Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 31, 2014, 05:53:52 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 632482
  • Total Topics: 47901
  • Online Today: 262
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 5
Guests: 187
Total: 192

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Silence = Death (The Outcome of Denial and Isolation)  (Read 6123 times)

0 Members and 1 Guest are viewing this topic.

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Silence = Death (The Outcome of Denial and Isolation)
« on: September 01, 2013, 04:41:35 PM »
“HIV is no longer a big deal.”
“I’m not sure about taking meds.”
“I haven’t told anyone about my condition.”
“I’m afraid of the side effects of meds.”
At some point or another, I have read one or more of the above comments here in the forums. Prior to April 2013, I may not have given these statements a second look or thought – choosing to believe that people are entitled to feel the way they feel….but in April 2013 all of that changed.

This is a recount of my oldest brother’s illness… He lived in denial. He lived in silence. He lived in 2013, but became the face of AIDS circa 1980s. My hope in posting this is that another person and that person's family and friends do not have to go through what my brother, his family, and friends have went through.

April 3, 2013 – my mother calls me to tell me that my brother has been taken by ambulance to the hospital because he has fallen at home. I go to the hospital. My brother is in ICU. It looks like he has been beaten up (but he denies this). In the course of my visit, I inquire as to his condition – the nurse gets permission to discuss his medical status with me. She informs me that his injuries are not life-threatening, but the reason he is in ICU is because they need to treat his toxoplasmosis.

“Toxoplasmosis,” I say. I know that this is an AIDS associated opportunistic infection. She looks at my brother and asks him if it is okay for her to further discuss his medical status. He says yes. She informs me that he is HIV+ and has been (according to him) since 2009. This is the first I am hearing about it. He tells me not to tell my mother. He says he only went on meds for a brief period but stopped. I say, “Do you want to die? Why would you quit taking meds?” He says, “No, I don’t want to die – I guess I was in denial.”  Even at this time, he is more concerned about the bruises to his face from falling and some blurred vision he is having than he is about having untreated HIV. My brother’s weight is 135 pounds.

I call my mother and inform her of his condition (against his wishes – but I cannot keep this from her – and he hasn’t exactly been making the best decisions). She begins to make plans to come to South Florida from Ocala (5 hours away) to be with him.

April 4, 2013 – I leave for a pre-planned trip to London – all the while questioning whether I should be going. But, I am told by the hospital that my brother will be moved to a regular room and barring any complications, should be released within a few days to a week…

April 6, 2013 – My mother, an insulin-dependent diabetic and two time cancer survivor who lost her husband of 48 years two years earlier, arrives in South Florida. She is by herself; doesn’t know her way around; is hearing for the first time that her son has HIV…She stays in his hospital room 24 hours straight to be by his side. I am calling a few times a day from London to check on her and him.

April 8, 2013 – My brother spikes a fever of 105 degrees. He is diagnosed with PCP (pneumonia). He is moved back to ICU. Unfortunately, he is allergic to Bactrim (to treat the PCP) and he is unable to swallow due to an extreme case of thrush, so he cannot take the alternative medication. He is put on an oxygen mask. He is also experiencing wasting syndrome. He is consistently soiling the sheets. He has cysts on his face. CD4 count comes back – he has 16 CD4s and a viral load in excess of 1,000,000 copies. His weight is down to 119 pounds.

April 10, 2013 – I cut my trip to London short and arrive at the hospital. In addition to toxoplasmosis, PCP, and wasting syndrome, he has now been diagnosed with CMV. He is on about 10 different antibiotics and other IV medications. The doctors think that he has lost or is losing sight in his left eye. Because of the wasting and soiling of sheets, in addition to the catheter in his penis, he is now put on a rectal catheter to capture the constant flow of diarrhea. The doctors want to intubate him (breathing tube) but he refuses and signs a do not resuscitate (DNR) order. His weight is down to 110 pounds.

April 11, 2013 – While at his house trying to find needed paperwork, mom finds gay-related pictures, a dildo, and sexually-oriented text messages on his cell phone. Between the secret of HIV and his sexual orientation – mom is finding out that her son, whom she always had a close relationship (as he is the first-born) lived a second life that was kept secret from his family and friends.

