Why? I gave him my Word.
Tonight’s sharing, three years to the night of his departure, is dedicated to the memory of my youngest brother, Captain Kevin Drue Donnelly, for his suffering, for the courage and especially for the dignity with which he led the ‘public’ last 2.5 years of his life.
“Can
you feel it coming in the end of night, hold on.
I’ve
seen your face before, my friend, but I don’t think you know who I am.
I
can feel it coming in the end of night, hold on.
How
could I forget?
It’s
the first time, the last time we ever met.
I
know the reason why we keep the silence ...
The
hurt doesn’t show, the pain still grows, so strange to you and me.
I
can feel it coming in the end of night, hold on.” Phil Collins
When people gathered during the small funeral at Dalton Funeral Home, no obituary in ‘any’ newspaper shared that he had lived and/or died, a requirement from his widow, his second marriage in 1990, to have the American flag draped over his veteran casket – there was no announcement to announce his departure.
No one, I believe, gathered to celebrate the life of Kevin – not until Washington DC, two years and nine months after August 5th, 2000.
He was a solider in this world. He shared with less than one handful the horrors in his private world.
After his diagnosis, due to the severity of the disease, Kevin stopped dancing. He stopped whistling ‘tunes’ on the radio. He stopped running, and he stopped his favorite sport, pole vaulting. He stopped his winter and summer mountain climbing in the Catskills and backpacking with his best friend from second grade.
I was very concerned when he stopped what he truly enjoyed after, I believe, seven years. Kevin stopped volunteering as a coach in Lindenhurst, NY, High School. When he was rewarded the certificate for his coaching, Kevin was too ill to leave his residence.
His world changed course, too quickly.
“Like
a rock, I was 18 and didn’t have a care.
Working
for peanuts and not a dime to spare.
I
was lean and solid and aware.
Like
a rock, my hands were steady, my eyes were clear and bright.
My
steps were quick and light, and I held firm to what I felt was quick and
right.
I
was strong as I could be.
Nothing
ever got to me.
I
was something to see.
Like
a rock, I stood proud, I stood tall high above it all, I still believed
in my dreams.” Bob Segar
When
Kevin reached out, and back, to those from his childhood, it is so sad
to share, that it was because people he chose in the last years of his
‘healthy’ life, they were not there. Facts reveal this to be true.
The
birth family, childhood friends and few veterans that ‘actually’ met Kevin,
were the ones who stood with him, listening, witnessing.
Why? I gave him my Word.
There
was a handful who waited at Calverton Cemetery, NY, when his casket was
quickly removed off the green outdoor carpeting, next to the small gold
velvet cushions, on small little chairs.
Kevin’s
life, adventures, diagnosis, illness, death, burial and actions of ourselves,
others and from strangers are still, unbelievably shocking.
“Let us then, be up and doing with a heart for any fate, still achieving, still pursuing, yet learn to labor, to wait.” Henry Wadsworth Longfellow
As
I had promised to listen, I did. It was unbearably hard to listen, to watch,
to read, to witness ‘to’ the inaccuracies as they attempted to become facts.
I
had promised to listen, if I could.
I
had promised to be there, if I could.
I
had promised, over and over, to document, if I could.
This
was Kevin’s wish.
Had
I have had one wish?
What
would that have been?
That’s
the easy question.
Why? I gave him my Word.
I would have wished that my brother Kevin had never been injected with a Hepatitis shot, experiment, while he was a teenager who enlisted in the military.
Kevin was treated for “non-Hepatitis,” 24 January 1978 to 2 February 1978, 5th General Hospital Germany, 651st Med. Co. (AmB). ***from Kevin’s own handwritten notes and official documentation.
A sister would have had a wish much different from Kevin’s request to listen, to document, post- his terminal diagnosis.
My
mom and dad and so many other moms and dads would have wished the virus
that so many knew about in 1942 from Brazil, from a bad serum of a bad
Yellow Fever vaccination, had never been injected into people in Brazil,
and
then later -- that the virus had never been injected in 1943 to soldiers
serving in WW II in Europe.
The facts are all there. I’m not sharing something new.
Kevin
wrote about this in his entertaining novel wherein he documented facts,
braiding the facts into fiction. Read his “The Panama Story”.
If you read his book, free on the Internet, you might have the same wish
I do.
Could
Hepatitis have been prevented from being spread in 1942? Perhaps.
Yes, truly, perhaps.
“Follow the money.” Deep Throat, Watergate
After his diagnosis, December 23rd 1997, Kevin focused because he believed there was nothing else to focus toward, after he learned he ‘had’ Hepatitis C. He learned this ‘silent’ disease qualified him on his first doctor’s visit to receive the accompanying statement that stunned many of those close to him -- long before anyone in the Hepatitis community even knew of Kevin Drue Donnelly. We knew, we were shocked, and we hurt, a lot.
After his diagnosis, the doctor shared with Kevin: “And you are not be a candidate for a transplant. Have a Merry Christmas.”
How do I know? He phoned my brother, his elder brother, also a veteran.
My youngest brother phoned my dad in the hospital, just out of life-threatening surgery. He was still hooked up to morphine and multiple machines. My dad and Kevin joked about ‘a’ race to heaven. It took my breath away.
I learned about Kevin’s diagnosis, with my husband, from my dad, when I re-entered his hospital room. I had departed to ‘get’ a Subway sandwich and an iced tea. Again, we cried together, before the Hepatitis community and Kevin were ‘properly’ introduced.
“20
years now, where did they go?
20
years, I don’t know.
I
sit and I wonder sometimes where they have gone.
Sometimes
late at night … the moon comes calling a ghostly white, and I recall.
Like
a rock, standing arrow straight.
Charging
from the gate.
Carrying
the weight. Like a rock.” Bob Segar
Kevin’s
suffering did help others, sadly, so many others. And for that, my
heart still hurts for the suffering he endured while he was alone, helping
others who knew so little of the truth of my brother’s life and his world.
Kevin chose.
He
was an adult; he chose the final chapter of his life.
“Rather than money … give me truth.” Henry David Thoreau
He chose, believing that he could not help himself. He believed, correctly or incorrect that there was no hope for him as he watched 1997 pass into 1998.
Why? I gave him my Word.
His emails and gathering of facts, stats and form letters to politicians, letters and emails ‘how-to’ form support groups --this was a tropical storm that tore into his world. Kevin chose to fight the good fight.
“Even
in the middle of your sadness, the everyday madness, the ongoing game.
Even
when you can’t find a reason.
Still
there is a reason.
You
don’t need to name it.
Look
on up.
Look
up from your life.” James Taylor
He became very stoic in 1999. He spent all holidays alone in his residence after his diagnosis while many in the world celebrated. Kevin needed to discover what led him to the fork in the road. He needed to find if there were others out there so isolated so quickly, so alone, so quickly. What Kevin learned, changed many people’s lives forever.
“Time to move on … time to get going … and what lies ahead, I have no way of knowing.” Tom Petty
After his diagnosis in December 1997, Kevin stated that he ate all meals alone, save for the one when my husband and I went to say good-bye to him, at his request. He was animated, lively, joking. He shared honestly, sitting on the kitchen counter, feet wiggling as he giggled with my husband and me. I was horrified. He ‘had’ me promise not to cry. I sat tall in the kitchen chair for hours, tall, and blinking, swallowing back tears. I didn’t cry. I ‘had’ to honor him then as he was alive, perhaps just as I have to honor him now, that he is not.
Kevin was excited to be free from the pain, from the physical swellings, bloating in his body, free from the ever-lingering fatigue. Kevin had one pleasant evening in his residence, so he said. I know he did have other pleasant moments, though alone in the residence, when he did share with others. He had ‘good moments’ with others when he shared about his Hepatitis ‘wins’, his discoveries, accomplishments, and when he seldom shared his personal experiences.
I have held back, folks. It’s all documented, in the hands of others. I’ve been respectful. I’ve witnessed and waited as my brother, Kevin asked. Just as people move on, so has my Word to Kevin. My Word to Kevin, repeatedly, if I could, while he was alive, actually becomes stronger. Just as the butterfly flies from the cacoon, so must the truth be shared, per Kevin’s last wishes.
“When there is no sun, we can see the evening stars.” Heraclitus, Greek Philosopher
Kevin spent the 1999 Christmas morning alone on an ER cot next to a cotton fabric wall in the ER ward after he phoned a veteran, a neighbor, to drive him to the hospital at 4:30 a.m. Kevin phoned me at my brother’s home. He ‘had’ me promise not to tell my parents Christmas afternoon about his hospitalization, and his decision that he believed he had to withdraw in 2000, knowing his time was limited.
My mom knew. Once I was off the phone with Kevin, I could not make eye contact with my mom and dad. Mom knew. Perhaps mothers always do know. So sad, yet what a blessing to be part of such a personal choice, a ‘knowing’ of what would be. Mom knew.
“Only
the good die young. The stained glass curtain that you’re hiding behind,
never lets in the sun.
Oh,
darling, only the good die young.” Billy Joel
Yet he did not share his personal illness and problems with the veterans, the people who emailed him and with whom he emailed each day. Kevin reached high, sat tall while he emailed many of you. He told me how he slouched as his pains changed and when his body swelled.
