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Author Topic: Changes and self image  (Read 7279 times)

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Offline DanielMark

  • Member
  • Posts: 1,475
Changes and self image
« on: April 17, 2007, 06:24:42 AM »
My father had a heart attack on Easter Sunday. He survived it and is scheduled for triple bypass surgery on Thursday. This has put me in a reflective state of mind, lots of reviewing the past and who I was and who I have become since my diagnosis. My father and I have never been close. He has never hugged me or said he loved me, nor have I to him. I cannot say I love him, tho I do care about him as a human being.

I never dreamed I would be forty-seven years old and needing to take pills just to keep an enemy in my body from trying to destroy me. I never thought I’d be wearing adult diapers day and night to keep from crapping my pants. I never dreamed I could understand another human being’s plight or problems as intimately as I have come to since my diagnosis nearly two decades ago.

I still feel like me, only quite different now, and I’m wondering what changes (good or not) others have noticed within themselves since being diagnosed.

Daniel

You walk past me
I can feel your pain
Time changes everything
One truth always stays the same
You're still you
After all
You're still you

from You’re Still You
Linda Thompson / Ennio Morricone
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Changes and self image
« Reply #1 on: April 17, 2007, 09:39:46 AM »
Daniel,

Please give me time to digest the content of your message/questions.  I will return, but don't count on much enlightenment from this contributor, I have more questions about this than you probably do.  ;)

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline GoodMatchHawaiiRetreat

  • Member
  • Posts: 51
Re: Changes and self image
« Reply #2 on: April 22, 2007, 03:57:17 AM »
Daniel,  Thanks for your post.  I've survived HIV for 22 years.  Lost a lover of 11 years, and too many friends.  Fortunately it has been 7 years since someone close to me has died.  Every time a loved one passes I get an almost uncontrollable urge to go be with them on the other side.
      I had a great relationship with my Dad.  We hugged and kissed goodnight every night of his life.
One time, just days before he died, I went in to see him.  He pulled me close, placing my head on his chest.  Stroking my hair he said, "You have been blessed with a very bright mind.  You can accomplish anything you want in life.  Don't let anyone every tell you that you can't."
   Dad died at 42 years old.  I was 16.  His words have supported me through a lot.  I have been quite successful in business, had several wonderful relationships, and many close friendships. 
     In your post you refer to diapers day and night.  I assume it's diarrhea?   Several years ago there was a company named Shaman Pharmeceuticals which made a capsule from the sap of the  Croton Lechleri
tree.  The sap has been used by shamans in the Amazon to create normal stool formation for centuries.
In 2000 I took care of a very dear friend who died of AIDS.  When he was ill, he had terrible diarrhea.  The prescription medications all have horrible side effects.  When he took the SB100 it completely restored normal bowel functions and eliminated his diarrhea.  For a time when I was on other AIDS meds I had bad diarrhea.  The SB100 worked EVERY time for me.  Last time I tried the Shaman Pharmeceutical Co's phone number it was not it service.  But a Google search on the internet showed several other co's which sell a formulation of croton lechleri.  It is all natural and has no known side effects.  Highly recommend it.
     Thanks again for your post.  Best wishes for improved quality of life!!!

Offline tigger2376

  • Member
  • Posts: 462
  • too bad to die youngish!
Re: Changes and self image
« Reply #3 on: April 22, 2007, 08:12:06 PM »
I can only say I identify so much with what you've said.
One of those posts that made me cry for some odd reason....
Thanks DM...sincerely, made me feel less alone
xxxxxx
« Last Edit: April 22, 2007, 08:19:27 PM by tigger2376 »
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline BT65

