant. Forbidden to return to any meaningful
work and not well enough for even part-time work, I moved into my girlfriend
Victoria's house, and she became my caregiver and financial support. I applied
for Social Security Disability/SSI, being assured by my doctors that this would
be necessary because they considered me disabled and that I would have ongoing
medical expenses. I tried to apply to the State Human Services Department for
food stamps and state GA Disability. And so began the 2 year nightmare no one
had either foreseen or predicted, and which neither I nor my girlfriend anticipated.
It would, before it was over, destroy the last remaining shreds of my former
life, including my relationship with Victoria.
I decided to write this partially because no one seems to
really understand the impact of a catastrophic event like this, and nothing
in society prepares us for it, and also because I think people need to understand
also the impact of so-called "Welfare Reform" and what it really has done. First
we were told by all the doctors and nurses that I would be feeling "better than
ever" in about three months following the surgery. This was simply untrue; only
rarely does healing proceed so quickly, and I found out later that it is more
typical for it to take six months to a year. But this raised the expectation
in both myself and Victoria that the crisis phase would be relatively short
and fairly soon things would get back to "normal." When they didn't and the
months went on and I wasn't feeling better or able to do more, I became frightened
and more depressed and Victoria began to feel I was malingering and taking advantage
of her. We started couples therapy through the hospital's Cardiac Rehab program,
but things kept getting worse, largely because of the financial consequences.
I had to see various doctors on an almost weekly basis, I
had nearly a dozen prescriptions which cost several hundred dollars a month,
and special dietary needs. My application for Food Stamps was denied by the
State Human Services Department on the grounds that I wa living in Victoria's
house and therefore her income was counted as mine under the Republican Governor's
"Reform" program, the most restrictive and Draconian in the nation. This program
was later struck down by the State Supreme Court as unconstitutional and excessively
harsh, and later cited the Governor and Human Services Department head with
contempt of court for their refusal to comply with the order to abandon the
Reform program and return to the prior system. Under this "reformed" system,
income was based on the Household, not the individual. If family or friends
were caring for a disabled person or single mother, the income of all members
of the household - related or not, regardless of the actual status of the individual
(renting a room, etc.) was considered as the individuals. This resulted in thousands
of people in New Mexico being dropped from any form of assistance, with no recourse
left for any help. In addition, benefits to those remaining was limited to a
two years in a lifetime. New Mexico is a poor state with a high percentage of
Hispanics and a striking gap between rich and poor. Since the Hispanics in New
Mexico tend to have extended families and take care of their sick and elderly,
and many are single mothers, the reforms were particularly devastating. Even
under the old rules, there was no medical assistance available for someone in
my situation, being limited to pregnant women and their children under the AFDC
program. In my case, my only recourse was Social Security. I do not have much
family and none in the Southwest; my mother and sister lived on the East Coast,
my mother was on Social Security and not well, in her 70's, and my sister worked
for the Post Office. I did not have a support system in Santa Fe, due to a complex
situation at my former place of employment, the Institute of American Indian
Arts which had resulted in most of my friends in the Native community - former
faculty and staff at the Institute and my primary social group - having to leave
the area to find work. Victoria was my sole support, financially and emotionally.
Social Security denied my claim outright. I filed my first
appeal. I was later to find out that nearly all applications were automatically
denied in New Mexico and that the "reformed" rules for Disability made it nearly
impossible to be approved. Both Victoria and I began to despair of a solution.
I did get one bit of relief when, against my expectations, I was approved for
state General Assistance Disability, which meant I got $231 a month - the maximum
allowed - and would for two years if I kept being approved, which I had to be
every six months. However, if I were approved for Social Security Disability
and/or SSI, I would have to repay it from any retroactive award money I might
receive. This required getting medical records and other evidence to "prove"
my case; I was told point blank that my doctor's opinions did not matter, that
my case would be reviewed by the Department's medical board (which did not necessarily
include cardiologists) who would never see me nor examine me. I also had to
get to the HSD office since there were no "visiting" social workers, difficult
for me because I had no car and had to share Victoria's truck, which meant coordinating
schedules. This only added to the stresses we were undergoing.