Kevin, with beautiful blue-green eyes, did view his world, comforted in his residence by his five cats, his companions until the end. Kevin did get to choose, though he chose from a limited window back in his time.
“I’ll
light the fire while you place the flowers in the vase that you bought
today.
Staring
… for hours and hours, while I listen to you play your .. songs …
Our
house, is a very, very fine house with two cats in the yard
La,
la, lah, la, la, la, lah, lah, la, la, la, la, lah, lah, lah …." Crosby,
Stills, Nash & Young
Those
of you may pause to judge my brother, do not know the Hepatitis C world
of 1997 to 2000. You do not know the isolation, the medical and family
ignorance and naivety (my own included). We knew zip about Hepatitis
C in 1997.
What
we did know was not entirely accurate.
“Don’t judge me. You could be me in another life, in another set of circumstances.” Sting
Now we know that people receive the virus, Hep C, from a variety of many events.
“I’d
love to tell you to stay inside the lines.
But
some things are better on the other side.” John Mayer
We didn’t hear or read how Hep C was acquired from transplants. We didn’t hear about tainted blood banks. We didn’t grasp the medical ignorance or drug company influence, containing eager people, eager to receive grant monies.
“When I die and they lay me to rest, I’m gonna go to the place that’s the best.” NOrman Greenbaum
We did not hear, horrifically, about the people who did not entirely, truthfully, assist people with Hep C as they were experimented upon in those years.
“No
one knows what it’s like to be the bad man, to be the sad man, behind blue
eyes.
No
one knows what it’s like to be hated ...
No
one knows what it’s like to have these feelings, and I do, and I blame
you.
No
one knows what it’s like to be the bad man, to be the sad man, behind blue
eyes.” The Who
More
than we ever knew was occurring behind the scenes. There was a machine
behind the black curtain.
I
am the first to share, I did not believe it. I could not believe
it. I now know the black curtain was more than fiction in the land
of Oz, far ago and far away.
The innocents of that time, now know to do more than listen silently.
“Laugh
about it, shout about it.
Any
way you chose, when you laugh about it, you lose.” Simon and
Garfunkel
We now know what other diseases and communities learned the hard way. We know to ask questions, to ask hard questions. We know things that were not comprehensible back when my brother was working day and night to find the origins of his disease and the truth of what would prevent others from the spread of Hep C.
“Listening
is easier with eyes closed to understanding more than you see.
It’s
getting harder to understand more when it works out, and it doesn’t matter
much to me.
Let
me take you down cuz I’m going to Strawberry fields, nothing is real, and
nothing to get hung about.
Strawberry
fields forever.
Always
know sometimes, I think it’s me, but you know, I know it’s a dream … that
is, I think I disagree.
Let
me take you down cuz I’m going to Strawberry fields … Strawberry fields
forever.” The Beatles
You do not know the ‘shame’ of having a doctor tell you -- “or” the shame of having an official letter mailed to your home by the military that you “had either ‘done’ drugs or had engaged in homosexual behavior.”
“I am invincible, as long as I am alive.” John Mayer
You do not know that there were people in the Hep C world who pointed pointy fingers at my brother and attacked him on Hepatitis C message boards.
“Ahhh,
I climbed a mountain and I turned around, and I saw my reflection in the
landslide hills,
until
the landslide brought me down.
Can
I sail through the changing ocean’s tide?
Can
I handle the season’s of my life?
Hummmm,
ummm.
Time
makes you bolder ... And I’m getting older, too.
And
if you see my reflection in the snow covered hills,
Well,
the landslide will bring you down.” Stevie Nicks
There were people who wanted Kevin to spend his time defending his actions. I can still hear his voice, Kevin’s voice, saying loudly, “Nah, ain’t got time for that. I’m going to help the veterans, and this time no one gets left back.” Kevin would sigh, formulate a tart remark and move forward. He didn’t spend his limited time defending actions he knew would help others.
“It often requires more courage to dare to do right than to fear to do wrong.” Abraham Lincoln
Kevin
used to write, if you disagree, bring it on home, but bring the facts.
Kevin chose not to spend his limited time apologizing, attempting to placate.
He chose not to ‘make nice’ with people that could not move the ball forward.
It
was pretty black and white to Kevin.
Why? I gave him my Word.
Bring
the facts, share the facts, change the facts, educate about the facts to
prevent history from repeating the facts.
Pretty
simple, right, from his own world and from people who were receiving the
benefits of his absence and the benefit of his research? No.
“I
ain’t scared of dying, and I don’t really care, and
if
it’s peace you find in dying and if dying time is near, then just bundle
up my coat cuz I hear it’s cold down there, yeah, crazy cold down there.
I
can swear there ain’t no heaven, but I pray there ain’t no hell.
But
I’ll never know by living, yes, only by dying will tell.
Give
me my freedom for as long as I be.
All
I ask of living is to have no chains of me, and all I ask of dying
is to go naturally, is to go naturally.
Here
I go .. yeah ….
Don’t’
want to go uneasy … Just let me go naturally” Three Dog Night
Captain Kevin Drue Donnelly’s emails and the history of his research prove this to be true. Kevin worked overtime to help others. This decision prolonged his suffering. Kevin would not “do” the experimental drugs back then. Kevin would not receive a ‘free’ transplant in exhange for …
Kevin’s decision not to sell his research and/or to sell the story he wrote, one chapter each night, “The Panama Story”, had such a swift shift in his life. He knew then. He shared then. The saddest part to me, is Kevin knew, and he documented. He shared this with others. Had he sold his research, endorsed the products or drugs, sold his story, Kevin’s residential home and the life lived alone at the computer would have been completely different.
“Dogs bark at what they don’t understand.” Heraclitus, Greek Philosopher
Yet
my brother chose a different path. He chose. Kevin chose to let time
tell his story. He always told me and wrote, “People will know after
I’m gone, they will know. What a great group to inspire. I’m
getting mine back in spades.
And
by the time I’m famous for my research, I will be dead. Que-cera-cera”.
Kevin would not permit the fog of Hep C back then, and the complications
it brought, to quickly and silently enfold his world, his research, his
life.
“The doctor inflicts pain to cure suffering.” Heraclitus, Greek Philosopher
He would not permit the chemical confusion of an experiment, perhaps for a doctor’s study, to possibly receive ‘grant’ money, to slow him. The disease was doing that just fine, thank you.
“If elephants could fly, I’d be a little more optimistic, but I don’t see that happening any time soon.” Shania Twain
His phone lines were tapped. His home was occasionally watched. While Kevin was alive and during his last chapter on earth, research was taken out of his home. It was. Kevin had a lock on his office door. The lock was broken. It was.
“Even
the best of dreams must end.
Even
so, it grieves me.
Stay
loose, don’t fight it.
Let
it take you all the way, and if it’s wrong, you will right it.
Do
not waste these hours away.” Gordon Lightfoot
I have remained respectfully silent, while I held the truth. The truth needs to be shared. Folders were removed, some a few at a time.
“It
could happen to you, just like it happened to me.
There
is simply no immunity.
There’s
no guarantee ...” Sting
The last folders to be removed were ‘all’ at a time. While he was alive, his files and research, information, was taken and handed to strangers, not to the Hep C community, not to the people with whom he emailed and spoke, not to the veterans he was working to prevent their finality, working to prevent their destinations from mimicking his path.
“Sometimes
you’ve just gotta let it ride.
The
world is changing right before your eyes.” Eagles
Kevin’s information was, in fact, stolen, bit by bit; then it disappeared shortly after August 5th, 2000 from his residence and his office downstairs facing out toward the street where he once played basketball with the children and teens.
“Well,
some say life will beat you down, break your heart, steal your crown.
So
I’ve started out, for God knows where.
I
guess I’ll know when I get there.” Tom Petty
His office window was the camera lens to his world, and the shutter closed and narrowed, until the world blackened after the events I documented in my story, the factual events, the evening of August 4th, 2000, in the residence.
Why?
I gave him my Word.
The
events are documents by authorities, by officials who documented the facts.
Facts are now what we share.
The
inaccuracies and exaggerations are unacceptable. Bring on the facts,
the true ones. Kevin’s life and his death deserve this now.
Why? I gave him my Word.
During the final chapter, when Kevin spoke about the negativity that was sent forth by two handfuls of people within the Hep C community on many a night with his name attached, and the emails that resulted from the information he forwarded into the universe -- they did create ripples.
“I
don’t care what they say any more, this is my life.
Go
ahead with your own life.
Leave
me alone.
I
never said I was a victim of circumstances.
I
still belong …
Go
ahead with your own life, leave me alone.
Keep
it to yourself; it’s my life.” Billy Joel
I found his courage, then to be surprising. Now I know this was what Kevin ‘had’ to do. Kevin had to share with the universe. He ‘knew’ there would be disagreements. He did not know it would be so personal within his residence and within a handful of the Hep world.
“Don’t stop believing …Hold onto that feeling.” Boston
Yet
when Kevin, my brother shared with me, he would sigh loudly, often no comment
attached to the factual sharing.
As
a sibling, I would joke with Kevin, knowing his mannerisms, as a sister
would.
“We
had so many good times and some bad.