April 15, 2013 – The doctors inform us that in addition to PCP, toxoplasmosis, CMV, and wasting, my brother also has Kaposi’s sarcoma (KS). He is now on about 20 different IV bags (so many bags that extra equipment is brought in to hold the bags); the nurses say they have never seen someone on so many IV bags. His breathing has become so labored that my brother rescinds the DNR and requests to be intubated. The doctors say he is showing early signs of respiratory failure. He is sedated and the breathing tube is inserted. The only good side to the breathing tube is that he can now be given the alternative medication (pill) for PCP and HIV meds (which are not available in IV form) – which are crushed and delivered via a feeding tube. My brother has cysts and lesions covering his face. His weight is down to 90 pounds.

April 16, 2013 – My brother’s best friend flies into town. My sister arrives. My cousins arrive. My aunts arrive. He is barely able to open his eyes – which are protruding from his face; his skull bones are visible; he appears to be completely blind in one eye; and is only able to nod because he can’t talk with the breathing tube inserted.

April 17 – 25, 2013 – The doctors continue to try to wean him from the ventilator as they know that if he does not come off it soon, he may never come off….  By April 25, 2013, his weight is down to 79 pounds.

April 26, 2013 – After several unsuccessful attempts, the doctors are finally able to wean my brother from the ventilator. He is breathing with the assistance of an oxygen mask. I tell him how proud I am of him. He says, “I’m trying Phil, I’m trying.” My mother and I go to centralized case management and within 2 hours we signed him up for every HIV service he may possibly need. We are hopeful that he has turned the corner – and while he will have a long road to recovery, we feel positive that he will make it.

April 27, 2013 – They prepare to move my brother to a regular room. We are all so happy!

April 28, 2013 – My brother is moved to a regular room. He begins a light liquid diet. He is talkative and looking forward to the future…. He knows that we are there for him and will be supportive of him every step of the way.

April 29, 2013 – My brother is acting very disoriented and not coherent. Doctors believe that he may have AIDS related dementia. They prepare him to have a lumbar puncture done and CT scan to check brain functioning and status of toxoplasmosis.

April 30, 2013 – Lumbar puncture and CT scan are completed. Doctors give us the bad news that toxoplasmosis has not responded to treatment and is active and progressively getting worse. We are still hopeful that he will be leaving the hospital – but we have been told that he will definitely need nursing home care for a long while, if not indefinitely.

May 3, 2013 – Respiratory functions begin to decline. Doctors say he is not strong enough to insert a peg – to feed him…. It is a Friday afternoon. We are told that there is nothing more that can be done. He will not survive. My mother is distraught. Parents aren’t supposed to bury their children. She cannot stop crying. My brother cries. I cry.

May 4, 2013 – Mom and I make arrangements for hospice. My brother is wrapped up in a blanket – which covers his frail body. His weight is around 70 pounds. His bones are protruding through his skin. His thighs are the size of my wrist. We say our good-byes. My mother rides in the ambulance with him to the hospice.

May 5, 2013 – 8:45 a.m. we receive the phone call. My brother has passed away. We travel to the hospice – stopping at a funeral home along the way to make arrangements for them to pick up his body. My mother says, “I don’t know if I can do this…” I don’t know what to say. We arrive at the hospice. My brother’s body lies in the bed…His eyes are still open. He has such a sad look on his face.

Since May 5, 2013, we have been cleaning out his home, hiring a lawyer for probate, my mother took three months off of school, I took time away from school…. We grieve regularly. Mom still calls and says, “I don’t know if I can do this….” And I still don’t know what to say.

The death certificate reads “Cause of Death: Natural Causes; Acquired Immune Deficiency Syndrome (AIDS); AIDS related complications.”

Silence = Death
Denial = Death
The pain of going through what we (his mother, his family, his friends) have went through and continue to go through has made it very clear to me that HIV is a big deal; that the fear of telling others and their response does not come close to what we have had to deal with and what my brother put himself through; and that this did not have to happen in 2013.

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,856
  • How am I doing Beren ?
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #1 on: September 01, 2013, 04:51:04 PM »
Thanks Phil , not much more I can say .

Offline Buckmark

  • Member
  • Posts: 1,520
  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #2 on: September 01, 2013, 04:56:47 PM »
Phil,

I'm sure it took a while for you to summon up the courage to write about your brother.  But this is important for people to see and read, so thanks for taking the time to post this.  I can only imagine how painful all of this is for you. 

