OPENING TALK FOR AIDS WALK
WISCONSIN-Milwaukee 2007:
YouTube of Da Pirate
speaking
My name is Bob Bowers. I work on the
front lines in the fight against
HIV/AIDS.
With over two decades of surviving with
this disease, it’s a great honor to be
invited back to help kick off AIDS Walk
Wisconsin 2007!
I remind myself and you, I am not a
victim, I’m not an AIDS patient, I am a
survivor! Give yourselves a huge round
of applause for sharing in my brilliant
and profound reality. Your compassion is
without a doubt, our cure!
Wisconsin is a TERRIFIC state, is it
not!? With your support, Wisconsin
remains TOPS in the Nation in caring for
those of us infected or affected by
HIV/AIDS.
In 2006, Wisconsin had NO babies born
infected with HIV. This is an absolute
victory!
Recalling a time when we had absolutely
no medications to treat HIV, we now have
over two dozen available medications and
many more in the pipeline.
Our compassionate and willful lawmakers
stand with us in the fight against AIDS.
ARCW diligently ensures those of us
living with HIV/AIDS have access to care
and services. Through their compassion,
we are able to live with dignity and
quality. Thank you ARCW! My Camp
Heartland family provides a profound and
enduring impact in the lives of
countless thousands of children who were
born into this very adult disease. Thank
you Neil! THANK YOU to all of our state
agencies, organizations, individuals and
supporters, who remain steadfast in this
fight!
However, HIV/AIDS remains a medical and
social crisis of global proportions!
On 9-11, four jets crashed leaving NO
survivors. Our nation declared a full
out war costing us countless billions of
dollars. In 2006 alone, roughly three
million of our brothers and sisters lost
their lives to AIDS. That is the
equivalent of TWENTY fully loaded jumbo
jets crashing daily for a year, with NO
survivors and NO war.
Rather we refer to such utter carnage as
a cause. I despise surrendering to AIDS
as a ‘cause.’ It’s a passionate and
intensely personal FIGHT! We must put
saving human lives first and declare a
full out WAR on the greatest scourge
we’ve ever known! We must muster the
political and collective will to once
and for all, END AIDS. There is no time
to relent in this fight!
We must continue advocating for the
empowerment of women and for our
brothers and sisters of color. We must
continually address issues of
homophobia, mental health poverty and
addiction! We must ensure that ALL
persons living with HIV/AIDS are treated
with dignity and have access to care and
treatment!
Thank you for joining us in the fight.
In closing; in the words of my dear
friend, the late Mike McKinney, “You my
dear friends are the true HEROES and
SHEROES in the fight against AIDS.” Step
by step, there is no doubt we are making
a profound and lasting impact! Please
walk with renewed hope, strength and
pride! Walk with love in your hearts as
you reflect and honor the over 25
million lives lost to AIDS. My friends
never ever surrender and never ever
forget!
Namaste you fearless warriors!
On The 25th Anniversary
of AIDS
I have survived living with HIV/AIDS
for over two decades. I feel so
very blessed and grateful to be
alive. I guess it is true, “that
which does not kill you, makes you
stronger.” I did not get here unaided.
I’m deeply indebted to the brave
souls who have gone before me. The
horror, devastation and undeniable
loss that we witnessed through the
1980’s and early 1990’s are a painful
cross to bear for many. After the
loss of dozens
of friends, my life’s work is to
advocate for my peers, and educate
about the realities of this scourge
we call AIDS. I do this in honor
of many. The rights, medications
and services that were put into
place through the blood, sweat and
tears of our loved ones throughout
the 80’s and 90’s continue to be
politicized and strained. Also,
combination therapy has spawned
a great deal of complacency and
apathy. One doesn’t have to look
far to see the ongoing desolation
in the new millennium. Shame, ignorance,
stigma and homophobia abound. Where
are the unity, heart, conviction
and tenacity? Are we so afraid to
stand up to those in power? Have
we sold out to financial gain and
politics? The time has come to end
the corporate, pharmaceutical and
political strangle-hold on HIV/AIDS.
We need to replace lip service and
status quo with harsh talk and realities.
There are countless precious human
lives at stake here and across our
globe. Can we not place our egos,
opinions and paychecks aside and
fight united and strong for a world
free from this dreadful pandemic
called AIDS? We have industrialized
and dehumanized a very human virus.
I can only pray that we continue
to collectively muster the courage
and heart needed in what is indeed
a bittersweet milestone in our fight.
Bob Bowers
Madison, Wisconsin
June, 2006
Do You Know
What It's Like?
Taken
from my talk on World AIDS Day 2004
Do you
know what it’s like to lay in bed
and kiss the cold cheek of your
friend, confidant and mentor because
you didn’t get to him before he
died?
Do you
know what it feels like to vomit
50 times a day from a so-called
‘cocktail’ that is saving your life?
Do
you know what it feels like to say
goodbye and kiss one of your closest
friends before he turns up his morphine
pump and goes to sleep forever at
50 years young?
Do you
know what it feels like to have
dinner with friends and have a combined
50 years of living with HIV and
AIDS?
Do you
know what it’s like to not be able
to hold a job because you can’t
depend on your health?
Do you
know what it is like to have fevers
for months on end and to have flu
like symptoms for the rest of your
natural born life?
Do you
know what it feels like to watch
your friend stop taking her life
saving medications because they
have disfigured her so badly she’d
rather die, and did?