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  • Member
  • Posts: 10,095
Re: Changes and self image
« Reply #4 on: April 22, 2007, 11:37:42 PM »
I've dealt with so many changes.  I must say they're going from bad to better.  I fully understand about the diaper thing.  13 years ago I weighed a total of 87 lbs. and I'm 5'9"!  I was actually pronounced dead for five+ minutes by a hospice nurse who was involved in my case.  I was having constant diarrhea, puking, no appetite, so it was a long recovery back from that.  More recently, sometimes people approach me to ask "how far along are you?"  That's lipodystrophy from the meds.  Currently I'm on Sustiva and Trizivir, but before was on Lexiva and Truvada.  I just wish I could lose the stomach.  As for my parents.... my dad is 79 and is dying from emphysema.  He still smokes.  He doesn't like to wear his oxygen because he says it "makes me look bad."  My mom has stage 4 lung cancer from a bad case of pneumonia which never healed right and second hand smoke.  They're fighters though, and now they're teaching me a lot of lessons about living.  My mom has been hospitalized a few times.  Before I got HIV, she was a pretty hard core religious fanatic (I tested positive in 1988).  Now, she's an old softie.  I go to an "open and affirming" church (most of the couples there are gay/lesbian).  Last Friday I took my friend Denny to meet my mother.  He gave her communion and they had a really nice talk.  She loves ALL people now, regardless of their sexual orientation.  I will truly miss them when they're gone.  My thoughts and prayers are with you all!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Changes and self image
« Reply #5 on: April 28, 2007, 05:32:34 AM »
I can only say I identify so much with what you've said.
One of those posts that made me cry for some odd reason....
Thanks DM...sincerely, made me feel less alone
xxxxxx


Sorry I made you cry, Tigger, but I'm glad to know it helped you feel less alone.

My father had his triple bypass operation last Thursday, and according to my mom he's home and resting comfortably.

My brother on the other hand is going through a terrible time mentally. He suffered severe traumatic brain injury a decade ago in an auto accident. He generally struggles to make sense of the world around him but lately things are taking a turn for the worse.

He suspects that people are coming into his apartment and taking things. He showed up at my parent’s house before my father came back and started throwing things while my mom was there alone. He refuses to take his medication.

Long stories short, he took himself to a local psych facility, and after a doctor interviewed him they sent him home. Gaaak! There are times I'm embarrassed to admit I'm even from that place with its small town ways and even smaller minded people. This is one of them.

My mother ended up having to call in the police, and after much explanation and discussion an officer was able to convince him to come out of his apartment, and he took him to get his prescription filled. Whether he’ll actually take the pills remains to be seen. This is not good. My parents are both 70 now.

Just needed to get that off my chest. Thanks for letting me.

I don't know why I tell you this. My family lives in my hometown and relations with them are so estranged by now and after years of attempts at something better with them I know it's futile. I have to keep away from all of them for my own sanity. I cannot play the rescuer role any more. Self preservation in family matters is not new, only stronger than ever at this point in my life with HIV. Health on all levels is and will always be my number one priority. If that is too selfish, so be it.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline kellyspoppi

  • Member
  • Posts: 153
Re: Changes and self image
« Reply #6 on: April 29, 2007, 12:53:40 AM »
daniel,

what changes can you expect? where do i start.

having a life threatening illness back when folks were dieing more rapidly was like living with a hammer over your head, wondering when it was going to drop next on you.

in 1989 i lost my fiance a month before our wedding. a year later i lost my dad
(who was also my insurance business partner) to lou gehrigs disease. it just so happened that in those same 2 years i was the top sales person in my company, and every time i look at those plaques on the wall i ask myself how the hell i did it.

more importantly though, i would rather have my fiance and my dad back than those damn plaques anyday. their deaths were a turning point for me. i can honestly say that for the most part i lost my desire to be that sales person, and instead decided to change my priorities.

my fiance and i would always talk about traveling to tropical places, which we never got to do. my dad was within the last year of his retirement which he never got to enjoy. were there lessons learned from their deaths? damn straight!

i have made it my mission to live for today, to travel when i can afford it, and to direct my attention to those things i can be passionate about.

i serve my clients to the best of my ability, but for the most part, insurance is my means of income. instead, i am using this time to take control of my hiv, not let hiv control me.

god has blessed me with an opportunity to do something good with what i have, otherwise i would be memorialized on a panel somewhere in atlanta with the rest of our brothers and sisters honored on the names project aids memorial quilt.

the best way we can honor them is to take the life we were given and do something with it. posting in these forums is one way. every time i look in on the " i just tested positive" forum, i read the wonderful posts of those with experience helping those in shock and despair. god bless that poz has provided the world with access to such valuable information.

there was nothing like this when i was first infected, and as i read the posts of the newly infected thanking each of you out there for your encouraging words, i can't imagine anything more important than that contribution just made to keep somone from committing some irreverseable act out of shame or despair.

i feel like my life has been so enriched by the hundreds of plwa's i have met over the years being active in the hiv/aids community, doing legislative visits, attending conferences, sitting on boards and cab's of local aso's, and participating in these forums.