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline mitch777

  • Member
  • Posts: 3,377
  • wish i were here
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #3 on: September 01, 2013, 04:58:13 PM »
It needed to be said. Thanks Phil.
Tears are running down my face.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Robert

  • Member
  • Posts: 2,643
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #4 on: September 01, 2013, 05:07:45 PM »
I don't know what to say...but not saying anything just doesn't seem right.

I am so, so sorry.

robt
..........

Offline anniebc

  • Member
  • Posts: 5,937
  • AM member since 2003
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #5 on: September 01, 2013, 05:09:32 PM »
Hi Phil

Just wanted to join the guys and say thank you for taking the time to write that for us, I know how hard that must have been for you.

I hope people take note for this do the right thing, because HIV is a big deal, and taking Meds is a big deal, and important, it's certainly necessary if they want to keep themselves alive.

Thanks again Phil

Aroha always
Jan :-* :'(
« Last Edit: September 01, 2013, 05:14:11 PM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline pozniceguy

  • Member
  • Posts: 1,175
  • Niceguy Dallas
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #6 on: September 01, 2013, 05:09:48 PM »
so so  sad  Phil  ,  having to  recount this  terrible  experience..... but  thank  for  doing it..


Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Jmarksto

  • Member
  • Posts: 468
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #7 on: September 01, 2013, 05:52:28 PM »
Phil, thank you - I am sorry for your loss and appreciate your work in helping others.

Sincerely,

jm
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline karry

  • Member
  • Posts: 271
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #8 on: September 01, 2013, 06:31:05 PM »
Dear Phil
Thanks for sharing this with us. I am sure many who are hesitating about treatment will be touched by your candid recount of your brother's last days, and they will make the right choice.
Hugs to you.
K.
Take it a day at a time....and be positive about it too!

Offline leatherman

  • Member
  • Posts: 6,062
  • Google and HIV meds are Your Friends
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #9 on: September 01, 2013, 07:44:22 PM »
Aw Phil.  :'( :-*
As I read this and cried, I could only think of how my Jim went from a supposedly healthy "negative" person to being dead from AIDS and non-hodgkins lymphoma in only 69 days. I'm so sorry for your loss but I am thankful for your post and reminder about why treating HIV is the most important thing for any HIV positive person.

Why anyone would want to fool around and risk death - like your brother, my Jim, friends in the past, clients at my ASO just this year - is almost too hard for me to understand. I blithely tell people that "meds are our friends" but that totally misses the tragedy that happens when someone doesn't have access to meds (remember there is still a national ADAP waiting list) or doesn't take meds.

so many hugs to you Phil, and much hope that your words touch the people who need to know the importance of the meds and embrace them.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline bmancanfly

  • Member
  • Posts: 554
  • Medicare For All !
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #10 on: September 01, 2013, 08:07:31 PM »
So sorry for your lose.  I'm sure your brothers story will open a some eyes and hopefully save some lives.

Too sad for words.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline socalpoz

  • Member
  • Posts: 80
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #11 on: September 01, 2013, 08:32:50 PM »
Phil,

So sorry for loss, I could feel your pain and anguish in your words.  Thank you for sharing and I hope others learn from the senseless loss.
Diagnosed Jan. 22, 2011
feb/11 cd4 547, cd4% 37, vl 527
mar/11 cd4 650, cd4% 37, vl 97
may/11 cd4 698, cd4% 37, vl 303
jul/11 cd4 744, cd4% 39, vl 239
aug/12 cd4 675, cd4% 39, Vl 42
Jun/13 cd4 594, cd4% 38, Vl 1860
Jul/3/13 started Stribild
Aug/13 cd4 758 cd4% 43, vl ??

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #12 on: September 01, 2013, 08:33:25 PM »
All the feels.

Maybe stories like that help explain the impatience some of us old timers unleash on people afraid of meds. Maybe not. But all we have are our stories, and our hopes that maybe telling them will help someone, somewhere, chose life.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline wolfter

  • Member
  • Posts: 4,392
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #13 on: September 01, 2013, 09:36:43 PM »
Thank you for so unselfishly sharing this.  I'm sure so many of us that love you want to say more, but words are insufficient. 