We
shared the happiness; we shared the sad … you and I.” Boz Scaggs
While sharing, Kevin would wave his right hand with a lit cigarette that he held, more than he smoked toward at the end. He would wave his right hand in the air. Fluently, with his left hand, he would toss his blonde hair over the left side of his head, and he would share a tart, brief exhalation of speech, before he moved on. The anger toward him within his residence and anger from the few loud people who wanted to profit -- or to draw him into battle, did not truly affect Kevin.
Why? I gave him my Word.
Kevin wanted so much, for his illness and his suffering to help others, to prevent a portion of the actual suffering that so few want now to share. Kevin wanted this to be prevented so other would never share what he knew to be his daily path.
“All
I know can be shown by your acceptance of the facts there before you.
Take
what I say in a different way, and it’s easy to say that this is all confusion.”
The Yes Album
You should know there were a few moments when his hurt from this anger, was more than the pain from his illness or his isolation or from being rejected. But that time was so limited compared to the moments when he found a new fact, discovered a new event or more importantly, most importantly, when he helped a veteran.
“Before
you leave, there’s something you should know, yeah.
I’ve
seen you smiling in the summer sun.
I’ve
seen your hair flying, when you run.
You’re
high above me now, you’re wild and free … yeah.” Bob Seger
I witnessed my brother through emails and phone calls, launch from single moments that propelled Kevin forward into the unknown with energy and a gust for the bleak future he knew was limited. Yet he reached out and grasped the hope of others, as his hopes faded … loudly within his body.
Why? I gave him my Word.
I heard about the eyeglasses he sent to veterans, the gift boxes he sent to youngsters in their first year at West Point, the letters he wrote for veterans who told Kevin they had trouble spelling, but they had defended their country.
“Heaven
holds a place for those who pray, hey, hey, hey.
We’d
like to know a little about for your files.
Look
around you, and all you see are sympathetic eyes.
Hiding
in a hiding place whereon one ever goes, it’s just a little secret.”
Simon and Garfunkel
I heard about the mothers of soldiers with Hep C who diapered their sons, Purple Heart recipients, abandoned by their wives and children due to the fear of an infectious disease, Hep C.
“How can people be so heartless? How can people be so cruel? Easy to be hard, easy to be cold. How can people have no feeling? How can people ignore their friend? Easy to be proud. Easy to say no. Especially people who care about strangers, who care about evil and social injustice. Do you only care about the feeling proud? How about the needed friend? I need a friend. How can people be so heartless? Easy to be proud. Easy to say no. Easy to be cold. Easy to say no.” Three Dog Night
I also heard about his anger at the misinformation, the mistreatment of veterans, the acceptance of having served a country that now seemingly abandoned them … now. But the truth of Kevin’s work and his illness since his death, continues to shine, to bubble up. It ‘has’ to as so little was given to him when he was alone.
This sharing tonight is dedicated to Kevin’s suffering, alone, more alone in his residence and in his world, as he labored, worked to assist thousands and thousands of veterans (they were always first), as he worked to help people, families, politicians, journalists and wannabe Hep ‘experts’.
Why? I gave him my Word.
Yes, Kevin suffered more than ‘any’ of us will ever know after he was diagnosed with Hepatitis C.
“With
a little love we can make this whole damned thing work out.
There
is no end to what we can do together. There is no end.
With
a little push we can send it out.
With
a little love, we can shake it up, don’t you feel the comet exploding?
There
can be no misunderstanding ...” Paul McCartney
Tonight I look to the stars and salute you, sharing with all that I still miss you, Kevin. I miss the brother whom I phoned for advice, the brother who sat and talked and shared so many nights until 4:30 a.m. until I could not keep one eye open any longer. You stood by my side so often. And I’m trying, Kevin, I’m trying to share you once were a young man with whom I laughed and cackled. I miss the brother who could find the blackest humor wherever we went, the brother who wiggled, dancing, all the time. You taught me so much, baby brother. As much as you shared with the veterans and Hep C community, I remember when you shared that energy with your family and your friends and with me.
“I
see a red door and I want it painted black.
No
colors any more, I want them to turn black …
I
see people turn their heads and quickly look away.
Like
a newborn baby it just happens everyday.
I
look inside myself and see myself painted black …
Maybe
then I’ll fade away and not have to face the facts.
It’s
not easy when your whole world is black .
I
could not foresee this thing happening to you.
I
have to turn my head until my darkness goes …
I
want to see the sun blocking out the sky.
I
want to see it fading, fading, black.” Rolling Stones
I will not bow my head, and I will not go to the corner. This is unacceptable in ‘our’ world now. With over 5 million diagnosed with Hep C, you were right. With the accurate numbers and accurate truth not being shared, you were right. With the facts and the unity of those in the trenches and those who give funding, those who receive funding, you were right. With the predictions you had me promise to witness, if I could, you were right. Oh, Kevin, what I would give to have you wrong, now. I would give a lot. Yet your suffering has shed light in the darkest of caves. Your light is continuing to beam, and I promise to help where I can, Kevin.
I gave you my Word when we last hugged. I gave you my Word when I held my hand over your casket, with the American flag belatedly covering your last resting spot, and I prayed for you and for mom and dad. I gave you my Word, Kevin, and now that’s all I have in your name, to share and to continue to tell the real truth and to continue to tell what it was truly like to live in your shoes (to include the times, when you were able to ‘squeeze’ your swollen feet into them prior to the final chapter in your life).
I gave you my Word, Kevin, and I dedicate this sharing tonight to prevent any of the events that you lived, to prevent any of the events that your ‘birth’ family has endured, and to prevent any of the events that members of the ever growing Hepatitis C community will need to silently ‘know’ to be their truth.
“One
thing I got to tell you is that you got to be free; come together right
now over me.
Hold
you in his arms, yeah, you can feel his disease.
Come
together right now, over me.
Come
together, yeah!” The Beatles
“Tonight is the third year to the day that my youngest brother, Kevin Drue Donnelly, departed from my world and entered another. I still miss my brother, a wonderful friend. From the bitterest of sadness', has come hope.
Why? I gave him my Word.
This past year, people within the Hepatitis C community continued to reach out to me, to others and to new members of this ‘family’. I have continued to be cautious, to be respectful. I have continued to share accurately, sharing the ‘Truth’ (I wrote the book, “The Truth: He was A Brother, A Veteran and He Died Before His Time” published two years ago tonight.) I have continued to seek, in this world, the honor and respect that Kevin truly did not ‘see’ while he was here working with the Hep communities, nor the respect immediately after his death.
After his diagnosis, Kevin found a drum. (Yes, he was a musician, and this is a metaphor.) Kevin’s drum was a constant theme. After his Hepatitis C diagnosis, my brother focused. Kevin continued to beat the drum about Hepatitis, sharing facts, the truth, the history, beating out a formula for what he believed would help others, drumming a constant beat to educate, to advocate, to work together, to join ranks together.
“Come
on people now, smile on your brother.
Everybody
get together, try to love one another right now.
If
you hear the song I sing, you will understand
You
hold the key to love and fear all in your trembling hand.” Crosby,
Stills, Nash & Young
Why? I gave him my Word.
Kevin often commented and shared with me that the only good thing to ever come from this disease, was the family that ‘it’ created. Although I was not able to understand this in his lifetime, I learned so much, so much, when I was asked to speak in Kevin’s name to people who knew of Kevin, people with whom he corresponded, and to people who had never heard of my brother. The common ‘bond’ in this family is Hepatitis C.
“Imagine
all the people working together …” John Lennon
Captain
Kevin Drue Donnelly’s eulogy, delayed since his death August 5th, 2000,
has become a reality. Kevin was finally honored with a eulogy, Saturday,
May 24, 2003, in Washington DC, delivered by Kevin's Sister, Monette Benoit.
I,
Kevin's Sister, was asked to be a speaker at Freedom Plaza, May 23rd, during
the “Hepatitis C Movement For Awareness March on Washington & Weekend
of Awareness." The Candlelight Vigil was held in Washington DC, May 24th.
People who knew Kevin, and those who had only 'read' his emails,
and those who read ‘about’ Kevin, attended.
Kevin's best friend from second grade, Eugene, arrived on his Harley Davidson, to stand with me, Kevin's Sister, and to honor Kevin.
This eulogy, though long in waiting, was an honor to my brother, to honor Kevin. As his sister, I had waited and listened for two years and nine months. That ‘special’ weekend, I was able to speak, to see and to learn of the grand respect that people shared for Kevin, their friend, their comrade, importantly, their veteran, and yes, a leader.
Why? I gave him my Word.
The request to be a speaker and the opportunity to eulogize my brother arrived as mysteriously as the disease entered Kevin’s life, after military vaccinations, a diagnosis of non-Hepatitis, long ago and far away. The silent ‘shift in his life’ had begun, though none of us would know for over 20 years. The possibility of honoring Kevin with a eulogy arrived as quickly as Hepatitis C entered my family’s private world. The request arrived as mysteriously as the path Kevin embarked upon, hoping to work with others, to share, to lead, to advocate, to research and to study Hepatitis C, helping veterans first, then family members. The path he entered, turned out to be a ‘solitary’ chapter in his life, due to the actions of people close to him, due to his own actions and resulting from the ‘quick’ diagnosis that changed our life.
“I
must be moving on.