knowledge is power....... taking back control of my life is self-empowering..........
and telling my story to those in power to gain better access to care is the most
awesome experience i could ever hope to gain.

but we need more voices in our state capitals and in washington dc. otherwise those in power will not understand the problems each of us faces day to day living with this disease. access to our meds, access to medical care, transportation to our doctors visits, mental health services, housing...... these are all services many of us have but far too many don't.

our legislators are of the belief that hiv/aids is a manageable disease. because we are no longer dropping like flies, where is the sense of urgency? they can not imagine your pain, they cannot see your diareha, they cannot see your employer unjustly firing you or your landlord throwing you out on the street. you have to tell them your stories to gain action. :o

my deepest fear over the past 14 years has been what services are going to be left when i need them the most. and over that same period i have done my best to raise awareness with my legislators, but over these past several years, funding for aids services has continually decreased. waiting lists for meds keep increasing because there aren't enough scientific based prevention programs in
place to reduce the numbers of new infections.

sorry about the rant daniel, but if your question asked about what changes to expect in the future, here is what you can expect if we don't start screaming.
they will do their best to fund adap so we can continue to live longer, but will they fund the program adequately so we can all have access? not if we don't scream!

get yourself connected to the aids community where you live and find out how you can get involved. we need your voices!

kellyspoppi


Offline DanielMark

  • Member
  • Posts: 1,475
Re: Changes and self image
« Reply #7 on: April 29, 2007, 04:46:28 AM »
sorry about the rant daniel, but if your question asked about what changes to expect in the future, here is what you can expect if we don't start screaming.

Actually, my question was more about how people’s self-image of has changed since diagnosis and living with HIV/AIDS, but I can appreciate your concerns.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline kellyspoppi

  • Member
  • Posts: 153
Re: Changes and self image
« Reply #8 on: April 29, 2007, 10:19:36 AM »
 :-[  i'm sorry daniel for the confusion. you're right, i did kind of go off in another direction there. let me try to answer your question about how peoples self image has changed since diagnosis.

i was no different than anyone else posting here back when i was first diagnosed.
immediate response was "i'm going to die!" i was fortunate enough to be able to disclose to my family about my status and to my closest friends.

but as a business owner, i feared how my customers would respond if they knew i was hiv positive. would they no longer do business with me. i feared how the parents of the boys i coached baseball along with my son would feel if they knew i was positive. i feared how family and friends of the women i dated would feel having this man playing russian rulette with their loved one.

these were all legitimate fears back when hiv was a death sentence,  and when the lack of eduacation about this disease, and how you could get it,  was the norm. self image was at an alltime low back then, and as a hetero who got hiv from unprotected sex with a woman who got it from a blood transfusion, i resented the presses portrail of who were the faces of aids.

once i read "and the band played on" and saw the movie, an anger set in that became the driving force for a change in self-image...."where the hell was our countries response?" and "how could the american red cross reject using the hep b test on our nations blood supply just because it would cost too much?"

i turned that anger and hate into activism and advocasy, a new self image. i became connected to the aids community and joined the gay population in getting involved in a fight for better treatments and more aids services. and to bring a voice to the table of those living with this disease. another change in self image, but still interacting within the safe confines of the aids community, not so much in the open yet. stigma still kept me from going public.

then i began getting asked to speak publicly in high schools, colleges, conferences, world aids day activities, and doing legislative visits. the more i spoke out, the more i began to feel comfortable being open about my illness.
a new self image emerged.

2 years ago i lost my sister to cancer, a 20 year battle by a courageous woman. she told me before she died that she looked at my wife and i as her inspiration to live her life to the fullest, to stay positive in mind and spirit, and to give back to others less fortunate as a reward for her extended life.

last year i attended NAPWA's "staying alive" conference in new orleans and heard regan hofmann challenge pwa's to participate in "our dignity" project. the purpose of these interviews was to get people to "fear the virus, not us".

it was at that point i made the final transition of self-image. i no longer view my illness as something i should fear talking about. i am fed up with stigma and i want to do something about it. i have already participated in a radio interview and newspaper interview where i publicly disclosed since i returned.

how liberating this has been. and obviously, a brighter and more positive self image has emerged.

i hope that is a better answer to your question.

kellyspoppi     

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Changes and self image
« Reply #9 on: April 29, 2007, 01:13:07 PM »
Thanks Kellyspoppi,

It was interesting to read about the series of positive steps you've taken regarding how you perceive yourself and how others might perceive those of us living with HIV/AIDS.