Greg
productivity breeds content

Offline OneTampa

  • Member
  • Posts: 2,104
  • "Butterflies are free."
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #14 on: September 02, 2013, 12:03:03 AM »
My fingers nearly tremble typing this as I join the other Board Members in extending condolences to you and your family on the loss of your brother.

I also appreciate the effort it took for you to post such a clear and heartfelt account of your brothers suffering and ultimate passing.

I hope your post will make others take notice for their benefit.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,862
  • Vegas baby!
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #15 on: September 02, 2013, 06:08:15 AM »
Just wow.  Phil, thank you for having the courage and caring to tell us about your brother's last days, and your feelings.  I wish I was there to give you a huge hug.  And hopefully this story will be read and taken in by those who are hesitating to start meds, or hesitating to get tested.  Thank you again.  Huge hugs to you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline intaglio

  • Member
  • Posts: 170
  • Doesn't have to pay for vowels
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #16 on: September 02, 2013, 07:58:28 AM »
Phil,

My condolences to you, your mother and your family. Thank you for posting this,
Reality is frequently inaccurate.

Offline GSOgymrat

  • Member
  • Posts: 5,002
  • HIV+ since 1993. INTJ
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #17 on: September 02, 2013, 09:39:04 AM »
Thanks for sharing your story. I'm so sorry you lost your brother.

 Ford

Offline bocker3

  • Member
  • Posts: 3,359
  • You gotta enjoy life......
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #18 on: September 02, 2013, 09:58:15 AM »
Phil,

First -- I am so sorry for you loss.

I can only imagine how difficult it was for you to relive those weeks as you wrote this.  I don't know if you will get any catharsis from it, but I hope that it opens the eyes of many here and now to what HIV means and what it can do.  This is a truly selfless public service that you have just provided -- if anyone reading this still thinks they can "go it alone" or "don't want to take pills every day for the rest of your life", please re-read this post -- then do so EVERY DAY, until you see the light.

I hope you and your mom can come to terms with this -- I have a positive brother and I can't even imagine having to go through what you did.  However, I do know you and I know you are a strong guy, but please remember that you also can reach out for support -- to me or any number of folks on this forum.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #19 on: September 02, 2013, 12:42:01 PM »
Phil, I am so very sorry for your loss. And I can also not imagine all that you had to re-live through in order to write this. I do know that it will help all those reading it.

Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline RAB

  • Member
  • Posts: 1,895
  • Joined March 2003
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #20 on: September 02, 2013, 01:23:23 PM »
Quote

"The pain of going through what we (his mother, his family, his friends) have went through and continue to go through has made it very clear to me that HIV is a big deal; that the fear of telling others and their response does not come close to what we have had to deal with and what my brother put himself through; and that this did not have to happen in 2013. "Phil

Thank you for such a poignant post.

I am so sorry that you and your mother had to go through this.

My emotions are all over the place when I hear or read stories like this.  Sadness, grief, but (to be honest) mostly anger.  I just don't get it.  Is it denial, fear, depression?  Or a combination of all of the above.  I don't know.

My condolences for your loss.  I am so sorry you had to experience this.  I love you buddy.

« Last Edit: September 02, 2013, 01:28:10 PM by RAB »

Offline britchick

  • Member
  • Posts: 420
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #21 on: September 02, 2013, 01:40:12 PM »
Thankyou so much for sharing you and your families grief.I sat with tears rolling down my face reading this.

Your decision to post your story is so worth it.Your bravery in doing so speaks volumes and will help so many people.

Thinking of you.

britchickx
 

Offline drewm

  • Member
  • Posts: 1,043
  • Mmmmmm Hmmmmmm!
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #22 on: September 02, 2013, 02:03:59 PM »
Thanks for posting Phil. That says everything.  :'(
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,503
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #23 on: September 02, 2013, 02:44:20 PM »
Dear Phil,

Words almost fail me, as I am torn by the tragedy and beauty of your post.  My deepest condolences to you and your family and my utmost respect in your ability to share this with the world.  While we know that SILENCE = DEATH, we also know that KNOWLEDGE = POWER and in that regard, I respectfully submit that this thread should become a sticky post in this forum.

Nothing conveys the power of the truth more poignantly, than the actual words of those who must live with the results of ignoring said truths.

Joe

Offline tednlou2

  • Member
  • Posts: 4,767
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #24 on: September 03, 2013, 02:03:03 AM »
Phil, thanks for sharing this.  As others have said, I'm sure it was emotionally draining to recount what happened.  My condolences to you and your family.