Do you
know what it is like to feel so
dirty and shameful at times because
you have this “invisible’ deadly
virus looming within you?
Do you
know what it feels like to be told
at 21 to prepare for the worst you
have AIDS or cancer and not even
have the luxury of an HIV test,
yet here I am at 41?
Do you
know what it’s like to have a team
of doctors; nurses and home health
workers care for your daily affairs?
Do you
know what it’s like to hold a loaded
gun to your head because you just
aren’t sure if you can go on, or
want to go on any longer?
Do you
know what it’s like to shit your
pants in public at 40 years old
from the HIV ‘cocktail?’
Do you
know what it feels like to see your
friend covered in purple lesions
and the flesh literally rotting
off his bones?
Do you
know what it feels like to be lying
in a hospital bed and have the Doctor
tell you, “Mr. Bowers we only found
a mild bacteria, however my good
friend in the next bed over wasn’t
so fortunate? Her diagnoses included,
spinal meningitis, cryptosporidium
and wasting disease. She didn’t
last much longer.
Do you
know what it feels like to carry
the label of hero and survivor?
Do you
know what it’s like to be carted
around in a wheel chair just to
leave the house in your 30’s?
Do you
know what it’s like to call your
friend to ‘catch up’ to only find
out he’s dumped dope in his pick
line and died, because the ravages
of AIDS became just too much to
deal with? He had been clean and
sober for over 15 years.
Do you
know what it’s like to plead with
adults and youth alike on a regular
basis in 2004 to please love and
protect himself or herself from
a totally preventable virus?
Do you
know what it’s like to plead with
our federal government in the ‘land
of plenty,’ to please fund life
saving medications for those of
us living with HIV/AIDS?
Do you
know what it’s like to have lived
this long with HIV/AIDS and know
there will be no cure in my lifetime?
Do you
know what it’s like to see your
gym partner at 230 pounds and weeks
later see a blank stare in his eyes
at 115 pounds?
I know
that many of you do and for that
I am deeply sorry and empathetic.
For
the rest of you, please remember
your compassion is our only cure.
NEVER, EVER FORGET!
My account from the 1999 National AIDS Marathon
in Washington D.C.
I am the 87th client ever of AIDS Project
Los Angeles. Having lived with HIV and AIDS
for the last 16 years,
I can not begin to
tell you how unbelievably surreal it is
to be writing this "Hero" story. A story
about how my wife of 10 years and a group
of compassionate caring people (Prefontaine
Group) and many others, who raised millions
of dollars on my behalf and the behalf of
others living with AIDS. This is also, a
story of 3 long-term survivors and their
"journey" to finding each other. Each and
every one of you single handedly define,
"Hero" We arrived in our nations capital
with great anticipation of the Marine Corps
Marathon and the bonding we would have with
all of our new friends and fellow, National
AIDS Marathoners. My health was the most
stable it had been in years! I was looking
forward to a "sick free" trip! We had wonderful
dinners and conversations. At Saturday's
dinner I was introduced to this "young woman"
who has had HIV\AIDS for the entire 19 years
of her young life.
A former teacher of hers had asked me during
one of the practice runs, if I would meet
with her. I gladly agreed.
I
was now delegated the chaperone for marathon
day. I was immediately moved to tears just
by looking into her eyes. Eyes that were
so innocent yet so scarred by 19 years of
living with HIV/AIDS.
Marathon Day was downright cold at some
6am! All I knew was I was very excited for
my wife and the monumental task that lie
ahead for her and the other runners.
I had packed all of my medicines into a
gym bag "just in case!" Also in my gym bag,
I was carrying gloves, goos, gummy bears
and other assorted marathon essentials in
case one broke down along the way. If that
were the case, I would have what they
needed hopefully. The pre marathon festivities
and gathering were powerful and spectacular
to say the least. I saw a few of these signs
around the AIDS Marathon tent...They very
simply but powerfully stated, "You are Heroes"
Well...I quickly snagged one for the run!
I could not have said it better than this
sign! Little did I know how the word Heroes
would be forever etched into my heart. As
the run started we were quickly humbled
and silenced in awe as the wheelchair marathoners
passed by us seemingly without effort
at mile 6. The 3 girls I was "chaperoning"
and I, were chanting at the top of our lungs,
HEROES, HEROES, HEROES, as the flow of yellow
singlets appeared before us. We screamed
for each and every yellow AIDS shirt we
saw! Pouring water for the runners at the
Griffith Park practice runs for the last
few months, I easily recognized the LA AIDS
marathoners. I received hugs and high fives
and a lot of joyous smiles. I heard chants
of "water boy!" My excitement grew even
more. I now knew how appreciated my efforts
and duties as "Water Boy" were.
However, I was not prepared for the over
1000 new faces wearing yellow shirts for
AIDS from the D.C. area. I cheered and saluted
each and every one of them as well. At first
they were smiling and kind of snickering
at our enthusiasm that we were openly showing
for them. By mile 10, their smiles turned
to tears of joy and deep appreciation for
our support. I was so hoarse I could barely
scream any longer! My head throbbed and
nausea was consuming me. My voice was cracking
as I screamed joys of thanks again and again,
desperately trying not to lose it
emotionally and physically. These emotions
were truly taking charge of my body. I choked
back the tears and was more determined than
ever to be there for all those running 'in
my honor' who needed my cheers and support
now more than ever. Emotional highs and
physical deterioration too were overtaking
their bodies. They too were being tortured
and challenged as I was in an eerily parallel
manner. This was now a group effort by all
to battle through to the absolute finish!
