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HIV/AIDS: Moving
Forward
by Bradford McIntyre
While living in Kitchener/Waterloo, Ontario, I learned
I had been infected with the HIV virus. Swollen lymph glands,
and every test except HIV, led my doctor to advise me to be tested.
With the HIV results coming up positive for the virus and, the
stigma attached to AIDS at the time, I choose to go to another
city and find out more information and what to do about it. I
decided to go to Hamilton where I knew no one. McMaster University
Hospital was opening a new HIV/AIDS clinic and, I would be one
of the first patients.
On November 28th, 1985, at McMaster University Hospital
in Hamilton, Ontario, I was told by an AIDS specialist to go home
and inform my family, arrange my finances and funeral; I had six
months to live. Needless to say, those first six months were hell
and filled with fear, but I did not die. Given 18 months after
that, then two to three years, and even then, possibly five. Life
during those first four years of living with HIV/AIDS became years
of fear of dying and loss. Loss of friends, family, career, home,
partner and health.
I am an advocate for active health and have been
involved in many aspects of healing mentally, emotionally, physically
and spiritually, my own and others. My illness showed me how uniquely
destructive AIDS is. I also discovered that the emotional distress
that accompanies AIDS can be almost as debilitating as the illness
itself. Because of that realization, I began to study the effect
emotions have on the onset and course of the disease. One of the
most important facts I learned is: the belief that everyone with
HIV infection dies of AIDS, is a dreadful myth. HIV/AIDS can cause
death, but more often NOW, thought to be more like that of a chronic
illness, and treatable. The truth is that there are people today
to whom HIV/AIDS has not caused death. This information brings
joy and hope to the heart of any person who has ever dreaded the
onset of HIV/AIDS.
I was told the virus would kill me. Repeatedly this
is expressed to myself and others during discussions with physicians.
Patients coming out of doctors' offices and AIDS clinics faced
with fear, conveyed by physicians. However, I do not feel that
this is proper dialogue. This kind of dialogue does conjure up
fear in most individuals, affecting them psychologically as well
as physically. AIDS patients don't have to be hopeless, helpless
and passive in the face of the illness. There are many actions
they can take as partners with their physicians that are likely
to improve the quality of their lives and, may increase the possibility
of good health or recovery. Isn't that liberating and empowering?
AIDS patients can use many things to join with their physician
in the fight for recovery. Nutrition, exercise, supplements, alternative
therapies, using guided imagery, controlling stress, avoiding
pain, making plans for the future and, many others that may have
a positive effect on the course of the illness.
When it comes to how we view HIV/AIDS, the most
visible is the fear, illness, disease and death tolls. What we
don't see, are the great numbers of individuals infected with
the HIV virus, living! We don't see or hear about the countless
individuals who have been infected, who are not using HIV drug
intervention. We must not, we can not, discount the ability of
individuals to have a positive impact and create wellness, using
every available means to combat the HIV virus. The fear associated
with HIV/AIDS has kept us in the dark about this. Many fear loosing
their family, friends, home and job, causing people to hide the
fact they have been infected with the HIV virus.
So no one can see, hear, or know the truths of individuals
living with HIV and AIDS. Most often when individuals die from
HIV related illness or AIDS, the funeral announcements rarely
say HIV/AIDS was the cause, but use cancer, heart disease or any
other camouflage. How can we tell the real number of HIV related
deaths? How can the public know and understand HIV/AIDS, without
the truth?
We don't see those who benefit from the drugs and
have their health restored, returning to the work force. We don't
see or hear about individuals who test positive for HIV or have
AIDS, in relationships, falling in love. We don't see the relationships
where one person is HIV positive and the other is negative.
We don't see individuals living a happy and full
life, whether it be with or without drug treatments. We don't
have people coming forward to tell their side of HIV/AIDS. How
are we going to get people to come forward when the stigma attached
to HIV/AIDS has created so much fear? People are hiding their
HIV infection, yet it makes no sense to believe everyone who is
infected with HIV will get sick or die.
There are individuals who may never develop HIV
opportunistic infections or disease for many years, or ever. But
they are fewer than those cases having to live with the roller
coaster of high and low energy, of ups and downs of HIV related
health problems-fatigue, nausea, diarrhea, neuropathy as well
as illness from side effects of the HIV/AIDS medications. These
"cocktails" are no fun as anyone on them will confirm.
In general, health becomes a full time job to stay well and alive.