Normally, I wouldn't ask probing questions, about something so sensitive.  But, this thread is about being open and not silent.  I wonder if you could give more background and thoughts on why he ignored the virus, when you are able to discuss it?  I'm sure many would wonder how two brothers, who are both gay and both poz, could have totally different outcomes.  How could you be open about being gay and proactive about your health, but he couldn't? 

Was there severe depression issues, or drug issues?  Did he think how some here have--meds make you sicker and the body heals itself?  What was the family dynamic?  I read he was very close to your mom, but could not share who he was with her.  Was being gay not something to discuss?  If there was shame about being gay, then I could see how even more difficult it would be to confront being poz.  Did he have issues paying and accessing meds?  Was he getting regular labs and they suddenly crashed, before he had time to come to terms with it? 

I know I've asked several questions.  I just thought it would help those reading to have insight into his state of mind, so they may see similar behavior in family and friends. 

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #25 on: September 03, 2013, 09:03:50 PM »
Phil, thanks for sharing this.  As others have said, I'm sure it was emotionally draining to recount what happened.  My condolences to you and your family.

Normally, I wouldn't ask probing questions, about something so sensitive.  But, this thread is about being open and not silent.  I wonder if you could give more background and thoughts on why he ignored the virus, when you are able to discuss it?  I'm sure many would wonder how two brothers, who are both gay and both poz, could have totally different outcomes.  How could you be open about being gay and proactive about your health, but he couldn't? 

Was there severe depression issues, or drug issues?  Did he think how some here have--meds make you sicker and the body heals itself?  What was the family dynamic?  I read he was very close to your mom, but could not share who he was with her.  Was being gay not something to discuss?  If there was shame about being gay, then I could see how even more difficult it would be to confront being poz.  Did he have issues paying and accessing meds?  Was he getting regular labs and they suddenly crashed, before he had time to come to terms with it? 

I know I've asked several questions.  I just thought it would help those reading to have insight into his state of mind, so they may see similar behavior in family and friends.

Ted:
I will do my best to answer your questions, although some may just be guesses....and unfortunately, for some we may never know the answer....

1) I have always been more outgoing and more open about a lot of things with my parents and family in general. I guess being the "black sheep" of the family has had its benefits. I was the first one caught numerous times drinking, the first caught with drugs, the first caught with a girl, the first caught selling drugs, the first arrested, the first with an STD, the first to come out as gay, the first to move out of the house, the first to get HIV, etc.  My brother was always more closed off.
2) Brother suffered from depression - he lost a best friend in a very tragic way about 17 years ago and never got over it and lost other friends early on.... He was pretty vulnerable and did not handle life's downsides to well....
3) The med he says he was put on when he was put on meds (not sure whether that was in 2009 when he was diagnosed or exactly when it was as he could not remember) was Atripla - which was probably the worst drug they could have given him with his history of untreated depression
4) He was not engaged in treatment at all - no labs or anything else since around 2009 that we know of - we have found no evidence of his diagnosis, illness, or medical care in going through his personal belongings - it is like he got rid of anything connected to it
5) My mother is barely accepting of my diagnosis and my being gay... She knows about it - but we don't talk about it - The HIV or the being gay.... In fact, recently when my younger brother came out as gay, my mother called my older brother (the one who just passed away) and said "Well, I got another one." in a very mean, sarcastic way. She is definitely not a big supporter of gay rights and has made numerous comments against me, my partner, and my having HIV.  She still has not revealed the cause of my brother's death to any of our extended family (and I abide by her wishes and have not revealed it out of respect for her - although I have made it very clear to her that I have no problem with being poz or being gay and don't care if any of the family has issues with it - as that would be their problem, not mine)
6) Yes, my brother had trouble accessing meds and treatment - he was unemployed for the past year and had no insurance. However, I could have gotten him access to meds and treatment through the various services available here in South Florida - particularly with him being unemployed and having no other means to access these things.

Shame, guilt, and denial are what killed my brother... Stigma contributed to it - both public and private stigma....

It didn't have to happen; should not have happened; but, I know that know matter what my mind may sometimes tell me, there is nothing I could have done to prevent it from happening, as in the end (or the beginning and in-between) it is up to the person who has this disease to be open enough and willing enough to ask for and/or accept help and to follow through....