I could openly feel their pain and struggles.
There was no more hiding my pain; it too
was evident to all. My blood pressure soared,
which is not good with my heart disease.
I could not quit dry heaving! (Prior places
I had hid behind trees writhing in pain
and discomfort). I tried desperately to
suppress the symptoms I was having and medicate
to the best of my ability. Off we went to
the next viewpoint at mile 16. My first
true hero story came from my newest and
dearest friend and partner in crime. This
Hero and his wife were running in my wife’s
pace group and had never told a soul virtually,
of his HIV/AIDS status.
That
was until they met my wife! Now knowing
this man somewhat, I was incredibly inspired
by the fact that he too had AIDS as long
as I had, not to mention Hepatitis C and
Diabetes! This man had shown up week in
and week out showing the pavement no mercy!
Here he was at mile 17 now smiling into
my eyes and was aglow once again. I had
seen this glow before. It was during the
practice marathon as I passed in my truck
honking and waving at him in awe. I caught
a glimpse of this Angel in my rear view
mirror. It
was my newest friend Mike leading
the entire group, as he was this moment
too, showing no signs of pain or lack of
determination. His face, illuminated and
aglow with joy and peace, will always flash
in my rearview mirror when I feel like giving
up! Fueled
by the determination I saw in their
eyes, I walked and heaved and smoked as
much medicine as I could to keep my stomach
down and the pain in my head from killing
me. When I arrived at mile 21 thinking I
would just have to give in and lay down,
here came the sea of yellow shirts, their
pain and emotions were so very evident.
I sprang to my feet. I could no longer scream
without crying, I prayed to God I could
last to cheer my wife passed me. As each
yellow shirt passed I screamed with love
and admiration. I touched my hand to my
heart, I blew them kisses and we continued
to scream, HEROES, HEROES, HEROES, at the
top of our lungs. The runners from LA and
DC were too openly sobbing at this point
as we continued our chant...HEROES, HEROES
etc....I was learning the definition of
a Hero on a minute by minute basis. These
people showed up to run for others and myself
living with AIDS and they were not quitting!
I cried with joy as my wife passed me and
quickly resumed my bouts of dry heaving
and nursing my head. I thank God I had brought
my entire medicine bag, just in case!
We had lots of ground to cover to make it
in time to see my wife and others cross
the mile 26 point! I was nervous at best.
We now had to leave each checkpoint immediately
after my wife passed. We made it mere minutes
in advance to scream with love and admiration!
Just as I thought hero was burned into my
heart and soul, here came runner #14504.
In God's good name, I do not think I have
ever in my lifetime seen a man more determined
and more driven to battle his demons and
accomplish the task of crossing the finish
line. He appeared from under the overpass
running strong and driven by sheer will,
as he approached mile 26 on the home stretch.
I knew that feeling of sheer will power
very much! What moved me the most about
this gentleman is that his appearance was
not that of a typical runner or athlete,
he was carrying a lot of excess weight on
his frame and I stood in awe as I saw him
approach! Tears gushed from my eyes as I
screamed with thanks and ran into the street
screaming "you go boy…get your ass to that
finish line, THANK YOU, you are MY HERO."
As tears continued to well up in my eyes,
I was blown away by roars of joy, elation
and success as the Prefontaine group emerged
from under the overpass in rare form, loud
and proud.
Tears flowed openly now as I looked into
each of their eyes, they were saying, "you
are our hero", and it was them who were
the true Heroes. Our hearts were all on
the same plane. This fatigue had robbed
us all of our emotional blocks and barriers
and hearts were sobbing with joy and a whole
slew of other emotions, that became very
personal for all. Nonetheless, I was
forever changed by their success and triumph
and felt deeply saddened, as I knew some
of them were in incredible physical pain.
They were running now faster than ever to
the finish line, injured and all! My wife
passed and hugged me giving me the look
as only she can, "we made it baby and we
are ok"! She had a sparkle on her
face that was that of a true Angel. It was
a shine and a sparkle we both have been
desperately fighting to regain in these
last few years of severe health struggles.
A shine that AIDS had robbed her of and
she does not even have the virus. I desperately
panicked to follow my Heroes into the finish
line (walking). Little did I know the maze
from hell they had ahead of them to the
finish. As I got there, I was bombarded
by runners in yellow shirts who I had never
met from D.C. etc; who were openly embracing
me and thanking me for the encouragement
and support all along the way! I embraced
Mike my partner in crime We wept like babies.
I have such a deep admiration for this man
His triumph and success has forever humbled
me and inspired me. We felt each other’s
pain. We are SURVIVORS. No one could understand
better! I held my wife in my arms; we shared
tears of success and finally tears of pain.
I was in such awe and incredible admiration
for the people that completed this run.
I was still feeling so very guilty for having
put on such a spectacle with my being sick,
as I so wanted the day to be about the runners.
Today was about the runners and what I would
take from them, little did I know! I told
my wife of all people that day, that runner
#14504 humbled me to my knees. Another Hero
face etched into my "rearview mirror" forever.
Showered, rested and emotionally fragile
at best, we all attended the post marathon
ceremonies. I caught a glimpse of runner
#14504. I was telling my wife, "there he
is, the one who so inspired me beyond words
today." I felt compelled and drawn to go
and thank this man personally for his efforts!