During this time Victoria was carrying the whole load, not
only her own life and her jewelry business, but my care, my support and my expenses.
The little bit I got from the state only covered part of my medicine expenses,
and not much else. This was to go on for many months, and the resulting stress
just kept increasing. Instead of getting better in three months, I developed
Congestive Heart Failure. Our relationship was crumbling under the pressure.
My Social Security appeal was rejected. I filed a request for reconsideration,
nearly 6 months after my initial application.
Finally, after almost a year of this, the stresses became
too much, and Victoria decided she couldn't go on supporting me. Nor did she
care to continue in a relationship with me. She had become angry and bitter
and withdrawn, and I became more depressed, feeling utterly overwhelmed and
helpless. I could not work even if any work were available, which it wasn't;
if I did go to work the consequences would be first I would be ineligible for
Social Security and Medicare, would not get my medical bills - now up to almost
$40,000 -- paid by Medicaid, and most likely my condition would deteriorate
or I might even die. In late summer of '97 my second appeal was rejected by
Social Security. I then hired a lawyer to handle my case and he filed a request
for a hearing, the next stage of appeal. By this time I had learned that almost
no one was ever approved before this level, and even at this level the State
of New Mexico had the highest rejection rate - 55% - in the country. And the
highest rate of negative rulings overturned - 78% - at the next and last level
of appeal, which could take up to eighteen months. This was very nearly the
last blow; Victoria insisted I move out, even if it meant getting a job with
all the possible consequences. She offered to give me enough money to get an
apartment and after that I was on my own. I was devastated. Many times during
this period I considered suicide, but that has never been an option for me,
no matter how bad the situation might be, and things had been very bad many
times in my life.
I found a tiny apartment near the center of town with a natural
foods market and laundry and bus stops nearby, and moved out, just before my
49th birthday. Fall came and Social Security still had not set a date for my
appeal hearing. My lawyer wrote the hearing judge to request an approval on
the record, and sent it with hundreds of pages of medical records and doctors'
letters. I continued with my cardiac rehab and therapy. Victoria continued,
reluctantly, to pay my rent and help with groceries, not wanting to see me end
up on the street, which was quite possible. Winter was approaching; I had been
using her truck from time to time, but as she began to rebuild her life apart
from me, that came mostly to an end. The only good thing during this period
was that I was finally beginning to feel better; the pain in my chest from the
surgery had subsided and I had a bit more energy. I had begun to re-establish
communications with some friends, even doing a little theatrical work. Then
the ground was pulled out from under me again.
In late September, while walking to a doctor's appointment,
I suffered a stroke, which caused me to fall into an arroyo alongside the road
and break my left arm. It was a horrible experience; I was completely disoriented
and unable to control my body; I didn't even know I was falling until I hit
the ground. I didn't know my arm was broken until I tried to move it and the
pain hit, the worst pain I've ever experienced. I was taken to the hospital
again, thanks to a passerby who answered my calls for help. At the hospital,
my arm was splinted and I was taken for X Rays, CAT scans and a sonogram of
my heart. They determined that a blood clot had formed in the damaged part of
my heart and a piece had broken loose, lodging in the arteries in my right brain,
causing some damage and affecting my left side. My broken arm didn't heal right
with just the splint and a cast and would require surgery, a rod through my
humerus with screws holding it together. I had lost control of my bladder and
required help to use the bathroom and take a shower. I would require several
weeks of therapy to regain strength and control on my left side. I was lucky;
the stroke left no serious deficit, I regained bladder control after a couple
of weeks, and slowly regained strength, although I would have to walk with a
cane and relearn some skills, such as typing. And it would take months for the
arm to heal completely, and require months of physical therapy to regain full
use of it. More bills, from the hospital, the lab, the doctors...and still nothing
from Social Security...I went home the end of October.
I was only minimally able to care for myself. An Occupational
Therapist from the hospital came to my apartment to help me with basic tasks,
and Victoria arranged for meals to be delivered by Kitchen Angels, a local group
who provide free hot meals to people in my situation, and I re-applied, this
time successfully, for food stamps, receiving $123 a month. But I continued
to weaken and lose weight, and my doctors and friends began to fear for my life.