Hope the above answered some of your questions - My family still questions why? And the only answer we can really come up with is Denial.... it is the only rationale, irrationale answer that makes sense.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Lou-ah-vull

  • Member
  • Posts: 944
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #26 on: September 03, 2013, 11:48:13 PM »
Phil,

This is one of the most heartbreaking posts I have ever read on here and I believe it will make a difference in the lives of some people who will read this and be convinced to make a change in their own lives as a direct result of your willingness to post your brother's story.  It is courageous for you to share with the larger community and it honors the memory of your brother.

Like the others, I am sorry for you and your family's loss.

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline Lou-ah-vull

  • Member
  • Posts: 944
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #27 on: September 03, 2013, 11:54:40 PM »
This also reminds me of one of the quotes I used in this year's Memorial Service at AMG.  It comes from "A River Runs Through It" as the Norman reflects on the tragic death of his younger brother Paul.  "It is those who we live with and love and should know who elude us...but you can love completely even without complete understanding."

Peace,

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD

Offline tednlou2

  • Member
  • Posts: 4,767
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #28 on: September 04, 2013, 01:43:28 AM »
Phil, thanks for sharing that.  Wow.  That post made me more emotional, than the very heart-wrenching post about him in the hospital.  I hope that doesn't sound bad, or come off the wrong way.  Your last post really shined a light on the stigma, the depression, and the family dynamic, which I just found so emotional. 

 

Offline ratcat

  • Member
  • Posts: 61
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #29 on: September 05, 2013, 09:12:07 AM »
     Thanks Phil. Sorry for you and your family, and thanks for your emotional and powerful post.  There are countless people around the World existing with HIV who have the same attitude towards it that your brother had.  Some will stumble upon this thread and it should open their eyes, hopefully.  I have seen this sort of thing first hand as well.  Waiting until one gets sick doesn't work and leads to death more often than people realize.     

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #30 on: November 05, 2013, 10:29:04 PM »
It's been six months since my brother passed away....

Mom and I are still going through the probate process related to the estate.
We made the decision today not to put my brother's house on the market, but instead to let the lender know that the estate will not contest a foreclosure...

It was going to be too costly to wait for it to sell and I've already incurred more than $2,000 in costs related to upkeep up the house over the past six months (utilities, lawn care, etc.).  Totaled up, financially my brother's death (funeral, home upkeep, lawyer for probate, etc.) have amounted to close to $20,000 - but this doesn't come close to the emotional cost.

Some early tips:
1) Make sure you have a beneficiary listed on your bank account
2) Have a will
3) Have a beneficiary listed on your home

This process, which will continue for a few more months, has been draining on my mother and myself - emotionally and financially...

The hospital bill alone is over $600,000 - fortunately, that will be one of the creditors to the estate - and because the estate has nowhere near that amount of $$ - it will eventually be written off...

We still struggle on a daily basis trying to figure out why my brother did not disclose to anyone... why he didn't adhere to treatment... and why he didn't have any of his affairs in order (he was a bank employee for 15 years - so, he should have known about putting a beneficiary on his accounts, etc....

As I said, this has been a difficult period...there is not a day that goes by that I dont think of my brother - and not a day that goes by that I am not reminded of how unnecessary and untimely his death was when I receive letters in my mailbox addressed to him...

We will get through this... we are getting through this... but, it has not been easy. I would implore anyone questioning whether or not to adhere to treatment to think hard about those who will be affected apart from yourself.... and to remember that there is no way to even begin to imagine how this type of experience impacts those who love someone.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Mrmojorisin

  • Member
  • Posts: 207
    • My Blog
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #31 on: November 06, 2013, 06:18:23 PM »
 Thank you for sharing that, Phil. I am not one to cry at stories like this, but this one did it to me. My condolences for your loss.
 
