The vibrations began on an early Thursday morning, two day after
April fools day.
My beeper began its electronic dance on the kitchen table as I prepared
to eat my breakfast.
I glanced down at the numbers and recognized them as those of my
physician's office.
My mind began to fill with thoughts, random questions on this odd
summons so early in the morning.
I picked up the phone and began to dial, realizing that it had been
almost 3 weeks since my last visit to my doctor, a visit to explore
the new bumps I had on the side and back of my neck. As the phone
rang, I remembered him telling me that it could have been my lymph
nodes that were swollen due to the fact that I had recently gotten
over a severe flu, one which was stronger and longer than any I had
ever had.
A woman's voice greeted me, and I simply stuttered, "I was paged
by this office, my name is Julio". "Please hold a minute"
she replied.
Soft classical music began working its way through my left ear as
I began to think more about my last visit. I recalled I had asked
the Doctor for an HIV test, which I had done every few month's as
a standard practice. I then realized that I usually received my results
in a week's time, yet a few weeks have already passed with no news
about this last test. Perhaps there was a delay, perhaps the results
were lost, perhaps.. "Julio?" the doctor's voice suddenly
cutting through the soft music that had me in my semi trance.. "Your
results came back… they are positive".
Silence overtook this line, where a few seconds ago there was serene
background music.... I heard him, but for some reason it took me more
than a few seconds to comprehend and decipher this message… "
I'm sorry, what?" was all I could say as I began to realize what
he was trying to tell me, "The HIV tests results are positive,
when can you come back in? We need to do another test."
More silence, but this time somewhere deep inside my thoughts I somehow
began to await a "Happy April Fools day" reply. A few more
seconds passed and I suddenly snapped out of my initial shock and
promptly replied "This afternoon".
My Story began that day, eight years ago.
After all was retested and confirmed, I was told that my virus, my
strain, was very fast.
As I was testing routinely, they were able to find it shortly after
my body started producing the anti-bodies. The next step would be
to start medications, immediately and aggressively to take control
and try to curve the fast rate of my viral load.
There are 2 numbers I remember, even now, that for some reason never
meant much to me, 1,350 and 85,000. These 2 numbers represented my
Cd4 and Viral Load Counts on my first test after my infection was
detected. The goal now was to keep my Cd4 as high as possible and
bring down my Viral Load to less than 500.
I began the medications promptly 2 weeks later. Fortunately for me,
Just about every aspect of this was covered under my health insurance
from work. I had no real worries about costs, so I was very optimistic
about starting my "Cocktails" as soon as possible.
A few days went buy and my stomach began to rebel against the new
myriad of foreign chemicals and regimens I struggled to force into
my body. I began feeling nauseous, sick, dizzy and fatigued from the
medications and began to wonder exactly how I would manage to function
as my old self again. What was my body doing in response to these
toxic pills, many of which had warning labels of liver and kidney
failure, diabetes, and other things I think I managed to not think
about 28 pills a day, some with food, some without, some every 8 hours,
some every 12.
Every day that followed was an increasing battle with these pills.
My body and mind began creating ways to halt this invasive and aggressive
attack on my own self. Yes, I realized that this was for my own good,
something I had no other choice but to take so that I may live, but
it still was becoming something more than a small battle... it was
, in essence, declaring a full fledged war with my mind and my body
and myself.
My Stomach and Throat became my enemy, my subconscious mind took
control of my conscious state, sending out instructions I could not
control in order to halt, delay, and with its greatest effort, stop
this assault of medical intervention.
It began when I first woke up, my mind sending out feelings of nausea
through me, simply because I knew I had to go and swallow 6 pills
before I began to get ready for work. As I took these pills, my throat
would begin to close and I would have to force the pill through the
new narrow opening my body had allowed me to swallow. I felt the pill,
tight against my chest, being pulled down slowly, dragged with great
effort. My chest ached as my muscles contracted to keep pulling that
pill to my stomach. I began, with worry, to take the other 5, one
by one, each feeling like they were cutting their way down into my
body. Only 23 more to go for the rest of the day, too much to think
of this early in the morning, so this small victory would have to
do for now.