Stereotypes are such an ugly beast.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline kellyspoppi

  • Member
  • Posts: 153
Re: Changes and self image
« Reply #10 on: April 29, 2007, 02:56:01 PM »
daniel,

stigma has made living with illness a long term process before you get to the point i am. i don't want to see others have to take that long.

stay in touch.

KP

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Changes and self image
« Reply #11 on: April 29, 2007, 06:09:32 PM »
Actually, my question was more about how people’s self-image of has changed since diagnosis and living with HIV/AIDS, but I can appreciate your concerns.

Diagnosis with HIV created a number of changes for me, all focused on self-empowerment and self-control.  I knew from my neurosurgical experiences and from sharing life with friends who passed from HIV that being a strong knowledgeable, and vocal partner in my care woud increase it quality and my quality of life.  I started exercising regularly, eating a more healthful diet, getting sufficient rest, and not being afraid to step out and take changes professionally.  In July 1998 I had a 39" waist and weighed 190 with, we guess, around 18% body fat.  Five years later I was at a solid 35" waist  (large bone structure, truly), 220 pounds and 11% body fat, and I've stayed in that range over the last four years by focusing on flexbibility and balance, then cardio, then strength.  I went from a corporate tech support manager to a salaried consultant with some interesting travel demands early on.  And I took the plunge into grad school, keeping a 4.0 GPA one-third of the way into my program now and earning praise from my professors for my writing, including two offers of publication, as well as my fearlessness in getting experiences across to my younger classmates.

With the positive changes, I'll stop short of calling HIV a "gift"--that's so trite and so not true.  Still, any adversity is what we make it, and I've been fortunate to avoid many complications from the disease or treatment -- losing my body hair spontaneously after four months on Crixivan and sufferring Viracept squirts were inconveniences compared to what others have faced.  If anyone deserves credit for my making the best of diagnosis, it's the friends who taught me so much of about living and surviving for almost two decades prior.

Cheers,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline FiercenBed

  • Member
  • Posts: 183
Re: Changes and self image
« Reply #12 on: April 29, 2007, 07:11:55 PM »
sorry...ur post made me cry to....it happens

when i disclosed to my 1st friend he said, "so has everything changed"? i was like what r u talking about?. he stated a friend told him after diagnosis everything changed. i was like thatz silly!

well itz true.... and i hate to b a bummer, but it hasnt changed for the better. but i hang in there.

good luck!

Offline hudstar

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  • Posts: 130
  • 2010
Re: Changes and self image
« Reply #13 on: May 25, 2007, 03:19:26 PM »
Wow, what a posting - reading your post I believe more in your words than I do any written religion. You asked a very hard question here!

For me I didn't realise what changes I had undergone until I went to a poz group last year. I was an alien in-amongst short term poz diagnosed guys who knew each other for years. It bugged me and aliented me even more as they talked about exterior and material issues and not much about themself. Very today attitude I guess.....maybe it was just a bad group or they watched too much tv....who knows.

Thinking as I type this, I guess I realised the main difference between them and me was I was told without question i was going to die, they were never told that and had a plethora of drugs out on the market ready for use. HIV seemed more of a badly placed hiccup to them than a life altering situation. Being told you are going to die has got to influence your views. I know death was the basis for the rest of my life. While young guys of 22-23 yrs of age were doing what young guys do, I was dealing with mortality and fleeing my country. I concentrated on travel and then drugs came available and I was here a bit longer so I concentrated on expanding my career. My chosen career was cut short by HIV bans in countires like USA so I tried another one. Sadly, due to the nature of my work and exposure to illnesses (i.e working in isolated and remote places like Vietnam or Cambodia) I had to give up that idea unless I worked for corporate companies to legally ok them to knock down cultural heritage sites - "NO WAY" as my HIV diagnosis and my need for travel gave me a religious approach to evidence of life - afterall that was what I was seeking for myself. As young guys reached there peak in jobs I had worked successfully to stay overseas yet my job resume read like my hiv life - I broke the thread often to stay ahead of  being found out as HIV or exposing myself to remote illnesses.  I guess as time evolved I never involved myself in a dog eat dog environment that seemed to be dominating the urban world around me. When I did try to be a suited up corporate 30 something for three painful years in a 9-5" legal job I got lymphoma. I realised HIV has limits, maybe I had limits and office culture was not as life giving as scaling an active volcano?  So HIV influenced my career path

