I am sharing this for my brother, Kevin.I gave him my word.I would not be here, at this path, were it not for Kevin and his dedication to the people and families involved around Hepatitis C, HCV.
There are too many inconsistencies that have been created and shared, especially since Kevin’s death.
This what I desire:
To show the ‘intent’ and the path of Kevin in his work, his life, his research, his death. I have included events that occurred within his ‘birth’ family and his ‘legal’ (now ‘next-of-kin’) family.
The fact remains that I am left with concerns about Hepatitis C, depression arising from a terminal disease, and about my brother’s research, much which has not been shared with the community and those with whom he worked closely.
My intent is to honor Kevin, although I am concerned for people who knew him during the last chapter of his life, the person that I knew my brother to be was not a saint, nor “fanatical” or a “crazy” person, as some (close to the circle) stated since his death, August 5th, 2000.
I have included personal e-mails, so others could ‘learn’ that my brother once had a bright light within him.
The e-mails I have included in this sequel, are only a fraction of what he shared with his sister and with others, once he was diagnosed with Hep C.
They reflect how his path, his life shifted, many of the shifts, not of his own making.
The tone of his e-mails, the education that grew as his research grew, the anger, frustration, hopelessness… much was shared with me then, and I now humbly, sadly, share with you.
These e-mails reflect who I knew my brother to be.
Others have had the opportunity to judge, some with information, others without, but my intent is to show the person who burned bright, and the person who knew he was fading, and the person that had his memory tarnished far too quickly, right after he died…
I wrote a poem for my brother; my private honor to a younger brother. (Kevin ‘hated’ to be called the ‘baby brother so I will also honor that choice, while he was here with me.) When I began, I did not intend to share this with anyone. It began as a sister’s way of sorting out her sorrows, her memories, her pain and her brother’s life and death.
After I wrote my poem, to further honor my brother, I began to insert facts into my poem that occurred – some sad, some oddly strange, some funny. Then his poems and his e-mails were gathered into a sequential form, to further elaborate on this sequel, a tragedy, but an honest, true story of a person who once had high hopes of helping others before he died alone.
The result of my gathering my thoughts, Kevin’s thoughts and the e-mails of those with whom he corresponded, is what follows.
A person who began strong, was frightened, then angered, then lonely. A person then was challenged by a cause.
Once he realized how alone he was, in fact, Kevin narrowed his focus to encompass a wider field. That ‘narrowing’ meant he made choices. He made exclusions, he asked questions why he was sick, and he worked to help others, once they learned they were sick with Hep C.
And when he looked up, often, there was still no one there for him to share his work with, a multitude of reasons further propelled Kevin forward.
Kevin then rallied others, he gathered purpose and steam. His e-mails reflect how that path increased, and sadly, they reflect when he became lost again… sinking further and further into the disease that no one seemed to understand at his time.
He was a person who did not choose this path, suffered with his disease and had his up’s and down’s in life, just like others. He was a person who was not manic depressive, as some have stated and suggested.
Though Kevin did receive counseling prior to his illness, earlier in his life, as have so many in this world, the diagnosis of manic depressive was never given to Kevin Drue Donnelly while in his personal life, his counseling sessions, his medical files, nor did the military service in his 24 years of service ever diagnose or classify him as having any psychological disorders.
Those that make misstatements that are not factual, are tarnishing the memory of a young man, 41 years old, who is dead, unable to reply from the grave.
I gave him my word that I would rebuild his library, that I would share, if I could… and I now open you and the world to the possibility of helping people with Hepatitis C – and also for family members who live with ‘their’ diagnosis.
My intent is to share… to let others read and ‘see’ there was once a younger man, unknowing of a Hep C world. A younger man who had hopes and goals. A young man who then believed he could move the cause forward helping veterans and families with people diagnosed Hep C.
My intent is to share… there was one a young man who believed he could bring ‘light’ to the issues through information, through veterans, through professionals, through the press, through voting, through letter writing.
My intent is to share… there was once a young man who attempted to answer hundreds and hundreds of e-mails arriving from a global world, helping others, before he became so ill.
My intent is to share… there was once a young man who typed with a pencil in each hand; who once helped to build a website for veterans and ‘their’ families to concisely learn how and where to access information from the VA, the military and other sources.