I introduced myself and told him "that of
all people today, you inspired me beyond
words. I thank you from the bottom of my
heart. It is people like you that have helped
keep people like me alive!" He quickly added,
"this is not about me, but thank you. This
is for my daughter who passed away. She
would have been here today I know, if only
she were alive! She would have done things
like this to make a difference in this world.
She would have fought for a cure for AIDS."
My heart sunk as I sensed such great loss
in his eyes. I had noticed on his singlet
(running shirt) that it said, In Loving
Memory of Laurel S. Gist. I asked him if
his daughter passed away from AIDS and his
reply was no and somewhat evasive. He continued,
"this isn't about me!" I proceeded to tell
him again, "thank you from the bottom of
my heart. I have lived with AIDS for 16
years and you are the true Hero here."
We shared a warm lasting hug of mutual admiration
and that was it. He left, as he wanted his
anonymity and we all respected that. He
left us all from the Prefontaine’s a bit
weepy eyed to say the least. I was so thrilled
I had spoken to this man. This was my "lesson."
Suddenly, he reappeared asking me now, "will
you have my medal!?" I was very taken back
and not sure how to respond immediately,
this day was not to be about me! He explained
how he had given Rob (director) his medal,
singlet and a note. These items were to
be given to a "Hero." I welled up in tears,
my throat tightened and my heart raced,
as I now knew I could not deny this man
and his deceased daughter the honor! I also
had to accept at the same time that I too
was a Hero that day and was worthy of this
incredible medal of accomplishment.
I said, "I would be nothing short of honored
to accept your medal." Tears now openly
flowed in all of our eyes. This was a moment
nothing short of a "Divine intervention."
We all were Heroes in our own ways and we
all got our medals. Rob handed me the package
containing the medal etc. I told Rob I felt
"unworthy," this truly was just too much.
Why me? His reply, "Bob, I can't think
of a person who deserves this more!" I could
not contain my emotions as my heart literally
ached with joy and overwhelm. I embraced
runner #14504 one more time as he then disappeared
just as fast as he came into my life. Someone
pinch me, this cannot be real! We all looked
at each other in disbelief. At dinner, I
was dying to read the postcard that was
enclosed. The curiosity got the best of
me! I had gathered a few extra tears by
then and thought I was prepared. Here is
what we each read as I passed the card around
the table. We each bawled openly as we were
affected by this tragic story in our own
personal ways:
10/24/99
"Hello- I just completed my first marathon
and I want to give you my medal. My daughter
died on May 28th 1998 and I know that had
she lived, she would have made this world
a little better for all those subject to
discrimination and injustice. I ran the
marathon in Laurel's memory, while at the
same time raising several thousand dollars
for AIDS support services. I know that Laurel
would want me to give my medal away to someone
we don't know, as a sign of love. Therefore
please accept this medal in Laurel's memory
and know that even total strangers hold
you up to the light and wish you a full
recovery.
Love, Laurel's Dad”
I can not stop crying. I now know it is
true, I am a Hero, a real survivor! Thank
you Laurel and Laurel's Dad for teaching
me this!
You two and about 2,000 other "Angels" taught
me that day, the true definition of heroes!
What an incredible parallel there is with
this marathon and living my life with HIV/AIDS.
I now know there are thousands of AIDS marathoners
who now know that there is a Hero inside
each and every one of us! You runners, have
so inspired me with your acts of heroism
and determination, that I have set a goal
to run the last mile of the Chicago Marathon.
(If not the whole thing) This coming from
a man, whom just over a year ago, was in
a wheelchair and on deaths door. You all
have inspired me beyond words. Runner #14504,
you have shown me that anything is possible,
if you are willing to go the distance. I
will be there in Chicago. What you all did
in one day, makes me feel like my problems
are nothing!
See you at the finish line!
Yours truly, Water Boy Bob!
In loving memory
of Laurel Gist
This article was
published in APLA's Positive Living newsletter.
Revised: 2003
I am entering the celebration of my 16th year
with HIV and AIDS. For me, celebrating was the
furthest thing from my mind 4 days ago. I have
never had any gut feeling that I would succumb
to AIDS. However these last few years have made
me very weak and confused. Why was my body dying
along with my spirit and will to live!? I have
never felt so sick in my life as I have these
last two months. I once again was accepting
the fact that HIV had severely ravished my body
and was slowly draining the life out of me.
How could this be considering a I had a T-Cell
count of 257 and an undetectable viral load?
I have access to the newest medicines. I have
access to the finest hospital care and the best
Doctor in the world. Why could they not save
my life, let alone restore some quality to it?!
I had resigned to the fact that this is as good
as it gets, with AIDS and be thankful I am alive
for today! I was for the first time in my life,
sensing I was going to die. I decided I was
still going to go on living what life I had
left, no matter what the pain and suffering
and cling to what little hope and faith I had
remaining in me and that this too would subside!
I am in a support group which helps me with
living and coping with AIDS, but now I needed
help with not living as much, as facing issues
of death. I made an appointment for individual
counseling to further my support through this
very dark time for me. I was sitting in the
Doctor's office shortly thereafter when things
took on a whole new direction. My heart raced
as the doctor explained my new diagnosis. I
was full of emotions as I did not know what
to expect. All I knew, is I felt I was dying
and could this diagnosis be a means to an end
for me? I somehow managed to never lose hope
and I was hoping for the best in this situation
as well. The diagnosis was, severe hypothyroidism.