Then in November I got the notice that the state had discontinued the GA Disability
pogram. I had been using the money mainly to pay for the dozen prescriptions
I now was taking, and make minimum payments to the eleven doctors and labs I
owed, now totalling about $50,000.00, to keep them from turning the accounts
over to collection agencies (my hospital bills had been covered by the County
Indigent Fund). Then I got the word from my sister in New Jersey that my mother
had died over the Thanksgiving weekend. Things were darker than ever. Whatever
little hope I had held on to had evaporated. I felt the life leaking out of
me and knew I was dying, and everyone around me knew it also.
In mid-December at Victoria's prompting I saw an Apache Medicine
Man, who performed a critical healing which brought me back from the brink of
death. The darkest hour passed and I began to think about living again. I was
eating better thanks to Kitchen Angels and food stamps, and in December the
state had been forced to reinstate the GA Disability program, so I was getting
a little money. I had returned to cardiac rehab, though with more limitations
than before, much weaker and having lost nearly 20 pounds.
It was still hard but I found some resources; the City had
a program to provide low-cost transportation by cab that I now qualified for
and reduced fare bus passes. But I had new prescriptions which I couldn't afford
but needed to insure my survival. Still nothing from Social Security. I had
no more sources to tap for funds, andVictoria was running out of money as well
and unable and unwilling to help as much as previously. I investigated other
sources of help, for rent and food and so on, and found that, for someone in
my position, there was basically none available. It was now nearly January,
following a dismal Christmas season. I did not have money for rent, I was running
out of several prescriptions and had no money to get them refilled. I had food,
for now, but my food stamps would run out in January and I didn't know if I
would be re-approved. Same for GA Disability.
In mid-January I got the news that the Social Security hearing
judge had approved my case on the record. I would be getting $740 a month and
retroactive SSI benefits, including Medicaid, for August 1996 through January
1998. My medical bills during that period would be paid and I would get a large
lump-sum retroactive cash benefit amounting to several thousand dollars after
the state was repaid for the GA benefits I had gotten. I would continue to receive
Food Stamps, but they would be reduced to $55 a month. I would not, however,
under the new "reformed" rules, be eligible for Medicare until January of 1999
and my case would be reviewed in December of 1999, and because my Disability
payments were too high, I would not be eligilbile for SSI and therefore Medicaid.
It was an enormous relief. I was able to pay back Victoria at least partially
for the help she'd given me, and would be able to live, although very frugally.
But I would have to cover any new medical expenses myself. The retroactive money
would not last long.
It is now almost April, Spring has arrived. I take the bus
to St. Vincent's three times a week for rehab and therapy (taking care of my
health has become my life). I still need the cane to walk, which makes many
things, like grocery shopping, difficult. My arm is only about 70% healed and
I have only partial use of it. I am still in a lot of pain. I am still unable
to work, and I continue to be at risk for another stroke and/or another heart
attack. I am still depressed although the medication and therapy has helped.
Victoria and I have remained friends, although becoming more distant all the
time. Everything I was and everything I had, all my hopes and dreams and expectations,
have been utterly destroyed, and I continue to experience a severe spiritual
crisis. Only in the last few weeks have I been able to do anything creative,
such as my web site and telling this story.
I am alone and likely to remain that way. I live with constant
pain and loneliness and fear, with no hope of a better future. The medicines
I have to take have had some troubling side effects. I try not to feel sorry
for myself over all this and accept my own responsibility for - at least - part
of it. But it's very hard, and the question I have no answer for- nor can anyone
give me an answer - is; why? I don't mean the physical or pathological why,
but the metaphysical why. What purpose is served, what lesson is this supposed
to teach? And what do I do now? For now the only answer I have is to continuing
doing what I must every day, take care of my cats (one of whom is diabetic)
and not look very far into the future. For now, that's about all I can do.