There was once a young man who began to lose his battles, unknown to many, until very ill and very alone, he died, an older man at 41, believing he had no hope for a future.
My intent is to share… so that if one person will ever avoid any chapter of what I have experienced, as a sister, then my job will have been well done.
My intent is to share… I know that many have benefited as I have grieved, as I have shared ‘when’ and where I could,’ gathering facts, listening to inconsistencies.
I now ask you to open your heart and your mind and to know that my brother, Kevin, was a young man, a veteran, who died far too young, with too many ignorances (sic), too many prejudices, and one who died alone, suddenly, late … in the darkness, August 4th, 2000, at 41 years of age.
Some people will be hurt by my ‘sharing.’
But I hope and believe that in time, each will see the larger, bigger picture here.
The issue here is:
There were wise choices, good choices, analyzed and researched choices, emotional choices, and yes, bad choices.
A sister’s sharing necessitates ‘sharing’ that Kevin had a “falling out” his with parents and members within his birth family, choosing his wife and stepchildren, when no choice was needed.
Kevin’s parents were very hurt by seven years of distance. His father and mother did try to ‘reach out’ to Kevin.
Sadly, Kevin made his choice, a choice that hurt others and created ‘hidden’ scars, to this day. And that choice, to keep a distance between he and his ‘birth’ family until his diagnosis, was a choice Kevin made.
Kevin wanted to spend time, his energy, with his second wife and her family. Before his diagnosis, he repeatedly said: “This is how I want to spend time. This is how I want to spend my life. I can make a difference with this family here now…”
After his diagnosis with HCV, then Kevin reached out and back.
But as his work and research became so important to him within his world, with the time he knew he had, Kevin chose veterans and people with Hep C and ‘their’ families. That time included time ‘for’ his parents, but still he made choices to help others with his time and energies.
This fact must be shared if I am to ‘share’ with others. During the last chapter(s) of his life, Kevin made choices. Those choices are documented by family, ‘legal’ next-of-kin and by strangers.
To not address those choices here, would be a disservice to Kevin’s parents, who live with regrets and moments that are missing within their son’s life and memorials – a life and a time that others benefited from…
The death in a family, I have found, has also become the death ‘of’ a family. The core of Kevin’s birth family has been shattered by inconsistencies, inaccuracies, facts, actions of others, and of ourselves.
If one person can avoid pain that we have thus far been through, then Kevin’s death was not in vain.
If one family can learn from our experience, then Kevin’s death was not in vain.
If one person with Hep C and their family can avoid our path, then my sharing will have made our pain ‘not in vain,’ as it should be with Kevin’s death.
Something positive must come from Kevin’s work and this tragedy.
Already there has been proof of this honest sharing… there will be more, and Kevin’s family will have helped others ‘sharing’ their pain and their loss.
This must be so.
Perhaps one day, the possibility of a brother who asked his sister while saluting in the street, the last night she saw him, if he could be buried within Arlington Cemetery – perhaps one day, that possibility will become open.
Left hand over his heart, the other in full salute, he said good-bye to his sister, asking her not to cry - both aware this would be the last time each saw the other.
Arlington Cemetery has not been a reality to date.
Perhaps – one day.
Since Kevin wanted his story, “The Panama Story” to be shared for all veterans, all family members and all people affected by Hepatitis C, donations have never been requested.
Kevin wanted vets and their families to have access to information that was not tainted by money given for vitamins, cleanings, detoxers, medications, etc.
A database had to be developed where veterans and families could, anonymously, research this debilitating and quiet terminal disease. The origins of the beginning of the Hepatitis virus became important to Kevin – after he realized how alone he was.
The medical community did not understand the Hep C ‘disorder’ or educate Kevin on this illness.
He sat in front of a doctor’s desk, a physician outside the Veterans Administration flipping through his file, to inform Kevin Drue Donnelly “You have Hepatitis C. You have one to two years to live, and you’re not a candidate for a transplant.” Then the doctor wished Kevin “Happy Holidays,” on December 21, 1997.
Kevin’s quest to determine how he was infected began after phone calls were not returned, inquiries were not addressed, and he was repeatedly informed that “either you engaged in homosexual activities, intravenous drug use or you did …” to have obtained the Hepatitis virus.