I think being HIV is solely self protection /preservation and I know if I was diagnosed last week and at the age I am now things would be different. It has been a struggle for me on an intellectual level  because that is my nature. For me I felt my young body let me down albeit I never had signs of a virus until lymphoma. Maybe HIV influenced my perception of people. I did not feel any trust for outsiders to invest my soul in them, I felt that was all I had left. Then again, being scared of close contact and asked to f%*k by someone that is confident in one nighters and looking over your shoulder at an alternative potential if you do not respond fast enough may also be the reason for my ......once again, who knows. I realise now I have watched from the outside since my diagnosis rather than mix with a specific group. Maybe if I had established myself within a gay environment early on in my life things may have been different once again. Gladly I did not close off totally after HIV and I travelled to learn all I could about the world I lived in. Thinking I was dying I went overboard in adventures that no-one would do - often I injured myself. I guess as a result I have gained an insightfullness more than your general Joe would and I would not have done these things if I was not Poz, (maybe I would have as it could have been my character.... I never had time to find out?)

I cannot think of how things could have been, it altered all I knew because it occurred when I was just exploring my sexuality, youth and life away from my parents. I guess I never thought I would live to 25. I spent my 41st in the Marquesas islands thanking nature for being consistant and steadfast for me all those years so maybe this atheist raised guy has some earth based religion due to HIV. I guess it is in people to have compassion or not to have it, regardless of status. Out of all this experience it bugs me how a lot of people waste life on empty ssues -that is a result of my HIV life.
« Last Edit: May 26, 2007, 01:58:58 AM by hudstar »
diagnosed 1988
POZ personals - hudster

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Changes and self image
« Reply #14 on: May 25, 2007, 06:09:00 PM »
Hudstar,

When my doc gave me the good news in 1988, he told me to go home and get my affairs in order because I was looking at a life expectancy of maybe six more months. So, I believe I can understand about the meetings with the group of newly diagnosed people. Thanks to the folks who pushed to get this forum going, we no longer need to feel that disconnect.

It was interesting to read your comments on the changes within you. Seeing the world through a different lens after diagnosis, the same thing happened and is happening every day in my own life. I’ve really learned to separate what matters in life from the peripheral stuff, and in doing that I find my life feels enriched somehow. I’ve allowed my comfort zone to stretch too, and learned some surprising things by doing so.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline kellyspoppi

  • Member
  • Posts: 153
Re: Changes and self image
« Reply #15 on: May 25, 2007, 11:30:04 PM »
daniel and others,

i have to agree with some of the thoughts expressed in these last couple of posts. i too believe that being diagnosed back at a time when the threat of dying was more eminant, many of us thought to cash in life policies and get to traveling to places we might not ever had gone to if it wasn't for this disease.

i also had a secondary incentive that motivated me into that "get busy living" mode. my dad, who was a politician, community leader, and founder of many youth activities, besides being in the insurance business for 45 years, was diagnosed with lou gehrigs disease the year he planned to retire.  on the day i learned of his diagnosis, that night my fiance passed away from aids.

besides the normal grief and anger that comes from a loved ones death, i now had to watch my dad ( and business partner) for the next year and 1/2 wither away from an illness not much different in visual appalling nature than that of aids.  the anger i was feeling over that though was much different than the anger i was feeling over my loved ones death.

i was angry at what was happening to my dad because here he had given so much to others and when it was time for him to reap the fruits of his labor, he ends up bedridden and on a ventillator. and there was my mom, sitting there with travel maps and books on all the places she and dad were supposed to go once he retired, now realizing that her dreams were being shattered. there wasn't much time for travel with all my dad was involved in for them to go places for any length of time, and now there never would.

my fiance and i would sit some nights at the local airport when we were first dating talking about where we would like to go if we were on that plane taking off, but her death came too soon for that to happen.

so after i met my current wife in 1992 and we got to planning our honeymoon a few years later, she suggested we go to mexico. i said, why the heck would we want to go to cancun, we don't speak spanish? she said, well i went to acapolco (sp) on my first honeymoon, and it is no big deal.