I consider this account part of my therapy; partly to help
regain my typing skills - it's taken me months to write this - and partly to
share my experiences in the hope that, somewhere out there, someone facing similar
things might have a better idea of what could happen, and that they are not
alone. I wish someone had told me, when all this started, what I would be facing.
No one did. Neither I nor Victoria expected it to take so long to recover from
the surgery. Neither of us had any idea a stroke was possible, or that congestive
heart failure was an expected result of the damage to my heart. No one ever
warned us of this. Neither of us had any idea it would take more than 16 months
to get Social Security Disability. Neither of us had any idea what the impact
of "welfare reform" would have on me. If we had known, if we had even had an
inkling of an idea, things would not have been so hard, things might have gone
differently.
My message to others out there who might be facing something
like this, is; BE WARNED! Doctors will lie, with the best intentions...insist
on the truth and the whole truth, and be prepared to face it fully. Realize
that there is no "safety net" any more. If you are in a position to be forced
to rely on public or governmental aid, know how hard that is, how long and difficult
a process it is, and how little you will actually receive; if you are faced
with applying for Social Security Disability/SSI, GET A LAWYER right away. Social
Security lawyers work on a contingency and are limited by law to a maximum of
25% of retroactive benefits; since it can take more than a year to get approved,
this can amount to a large sum. You may not be approved without a lawyer. Find
out all the help, public and private, that might be available to you and take
advantage of it; you will need it. A therapist is essential, because there will
be continuing severe emotional and mental consequences which must be dealt with.
There are support groups, such as Mended Hearts, which can be very helpful,
especially in the early crisis phase. If you have a faith, rely on it even in
the face of an urge to deny it. At bottom, it will be you and the Creator who
will get you through it. The question you will have to find the answer to is,
is it worth it? That's an answer I have not yet found.
I will turn 50 in a few months. I may not live another ten
years; the odds are against it. Or I may live twenty. I don't know. None of
us ever knows. I don't know what kind of life I will have. But if I can help
even one person get through a catastrophic event like this, it will have had
some small meaning.
I have provided some links on the MEDICAL
INFO page and the HEARTLINKS
page for resources and information. I hope you reading this never need to use
them, but if you do, my compassion goes out to you, and I pray your path is
smoother than mine has been. There is a lot more to this story, and maybe some
day I'll tell it all. If you have found this account interesting or helpful,
send me an email!
I would like to close this account with an expression of
deep gratitude to those who have helped me through this: first and foremost,
despite everything, Victoria. Without her I would probably not be here today,
even though I am here today without her. Such are life's ironies. Also Black
Bear (Stephen LaBoueff) and his wife Joy; Kathy Travis; Dick and Mogi Hogle;
Bill Yellow
Robe, Jr.; Felipe Ortega, who may have saved my life; my dear friends Carolyn
Krueger and Judy Davis; my sister Gretchen; Lozen Patty Phillips, my e-buddy;
John Berry, Trika Deer, Lee Brewer and all the folks on the Cyber Rez; the people
at Kitchen Angels; and the doctors, nurses and therapists at St.
Vincent Hospital in Santa Fe (especially Maria, Susan, Hannah and Shannon
of Cardiac Rehab) and Presbyterian
Hospital in Albuquerque; my therapist Dr. Katherine January, and Drs. Harvey
Robles, William Davies and Kyle Cooper of the New Mexico Heart Institute Santa
Fe and in Albuquerque Dr. Diane Sansonetti, who performed my surgery. Also thanks
to my attorney, Michael Leibman. There have been others, and my gratitude goes
out to them also, but these few kept me going when I thought I couldn't go on
any longer and provided help above and beyond the call of duty . A special thank
you to a remarkable lady, Mary Scott, yoga instructor, nurse and friend, who
did so much for me, and Kelly Murphy, my acupuncturist, who provided her services
pro bono and continues to be a vital part of my healing.
ADDENDUM, September 9, 1998
Thanks to a wonderful lady named Mary
Siegel, I have been able to leave Santa Fe and relocate to the Tulsa, OK
area. I am starting a new life and am hopeful that the hardest things are now
behind me.
STATUS
REPORT, August 1999