Additionally, he received this information in writing, mailed to his residence, 742 Hancock Place, Lindenhurst, N.Y.
As Kevin began to trace his military medical history, comparing it to what VA records reflected, he found disturbing differences. Data had been inserted, facts changed and omitted. This further launched his research into the origins of his terminal diagnosis at 39 years of age.
Kevin and others learned that his troop had received the “precursor to the Hepatitis B vaccine infected with gamma gobulin… that did not work. They were guinea pigs.
His entire base was infected with ‘B’ and now they have ‘C.’ Their ‘B’ mutated to ‘C.’ The troop was quarantined in the hospital… then discharged when a local (Germany) clinic was needed.”
During Kevin’s research, other veterans began to reach out. Their stories were uncannily similar to Kevin’s. Many had, in fact, served their country.
Many had, in fact, become ill during the service to their country. Many were now, in fact, dying after a prolonged illness – some 20 – 25 years with a diagnosis not shared with servicemen and woman. A diagnosis each was now, possibly, sharing with their spouses and children.
Since the numbers for people diagnosed within the U. S. and around the world with Hepatitis C are fluid and changing, exact numbers will continue to change as facts are shared. The numbers are predicted to increase, and with no cure for this terminal illness, you will be affected.
Currently, the Centers for Disease Control, CDC, does not include Hepatitis C as a disease. The VA, Veterans Administration, which controls military records, does not share their Hepatitis statistics and internal numbers.
Many of the drug companies are vested heavily in large amounts of money to treat Hepatitis C. A cure may be shared, one day.
But questions need to be asked now of elected officials, the media and journalists. TV stations that are owned by large corporations – many have ties to drug companies.
One could begin by asking:
Why is a news story that currently affects over 5 million, not being shared on news programs?
AIDS, HIV, was officially declared a disease in the U.S. on June 5th, 2001. One should ask:
How many years did the medical profession know about this disease, and why did so many suffer until June 5th, 2001 until it was declared a ‘disease’?
I am a sister. My brother became ill with Hepatitis C, HCV. He suffered with Hep C. He died, alone, helping others with Hep C. He was not a saint, nor was he a hero to some.
He was my brother, and I gave him my Word.
My goal is to help you to share facts and myths of Hepatitis C within your kitchen and within your living room.
Women throughout history have altered the course of events.
If each person who reads this story were to voluntarily donate $2.00 to advance and educate the public, the course of this horrible disease would be altered. Families would be affected. Veterans would be assisted.
Since the number of 5 million, does not include veterans (men and women), does not include prisoners (many released on early parole), does not include homeless, does not include people in rest homes who received transplants prior to 1992, the number of 5 million, sadly, will expand.
Hep C is now called “The Silent Epidemic.”
How can something be ‘silent’ when 5 million are affected; millions more will live with family members who are afflicted? And those numbers do not accurately reflect people currently diagnosed, and those who do not yet know?
David Crosby of Cosby, Stills, Nash and Young, has Hepatitis C. He was given a liver transplant in 1994. Did his celebrity (and money) status help to receive a transplant? I’m not wise enough to know that answer.
Yet, I ask: How many others need medical attention that they do not receive?
Did you know that there is a Hepatitis G? The disease is a virus; it changes. Money should be used to educate children, teens, professionals, retired populations, the medical community, nurses, veterans, mothers, sisters, brothers, spouses. The list is endless.
I ask that you share this poem with others. Please share with others.
There are many choices and many venues where you may choose to give back, to assist others and their families.
Please consider giving a donation to the Hospice Foundation, www.hospice.com.
Phyllis Beck also worked closely with Kevin Donnelly.
You may choose to give of your time, you may choose to share kind acts with another, you may choose to make a monetary donation.
You also have the right to choose to do nothing. If you choose ‘nothing’, God’s speed to you and your family members.
Too many have suffered. Unfortunately, you will know someone. The numbers speak too loudly.
General MacArthur said: “Old soldiers never die. They just fade away. This 41-year old soldier died, suffered for years, before his sudden death. Captain Kevin Drue Donnelly never had a chance to fade away.
And my hope and prayer is that someone in your family will be spared the terminal diagnosis that a sister and her family struggled to witness… during Kevin’s illness and long after his death.
Sincerely,
Kevin’s Sister.