Started Meds On 5/1/2012 Norvair, Truvada, Prezista, and Bactrim

4/17/2012--CD4 83/ VL 353,000  7.0%
5/15/2012--CD4 218/ VL 4,970    14.1%
6/27/2012--CD4 146/ VL 420      6.1%
10/11/2012-CD4-223/ VL-62       9.5%
2/14/2013--CD4-215/ VL-119      13.6%
7/3/2013---CD4-256/ VL-UD       18.0%
10/18/2013 CD4-223/ VL-UD       22.2%
01/23/2014-CD4-381/VL-UD       25.3%--Dropped the Bactrim

"arrrrhhhhh ahhrrhhhhh aaaarrhhh"- Chewbacca

Offline Snowangel

  • Member
  • Posts: 1,413
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #32 on: November 07, 2013, 12:37:17 PM »
Phil-
Thank you so much for sharing your brothers story. I am sorry for your loss.

Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline challenger89

  • Member
  • Posts: 8
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #33 on: November 09, 2013, 08:38:44 AM »
Phil,

similar to others - thank you for sharing your story. It's heartbreaking but I believe the message you are delivering will hopefully help others in the same situation.

love x

Offline fer00

  • Member
  • Posts: 20
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #34 on: November 10, 2013, 11:21:29 AM »
Thanks so much for sharing this with us. This is the reason why I keep up with my meds and try to live my life as normal as I can. I always think about my family and friends and how devastated they would be. Its definitely  an eye opener I have dealt with denial and silence since the 9 months of being diagnose and it really is a struggle and a fight but I am a strong person and I'm not letting this take over me.
Diagnosed February 2013
CD4 354, VL 4,000
March started on Truvada, Viramune
June Cd4 450, VL 20
Aug VL undetectable
Oct Cd4 503, VL undetectable

Offline Theyer

  • Member
  • Posts: 2,490
  • Current ambition. Walk the Dog .
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #35 on: November 16, 2013, 03:50:41 AM »
I am so sorry that you and your family are having to cope with this tragic death.

Thank you for the work you have done in posting this , its a very important piece.

Much love to all off you.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #36 on: November 16, 2013, 10:24:21 AM »
Thanks all for the continued kind and supportive words...

We are going through the "year of firsts..." 

Thursday was my brother's 49th birthday - the first without him

Thanksgiving is coming up - the first without him

And, of course, Christmas will soon be here - the first without him (and he loved the holidays - so, this is especially hard on my mother). My brother liked to decorate his house completely for Christmas -

As for me, I don't put up anything (Mom has been trying to encourage me to put up something this year - I don't know, perhaps, this will be the year I put up and decorate a Christmas tree - in honor/memory of my brother.

The year of firsts always sucks.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,856
  • How am I doing Beren ?
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #37 on: November 16, 2013, 11:06:06 AM »

Thanksgiving is coming up - the first without him

And, of course, Christmas will soon be here - the first without him (and he loved the holidays - so, this is especially hard on my mother). My brother liked to decorate his house completely for Christmas -

As for me, I don't put up anything (Mom has been trying to encourage me to put up something this year - I don't know, perhaps, this will be the year I put up and decorate a Christmas tree - in honor/memory of my brother.

The year of firsts always sucks.


Hi Phil . The holidays and birthdays are tough to deal with and you have my sympathy's , I know you will be remembering you brother and dad during this holiday season .

I have a hard time with the holidays although I'm not really comfortable admitting how much it bothers me . I cant pinpoint when it began but melancholy and sadness seems to creep up on me during these times and I find my self reliving the loss of people I miss .

I have my Christmas tree up already and my living room is decorated , its the first time in 13 years I have had a hint of the holidays in my home . I will most likely spend the holiday alone like I always do but I am ready to make an effort to make my own special day and do something nice for me . I will be remembering my losses in a different way this year because I'm ready to move on . I know how hard the holidays can be when you are still in full grief and dealing with that first holiday or birthday after the loss of a loved one and time is the only tonic for those emotions and you will remember them in your own way and in your own time .

Hugs and thanks for sharing with us . Jeff .

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #38 on: November 16, 2013, 11:29:23 AM »
Hi Phil . The holidays and birthdays are tough to deal with and you have my sympathy's , I know you will be remembering you brother and dad during this holiday season .

I have a hard time with the holidays although I'm not really comfortable admitting how much it bothers me . I cant pinpoint when it began but melancholy and sadness seems to creep up on me during these times and I find my self reliving the loss of people I miss .

I have my Christmas tree up already and my living room is decorated , its the first time in 13 years I have had a hint of the holidays in my home . I will most likely spend the holiday alone like I always do but I am ready to make an effort to make my own special day and do something nice for me . I will be remembering my losses in a different way this year because I'm ready to move on . I know how hard the holidays can be when you are still in full grief and dealing with that first holiday or birthday after the loss of a loved one and time is the only tonic for those emotions and you will remember them in your own way and in your own time .