I
never look behind me, my troubles will be through.
Good
bye stranger, time to see your point of view
Hope
your dreams will all come true.
Will
we ever meet again?
Feel
no sorrow, feel no shame, come tomorrow, feel no pain.
Good
by stranger, it’s been nice.
Hope
you find your paradise.
Good-bye
Mary.
Good-bye
Jane, will we ever meet again?
Got
to go, hit the road. Got to go. I’m sorry ...” Supertramp
Early one Monday morning, an email popped up on my computer screen, as I worked. The email was over two years old. This was not the first time an ‘old’ email had suddenly ‘just’ appeared on my computer screen. I grimaced, winced, waited two hours, continuing to work in my world. Reluctantly, I reached out to the Hep C world, again.
Why? I gave him my Word.
I emailed the sender of the email, from two years ago. Cautiously, I wrote an email to the lady who had emailed me after Kevin’s death, the one who knew Kevin through the Hep C community. Reluctantly, I shared that the email ‘popped up’, and I was wondering: How are you?
The
woman wrote back almost immediately. She believed Kevin had ‘caused’ the
email to appear on my computer.
There
was suddenly discussion, again, as to ‘how’ my brother, Kevin Drue Donnelly
‘really’ died. When she saw the emails, she shared with others, what I
had shared, one year to his death in my book, “The Truth: He was
a Brother, a Veteran and He Died Before His Time.”
I used the name ‘Monette Harrigan’ to share what I had learned and what was ‘the truth’. That name was used for a very specific purpose and I do share when requested. I sent my book to LeighAnn Vogel to forward into the Hepatitis C world. I hoped that people diagnosed with illness and especially, Hepatitis C family members, might learn from the ‘truth’, as I worked to put the truth back into Kevin’s life.
“I
am a boxer and I’m going home.
I
am leaving, but the fire still remains.
Lah,
lah, lah, lah, lah, lie, lie, lah, lah, lah, lah.” Simon and Garfunkel
Too many inaccuracies had appeared. The incorrect rank on his tombstone was my ‘enough meter’ (after witnessing, as Kevin had requested) for me before I seriously sat down and focused, honed the attention, just as Kevin had done. Kevin refocused when he received a copy of his military vaccination records and learned they were not the original ones that he had stored in his personal file cabinet. (Kevin always followed the “motto, keep everything from the military except the toilet paper, and keep that, if you can.” He shared with me that it is a common quote within the military.) Kevin’s compliance of this practice, changed his life around forever. (I shared that within my book, "The Truth" the sequel to “The Panama Story” written by Kevin Drue Donnelly.)
“We
don’t need no education.
We
don’t need no false control …
All
in all, it’s just another brick in the wall.
If
you don’t eat your meat, how can you have any pudding?” Pink Floyd
I waited one year to the night to share honestly, as I listened and witnessed. I wrote what I knew to be accurate and about what I knew was not; I shared facts. This lady, with whom I wrote that Monday, had recently shared with people, via email that Kevin died with a gunshot wound (not her exact words). There still are individuals who have other ‘thoughts’. They were ‘challenging’ her, in email.
“It’s
not over; it will never be over for you, soldier, soldier.
Do
you remember the war?
It’s
not over.
It’ll
never be over for you.
It’s
not over, till they stop playing war with you, soldier, solider.”
Stephen Stills
Again,
I bowed my head, sighed, waited and listened to my heart. Then I responded.
I, again, shared what I knew.
I
asked her to please send my email to anyone ‘challenging’ her ‘truth’ of
Kevin’s death. As Kevin’s Sister, I learned to listen, after his diagnosis
and especially since his death. As I was writing this, I wrote to ‘her’,
asking permission if I could share her name. "Carrie Nation", (wenatchee71@hotmail.com),
responded and lit my world for one moment, another bright light from Kevin’s
world.
Carrie
wrote: “My name is ‘out there’ all over the web. People who just learn
they have this, need someone, who ‘like Kevin’ will not stop with one Dr.
and one answer. I'm one of those people. I'm sure Kevin played some
part in the CDC now admitting that the ‘gamma globulin shots’ did have
the RNA in them to give the HCV, a start in the human body.
I
so miss his e-mails and our sharing of information we find here and there.
Yes, of course you can use my name. ((((Hugs))))”
I responded to Carrie that Monday morning requesting that she forward my email to ‘any people’ questioning Kevin’s life and how he ‘really died’. The next day, I believe, an email arrived with about five email names, as copied recipients. They all seemed to know each other. There were no formal names, only email names. A thread of conversations began. I attempted to answer what I could, how I could. After about the fifth email (an estimate here), I asked to have the names of the people with whom I was writing. I also remember writing that if anyone has any proof, come on, bring it on in. I have worked to be respectful to people involved with Kevin, since his diagnosis and post-his death.
People were, again, writing how they ‘knew’ Kevin, they researched with him, and/or they spoke to Kevin. I have been respectful to each, knowing Kevin never ‘met’ any people within the Hepatitis C community. He was ‘on’ 24/7, working on his computer, returning and placing phone calls, helping where he could. Any time spent socializing, would be time he did not spend helping others and moving his research forward.
I
teased my youngest brother that he had become the Hep Radio; all Hep, all
the time. But he did not go to any meetings, rallies, marches, speeches.
Kevin was in the trenches January 1998 to August 2000, trying to lead,
trying to create a path for many to follow, trying to research the facts,
to discover the hidden truths, to share the true facts of hepatitis, to
ensure that others did not suffer as he was. Yet Kevin developed a few
special relationships, friendships.
Many
knew him; many thought they did. A special few truly did.
One day an email arrived from Tricia Lupole. It was short, to the point. She wanted to speak to me. Few had asked to speak to me.
As his only sister, I grieve too. I often walk a fine-line as the sister who listened while he was alive, the sister who listened after he died, and the sister who wants to prevent others from ever traveling the path Kevin wanted to sprint. My brother Kevin was a warrior, not a gladiator. He stood his ground, but he did not go hunting fights. Kevin had a belief system. Facts, facts and then more facts. And then, back it up with the truth and facts, not theories, conspiracies, secrecy, and Kevin used the word I chose not to use, he spoke about ‘lies’. I speak about ‘inaccuracies’.
Why? I gave him my Word.
Kevin’s time was limited from the day of his diagnosis, per his doctor sharing that he had Hepatitis C.
“No
one said it would be easy.
No
one said it’d be this hard.
No
one said it would be easy.
No
one thought we’d come this far.” Sheryl Crow
Kevin chose not to fool around about this disease, unless his funny sense of humor and spontaneous giggling, arose from within. Those moments were not frequent, as time marched on. Time was not on his side and he was ‘very’ alone, not having one person eat with him in his residence 2.5 years after his diagnosis, until my husband and I flew to “say good-bye,” per Kevin’s request.
When Tricia shared how she knew Kevin, I agreed to phone her. We spoke. She asked questions; I answered what I could, listened, shared what I could. I did reply to questions about he ‘really died’. Then Tricia shared about the Hepatitis C Movement for Awareness, March on Washington and Weekend of Awareness. She invited me to attend and offered an invitation to speak about Kevin. She joked, “Am I getting you excited about this?" I truthfully joked, “No, you’re getting me scared about this.” We shared, laughed; then she mentioned Kevin was going to be included in the Candlelight Vigil. The gauntlet had been tossed.
Why?
I gave him my Word.
The next day
at the birthday party of my eldest brother’s son, I sat with my parents
in the hot Texas heat. While my nephew was attempting to ‘beat’ a piñata
with his party buddies, I quietly shared Tricia’s conversation with my
mom and dad. For a few seconds, we watched the children jump and strain
to beat that piñata.
I
remember my reply, “really!”
“Yes,”
Tricia said. Well, that changed almost everything. We chatted about the
fact that Kevin had never received a eulogy; he had never been eulogized.
After two years, I would quietly, seriously share: “Goldfish have
better funerals than my brother, even a goldfish ‘gets’ a eulogy.” I said
that the eulogy itself was important enough for me to seriously consider
attending; speaking would have to be given ‘some’ consideration.
I
remember sharing that if I did go, I ‘really’ would not be able to ‘really’
answer continually how he ‘really’ died. Tricia was very kind. We ended
our call on a positive note, Kevin would have been honored.
My dad, arms folded, hands clasped, said firmly, quietly: “I want you to go; you have to go. You have to go and validate Kevin’s work and his research. I want you to go.” I blinked hard. I looked to my left.
Mom leaned forward, listening, hands rolling over each other, nervously. Tears in her eyes, my mom, Kevin’s mom, who still cries each time she speaks of her youngest child, said very quietly, almost a whisper, “I don’t know how you could go and do that. I don’t know how anyone could do that.” Without hesitating, I heard myself reply: “If I could have gone to the funeral and done ‘that’, I can do ‘this’. To have gone there and listened and watched, I can certainly do this.”
The
decision was made, in real-time, as I heard myself saying that I would
go for Kevin, mom and dad. My dad nodded, quietly; he said, “You’ll do
a good job. You have to go, for Kevin.” We sat silent, the piñata
had burst, candy covered the yard. Small children dove onto the ground
to retrieve what their little hands could hold. I stood, and went into
the air conditioning, to clear my head. Thus, began my trip preparations
for Washington DC.