As I began getting ready, my stomach protested this unwelcome breakfast,
making me dizzy, and nauseous. I began feeling like my body wanted
to send everything back the way it came in, and had to concentrate
hard to regain control. How could my battle against this virus become
so difficult so fast? This was merely the beginning of my treatment,
and if this was some kind of adjustment period, then I had to get
over this!
I failed miserably….
After weeks of feeling sick, of feeling like I was some other person,
of feeling like somehow I was killing myself; I began to suffer with
work.
I began to come in a little late, I began to loose my concentration,
and I began to feel like I couldn't perform at my peak. I told my
doctor about this, and we began to explore different types of pills
to take.
The "experimentation" of all my regiment options, cocktails,
pills, anything and everything I tried made me more ill. It finally
happened one day where I awoke and found that I had lost control of
my bowel movements, most likely due to the fact that certain pills,
combined with my stomach, had a very high side effect on me.
I began to cry, without realizing it. I was humiliated with myself.
Is this what is to become of my life? How could this happen? What
was going on? When does it end?
Slowly, I managed myself to the washroom, and then to the phone, I
was placing my first "Sick Day" call, entirely related to
my HIV and medications. I then took all my pills, and threw them out.
This all happened within my first year of being diagnosed with HIV.
Several Years later, I began this battle again. The doctors thought
that I should, and I was getting very tired of hearing about how I
was going to die if I didn't start it up again.
"5 years, 6 years, 7 years is all you have to live if you don't
start now". I was tired of the looks the nurses and other physicians
gave me when I told them I wasn't taking any medications.
"Fortunately", as I was told, there had been some changes
in the medications. Soon, instead of taking 28, I only needed 21.
"Good news", as I was told, for me.
Work began to become a little more difficult. My Cd4 had dropped
from 1,350 to 700 that first year, and dropped again to about 600
as I began to purchase my new set of cocktails. My viral load was
going crazy, doubling in numbers and hitting 192,000.
The scene was very similar; my subconscious mind had won before,
and was ready to pull out all its nasty tricks to keep me from making
myself sick again. And so, the battle began, for another year. In
the end, my options were severely limited, as I had gone through all
that medications that had been available, without success.
It was at this time that I was able to pursue an ambition, that being
of teaching. I had a lot of knowledge in the corporate world, and
my Technical talents with computers had really grown. I was offered
several opportunities to share my knowledge with students, and it
was something I began thinking about after doing several training
courses with employees, clients, and colleges.
But how? What were the implications of this dream? How could I hide
my illness, or was it wrong to put myself into a position where others
might feel I was a danger to them? I struggled with these thoughts
for a long time, putting myself down and feeling despair and worry.
Would the Schools, if they know, ban me from teaching? Ban me from
sharing my knowledge? I was no danger to anyone, but what would others
think? If they found out, would I have thrown away my secure job,
in order to follow my ambitions?
My dilemma was somehow changed by tragedy. I worked closely with
a school and in particular, one of their instructors. She was the
only computer teacher and person responsible for their technology
department. The school had informed me that she had passed away, and
they were in dire need of someone with my talents to take on the challenge.
I attended the funeral, and stood in front of the casket, somehow
whispering to her in my mind, and felt that somehow my choice was
very clear. I would indeed carry on her legacy and try my best to
both help the school and her students and to peruse my ambitions of
teaching. I had a meeting, made some adjustments, gave my employers
my 2 weeks notice, and began my new adventures.
Those were the best years I had ever had with my career.
I was now the Director of Technology, in charge of over 140 PC's,
their network, their Web Pages, Their Programming classes and training
courses. I felt as if I was on top of the world. Finally, I was able
to both teach and take on the role of top gun, head honcho, decision
maker, program implementer and all the things I knew I wanted to do
in my life.
I adored my students, I was always trying to make things interesting
and challenging for them. Sometimes, I would see some excelling at
what I was presenting and others struggling. But, in the end, we would
all get through it, with many laughs and chuckles along the way.