“Why? I gave him my word.”
“The Panama Story” originally was written as a short story.
Kevin sent this story to less than a handful of people. He sent it to his sister Sunday, March 29th, 1998, with the note:
“Since you have worked so hard to assist others, I have written a bedtime story for you to dream about. O.K., now your story! Here are your milk and cookies, (Kevin hands over a warms plate of homemade oatmeal-raisin cookies and a small chilled glass of milk with a napkin)…
You are teleported back to: PREFACE:
Time: Turn of the Century (1898)
Place: Washington, D.C.
Person: Colonel Teddy Roosevelt, Jr.
“Your vision of America is not complete yet. You have returned from Cuba, where the US charged up Kittle Mt. (actually, History says San Juan Hill, but that is not true). Your ‘rough riders’, a group of rich kids that you grew up with on Long Island are now your military subordinates on horseback …”
The short original ‘Panama’ story ended with:
“Once the ‘story’ was explained to the Congressman’s aide, a new sense of urgency developed. She was upset to hear that 1/2 of all VA patients are HCV positive. Also that some prisons have almost 80% infection rates. … Five minutes after hanging up with her, a government van turned around in front of house. There are no federal facilities around. All information is instantly sent by Kevin to 3-4 different places.”
Kevin then awakes from his dream:
“Oh, well, fortunately it is only a story! Otherwise it would have sinister overtones. Kevin tippy-toes out with milk and cookies. :-! ”
Kevin Drue Donnelly’s short story was photocopied, rapidly shared with many, many people. It was left in Veterans Administration offices, hospitals, military offices. It was ‘appeared’ in clinics, homes, businesses. As the story grew to be shared around the world, Kevin was repeatedly asked to expand his story.
Kevin’s ‘story’ evolved to 20 chapters, ending with an epilogue. He even emailed a chapter in the late hours on Easter Sunday, 1998.
He said, “Veterans and people afflicted with Hepatitis waited in rooms alone … they are waiting to receive the next chapter, and I’m not going to disappoint them.”
He ended 20 chapters of “The Panama Story” with a footnote: “A story written after 90 days of research, from
1 Jan, 1998 to 31 March, 1998 by Kevin Drue Donnelly (diagnosed 12/21/97).”
When ‘a sister’ received the 16th chapter, she kiddingly wrote him, “What? Are you writing ‘War and Peace…?’” And she continued to promised to fulfill his wishes, his request that the Hepatitis C research, the study, the advocacy, the education would continue after his death.
Sadly, a sister now writes honoring his last wishes, remembering a brother with whom she laughed, loved and had ‘sibling’ skirmishes. She continues to hold many, many personal memories.
Kevin had asked two things of his sister.
First he asked that she maintain his library of research. He was still unsure where the facts, data would lead him, but he wanted assurance that material would be stored, filed and shared.
His concerns began as he amassed computer information. He backed up files, made copies, shared with a handful of people. Later, his concerns grew to include the fear that his work would never be shared with others, would be destroyed, lost forever.
He asked his sister to promise to keep his work. That was the only promise he ever requested, waiting for a verbal response.
A sister is now trying to honor that promise since the computer he worked on, has not be shared with others, the Hepatitis community and/or family – one year to his death. Some have even been told that the computer is blank, all his work has been removed from the hard drive.
Kevin’s wife will not share his listserve, the hard drive or computer.
Offers have been made to purchase Kevin’s material and/or the actual computer with funds from within the Hepatitis community. The computer remains with Kevin’s wife, no computerized information has ever been shared with others within the Hepatitis community, to date.
To honor that promise, a sister reopened Kevin’s e-mail: KEVINDCPT@prodigy.net. (now closed by prodigy)
Email may be returned now to: Monette@ARTCS.com
Prodigy corporate headquarters has been an invaluable support, assisting a sister to open his e-mail.
This was a noble request from Kevin, to recreate the library that he was sure, predicted with others, would vanish after his death. Sadly, he was accurate.
If each person who received information, research and personal e-mails would ‘hit’ their reply key, they can now send Kevin’s e-mail back to a library that will be rebuilt.
The biggest obstacle is: sadly, many people that Kevin wrote to and assisted, have died. Others are in the later stages of their terminal illness and battles with Hepatitis C.