It
had been decided.
Why? I gave him my Word.
As simple as it had been decided that “you will go to the funeral and represent our family”, dad still post-op from surgery and unable to travel. My mom and brothers chose to stay with my grieving and healing dad, each grieving in different spaces. I had gone to the funeral alone, now I was going to Washington DC, alone. When Kevin died, my family had just moved, and my husband had just started a new job. He ‘could not’ take off from work. I understood, head bowed, and flew alone. As I spoke to my husband about this decision to go, a husband who had been so very patient for the past two years and nine months, said, again, he ‘could not’ take off from work from a ‘new’ job.
Andre was like an elder brother to Kevin, and I know Kevin respected and even better, liked’ my husband. They were friends, joking as only ‘guys’ can. Often I would just shake my head and giggle watching them together. Again, I was going alone, for Kevin.
That night I phoned Eugene, Kevin’s best friend from second grade, and left word, as I had the evening of August 5th, 2000. After speaking to my family, Eugene had been my first phone call that night. Eugene returned my call later, as he had in August 2000. Yes, of course, he would be there. When? Where? And it just so happened that Eugene would be in Washington DC for Veterans Day with the Harley Davidson, Rolling Thunder group, to honor veterans. The timing couldn’t have been better, for Eugene.
Again, I contacted LeighAnn Vogel and Phyllis Beck for any advice, wisdom. Both encouraged me to go, to be honest, to feel the ‘love for Kevin.’ They continued to share what I was not able to understand; people felt very strongly about my brother. It would be good for them to meet me, and it would be good for me to meet them.
Suddenly,
much of the pain and the ‘gut’ anxiety came back, like a black wall, it
quickly rolled back into my world.
Feel
the love for Kevin? Yes, I would very much like to feel love and to see
it, for Kevin.
Why? I gave him my Word.
Again, I turned to the mentors and pillars in my world. Each person insisted that I had to go. Not one person felt that I should possibly ‘think’ on it. Many wrote me inspirational emails. So many empowering sentences were sent to make me stronger, I put them together in one document, printed it and packed it to go to DC with me. Yet the anxiety continued to grow.
One person wrote: “Go, be guts and go.” I wrote back, “How can one ‘be’ guts?” He wrote back, “You are guts and blood and you are strong. You must go and be yourself. You are stronger than you realize.”
Another wrote: “You must go and pay homage to your brother. Your very presence will be a symbol for the commitment you have created, and it will be seen by people with Hepatitis, each with family members. Your presence will honor your brother for his work, his sacrifices and for his death.”
One girlfriend wrote, “Go and feel it all, the good, the bad and take it all in. You have to because you are strong.”
I phoned Tricia to ask if the invitation was ‘still’ there. Could I be included to eulogize and to speak? Patricia Lupole, National Coordinator, Hepatitis C’s Movement for Awareness was gracious and said, ‘yes,’ there will be many who knew your brother. She, too, believed it would be good to come, to meet, to speak. I was focused on the eulogy.
The “Invitation To Speak” arrived in my email April 28th. I had prayed long and hard and then decided, again, to lean into the wind. I went online and registered to become one of the speakers for the “Guest Speakers at Freedom Plaza.”
I made the plane reservations. My mom and I went shopping. I wanted proper attire, fresh, for a new beginning. My mom and I shared many private moments together as I prepped to go, very bittersweet, yet loving. Please note that my family did not have the opportunity to all gather after Kevin’s funeral. The separation in spaces, affected each of us, personally.
Why? I gave him my Word.
The day of my flight, my plane was scheduled to leave around 6:00 a.m. Forty minutes from the airport, my dad offered to drive. He arrived at 4:45 a.m. to take his daughter to the airport to eulogize his son and to speak at Freedom Plaza for Kevin. I had risen at 3:30 a.m. to finish my presentation. We arrived at the curb of the airport; I was not allowed to check my luggage; I was told the plane was overbooked. There was a possibility I might not get my bag onto the plane. My dad and I quickly kissed good-bye; I zipped into the airport.
I
stopped a man, eyes filled with tears; he took my bag and put it on the
ramp for the airline. I thanked him profusely.
He
would not accept a tip, when I explained why I had to get on ‘that’ plane,
my shoes in my hand, as I stood barefoot for security. The U.S. was on
‘Orange’ alert for ‘terrorists’. There was a little ‘security’
drama getting onto the plane, but once aboard, with my bag promised to
arrive in Washington DC, I was able to breathe a sigh of relief.
“There’s a law of the jungle, there’s a law of the land, if you get caught in the middle, you try to make it the best you can.” Bonnie Raitt
Many
hours later, I checked into the hotel. I went to my room. There were people
all over the lobby, chatting, laughing. The man at the front desk,
asked me if I was one of “those people who have been emailing each other
for two years.” Confused and very tired, I did not understand. He explained,
the people at the hotel for this convention had never met, but they had
been friends for two years. He wanted to know if I was one of them. I bowed
my head and said, no. He further asked why I was attending. He truly was
interested. I was exhausted, hungry and wanted a pillow.
I
shared that my brother ‘had’ Hepatitis C. He wanted to know if my
brother was ‘here’. I looked at him, slowly and quietly said, “My brother
had Hepatitis C, then he died. That’s why I’m here.”
Aghast,
he inhaled. I said, “Oh, come on. It’s the truth.” He wanted to know
how he could make my stay comfortable.
By
now, I was laughing with him. I did not introduce myself to anyone in the
lobby. So many people were laughing, hugging, a wonderful first impression.
“Everybody
is talking at me, I don’t hear a word they are saying, only the echoes
of my mind
People
stop and staring, I can’t see their faces, only the shadows of their eyes.
I’m
going where the sun keeps shining, through the pouring rain.
Woah,
woah, woah, woahhhhh, woooha, woahhh, woahhh, woah, woahhhhhh. Ahhh”
Glen Campbell
Why? I gave him my Word.
The “Kick Off Rally” began at 7:00 p.m., Thursday, May 22nd, 2003. I was so anxious, very nervous. I said a prayer and left my room. I arrived at the ‘rally’ and stood on line to sign in at the table by the entrance. There was so much laugher, people hugging, smiling, families together with children and teens. I stood alone, on line. When I approached the sign-in table, the lady asked me who I was. I replied, “I’m Kevin’s Sister.” She looked surprised, suddenly, brightly smiled, held out her hand, started speaking to me, excited. The man in front of me turned around. He stood almost 6-feet. He grabbed my right shoulder. He excitedly, held onto my shoulder, hugged me and said, “You’re the reason I came here. I wanted to meet you. When I saw your name on the speaker list, I knew I had to come. I knew your brother ….” I semi-panicked. I blinked hard.
The man continued to talk. He gave me a business card. I stood stunned, listening, not fully able to understand, his hand still holding my shoulder. I said that I needed to check on something … and moved away from this kind man, who was so excited to meet Kevin’s sister.
I quickly stepped into the crowded, noisy room and walked over to one of the quilts with Hep C. Each patch had the name of a person with Hepatitis C. I looked for the patch my mom, her twin brother, my brothers and husband had shared to be included. It was not in front of me. I continued to read each patch on the quilt. I stood at the front of the room, alone. I bowed my head. My eyes filled up and I realized, “Oh, dang, this is going to be harder than I realized. I had no idea …” My thoughts raced, as I stood, trying to calm myself. I prayed to God, to my granny and to Kevin, for strength. I wiped the tears from my eyes, put my shoulders back, chin up, as mom taught me, and walked back to the sign-in table.
Bruce was talking to several people. I went to the line. A few people ‘nudged’ me to the front. I could hear “that’s Kevin’s sister …” Again, I tried to speak to the woman, smiling sweetly at me. She asked me to sign my name. I was still shaken and shaking.
It took four attempts for me to gather the handouts, to sign my name and to leave the table. After I departed the table, someone came to give me the handouts I had left at the table. I smiled nervously and said, “It’s been a long day.” The man laughed, nodded with a big smile and hugged me.
Why? I gave him my Word.
So many people were gathering around to introduce themselves, to share ‘how’ they knew Kevin. It had all happened so fast. It had overwhelmed me. I then asked where Tricia was. I wanted to introduce myself. When I met Tricia, she threw her arms around me. I remember telling her I was a little overwhelmed. She just threw her head back and laughed a wonderful laugh. She encouraged me to go to the Silent Auction table, to view the items, to meet the people. I gave Tricia a private family photo of Kevin, one which I had offered to share. Then I walked to the table to view the items.
A few minutes later, someone tapped me on the shoulder. I inhaled deeply composing myself and turned around. The same man who had grabbed my shoulder was there. This time he was calm, he smiled. He spoke slowly. He introduced himself, again. He did not hold my shoulder. He stood and spoke softly, slowly. He shared that he knew Kevin; he truly wanted to meet me. I listened, anxious, and my eyes filled up again.
Two years and nine months of solitary time to learn the truth, to listen and to honor Kevin, sharing the ‘truth’, it had all culminated in this moment. I smiled at Bruce Burkett, President, Missouri Hepatitis C Alliance, when he said, “I really scared you, right?” I said, “oh, yeah.” Then we laughed.