I was sometimes surprised and humbled when some students would come
to me and say they wanted to pursue a career in computer technology
when they went to college because I was able to make it interesting
and enjoyable for them. I would find myself staring in silence and
awe at some students coming in after school to my labs to work on
the computers, the very same students who protested and made it very
clear they had no interest, desires, or will to excel with this technology.
The years went fast there, and with it, so did my decline in CD4
and increase in my viral load.
Things got pretty bad that last year, and I was desperate. I was
showing signs of my illness, and still having trouble with my medications.
I had gone to see two psychologists because the doctors were convinced
my subconscious mind was somehow willingly controlling my side effects
and reactions to taking the pills.
Initially when I started teaching, I was on the Cobra Health insurance
program, and of course I let that expire, and was hoping to wait out
the 1 year pre existing condition clause to get health insurance.
But as my time built up there, I began to worry about applying. I
did not want anything to come back showing that I was on medications
for HIV, no reports, no disclosures, no hints at all. I didn't know
how the claims worked, but was sure that somehow, somewhere, it would
reach someone here at my school, and could not face to risk anything
that would jeopardize my passion in teaching and directing their technology
department.
But I needed to do something about my illness and fast. It was then
I found a wonderful place that would work with me, and provide me
with healthcare and medications, without being involved with the school's
health plan. And because of this, I began my infinite battle with
the pills again and began to fight this virus full force.
I had been told by some people that when my mind and body was ready,
it would allow me to try again successfully. I thought that the time
had finally come! I had too much to loose if I became very ill, and
I enjoyed my work and students too much to let them down. So I began
my treatments, down to 8 pills a day now.
As I struggled with my Medications, I began to arrive late to work
very often. Most of the time I would have to make a few pit stops
on my way to work. I held my position there and my adoration for my
students so high, that I was willing to drive 84 miles a day round
trip to do so. Sometimes, I would have to turn back as I started my
long drive to make sure I would be able to make it without incidents
to work.
While at work, there was many times where the fatigue caught up to
me. I would literally have to prop myself against a wall to make sure
I would not fall down when I got my dizzy spells. I also had to make
sure that there was a washroom very close to where I was incase the
sudden urge to go came over me. I began loosing weight; my face began
to break out with rashes and some kind of skin infection. I looked
sick, I felt sick, and people around me began to notice.
I called in sick more frequently, and thoughts formed in my head
on how I was going to be able to keep up. The possibility of having
to take a medical leave of absence was becoming more real every week,
and I had trouble with those thoughts.
I knew what was happening. I knew someday it would come, the day
where my virus would overcome my physical abilities to work. Months
went by and I struggled, both physically and mentally. I was getting
much weaker, loosing more weight, and becoming more desperate.
I read articles, asked questions, and kept myself informed of the
very real decision I hade to make, and that being that I was no longer
capable of doing what made me special in my own mind. I lacked concentration;
I lacked the ability and strength to continue on.
I set a goal for myself, that being to be able to stay and work for
another year and a half, to watch, with my ultimate feeling of pride,
my homeroom students, who have been with me since they were freshmen,
graduate. This was very important to me, something I wanted to see
since the very first day I started. These students, whom I would see
every day had become like family to me. From their transition into
High School Life, through their Changes is sophomore life, to the
preparations in their junior year, we had been very good group as
a whole. We were planning their Junior Year Prom, their junior year
ring ceremony, and college preparations and tests that were happening
in the few months ahead. All the while, in the back of my mind, thoughts
of abandonment and disappointments lingered. How could I leave at
such a great time in their life? How could I not be there, as their
instructor and homeroom teacher when they reached their senior year?
How could I not be the one to give them their diplomas when they graduated?
I would not be able to hand them their diplomas. On their graduation
day, I felt very, very strange, sitting in the back of the church,
watching their new homeroom teacher hand out their certificates of
achievement. I was selfishly, feeling sad and jealous that my moment
with them had passed. Their last year, their most important year,
carried on without me. I had somehow failed them.
There I was, forgotten, weak, pale, skinny, and I felt, ugly, watching
my adored students graduate. I so very much wanted to be sitting with
them, with all the other faculty and staff, dressed in my own Cap
and Gown with my fuzzy black lining indicating my own achievements
as a College graduate, just standing in front of them, leading them
up the procession, and walking them out of the ceremony.