I have
never sensed a greater feeling of satisfaction
as I saw in my Doctor's eyes that day. It was
a deep level of admiration for the courage and
determination I had to survive. We had finally
been able to find something as "I don't knows"
were just getting old and not helping either
of us. I could sense too the guilt he felt for
pushing this tired body of mine to it's literal
end. I needed no apologies as I knew he believed
in me enough to keep looking for the source
of this problem! He proceeded to explain the
signs and symptoms of true hypothyroidism and
I qualified for all but one. We left his office
that day, filled with an immense amount of happiness
and hope. Could I really be about to join the
"living" again?! Was I about to be given my
life back?! We re-tested my blood to see if
it was the thalamus or the thyroid that was
the actual problem. The second test, which was
more detailed, showed an even more severe case
of thyroid malfunction. This information was
not devastating as much as it was yet another
miracle in my life. Thyroid disease I am told
is highly treatable and manageable with medication!
Within the first week of treatment my body started
to experience the first signs of life! I sit
writing this last bit with such an overwhelming
joy and happiness! I have been given another
chance at life again. I can't remember the last
time so many positive thoughts have filled my
brain. Thoughts like growing old and gray. (OK,
grayer!) It is still overwhelming to me to have
plans with family and friends. To go to dinners,
movies, play board games and most importantly,
laugh again! Especially considering last month
planning to take a shower was unattainable most
days. I have a whole new perspective and outlook
on life. I now have therapy to discuss all the
aspects of living a full life again. Trust me,
it's scarier than you think to learn how to
live again. Living can be the hardest part.
I am learning to live, complete and with the
utmost quality I can acquire from this tired
old vessel of mine. I am back to living with
HIV/AIDS! If you get nothing else from this,
please cherish each day, each hour and each
moment of life as you don't know when they may
suddenly be taken from you. I too practice this
to the best of my ability daily.
I cannot begin to tell you what it feels like to
have my Mom die of breast cancer at 35 years old,
I was 9 years old and I have wanted and missed her
love ever since. It was in the pursuit of that love
and sense of family, that I was led to try things
I may not have otherwise tried in my young life,
such as drugs. I just wanted to be loved and accepted
at any cost.
I cannot begin to tell you what it feels like to
be patted on my shoulder at 21 years old and told,
“Mr. Bowers, you have Cancer or AIDS and you are
going to die! You need to prepare for the worst!”
How could this possibly happen to me? I am not gay
and I only shared a needle one time with my girlfriend!
I was by no means a junkie! Damn, I thought to myself,
“AIDS is a death sentence, and my Mom died from
cancer, so my odds are daunting at best!” I wasn’t
real sure which one I wanted to be “officially”
diagnosed with! Mind you they never even so much
as drew a vial of blood from me! There was no test
for HIV in 1984! They had just renamed Gay Cancer
to GRID then to AIDS. It turned out to be ARC a
term they don’t even use any longer. I thanked God
as at least I had a fighting chance for a couple
of more years of life before I eventually died of
AIDS.
I cannot
begin to tell you the feeling of having my girlfriend
calling an ambulance to take me to the hospital,
and when the paramedics were told of my HIV status,
they turned around and left without me. Luckily,
another ambulance eventually did take me.
I cannot begin to tell you what if feels like to
have lived these last almost eighteen years with
HIV and AIDS being a heterosexual guy and just trying
to be one of the boys! It’s pretty frustrating trying
to get through Harley rides without puking, having
shooting nerve pains, or just plain ol’ having to
crap out because I have AIDS and am too sick to
hang. How about trying to have a conversation with
the “guys” and not mentioning something related
to HIV? It’s almost impossible for me at times anymore.
HIV and AIDS are my life.
I cannot begin to tell you what it feels like to
have had death literally looming over my shoulder
for the last 20+ years. It never goes away, I’m
afraid. Death constantly calls with this dreadful
disease; however, I made a decision to live and
fight no matter what! I chose and still choose to
suit up for life no matter what; but I am the exception
to the rule. My dozens of dead friends are testimony
to the fact that AIDS never goes away and “suiting
up” isn’t always possible no matter how much willpower
one has!
I cannot begin to tell you what it feels like to
have taken HIV medicines for the last 11 years since
the advent of the drug AZT and all the side effects
I have suffered from the medicines themselves. When
I took AZT alone in the late 1980’s I was crippled
in the fetal position on the couch. I was praying
to God to take the nausea and misery away.I could
not even eat a meal. My life would never be the
same after taking AZT.
I cannot tell you what it feels like to have to
use a wheelchair to leave my house because the newer
medicines they invented after AZT gave me nerve
damage so very bad that it made walking impossible
or difficult at best. I was also so fatigued from
the medicines that I couldn’t even walk outside
my house to the mailbox. I cannot begin to tell
you what it feels like to have to now take over
50 pills a day to stay alive. Some have to be taken
with food, some on an empty stomach etc. Some make
you vomit profusely.
I cannot begin to tell you what it feels like to
have to wake up and start my day feeling like I
have the flu every day. I awake more often than
not just trying to ignore the deep seeded nausea
in the pit of my empty stomach; but I have to take
more medicines, and even though I have no appetite,
I have to take my pills with food. I am appalled
that our community has the audacity to call these
even newer medicines a “cocktail.” I don’t see any
friggin’ cute little umbrella with my “cocktail.”
My cocktail makes me violently ill most of the time;
and no, I don’t even get drunk.
I cannot tell you what it feels like to stand in
the shower and barf and heave and heave and barf
until your stomach literally feels like it will
come up any second.