He shared and I listened. I shared and he listened. He learned about Kevin, the person/friend with whom he corresponded, and I learned about my brother, the veteran/advocate who shared and worked with Bruce, both veterans.
When I turned around, a woman was standing there. Bruce said, “I don’t mean to monopolize your time. Others here want to meet you too.” The woman, beamed, her hands clasped together up near her chin. She was so excited to meet me.
When Dawn Stewart, Founder, Facilitator, Help & Hope for Hepatitis Support Group, shared how she knew Kevin, I hugged her. Then she told me she was nervous to meet me. The evening launched and it was very special to me; Kevin would have been proud. Oh, what I would have given for him to have been there with us.
Many people approached, one by one, in a family, or in a small group, to introduce themselves to me. Many shared how they ‘knew’ Kevin Drue Donnelly.
Helen Clark, Co-Facilitator, LiverHope, Inc., told me that the night they learned Kevin had died, August 5th, 2000, they were having their state Minnesota convention. They had, as a group, paused, bowed their heads, praying for Kevin, together. Some of the people I met, I remembered their names from when Kevin emailed and spoke to me. I remembered some of the stories Kevin had shared with me.
When I learned Steve Kersker, Hep and Vet Action Now, FL, was in the room, I went and introduced myself to him. I have great respect for Steve. He works with homeless people in St. Petersburg, Florida. One of the handouts in the packet, profiled his work. When I glanced it, I asked for him to be pointed out to me. I waited to speak to him. A kind man, gentle eyes, huge heart. Steve and I have a common bond, other than Kevin and Hepatitis C. Steve and I have each been in the trenches with the St. Vincent De Paul Society, assisting others. Steve has made the true commitment, and I was humbled to meet this wonderful man.
One
of the items at the silent auction table was a glass barometer. I waited
until the very end, until I signed my name.
I
had always wanted one. A man watched me enter a bid. I wondered if it was
perhaps the person I had just ‘over-bid’. After the auction finished,
he approached, introducing himself. Ed David, aka, Brightstra, ‘knew’ Kevin.
He wanted to know if I had ‘gotten’ the barometer. I apologized and shared how I had always wanted one. He laughed and said, “Oh, no, you’re Kevin’s sister. I want you to have it.” He shared how he knew Kevin, both veterans. Listening to Ed, I realized, yes, this was one of the people who truly knew Kevin, as did a few.
The favorite part of my evening was ‘pure Kevin’, as I call it. Two ladies approached and waited. When I looked over, they said, “We want to meet you.” The people I was speaking to, departed. I looked at the two ladies, smiling and eager to meet me. All evening people shared incidents, moments, memories, good times and sad times that they had shared with my brother. I waited, for yet another memory to be shared. They smiled and at the same time said, “We want to know who Kevin is. Who is Kevin? Everyone seems to know him; we want to know who Kevin is.”
I threw my head back, laughing. These ladies were the individuals my brother labored to assist. When I shared a brief history of Kevin, his research, Hep C, they told me they were new to this world. One woman said this was the first time she had been in a group where she had ever told anyone she had Hep C. She confided to me, tears suddenly in her eyes, she was ashamed to have Hep C. She had never told anyone. She felt “dirty”. The other woman quickly shared why she was at the convention. I reached out to hug both of them; they reached out to me; we had a group hug.
Why? I gave him my Word.
I shared what I knew, third-hand, from my brother. I knew people in the states where they lived, who were in the trenches. (Out of all the states in the U.S., these two ladies lived in states where I knew people in the Hep C world who could and would help each.) The ladies greatly impacted my evening, and I am honored that they had waited to sincerely ask me: “Who is Kevin?”
One teen approached me that evening. He stood, hands in his jean pockets, head down. He said, “I’m sorry about your brother.” He was so serious, I teased him, softly, “You didn’t do anything to him, did you?” I was hoping to lighten the moment.
He looked at me sincerely and said, “I read his work when he was alive. I’m sorry that he died the way he did. I’m sorry.” I stood taller, extended my hand to shake his hand. I thanked the young man, stunned, again.
One
woman gave me a gift to give my Kevin’s mother. She said, “give this to
her and thank her for having Kevin.”
I
told her that my mom would truly be touched. She hugged me, and I tucked
the gift under my arm, for Kevin’s mom.
Three and a-half hours later, I was still meeting people who ‘knew’ Kevin. The ‘butterflies’ were gone. My ‘fears and anxieties’ abated with a quick, gentle wind, they vanished. Now there was laughter, a few tears from new friends, as veterans shared private moments about my brother. It was a very special evening.
I had a small tape recorder. When people shared very personal moments with me, I asked their permission to record their conversation. We had our own ‘Q&A’ about Kevin. This evening had become a fact-finding, heart-filled evening for many of us.
When I went back to the room with the items from the Silent Auction, one of the hotel employees wanted to know ‘who’ I was. He said, “The staff here all know (sic) that you are a celebrity here. What did you do to become such a celebrity here?” This evening continued to unfold, unpredictable with sincerity truly expressed, funny, sad and emotional.
This
was very humbling. It was so bittersweet. What I would have given not to
have been in that room that night?
Perhaps
a lot. What did I take with me from that room that night, I know to be
much more than a lot. It was ‘everything’.
My mom and dad, my mentors and pillars in my world, they were all right. I did ‘have’ to go. Just as I ‘had’ to go to the funeral, I ‘had’ to attend this gathering, rally. Here there was so much love, a true connection to each person was created in real-time, once each person entered the room. Back in my room, I thanked God, prayed for each new friend I had met. A new world had opened, as quickly as my brother had departed.
I read until 1:00 a.m. reading all the handouts, reading all the info I had printed about Hep C. I ended the evening reading Steve Kersker’s material. His material really touched my heart.
I
really ‘wanted’ to get ‘it’ right this weekend. I prayed not to do or say
anything that might appear to be naïve.
I
prayed, as an outsider, to be able to help others with Hep C, to show that
family members of people with Hepatitis C, truly care. As a family member,
we are not perfect, we all have our own problems, but we do love the person
with whom we shared so much from childhood.
And we do miss you when you have left. Amen.
“Taking
It to The Streets
Take
this message to my brothers, you will find him everywhere.
Where
people live together … I ain’t blind,
But
I don’t like what I think I see …
You
telling me things you’re going to do for me …
We’re
Taking It to The Streets.” The Doobie Brothers
Friday, May 23rd, 2003, everyone met to participate in the “Rally on the National Mall.” I spent the day in the business center, writing, rewriting what I would share. I now was not anxious. I just wanted to get this ‘right’. I still had yet to write the eulogy. All my energy had gone into Thursday p.m. and speaking ‘for’ Kevin today.
We met at 1:00, the scheduled time for “Guest Speakers”. I stood with Bruce and Dawn. I listened to people tell me how a black limo had gone by and rolled down the window and Vice President Chaney had waved at them during their March. I remember the intro and the first speaker. I believe I was the second or third speaker. Sooner than I realized, my name was called. There was ‘no’ time to get nervous. I went to the podium, speech in hand, a black and white photograph of my brother, and a long yellow-stemmed rose.
A broadcast camera was filming all speakers, sponsored by LOLA, Latino Organization for Liver Awareness. Marc, Cinex Video, Washington DC, requested each speaker to hold the large mic to their voice, so the sound would be enhanced as each speaker was filmed.
I stood in front of the group. Not a sound, did I hear. People sat in chairs, some with legs crossed, elbows on their knees as they leaned forward, seated on the carpeting.
I began my ‘sharing’ as I held a black and white photo, 8 ½" by 11” photo of my brother, in the air. I held it silently, moving it slowly, left to right. I remember beginning: “This is the person you emailed. This is who you phoned. This is the face of my brother, Captain Kevin Drue Donnelly.”
Why? I gave him my Word.
As I spoke, one to two minutes into the speech, I started to shake, noticeably. I just shook. I stopped speaking and bowed my head; the room was silent as each person waited, silently. The reality of 2.5 years of his horrible illness and suffering, what I could not share and what I could, the two years and nine months since his death, it all rushed into one moment, as I looked out to everyone, waiting for me to speak.
I remember asking for water. I was handed a glass of ice water. I took a sip, composed myself, threw my shoulders back, thought of my mom, and inhaled.
I began by thanking Kevin’s widow, his second wife whom he married September 7th, 1990, Tina Velocchi Lomonte Donnelly. Had she ever given the Hepatitis community his research, his email address book, I would not be standing here. Had she ever given my parents one phone call in two years and nine months or returned the few items, not of monetary means, but personal items of my grandparents and parents, I would not be here.
I
did not commit myself to this path -- upon Kevin’s death. I committed to
Kevin, only to listening, if I could, just as he had asked. I committed
to Kevin, only to witnessing, if I could, to how many of his predictions,
came true, just as he had asked when we last hugged our last hug in front
of his residence in Lindenhurst, NY. As his only sister, I committed to
myself to continue to love my youngest brother, knowing when I left him
that last time, I would never see him again.
He
was passionate; the Hep Radio, as I called him, All Hep, All The Time.
He was passionate about veterans, Hepatitis C, the truth, respect, honesty, professional medical treatment, true professional ethical medical treatment. I listened and listened to inaccuracies and to unproven statements until one event occurred. That event was the day I learned that the rank on his tombstone was incorrect.