I know, I have been living with HIV going on 17 years. Moving
forward each time, searching for whatever means and tools required
to be healthy, and continue to show up for life!
For years I chose not to go on HIV/AIDS medications.
In 1991, after six years of physicians telling me I would progress
to disease and die if I did not take the medications, I finally
agreed to taking AZT. Unfortunately after 8 months on the AZT,
I could not tolerate AZT and developed and suffered from life
threatening side effects. Among them, neuropathy, a deterioration
of the nervous system in my legs. I stopped taking the medications!
Early on treatment consisted primarily of AZT, every
four hours in high dosages. Today the dosages have been reduced
considerably and AZT is still used in combination therapy. Also
AZT has been used successfully to prevent the transfer of HIV
infection from mother to child, at child birth. Unfortunately
many died due to HIV illness and the toxicity of AZT. However,
many more benefited, many lives saved. Many people lived on until
a time when newer, more effective drugs became available, who
are living healthy, productive lives today.
Although given the latest drug treatments and decline
in deaths, still physicians convey a dialogue with patients that
promotes fear. Patients are not recommended to take HIV drug treatments,
but patients are told to take the drugs or they will progress
to disease and die. Physicians should be giving test results and
recommendations for possible intervention and treatments without
this negative dialogue and giving support and hope to patients.
Many may give up and not pursue healthy initiatives given the
situation was conveyed with less than a hopeful dialogue. Unfortunately
this is not just occurring with HIV but with many physicians treating
all types of illness and disease. Many lives have had a seriously
impact emotionally by this negative dialogue.
Individuals involved in First AID, paramedic's,
doctors and nurses in emergency rooms and hospitals, they all
know first hand the importance to be calm and give patients confidence,
avoiding panic and fear! This is equally as important in a physicians
office, and what physicians have been taught and trained to do!
It is extremely important for physicians to convey test results
and possible treatments accurately and without personal opinions,
sarcasm, ridicule and fear tactic's. Conveying all available treatments
and means, to provide help in a supportive and positive way. When
relaying information, doctors must presume that the patient does
not have any previous knowledge of their problem. Imagine relaying
information to a patient as if they know nothing, ensuring they
understand as much as possible! NOT placing limitations on a patient's
life!. One such purpose of the physician, is to help HIV/AIDS
patients learn what they need to know to fight for their recovery
as partners with their physicians. Making individuals aware of
how much control they have over their lives.
Two and half million Canadians suffer from depression
and many individuals infected with the HIV virus are on anti anxiety
or anti depression medications. Consider, to what extent information
may undermine health and lack of purpose, as well as affecting
or undermining other areas of a person's life. It is important
that we teach people not to be victims. Many health professionals
do nothing to elevate stress and contribute to that stress in
avoidable ways.
Just because someone tests HIV positive, this does
not automatically mean they will get sick and die. There are people
who have been infected since the very beginning of the HIV/AIDS
epidemic, happy, healthy and alive, who are not on any HIV/AIDS
medications. In fact, there are some individuals infected with
the HIV virus, who have never had any immune suppression or virus
replicated in their bodies. For years people have been put on
HIV/AIDS medications just because they tested positive. This was
known as " Hit them hard. Hit them early ". Others,
including myself, have written to government and the media speaking
out against this practice. Finally about three years ago this
practice was halted. I celebrated that! Unfortunately this depends
on where you live and who your doctor is. There are still physicians
putting people on HIV/AIDS medications just because they test
HIV positive!
When told I had six months to live, I could never
imagined anything worse. But as time past I would find myself
faced with one health crisis after another. I knew I could not
cope with whatever came next, unless, I seriously took responsibility
for my life and found the emotional support and strength needed.
From the beginning, when HIV first hit the gay community,
the lack of treatment forced people into action. They sought out
alternative therapies and supplements and created a network, for
wellness.! In some cases, taking responsibility for their life
and health has been overwhelmingly effective. Out of a probable
17 years or more living with the HIV virus in my body, I have
gone without drug treatments for 13 of those years. But we don't
see or hear this side! We also miss seeing and hearing about individuals
engaged in drug treatments, who go off their medications for months
and even years, with success.
Recognizing the ability of the body to heal has
promoted many to choose to combat HIV in a non-medical direction.
Often, people were effective in preventing illness and disease
for years before drug intervention was ever necessary. Others
have gone on living, never having any sign of HIV/AIDS related
opportunistic infections, illness or disease. For some who have
tested positive, there has never been any virus replicated in
their body. Equally so, many people who are on drug treatments
have learned to address the importance of diet, exercise, alternative
therapies and supplements, mind, body, and spirit.