I cannot begin to tell you what it feels like to
have a stomach full of medicines and be starving
hungry, yet nothing sounds good to eat and even
if something might, I don’t even have the energy
to get up and make it. So I lay there nauseous and
cramping praying it will go away.
I cannot begin to tell you what it feels like to
feel sick for days, months, and yes, years on end.
Most people can’t tolerate a flu or cold for more
than a few days. I have run a temperature of almost
100 degrees for months on end!
I cannot begin to tell you what it feels like to
have to carry around extra underwear in my gym bag
because I could explode with diarrhea at any time.
My friend Hillary could not tolerate these side
effects from these medicines, emotionally as well
as physically and she is now dead, God bless her.
She was a beautiful mother of two sons!
I cannot
begin to tell you what it is like to write a good
bye letter to my best man before he dies from AIDS.
I wanted to let him know how much he meant to me
in my life. This letter was a great opportunity
I did not get with the other 40 something friends
of mine who died so very fast from AIDS. Clay died
a slow death. The only fortunate thing is that I
did get the chance to say “goodbye” and he introduced
me to PEP\LA.
I cannot begin to tell you the feeling of my wife
and me lying in bed with our dear friend Michael.
We kissed him and told him how much we loved him.
No, this was not a love affair. Michael was so peaceful
because he was dead from AIDS at 32 and no longer
suffering emotionally or physically. We cried openly,
as yet one more of “us” had succumbed to AIDS.
I
cannot begin to tell you the feeling of seeing my
good friend Richard on the Jeopardy show (“Tournament
of Champions,” mind you) one month and seeing him
on his deathbed the next month. We said a verbal
good bye and hugged him as we left his home. It
was so bizarre knowing that the next morning he
would turn up his morphine pump and go to sleep
forever. He told us he had just turned 50 and lived
a full life. I tend to think not. I miss him a lot.
I cannot begin to tell you the feeling of calling
my good friend Steve just to “check in” and instead
of hearing his voice, his father answers the phone.
He informed me that Steve was no longer with us.
I wept openly as yet another dear friend of mine
succumbed to AIDS.
I cannot begin to tell you how much I think of Steve
and miss him every time I am out shark fishing with
my buddy David. Steve introduced me to David and
shark fishing and I am forever grateful, as we are
still good friends and fishing buddies. However,
it is quite surreal without Steve alive. I have
a Mako Shark tattooed on my arm to forever remind
me of my friend him and the joy and fun he gave
me in shark fishing.
I cannot begin to tell you what it feels like to
see one of my dear friends of many years’ two weeks
ago and he is now blind. He couldn’t see me any
longer. AIDS has robbed Eric of his eyesight. Yet
we both celebrated and smiled because we are still
alive!
I cannot begin to tell you what it feels like to
feel so guilty for living, while so many others
have died from this very same disease. Our mutual
friend Kenny was not as fortunate as we are.
I cannot begin to tell you the feeling of asking
God to spare my life once more when I had emergency
surgery to look at my heart because the doctors
thought I was having a heart attack. As I lay there
in the operating room in utter confusion and fear,
thinking, “Could this be it?” calm came over me
as I prayed to God to be with me. I trusted I could
conquer this too! As it turned out, I was not having
a heart attack after all. It was HIV related cardiomyopathy,
a potentially life threatening disease of its own.
I cannot even begin to tell you the feeling of my
doctor looking into my eyes and saying that I should
have died and been buried next to my Mom.I should
or could have died on a couple of occasions but
I continue to fight for life! He praised me for
my courage, strength and ability to know my body.
I cannot begin to tell you what it feels like to
have another of my previous doctors tell me, that
the cause of my barfing and or dry heaving upwards
of 100 times a day was due to “my testosterone replacement.”
I’ve been required to do replacement therapy for
10 years now because HIV also shut that body system
down. That’s funny; I was not even barfing 3 times
a day prior to these nasty HIV “cocktails” they
started pumping me full of to live. Strange how
“testosterone” can cause barfing so bad that is
has scarred my throat with pre cancer for life.
Funny, I’ve never seen a body builder barfing upwards
of a 100 times a day and they are taking far higher
doses of testosterone and steroids then I ever was.
As I said before, there are no cutesy colored umbrellas
in these cocktails. They are toxic chemotherapeutic
drugs with far ranging side effects that the drug
companies would rather
you not know about. They do buy those living with
HIV some time. At a huge cost however to the organs.
Not to mention the huge financial cost of upwards
of $3000.00 a month or more. Also, not every one
can tolerate them; or they grow resistant to them
as I have and are on salvage therapy.
I cannot begin to tell you what it feels like to
ask your wife’s permission to die on more than one
occasion because I just had no quality left. I was
sleeping 20 hours a day from my unknown heart disease.
This was just one occasion. Thank God I have chosen
to tough it out each time, only to meet new and
different challenges each time. The cycle never
seems to end when you live with HIV/AIDS. Man, is
it frustrating at
best! Great days are few and far between for me.
I miss them terribly. A “good” day is just being
alive, sucking air, and helping others by spreading
the message about HIV/AIDS.
I cannot begin to tell you what it feels like to
be so scarred by death that you barely cry anymore
because you’ve lost so many of friends to AIDS.
I cannot begin to tell you what it feels like to
be told I “look so good and normal” yet I feel like
I am going on 95 years old on the inside and just
want to lie down and die.