The event ended, and the students, now officially "graduated"
formed a line and began to walk out towards the exit. Everyone stood
up, applauded and waited for them to complete their exits. I was on
the edge of the row, and stood up and looked at them as they began
to pass me. My heart warmed when I saw my homeroom students, and when
they saw me. I felt as though suddenly, all my negative feelings where
nothing but a nonsense, I was happy to be there! I was excited to
see them, I knew they had not forgotten me when some students pointed
to me, and began to head my way for a quick hug and an invitation
to come outside and see them. We all gathered outside, and the students
came in groups to see me. I was being dragged all around to have my
picture taken with them, their families, and friends. It was just
as I had imagined it to be, a time of joy, celebration, and a sense
of great pride.
I flashed back on the day I had left for medical leave, or as some
may call it, long term disability. The school was incredibly supportive
of me, even though I had simply phrased it as being immune system
deficient. But, they helped me through the entire process with compassion,
concern, and great care. I got cards, and gifts, and letters from
the faculty and staff. I never was able to tell them that I was HIV
positive, and that the illness had caught up to me, I simply assumed
that when I left, that was the general opinion. It took me some time
to adjust at home with the reality of my life, I was disabled, and
had to fight hard to keep myself from getting ill. During this time,
my Cd4 Count hit 180's and my Viral Load hit 395,000; and hence forward,
my condition now transformed from being HIV positive, to having AIDS.
But, my thoughts were interrupted as I was being dragged around into
more groups and more pictures to be taken. I met with colleagues,
friends, and some former graduates. I was told stories and events
that happened during my absence. It was as much a celebration for
me as it was for them. Being there was very special and being able
to connect and talk and share just like I had been there all the time
was superb.
AIDS has affected me. I would be lying if I said things are fine,
that I have overcome the challenges and disappointments it has caused
in my life. It has taken from me my biggest achievement and passions
in my life. It has, at times, left me staring in the mirror wondering
what's happening next. It has left me with great fear at how my body
has suffered, and greater fear as to what is to come next. There was
a time where I couldn't control my weight, appearance, energy, fatigue,
dizziness, nauseous-ness, or my mental state of mind, no matter how
hard I tried. I was loosing to it, and didn't know if I would ever
recover.
I longed to feel care free and energetic, like normal, before all
this began.
I still worry about my friends and family. I have told a few about
my illness. I have gone through great efforts and a web of lies to
keep most from ever finding out.
I get confused sometimes at who may know, and who may not know.
I fear the same reaction my sister had, whom I wound up telling over
the phone.
Her trembling voice, her valiant efforts to hide her sobs and pain
were so overbearing for me. I could hear her voice cracking trying
to come up with words to say, finally bursting out in tears and sorrow.
I too tried my best not to let her hear my pain, realizing that I
just dealt her a devastating blow, news that carried with it the final
thoughts of death and suffering. I vowed never to put my mom and dad
through that, and formulated the plan and deceit that would forever
have an explanation for what my body was going thorough.
I concocted fictional stories about finding a job that let me work
from home, free from daily commutes. I intertwined technical lingo
with false descriptions of how this new opportunity in my professional
life has taken form. I remain, with all of my family members, an active
self-sustained, employed and hard working member of our society.
Not to say that isn't entirely true, I still try when I am able to
be active and useful.
I can still give advice, consultation, and otherwise, technical help
to my supportive and wonderful clinic that I am involved with. Yes,
it is nowhere near my full capabilities, but at least I still can
feel a feeling of accomplishment and purpose. That is something I
am still struggling with, but I am at peace with that, and I know,
that when I get better, I can continue to do so.
I don't think my story is much different than many people who have
lived through AIDS.
Some had had an entirely different outcome, overcoming the difficulties
of this epidemic.
Some lead and feel the normal way, before all of this began. That
is where I will be, some day, back to my old self; yet stronger.
I wish I could say that everything is fine for me, but I will simply
say, that I will keep fighting, and trying to overcome my hardships
and challenges, so that I may live to see the day, when all of this
is done.
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