Creating a healthy environment for the body can
be address in many ways. Many people are in touch with their bodies
and have incorporated complementary or alternative therapies/herbal/botanical
and dietary supplements that contribute to their wellbeing. Recognition
of these methods by the medical profession is lacking. It has
been my experience that insufficient attention is given to the
patient who is aware of his or her health and body. When a patient
includes alternative therapies in conjunction with medical resources,
frequently, anything other than the medical resources is ignored!
Government, like the medical profession, lacks education
about these therapies, so very little or no money goes towards
studies, for one reason or another. With some therapies, it seems
that there are too few ways for the pharmaceutical companies to
profit.
I searched for everything and anything to help heal.
Over time I have practiced and learned to be healthy emotionally.
While learning to be healthy emotionally, I healed physically.
I had felt so awful emotionally, that for years it affected me
physically. Even when I was not really sick, it was as though
I was, due to the emotional bombardment I directed to my body.
By directing myself to heal my body and from the knowledge that
came to me through complimentary, alternative teachings and practices,
I was aware that something else had occurred. Healing emotionally
brought the realization of the profound effects that my emotions
produced upon my body. It makes sense that as I healed my mind,
it affected how I felt physically and healed my body. At least
when I was ill physically, it was only physical. Emotionally I
was in a good place and not contributing to, or creating emotional
pain.
Throughout the years, there have been many different
things that I have learned. In 1995 I moved to Vancouver where
I found there are countless numbers of people involved in alternative
therapies, which I was not aware existed. I educated myself and
investigated and talked with those involved with and practicing
these therapies. I gathered literature and supplies that I needed
in order to incorporate some of the methods and practices of these
therapies, into my life. I discovered because these are alternative
therapies, there is no government funding available. Without government
support, people came together and found a way to make these therapies
accessible.
Massage, Reiki, body re-balancing, cranio-sacro,
Reflexology, meditation and visualization, immune boosting vitamin
therapies, oxygen and ozone therapies and more. The results, a
toxic body is purified, allowing the body to repair the damage
created by illness. Creating health and balance. With the healthy
things I have incorporated into my life, there have been many
changes in how I think and what I put in my body. The results
speak for themselves. I am still alive and have learned how to
live a full life!
Science, pharmaceutical companies, the medical profession
and government, have all but ignored much of what many people
living with HIV/AIDS have to say, which is a major contribution
in the understanding of this virus. Science and the medical profession
provide HIV/AIDS information to the media and the media disseminates
it without a real balance of understanding. We see people dying,
and certainly in many parts of the world there is malnutrition,
lack of medical attention and affordable pharmaceutical resources,
all contributing to countless deaths. We see the fear associated
with sex and the need for safe sex practices. We hear about drug
cocktails, the latest approved medications. We see people taking
a handful of pills. We hear about the resistance to drugs, and
we see through the media those sick with wasting syndrome, PCP
pneumonia, kaposi's sarcoma, or crippled by neuropathy, or worse.
What is alarming about this situation is the medical
profession holds the HIV virus responsible for any and all illness
when a patient is diagnosed infected with HIV, using the excuse
that a condition is HIV related. It is because of this rampant
over diagnosis that little or no search is undertaken for what
is causing the health problem. More consideration has been directed
at eradicating the HIV virus and not enough attention given to
patients individually. As well as the attention given to decreasing
the viral load and the search for a cure for AIDS, maintenance
need to be addressed. Many have experienced side effects of the
drugs, pain, discomfort and prolonged illness because science,
medicine, and the pharmaceutical companies promote the direct
attention to an actual VIRUS, rather than to the greater needs
of a suffering person!
For some individuals on HIV/AIDS treatments there
are few or no side effects. Others experience side effects that
undermine their ability to be well. If the person who is already
experiencing problems with their health is an individual who does
not tolerate the drug treatment well, then their side effects
mask the symptoms of another illness. Very often when a patient
complains of not feeling well, they are told or led to believe
that it is all due to HIV or the side effects of the drugs. With
a condition in progress or out of control and very little attention
given it, this allows for suffering and dying, not due to their
t4 cell count or viral load. But from an invasion of bacteria,
fungi, virus', and or cancers, unaware to those not looking.
The pharmaceutical companies would have us believe
that individuals are living longer solely due to anti viral therapies.