Captain Kevin Drue Donnelly was given a tombstone for a Second Lieutenant.
That
one moment is still frozen in time for me. It caused me to stop and focus.
I sat down on the floor and pulled out all my notes, just as Kevin had
done one day. Kevin’s moment occurred when he read copies of his military
vaccinations.
The
copy he received and the original copy he had from his military service,
were different. Kevin’s life shifted in that one moment. I reviewed all
the notes, handwritten and typed, just as Kevin had done one day.
Why? I gave him my Word.
I started to pull together my emotions, my focus and my newer questions, just as Kevin had done, one day. Without realizing it, I did just what Kevin did. My “enough” went off. I now wanted Truth. I now wanted Facts. I now wanted Respect for my dead baby brother. I began to ask questions. Each question, whether answered truthfully or not, created another question.
“When
you got nothing, you got nothing to lose.
How
does it feel to be on your own?
With
no direction home.
Like
a complete unknown.
Like
a rolling stone.” Bob Dylan
Just like Kevin, I then pursued truth, facts, respect and honesty. Just like Kevin, when I found out that ‘what’ my family had been told, and what Kevin had predicted regarding his research had, in fact, occurred –after his death, even the prediction that after his death, all of his cats would be taken to the animal shelter, the first day it was open for business. His research would not be returned, items important to Kevin would not be returned to the Hep C community or to his parents. Those moments and those actions, caused me to turn my focus to a new path, a new direction.
I narrowed my focus, like Kevin, then – only seeking the ‘truth’.
When one year passed and the computer he worked on day and night was never shared, his research or even the email address book that members of the Hepatitis C community had offered to purchase,
One year to the day, I published, stunned and fearful, yet I leaned into the wind and published: “The Truth -- He Was a Brother, A Vet, And He Died Before His Time.”
I leaned forward; I leaned into the wind. It was the kindness of strangers that helped me to stand tall, helped me to learn ‘how’ to succinctly share the Truth. They said "Never forget. Never forget. Honor your brother. Never forget.”
**** And for the first time, I answered honestly, with respect, what many had whispered about. ‘How’ we heard about the news of his death, what Kevin’s birth family was told, what the documents reflect when he died alone and was found, alone, in the residence, August 5th, 2000.
Why? I gave him my Word.
I shared truthfully, honestly, factually. I shared about his suffering, what others did not know. I shared ‘what’ I could, aware I was being filmed. I shared with the audience that Kevin truly believed that the only good thing about Hepatitis C was the common bond, the family, ‘it’ created.
I had met people in the room this weekend who told me that they would ‘not’ give back the disease of Hep C, for the friendships that they now had. It was as Kevin might have wanted, I hope. I shared that the ‘best’ years of Kevin’s life, he always said, were those years in the military. He thrived in the military, and he had great respect for the military and for veterans. Kevin was in the military 24 years and eight months.
A letter denying his promotion to the rank of ‘Major’ arrived at his residence the day before his funeral, August 7th 2000. Kevin never saw the letter, but he knew it was coming. He wanted his promotion. Kevin very much wanted to stay ‘in’ the military, but he was pushed out. The facts reveal this, too. After his diagnosis and research, Kevin always said, “I will always remember that day, and how this happened in Germany.”
As teens, he and his ‘buddies’, he said, laughed about the shot, which they felt would ‘improve’ their health. They laughed how they would get over the ‘symptoms’ when they were first hospitalized “real quick”, with all the technology they had in 1978. Kevin would always add: “But I was foolish.” Kevin used that say he would much rather had died in the battlefield than have to go through this misery.
“That which opposes, produces a benefit.” Heraclitus
I remember some laughter from the people listening. I remember some applause, when I said I would not go to the corner with my head bowed; I would stand tall, and I would be proud of my brother. I remember applause, and I felt my stomach turn.
“No
matter what they say , they’ll see in time, I know.
When
destiny calls you, you must be strong.
I
may not be with you.
They’ll
see in time, I know.
Just
look over your shoulder,
I’ll
be there …. always.” Phil Collins
I remember saying that I knew ‘a’ Dr. Cecil was in the room and I hoped to meet him. Kevin had been working, August 4th, 2000 with Phyllis Beck preparing the groundwork for a clinic to help veterans with Hepatitis C. Two years to the night of his death, Dr. Cecil went online to assist veterans, prisoners and people with Hep C. Phyllis, Dr. Cecil and Kevin’s goal became a reality two years to the night of his death, one year ago tonight.
When Kevin was here, he spoke of his love for yellow roses. Kevin loved yellow roses and commented how, with time, they would look ‘jaundice’, as Hepatitis C people look jaundice with the progress of the disease. He used to say: “Even though we may look yellow, we still have the ‘beauty’ of a rose, the fragrance of the rose.” Kevin used to say: “The yellow rose is a good symbol for Hepatitis because even though ‘we’ are sick, there’s still something beautiful about us, and we can still blossom and grow as good people in the world.”
Why? I gave him my Word.
Approximately 25 minutes later, I remember bowing to the audience. I cannot share with any one, even my family, how ‘a’ weight was lifted. The silence, the not being able to share in the hopes that the Hep C community would receive what was truly theirs, the hope that my parents and family would receive what was truly theirs, it had all been released.
Now I shared, honestly, still holding back some ‘truth’, as needed. It is documented and stored, and I will continue to share, respectfully, yet honoring Kevin, his work, his commitment and those with whom he worked for 2.5 years. When I gathered his picture, the yellow rose, my notes and hurried away from the podium, I remember Helen Clark rushed to hug me, before I was near my seat. She spoke words of encouragement. Dawn hugged me; Bruce hugged me.
I handed the yellow rose to Dawn saying, “I know Kevin would want you to have this.” I sank into my chair and dropped my head, very low. I wanted to cry, to release the emotion. The next speaker had started. It was time to listen and to focus on others.
Later,
as I walked to get a bottle of water, a man introduced himself, hugging
me as he spoke. He was Dr. Cecil.
He
wanted to speak to me. I remember whispering, “the speakers are still speaking;
maybe we can talk later.” I did not want to appear rude to the speakers.
Dr. Cecil giggled, agreed, saying, “I’ll see you later.”
That afternoon, whenever I walked or stood, people approached, hugged me, touched me, shook my hand. When the speakers ended and people began to depart, men stood, waiting to speak to me. Many shared that they were veterans; they had tears in their eyes. A few, openly, weeped on my shoulder, sharing their emotion at having Hep C, thanking me for my commitment to a family member. They wiped their tears from their cheeks with one swift movement, often an elbow. The veterans were not embarrassed, they were truly grieving. I was honored to stand and witness, as Kevin’s Sister.
Why? I gave him my Word.
One man with Hep C, told me his brother has Hep C. His brother, who was “wealthy”, had been able to ‘get’ a liver transplant. This veteran was on the list. After listening to me, he was going to try and make things better with his brother, with whom he was very angry. I listened, watched as he wiped his tears and I said, “Well, he may still be an ass when you go home. Time is the only test. He won’t change because you came here and you changed.” The man agreed, laughing; yet he said that he was going to try to rebuild their relationship.
I stayed until there was no one waiting, wanting, to talk to me. I felt a duty to stand and listen, to honor each person for their emotions, their pain. As I left, people standing in small groups, spoke to me. It was all so humbling, truthfully, humbling.
I went back to my room. I thanked God for having survived the day and prepared for the “Dinner”.
In
the hotel lobby, there were two young adults, seated in a corner. They
were very alone. They appeared nervous.
I
walked over, asking: “Are you here for a special group, a meeting?” Yes,
they were. The young man and young woman, both talking at the same time
told me they had driven several hours to attend a convention, but could
not find it. They did not speak the words “Hepatitis C.” I asked if they
were here for the Hep C group. Yes! They had come for the speakers.
I told them the speakers had been in the afternoon and the dinner was ‘now’.
They were very nervous.
I
asked if they wanted to be my guests. I shared that this dinner was a ‘paid’
function, and asked if they wanted to dine. “No,” they wouldn’t eat; they
didn’t have the money and they weren’t hungry. I would have paid for their
dinners, but I saw pride.
Instead
I said quietly, “Look, I sorta know people here. Just walk with me
into the restaurant as though you’re with me. I’ll tell the restaurant
staff that you’re with me; then I’ll introduce you to people from your
area.” I shared, “Now, remember, these people have been together for over
24 hours. Just think of this as sorta entering a private party really
late.” They both smiled, laughed nervously, I held their hands, we entered
the restaurant.
Helen approached quickly, a seat had been saved for me with Dr. Cecil, Dawn, Bruce and new ‘friends’. I looked to the young people with me and asked her if there any people were from Maryland. I went to several tables before I was pointed to a table with people from the area of Maryland. ‘This’ is what my brother did. ‘This’ is what I do in my private world.
“And
each day I learn just a little bit more.
I
don’t know why, but I do know what for.
If
we’re all going somewhere, let’s get there soon.” Elton John
Kevin
would have wanted the two ladies who did not know him and these two young
adults to have been embraced into the Hep C world. This is what is important
now.