I cannot begin to tell you what it feels like to
have survived the holocaust, so to speak, and now
seeing people young and old alike putting themselves
purposely at risk for HIV, thinking of the disease
as 'chronic and manageable.'
I cannot begin to tell you what it feels like to
have to write a letter like this! I pray daily this
will all just go away and leave me the hell alone.
I just want to feel “normal” again or my age at
least. I still have a tremendous amount of hope
and faith in God that I will beat all these things
associated with AIDS, or at least find an ounce
of quality in each day and focus on that!
Do
you know what it feels like to say
goodbye and kiss one of your closest
friends before he turns up his morphine
pump and goes to sleep forever at
50 years young? 
I can not begin to
tell you how unbelievably surreal it is
to be writing this "Hero" story. A story
about how my wife of 10 years and a group
of compassionate caring people (Prefontaine
Group) and many others, who raised millions
of dollars on my behalf and the behalf of
others living with AIDS. This is also, a
story of 3 long-term survivors and their
"journey" to finding each other. Each and
every one of you single handedly define,
"Hero" We arrived in our nations capital
with great anticipation of the Marine Corps
Marathon and the bonding we would have with
all of our new friends and fellow, National
AIDS Marathoners. My health was the most
stable it had been in years! I was looking
forward to a "sick free" trip! We had wonderful
dinners and conversations. At Saturday's
dinner I was introduced to this "young woman"
who has had HIV\AIDS for the entire 19 years
of her young life.
A former teacher of hers had asked me during
one of the practice runs, if I would meet
with her. I gladly agreed.
I
was now delegated the chaperone for marathon
day. I was immediately moved to tears just
by looking into her eyes. Eyes that were
so innocent yet so scarred by 19 years of
living with HIV/AIDS.
However, I was not prepared for the over
1000 new faces wearing yellow shirts for
AIDS from the D.C. area. I cheered and saluted
each and every one of them as well. At first
they were smiling and kind of snickering
at our enthusiasm that we were openly showing
for them. By mile 10, their smiles turned
to tears of joy and deep appreciation for
our support. I was so hoarse I could barely
scream any longer! My head throbbed and
nausea was consuming me. My voice was cracking
as I screamed joys of thanks again and again,
desperately trying not to lose it
emotionally and physically. These emotions
were truly taking charge of my body. I choked
back the tears and was more determined than
ever to be there for all those running 'in
my honor' who needed my cheers and support
now more than ever. Emotional highs and
physical deterioration too were overtaking
their bodies. They too were being tortured
and challenged as I was in an eerily parallel
manner. This was now a group effort by all
to battle through to the absolute finish!
I could openly feel their pain and struggles.
There was no more hiding my pain; it too
was evident to all. My blood pressure soared,
which is not good with my heart disease.
I could not quit dry heaving! (Prior places
I had hid behind trees writhing in pain
and discomfort). I tried desperately to
suppress the symptoms I was having and medicate
to the best of my ability. Off we went to
the next viewpoint at mile 16. My first
true hero story came from my newest and
dearest friend and partner in crime. This
Hero and his wife were running in my wife’s
pace group and had never told a soul virtually,
of his HIV/AIDS status.
That
was until they met my wife! Now knowing
this man somewhat, I was incredibly inspired
by the fact that he too had AIDS as long
as I had, not to mention Hepatitis C and
Diabetes! This man had shown up week in
and week out showing the pavement no mercy!
Here he was at mile 17 now smiling into
my eyes and was aglow once again. I had
seen this glow before. It was during the
practice marathon as I passed in my truck
honking and waving at him in awe. I caught
a glimpse of this Angel in my rear view
mirror. It
was my newest friend Mike leading
the entire group, as he was this moment
too, showing no signs of pain or lack of
determination. His face, illuminated and
aglow with joy and peace, will always flash
in my rearview mirror when I feel like giving
up! Fueled
by the determination I saw in their
eyes, I walked and heaved and smoked as
much medicine as I could to keep my stomach
down and the pain in my head from killing
me. When I arrived at mile 21 thinking I
would just have to give in and lay down,
here came the sea of yellow shirts, their
pain and emotions were so very evident.
I sprang to my feet. I could no longer scream
without crying, I prayed to God I could
last to cheer my wife passed me. As each
yellow shirt passed I screamed with love
and admiration. I touched my hand to my
heart, I blew them kisses and we continued
to scream, HEROES, HEROES, HEROES, at the
top of our lungs. The runners from LA and
DC were too openly sobbing at this point
as we continued our chant...HEROES, HEROES
etc....I was learning the definition of
a Hero on a minute by minute basis. These
people showed up to run for others and myself
living with AIDS and they were not quitting!
I cried with joy as my wife passed me and
quickly resumed my bouts of dry heaving
and nursing my head. I thank God I had brought
my entire medicine bag, just in case!
We had lots of ground to cover to make it
in time to see my wife and others cross
the mile 26 point! I was nervous at best.
We now had to leave each checkpoint immediately
after my wife passed. We made it mere minutes
in advance to scream with love and admiration!
Just as I thought hero was burned into my
heart and soul, here came runner #14504.
In God's good name, I do not think I have
ever in my lifetime seen a man more determined
and more driven to battle his demons and
accomplish the task of crossing the finish
line. He appeared from under the overpass
running strong and driven by sheer will,
as he approached mile 26 on the home stretch.