This is only partly true. There are many who cannot take or have
not taken anti viral drugs who are living long and healthy, totally
alive, full of vitality without them. Certainly, there are many
individuals experiencing the benefits of the many drug options
available in treatments and research for a cure for AIDS and ALL
disease. Voicing also the successes of those not on any of the
HIV treatment drugs and, the fact they are doing so well, must
be accounted. My concern is for individuals who have health problems
that are not addressed, who suffer needlessly and possibly die.
The HIV virus is not solely responsible for every health issue
facing individuals infected. The underlying concern is for those
individuals who may not be having trouble with the virus in their
system as much as having some other factor affecting their health.
At Howard University Hospital, doctors reported
distressing patterns of undiagnosed infections. Findings of 40
HIV positive women who died of AIDS, showed at autopsy, that half
of the 40 women had more than one disease unidentified, only at
postmortem. More than one disease was found in 7 of the 40 women.
Those suffering with illness and those who have
watched loved ones get sick or die know all to well that many
health conditions were either not diagnosed or misdiagnosed, but
it was Not HIV causing the problem. In my own situation this has
happened numerous times. Often, my health problems have not been
dealt with by medical resources and it has been complimentary
therapies which have eradicated a problem. Had I been satisfied
with nothing more can be done, and nothing done, I would have
continued and suffered much longer. Symptoms of illness cannot
be overlooked nor can all symptoms be attributed to HIV. Rather
than focusing all the emphasis on attacking the HIV virus, consideration
must be given to recognize symptoms of illness and disease. The
disguises are many but the faces are those of individuals!
There are many more disturbing facts of undiagnosed
infections and the access to treatment which may depend on who
requires the care. It seems health care may be affected in different
ways if you are a woman or man, injection drug user, gay, bi or
transsexual, with private insurance or public assistance.
In 1998, I developed a life threatening pneumonia,
Pneumocystis Carinii Pneumonia or PCP. I chose to be at home instead
of going into the hospital but my body was not tolerating the
medications to fight the pneumonia, my organs were shutting down
and it looked like I might die. My only recourse was to try an
HIV/AIDS drug combination. The drug treatment boosted my compromised
immune system, a cd4 count of 40 went up a couple of hundred points
and eradicated the PCP pneumonia. The viral load decreased substantially.
In time I regained weight and a renewed sense of wellness.
In 2000, I started to develop resistance to the
HIV/AIDS medications I was taking and enrolled in a drug study
for a new protease inhibitor, Kaletra. In the first four weeks
on the drug, my immune system was strengthened , cd4 count climbed
to 340 and my viral load undetectable. Today, not one viral particle
found, my immune system is strong, a cd4 count of 540, and the
HIV virus remains undetectable in my body. The vitamin C intervenes
injections my Naturopath provides, have proven through blood work,
to have also increased my cd4 count by 200 points, and climbing.
Many infected have lived the last 15 years or more
without HIV-related drugs and dealt with many of the same health
issues as those on the drugs, with great success due to nutritional
supplements and complimentary therapies. We may have jumped the
gun and put all our efforts into pharmaceuticals when it came
to fighting AIDS. It would be wise to look at contributing factors
to Immune Suppression and address these, using every available
means to heal.
Immune deficiency is responsible for much of the
disease today. Not just in the area of AIDS, but the cause of
most illness and disease. It would be wise to look at the contributing
factors to immune suppression and address these. The air we breathe,
food we eat, water we drink, these are co-factors. Lack of proper
nutrition and exercise and the use of drugs and alcohol can contribute
to immune suppression. Also contributing is the fact that we are
now into our 3rd generation of pharmaceutical use. History of
health, infections, bacteria, fungi and viruses such as Herpes,
Hepatitis, mononucleosis, Epstein Barr syndrome, sexually transmitted
diseases and others are co-factors in immune suppression.
Virus, bacteria and fungi thrive in low oxygen,
so anything we do to improve the amount of oxygen in our body
and our blood stream, this will help to interfere with an environment
for these to live and thrive in. A healthy nutritional diet, exercise,
and vitamin supplements, Herb's and botanicals are all key in
creating more oxygen in the body.
Included and well documented as a co-factor is the
Mind/Body connection. How we feel and what we think play a key
role in the manifestation of disease emotional or physical. Worry,
fear, guilt, loss and stress are all co-factors. The planet itself
has a weakened immune system with the depletion of ozone and other
contributing factors. Everything a person has contributed to immune
suppression comes into play regarding disease.