When Kevin was doing much of his work, people were ashamed of their diagnosis with Hep C. There was shame, and many that wrote and worked with my brother, did not want others to know they had Hep C or were working behind the scenes to advance the research and advocacy.
The loss of Kevin’s listserve and his work, is tragic in that millions of people would benefit from the ‘facts and truth.’
If you have someone in your family who had Hepatitis C within the years 1998 and 2000, and/or worked in the military, medical and/or political communities, you may very well have e-mail on your computers from my brother.
You may hold vital information to rebuild Kevin Drue Donnelly’s library, the only request that he insisted, repeatedly, upon having a verbal reply from his sister.
A sister worked to honor his second request, “to listen.”
He did not ask her to promise, only asked her to listen, if she could, if she would. He was adamant that specific events would occur. He had predictions that sent chills down the spine of a sister, her husband and others. Sadly, he was far too accurate.
After the funeral, she listened, stunned. She listened to people, to his ‘legal’ family, next-of-kin, to people at the funeral, to strangers, to detectives, military personnel, funeral employees, people asking to remain anonymous as they shared detailed information.
She sat, listening, stunned. And, yes, she began to have nightmares from his predictions, the listening, the computer that hasn’t been shared, the lies, inaccuracies, the incredible events that began to occur in her life …
To help her sort the details, inconsistencies, misstatements, she began to document the events – to find sense of her world, listening after Kevin’s time. She shared events as they occurred, asking people ‘please remember this … in case anything happens …’ as she moved forward.
She spoke to veterans, professionals, stewardesses, strangers, legal advisers, kind adults, young adults.
She struggled to piece together words, to share sentences, to share ‘the’ truth.
The reasoning that arose originally was that if she could share with a stranger, perhaps they could share wisdom, comforting words, a smile so needed – her own birth family, stunned and shocked. Kevin’s ‘legal’ family so removed …
Veterans came forward to warn her of their fears.
Employees who worked with the federal government (and ex-employees) warned her. Strangers came forward to warn a sister: “Be careful. Be very careful… you don’t know what you’re up against.” Odd and strange events began to occur in her life.
Those moments, those memories, remarks that were shared by professionals and strangers, is what helped to create the ability to listen intently, then to rebuild.
She permitted each day to mourn a brother, to gather information to share his work that’s not been shared and to listen.
One person wisely said, “Mourn your brother, honor your brother, never forget, never forget, move forward.”
One day while going through some of Kevin’s papers from his early research, a sister viewed one piece of paper among the few.
One resume listed “COMMENT” at the end of page two. “Have a flair for getting things done, like a challenge and am willing to work hard.”
As she photocopied his papers to share with others to have others storing copies of work, she saw ‘comment,’ threw her back laughing.
A young man working at the store with the photocopier, came over; a sister pointed to this sentence. He had watched ‘a sister’ stand in front of the machine for hours, and now he threw his head back laughing.
Yes, “flair” could only have been written by her brother.
Youth and enthusiasm, a true commitment to the future. Another milestone to move forward, another sign to continue battles so many had already lost. She continued to copy papers, head down, smile on her face. Her brother had come back within that one brief moment…
Kevin Drue Donnelly’s time is over, but his gifts to others, the painful truth for others (family, friends and strangers), his legacy begins.
He never wanted to be a hero.
He created many goals: to continue his career in the military, continue backpacking, visit Alaska, to raise a family, not all in that order.
None of those goals will ever be fulfilled.
A new time, perhaps an epoch, a new life without Kevin began – sadly, for some, before he departed this world forever, the late evening of August 4th, 2000.
Thus, shall this sharing become a new beginning –
sharing ‘truth,’ per Kevin’s wishes, to help others where Kevin could not.
“Why? I gave him my word.”
A sequel to this sequel has already been written to contain information that was not timely, not wise or permissible to share.
That story is already with others … as we wait … for the beginning of a new beginning that includes sharing, truth and no more waiting.
“Why? I gave him my word.”
The time is now 2001.
A ‘sister’ now shares with each of you:
“Here are your milk and cookies, (Monette Benoit hands over a warm plate of homemade oatmeal-raisin cookies and a small chilled glass of milk with a napkin)…
YOU are now teleported back in time to a world near Kevin’s diagnosis with Hepatitis C…