then it hit me. all those missed opportunities with my fiance and the same for my mom and dad. lesson learned. we went to cancun and i was never so thankful and appreciative of being able to do so. i felt like i was in paradise, and from that point on, my wife and i try our hardest to save & travel as often as we can, even if it is a week at the atlantic ocean with our grandkids. the ocean can be so rejuvinating, especially after the harsh winters we endure here in the great northeast.

so that is the one big change i would definitely say was for the better since i received this diagnosis.

now i know there are many who post here who may not have the means to travel the way we do, but the point is that it is important to take time for yourself, to do what you have to do to make yourself happy, even if it is taking a bubble bath, or a walk in the nearest park or flower garden. something to reward yourself for this struggle you have been in.

for the newly diagnosed, who may not view this diagnosis as the death threat we once struggled with, you are still looking at a lifetime of taking meds and all those nasty side effects. sometimes that can wear you down, so it is just as important for you to reward yourself whenever possible.  live life to the fullest as if there was no tomorrow.

that is the lesson i have learned.

kellyspoppi   

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Changes and self image
« Reply #16 on: May 26, 2007, 02:44:10 AM »
Hudstar,

When my doc gave me the good news in 1988, he told me to go home and get my affairs in order because I was looking at a life expectancy of maybe six more months. So, I believe I can understand about the meetings with the group of newly diagnosed people. Thanks to the folks who pushed to get this forum going, we no longer need to feel that disconnect.

It was interesting to read your comments on the changes within you. Seeing the world through a different lens after diagnosis, the same thing happened and is happening every day in my own life. I’ve really learned to separate what matters in life from the peripheral stuff, and in doing that I find my life feels enriched somehow.

Daniel



Daniel, you said that you have allowed your comfort zone to stretch too, and learned some surprising things by doing so.

You definitely provoke me into thinking :)

I heard a really funny statement in a comedy play a few years back with Kiki and ?? John I think...........it went something like ...... "my friends from back in the eighties, they are all long term terminally ill now".  I laughed so much at this longer living through pills attitude. It was probably more real than i thought. I guess no-one supported us with the transition from definite death to "we are hopeful" to what is now "living far longer". That is probably the current journey I am on.... I do believe I'm here for much longer than I thought and I am an starting to reassess long term with caution.  Is it odd to say I find I'm dealing with infiltration back into the "norm" harder than I did when dealing with removing myself from what I labelled as the "rat race".  I think my comfort zone became extreme travel. The thought of settling in one place and working 9 - 5 still scares me. I still think if I stop exploring I will die or that my soul will become dull and cause me to give up.

Lincoln
« Last Edit: May 26, 2007, 03:07:18 AM by hudstar »
diagnosed 1988
POZ personals - hudster

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Changes and self image
« Reply #17 on: May 26, 2007, 04:39:40 AM »
Lincoln,

Here’s an example of what I meant by allowing my comfort zone to stretch:

One of my hobbies is song writing (kind of modern folk stuff). In 2005 a friend of mine told me about a local organization who was looking for songs to that would be on a CD to raise funds for a local food bank, and after some thought I decided to submit one. Well, it turned out that this project also included a live show of all the performers whose entries were chosen. Being a writer and not a performer I found this distressing at first, but decided to go along with the idea despite my anxieties. Another friend of mine agreed to sing harmony on the two songs we would do.

The evening opened with the MC describing the mix of songwriters that would be performing, from the “more seasoned” to the “closet writers” on the bill.

Our turn came to do the first song of the night and I guess that remark had stuck in my mind because in my introduction I said:

“Good evening everyone, I’m Daniel and this is my good friend Kathy. The first song we’ll be performing tonight is the one that was selected to be included in this year’s show. I think I’m one of those closet writers Pat mentioned earlier. I’m not really a performer, but what better place to come out of the closet than at the National Arts Centre?”

The audience broke into fits of laughter and applause.

Whether or not the songs came out sounding as I hoped I can’t really say. But I did get several compliments from the other writers at evening’s end. I felt like I was on auto pilot most of that night, but the fact that the audience laughed at my silly joke put me somewhat at ease.

My point is, I would never have known I could get up in front of an audience and perform if I hadn’t taken what to me was a chance on being vulnerable in front of a group of strangers.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

 


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