I knew that feeling of sheer will power
very much! What moved me the most about
this gentleman is that his appearance was
not that of a typical runner or athlete,
he was carrying a lot of excess weight on
his frame and I stood in awe as I saw him
approach! Tears gushed from my eyes as I
screamed with thanks and ran into the street
screaming "you go boy…get your ass to that
finish line, THANK YOU, you are MY HERO."
As tears continued to well up in my eyes,
I was blown away by roars of joy, elation
and success as the Prefontaine group emerged
from under the overpass in rare form, loud
and proud.
Tears flowed openly now as I looked into
each of their eyes, they were saying, "you
are our hero", and it was them who were
the true Heroes. Our hearts were all on
the same plane. This fatigue had robbed
us all of our emotional blocks and barriers
and hearts were sobbing with joy and a whole
slew of other emotions, that became very
personal for all. Nonetheless, I was
forever changed by their success and triumph
and felt deeply saddened, as I knew some
of them were in incredible physical pain.
They were running now faster than ever to
the finish line, injured and all! My wife
passed and hugged me giving me the look
as only she can, "we made it baby and we
are ok"! She had a sparkle on her
face that was that of a true Angel. It was
a shine and a sparkle we both have been
desperately fighting to regain in these
last few years of severe health struggles.
A shine that AIDS had robbed her of and
she does not even have the virus. I desperately
panicked to follow my Heroes into the finish
line (walking). Little did I know the maze
from hell they had ahead of them to the
finish. As I got there, I was bombarded
by runners in yellow shirts who I had never
met from D.C. etc; who were openly embracing
me and thanking me for the encouragement
and support all along the way! I embraced
Mike my partner in crime We wept like babies.
I have such a deep admiration for this man
His triumph and success has forever humbled
me and inspired me. We felt each other’s
pain. We are SURVIVORS. No one could understand
better! I held my wife in my arms; we shared
tears of success and finally tears of pain.
I was in such awe and incredible admiration
for the people that completed this run.
I was still feeling so very guilty for having
put on such a spectacle with my being sick,
as I so wanted the day to be about the runners.
Today was about the runners and what I would
take from them, little did I know! I told
my wife of all people that day, that runner
#14504 humbled me to my knees. Another Hero
face etched into my "rearview mirror" forever.
Showered, rested and emotionally fragile
at best, we all attended the post marathon
ceremonies. I caught a glimpse of runner
#14504. I was telling my wife, "there he
is, the one who so inspired me beyond words
today." I felt compelled and drawn to go
and thank this man personally for his efforts!
I introduced myself and told him "that of
all people today, you inspired me beyond
words. I thank you from the bottom of my
heart. It is people like you that have helped
keep people like me alive!" He quickly added,
"this is not about me, but thank you. This
is for my daughter who passed away. She
would have been here today I know, if only
she were alive! She would have done things
like this to make a difference in this world.
She would have fought for a cure for AIDS."
My heart sunk as I sensed such great loss
in his eyes. I had noticed on his singlet
(running shirt) that it said, In Loving
Memory of Laurel S. Gist. I asked him if
his daughter passed away from AIDS and his
reply was no and somewhat evasive. He continued,
"this isn't about me!" I proceeded to tell
him again, "thank you from the bottom of
my heart. I have lived with AIDS for 16
years and you are the true Hero here."
We shared a warm lasting hug of mutual admiration
and that was it. He left, as he wanted his
anonymity and we all respected that. He
left us all from the Prefontaine’s a bit
weepy eyed to say the least. I was so thrilled
I had spoken to this man. This was my "lesson."
Suddenly, he reappeared asking me now, "will
you have my medal!?" I was very taken back
and not sure how to respond immediately,
this day was not to be about me! He explained
how he had given Rob (director) his medal,
singlet and a note. These items were to
be given to a "Hero." I welled up in tears,
my throat tightened and my heart raced,
as I now knew I could not deny this man
and his deceased daughter the honor! I also
had to accept at the same time that I too
was a Hero that day and was worthy of this
incredible medal of accomplishment.
I said, "I would be nothing short of honored
to accept your medal." Tears now openly
flowed in all of our eyes. This was a moment
nothing short of a "Divine intervention."
We all were Heroes in our own ways and we
all got our medals. Rob handed me the package
containing the medal etc. I told Rob I felt
"unworthy," this truly was just too much.
Why me? His reply, "Bob, I can't think
of a person who deserves this more!" I could
not contain my emotions as my heart literally
ached with joy and overwhelm. I embraced
runner #14504 one more time as he then disappeared
just as fast as he came into my life. Someone
pinch me, this cannot be real! We all looked
at each other in disbelief. At dinner, I
was dying to read the postcard that was
enclosed. The curiosity got the best of
me! I had gathered a few extra tears by
then and thought I was prepared. Here is
what we each read as I passed the card around
the table. We each bawled openly as we were
affected by this tragic story in our own
personal ways:
another ambulance eventually did take me.
I
cannot begin to tell you the feeling of seeing my
good friend Richard on the Jeopardy show (“Tournament
of Champions,” mind you) one month and seeing him
on his deathbed the next month. We said a verbal
good bye and hugged him as we left his home. It
was so bizarre knowing that the next morning he
would turn up his morphine pump and go to sleep
forever. He told us he had just turned 50 and lived
a full life. I tend to think not. I miss him a lot.
you not know about. They do buy those living with
HIV some time. At a huge cost however to the organs.
Not to mention the huge financial cost of upwards
of $3000.00 a month or more. Also, not every one
can tolerate them; or they grow resistant to them
as I have and are on salvage therapy. 