I left the man with a cane and the pale woman after they were greeted at a table. Later I looked over to see if they were eating, I would have quietly given a check to the group or hotel. No, they sat, straight back in their chairs, only glasses of water in front of them. They did not say good-bye when they left. They told me they had to drive home that night and had a long night ahead of them. Still I wonder where they are now? Did they receive the information they sought? If not, can we still help the two people who drove for so many hours and missed the speakers because they were not given the correct times, yet they were so pleased so be among people “with Hep C”, as they told me.
The dinner was elegant. The company was wonderful. It ended quickly.
“A wonderful harmony is created when we join together the seemingly unconnected.” Heraclitus
After dinner and a lottery, I remember Bruce stood and announced that the Senate Bill they had discussed earlier that day, a topic that emitted much emotion, now had a number, and he read the title of Senate Bill 1143.
“The more I look, the more I see.” Basia
“It is a possibility the more we know, the less we see.” Sade
I
remember one gentleman, from the South, stood and crossed the room. There
was applause with the announcement.
I
knew there were differences in opinions and watched in real-time as people
applauded and shared publicly at this moment that they were ‘now endorsing
the Bill.’ There would be unity (my words). I watched, I listened, I witnessed
the applause, the laughter, the approval and the bond grew closer and tighter
in their quest to accomplish their common goals for Hepatitis C.
The
man approached Bruce and asked for the number of the bill, so he could
write it down. He did not have a pen.
I
watched Bruce hand this man a pen and watched as he, standing a few feet
from where I sat, wrote the number of Senate Bill 1143 on the back of a
white business card. It was a good moment. I must share that as I write
this August 5th, 2003, there have been a few changes in opinions, differences.
My understanding of Senate Bill 1143 is that 14 Senators endorsed the Bill. The Bill is contained in 16 pages from the 108th Congress, 1st Session. My understanding is that Bill 1143, if approved, would share 300 million dollars over five years. A small portion of this bill says: “This Act ‘may’ be cited as the ‘Hepatitis C Epidemic Control and Prevention Act.
It
states in Sec.2. Findings:
“
Congress makes the following findings:
“Over 3 million individuals in the United States are chronically infected with the Hepatitis C virus (referred to in this section as ‘HCV’), making it the Nation’s most common blood borne virus infection. …
“Conservative estimates indicate that approximately 35,000 Americans are newly infected with HCV each year.
“HCV
infection can cause life-threatening liver disease. …
“An
estimated 2,400,000 to 2,700,000 people who are chronically infected with
Hepatitis C are receiving no treatment.
“Conservative estimates place the costs of lost productivity and medical care arising from chronic Hepatitis C in the U.S. at more than Six Hundred Million dollars annually and such costs will undoubtedly increase in the absence of expanded prevention and treatment efforts. …”
“Federal support is necessary to increase knowledge and awareness of Hepatitis C and to assist State and local prevention and control efforts. …”
The Bill goes on to describe that it will “be guided by existing recommendations of the Centers for Disease Control and Prevention and the National Institutes of Health;” and consult with the Director of the CDC and NIH.
Page
11 “Surveillance and Epidemology:
…
The Secretary shall promote and support the establishment and maintenance
of State HCV surveillance databases, in order to …
“Identify trends in the prevalence of HCV infection among groups that may be disproportionately affected by Hepatitis C, including individuals living with HIV, military veterans, emergency first responders, racial or ethnic minorities, and individuals who engage in high risk behaviors, such as intravenous drug use; and …”
As I read this document, the paragraph above, leaped out at me. I could hear my brother, voice raised, asking: “Where is the ‘trend’ of blood transfusion, prisons, homeless, other sectors that are not included?
Page 14, “There are authorized to be appropriated to carry out this part $90,000,000 (90 million) for fiscal year 2004, and such sums as may be necessary for each of fiscal years 2005 through 2008.”
Why am I sharing this here, in the eulogy to my brother? Well, the hours, weeks, months, 2.5 years he worked to bring people and groups together, to raise awareness, to promote advocacy and education, I understand, is now splintered, after a possible Senate Bill has been proposed to assist HCV.
This
pauses me to reflect on what really ‘is’ happening. What are the facts?
Whom will be assisted and when?
Why
would people endorse this and then later oppose the Bill that I watched
people applaud.
“It’s
all right to make mistakes.
You’re
only human.
Inside
everybody’s hiding something …
Take
time to catch your breath and choose your moment.” Dido
I need to share that upon my return from the trip to DC, I received emails and read about the disagreement and efforts to change the Bill that 14 Senators endorsed.
Why? I gave him my Word.
I heard in DC about the handful of people who had flown to DC prior one week ahead of the march and rally. They worked each day to assist and educate legislators and senators about this bill.
“The sun is new each day.” Heraclitus
Upon my return, I read about emails that now wanted the Bill changed.
My understanding for the change in the ‘winds of agreement’, after such public endorsement at the dinner, May 23rd, 2003, is due, in part, to the fact that the Bill will work with the existing Public Health set-up. This Public Health assistance currently assists with AIDS counseling and assistance.
“Cast
your dreams, before they slip away.
Lose
your dreams and you will lose your mind with life unkind.
Good-bye
Ruby Tuesday” Rolling Stones
I
was included in emails, and worked to understand, to comprehend that the
basis, in part, for total disagreement to the Bill as it reads now, is
that ‘the’ AIDS group, receives assistance and counseling through the Public
Health offices.
This
Act, ‘with the Hep C monies’ would work with assistance already in place
that would continue to assist STD, sexually transmitted diseases, and HIV,
AIDS.
Excuse me?
As an outsider who listened to Kevin for so long, one who listened to understand after his death, and one who watched and listened to the unity at the dinner that evening, I worked to understand the differences. People had worked so hard, endured so much, shared so much, gave so much, to have a Bill offering, perhaps, millions to assist people diagnosed with Hepatitis C. Perhaps I don’t understand the finest of fine points. Perhaps I am unable to comprehend that 300 million dollars in funding over a course of years would help more than one group of people diagnosed with a horrible disease. But I am able to understand that this bill is on ‘the floor with no action possibly until Fall 2003.”
I understand a handful of letters have been emailed to Senators, very strong letters, opposing the Bill. I understand that people who worked together in the hopes of any funding, any help, any research for those diagnosed today and for those yet to come, now have gone to opposite ends of the field.
I know people who hugged each other in DC, laughed together and who applauded together, now have ‘hurts’ from the strong emotions opposing this Bill – and I mean ‘strong emotions’ by a minority of people. The slippery slope is now even more slippery, folks.
Does it need be that if one disagrees, he/she, even if they understand that citizens of this free country have the right to differences, to differing opinions – are branded? If one is unable to disagree and to continue to work together, will this hinder the progress of your work together?
Time will tell, veterans, kind people. Time will tell.
“If one throws salt at thee, thou wilt receive no harm unless thou hast sore places.” Latin Proverb
To slip back into the moment of the evening, ‘we’ must go back in time to that night, back to the elegant dinner, that evening in DC:
Speeches, awards, certificates were shared, and as it finished, I thanked Tricia for the wonderful two days, before I headed back to my room. I had ‘a’ eulogy to write.
Why? I gave him my Word.
Instead
of reading facts, statistics, listening to television, I read. As I read,
the eulogy worked itself into my mind.
It
wrote itself. I tucked myself in, without calling anyone, without receiving
one phone call, and I thanked God for the memories.
Saturday, May 24th, 2003, I rose early and headed off to the business center. I had a eulogy ‘in’ my head. I was scheduled to deliver it that evening and time was passing.
As I worked a young man came into the business center. He asked me if he could check his email. Computer time was posted in 20-minute increments. Abruptly, he said to me, “Look, I only want to check my email. It will just take a few minutes, OK? So do you mind?” The tone and importance of what I was doing came rushing back.
“Let me remember things, I don’t know.” Credance Clearwater Revival
I turned slowly, calmly, low voice, saying to him: “I’m writing the eulogy for my dead baby brother. It will just take a few minutes, and yes, I do mind.” His face went white. He left the room, without speaking a word. He never came back. I wrote Kevin’s eulogy without any interruptions.
I will stop ‘sharing’ here tonight. I must honor Kevin, my brother, now. Tonight is ‘his’ night. I will share details of the evening and the wonderful, kind people who attended the vigil that evening.
Why? I gave him my Word.
I will share how Ron opened the evening with prayer. I gave Kevin’s eulogy. Others shared. I heard sniffles, heard people blowing their nose. Names were read of people who died with or from Hepatitis C. We all held white candles that were lit, prior to the reading of the names.
We then went out into the night, as a group. A small group sang songs. Others watched the many, many Harley Davidsons thunder by as they arrived for the Memorial Day event the next morning.
We went back in and Eugene ‘posed’ me for pictures with Kevin’s patch. He and I joked, hugged and sighed together, knowing Kevin would have approved. Kevin would have enjoyed, laughed, shared, encouraged others to work together. Eugene and I knew, Kevin would have approved.
And that was enough for he and me.
I
cherished each moment.
I
thank each of you.
I
thank Kevin, and I thank God for the strength that has been shared.
“One
thing I got to tell you is that you got to be free; come together right
now over me.
Hold
you in his arms, yeah, you can feel his disease.
Come
together right now, over me.
Come
together, yeah!” The Beatles