It is important to understand the immune system
and what it needs to be able to carry out all its functions. Understanding
the cells, the nutrients and all they require to be up and running
to maximum capacity. The stomach and digestive track and organs
require their own needs be met. The immune system knows how to
run the body and keep it healthy. We on the other hand may not
have been as conscientious. Creating far more for the immune system
to deal with, especially when the system does not have the proper
requirements to provide balance and harmony throughout.
We must not allow ourselves to fall prey to the
belief that science and the medical profession have all the answers.
Nor can we find all our answers in pharmaceuticals. Science, medicine
and the use of pharmaceuticals play key roles, but so does the
greatest disease fighter on the planet, our immune system. People
have to understand that the greatest healing comes from within.
There is a whole consciousness that supports disease and we can
make an attitude adjustment
It seems there is only money in illness, and no
money in wellness. Funding, education and implementation of supplements
in health care are paramount. Providing nutritional supplements,
alternative/complimentary therapies can be implemented into health
care quickly and effectively, having positive affects on individuals
with illness and disease. It is our responsibility to persuade
government to include and provide these in our health care. And,
insure natural supplements continue to be available in our health
food stores. With choice there is hope!
There is great hope and inspiration for those able
and wanting to try these new drug treatments but nothing is available
to those who cannot tolerate these drugs and there severe side
affects. What about these people? What about people who are not
having any form of traditional drug therapy? What about them and
their success with maintaining and improving their health? What
about looking into treatments that would help those for whom these
drugs can potentially cause severe side effects? There is no mention
that these people exist and of the limited treatments available
to them. This is an area seldom heard, or dealt with.
We must not overlook what is right in front of us
showing up endless opportunities. Opportunities for us to learn
and grow and have healthy bodies. Now is the time to put money
into our health care system. Our health care IS homeland security,
health care IS education and health care IS everyone's concern.
There is concern and confusion around medical treatment
for many illnesses, not just HIV. Weighing the pro's and con's
of the many treatment choices isn't easy, especially when there
are often known side effects to consider if choosing a drug treatment.
Being in touch with your body and of strong will mentally, emotionally
and spiritually allows you to move forward through all things.
When faced with a situation, we don't have to show up for our
fear, it is like putting up a stop sign for living! Realizing
there is good in everything and life is filled with many Miracles,
we can move forward.
Many are not aware of how being HIV positive affects
your relationships, career, travel, and future. The public needs
to understand HIV and let go of the fear. Letting go of the fear,
we can all talk to our family and friends and co-workers about
our personal lives. Our employers can get health related information.
And, if need be, we can ask for help and receive help. We can
also eliminate false perceptions and judgments due to sheer ignorance.
These years spent cohabiting with HIV have taught
me a great deal. I learned about my body, mind and spirit. I searched
for and learned about alternative and complimentary therapies
and incorporated then into my life. I chose a healthy lifestyle,
and worked at being responsible for how I think and feel, and
what I put into my body. I exercised my mind and spirit, and my
physical body. I learned you cannot heal the physical body without
first healing the mind. I learned there is more power in people
knowing the Truth than there ever was in the fear and hiding.
I learned the abundance of life does not come from what one provides
for oneself, but it is found in our connectedness. I learned the
power of faith and prayer in healing, our own as well as the faith
and prayers of those who care and Love us. I learned there are
endless possibilities!
What ever is taking place, we have the choice to
choose to move forward in it. We don't know how long we have with
someone, or how long we have to live. Whether it is six minutes,
six months, sixteen years or more, what is important is to make
the most of the time we do have. We also do not have the luxury
of preventing things from happening to us. Therefore, we must
be able to go through, and move forward in whatever comes along.
Whether an illness or disease, a relationship breaking up, or
a death, we must move forward. How we move forward and the time
it takes us to move forward is very important.
I believe our God given gift is one of choice, and
at any given moment in time, we can choose in that moment, what
is for our highest and best in that time. I no longer listen to
the chatter of my ego mind or the committee that goes on about
all kinds of things. I center myself, listen to the spirit I am
speak, and in that I can trust and move forward. Each step forward
creates an affirmation showing us we were able to move forward
regardless of the circumstances.
On February 27th, 2002, I had hip surgery requiring
a plate and screws, due to an ice skating accident. All the years
I was told I would get sick due to HIV infection, or die, I found
myself hospitalized for the first time since a hernia operation
in 1972. Here I am now, 50 years of age, physiotherapy completed,
my hip is healed, and grateful to be alive and healthy.
Positively positive. Moving Forward!
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