Hugs and thanks for sharing with us . Jeff .

Thanks Jeff -
As always, your words and your support continue to be invaluable -
As are the support and words of so many here.... It goes along way in the healing process.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,862
  • Vegas baby!
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #39 on: November 16, 2013, 04:26:54 PM »
Phil, I know how tough this is.  The first year I spent without my parents was terribly bittersweet.  I do put up a few decorations, though, just to try to make my living room look better.

I know this is going to be tough for you.  And I know how much your brother meant to you, and obviously to your mom.  I'm sure you will honor your brother in the way you decide best, and that will be perfect.

I'm thinking about you.  If you need another ear, pm me, I'll send you my number.
Luv ya
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #40 on: November 18, 2013, 12:40:10 AM »
Phil, I dont know you very well, but reading your post makes me feel like I know you all to well.   At least the story of your brother and your family brings me very close to my experiences with my husband William who past away in 2009.   

Denial is a terrible thing to be around.  Secrets kill?  Oh yes, they do...

After four years without William, I have made peace with the decisions he made.   His parents found out about his status via the death certificate.  At least your family knew up front what was happening.   Your post was very moving and I think theraputic for you to document those final days.  Sooner than later, I would urge you to chronical those earilier days of of family life.   I live with no regrets, but boy did it take awhile to move through these five stages.  I did not do it by myself.  I reached out, much as you have.  I pull no punches and I tell it how it is and how it really feels and how it felt.   Your on a good path to recovery from this loss.  You are an amazing Brother and I so enjoyed reading your post even given its saddness. 

In Love and Memory of your Brother,


Eric


Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #41 on: November 18, 2013, 01:15:46 AM »
Phil,

I've been pretty absent from the forums and just now read this.  I'm so sorry for you, your mom, and your brother.  As hard as it is to understand why he was in so much denial, I guess we all deal with such things in our own ways... in some cases, it's handled with denial. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline MASTERMAT

  • Member
  • Posts: 5
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #42 on: November 19, 2013, 07:15:05 AM »
All the stories of our lives living with HIV/AIDS and those who have died of HIV/AIDS needs to be written and kept in a huge data base. by zip code city and state. History is being forgotten. Forget history and you doom us to a repeat of it. sick in 79, diagnosed in 83, by growing the virus from my blood (DR JEROME GROOPMAN)  and kicked off the antibody test in 1990 (rare case). 18,000 people still die ever yr of HIV/AIDS. Young men never saw the worst of it, they have not heard how really bad HIV is. you do not just take a few pills and are fine. their is side effects. cancer, kills you, or it gets killed. HIV is every day. day after day, year after year. decade after decade. People die of it every day. half of the HIV infections in USA are in gay men. We shoulder the burden. If you not part of the solution, your part of the problem. Get tested, get treated. and IF you do not have HIV, do everything you can to not get it. "PLASTIC CONDOMS  and CRISCO work. Latex sucks.

Offline phildinftlaudy

  • Member
  • Posts: 2,959
  • sweet Ann what you think babe...
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #43 on: December 02, 2013, 05:57:46 PM »
Hoping to get the message out to more people to prevent this from happening to anyone else....

Denial and Isolation:
http://www.poz.com/articles/denial_isolation_2676_24857.shtml

Thank you Oriol Gutierrez, Editor-in-Chief of POZ for contacting me and publishing my post in the Forums on POZ.com.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,856
  • How am I doing Beren ?
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #44 on: December 02, 2013, 07:27:03 PM »
I don't have to tell you how amazing and powerful your bothers story is . I do know there is heavy odds that the telling of this sad story will save a life at some point and I thank you again for sharing .


Offline mitch777

  • Member
  • Posts: 3,377
  • wish i were here
Re: Silence = Death (The Outcome of Denial and Isolation)
« Reply #45 on: December 02, 2013, 07:36:55 PM »
I would add to Jeff's comment by saying that your story involves you and those who loved your brother. I am happy to see it published. A huge hug and thank you for having the strength to put it out so others can see the sadness of stigma.
31 years hiv+ (oct. 2013) with a curtsy.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.