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HIV/AIDS Blog Central

My Story

By ScotCharles

February 23, 2010

I was born into a military family. As a kid, I moved around a great deal. My older brother was the lucky one -- he got to travel around Europe. I was the one who moved from Mineral Wells, Texas, to a series of postings in California and Washington state. My father retired to Central Florida where I finished high school. I went to university in Atlanta where I met my beloved partner of 30 years.

On the Saturday before Labor Day 1984, I learned I was infected with HIV. I was living in Atlanta at that time. I was 31 years old. The news came in the form of a certified letter from the Red Cross delivered by the mail carrier who was the daughter of the pastor of the church I attended in Central Florida as a kid. She had moved to Atlanta to be with her girlfriend and became a letter carrier who by happenstance was assigned a route that included my house. I remember her saying, as she handed the letter to me, "A certified letter from the Red Cross. Isn't that strange?"

I had given blood at work the week before and it was in that blood that the Red Cross found HIV. I had heard in the news of a mysterious gay cancer that was affecting gay men in New York and San Francisco. I was very concerned about this news but my friends thought nothing of it. My doctor told me when he confirmed my diagnosis that I should get my affairs in order and be prepared to die. My partner refused to be tested.

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Shortly after my diagnosis a good friend of mine went into hospital with AIDS complications. He died a horrible death. Soon many of my friends became sick with AIDS and I watched as one after another of my gay male friends sickened and died.

My partner and I looked around at all the death around us and in 1986 we decided to live out our dreams. We began to look at country property where we could open an inn. We found a beautiful spot on the Toccoa River just outside Blue Ridge, Georgia. For the next three years we worked hard to build the business and hardly thought of AIDS. After three years of operating an inn and restaurant 24/7, we were exhausted and decided to sell the business.

The day the business sold my partner and I took out a map of the United States and began to think about where we would go next. I wanted to go to Maine where a historic inn was for sale and my partner wanted to go to San Diego. We compromised by deciding to move to San Francisco. We put our furniture in storage, packed the car and headed west.

In 1990 while living in San Francisco, I met a woman who changed my life. Her name was Beth Robinson. She had been infected by her bisexual husband who told her -- as he lay dying of AIDS -- that he had lied to her about having cancer. He had AIDS and most likely so did she. She stayed angry for years. But soon she overcame her anger by learning to live in the moment. From her, I learned to seize every day and stop worrying about the future. I was with Beth when she chose to die in 1994.

In 2002 my partner retired and we decided that I should take a two year sabbatical from my work so that we could travel. Rather than waste two years, I applied to several graduate schools in the UK and France. I elected to earn an MBA from the University of Edinburgh in Scotland. After earning my MBA in 2003, my employer assigned me to the Los Angeles office.

I started on HIV meds in 1994 and have taken most of the current antiretrovirals. In 2003, I was diagnosed with Pneumocystis Carnii Pneumonia and was hospitalized for nearly a month. The following year I was diagnosed with hardening of the liver and neuropathy. In 2004, I began to notice that I was having a hard time concentrating and that my memory was deteriorating. My doctors told me these were merely symptoms of stress and advised me to learn to relax.

On Valentine's Day 2007, I suddenly lost the ability to walk while dashing to a meeting. Over the remainder of that year, I experienced several episodes in which I lost the strength in my legs and arms. In early 2008, after a battery of tests by an AIDS experienced neurologist at UCLA, I was diagnosed with the beginning stages of AIDS Dementia. I retired from my job in Los Angeles on a disability retirement in late 2008 at which time I was 53.

I want to use this blog to share my experiences with HIV/AIDS. I hope all my posts reassure the reader that the day is sufficient unto the day and that without doubt your life is unfolding as it should.

My motto is "Life is a River. Carpe Diem". I mean by my motto that life unfolds before you as if you were on a raft slowly floating down a river. The riverbank you have passed is memory; the riverbank you shall cross is unknown. On our river, we live in a continuously unfolding present. We must make the most of every moment on our river through learning to fully live in the now or carpe diem -- seize the day. I have survived 26 years with HIV/AIDS because of that motto.

ScotCharles

See Also
Day One With HIV: Finding Out Your Status, in Your Own Words
TheBody.com's HIV/AIDS Resource Center for the Newly Diagnosed
More "Just Diagnosed" Stories
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Reader Comments:

Comment by: ScotCharles (Los Angeles) Sat., Apr. 16, 2011 at 1:51 am EDT
Dear Heartborken,

I hope your partner has recovered. I apologize for not responding sooner. PCP is an horrific thing. To be so short of breath and to be so weak as a result, is for the sufferrer a frightening experience. It is equally frightening for the patient's partner.

When I was diagnosed at last with PCP after so many months of being told I had asthma, I could barely talk and could not walk more than a few steps. It was only after I collapsed in the bathroom that my partner said we had to go to the hospital. As sick as I was, my demon of an HMO doctor wanted to send me home with some antibiotics. Only after my partner raised a ruckus, was I sent to the hospital where I spent a month recuperating. My partner was thunderstruck that after eighteen years HIV+ with no symptoms, I contracted PCP.

AIDS doctors are unsued to seeing HIV+ patients with PCP these days and I beleive commonly misdiagnose the ailment. People on ARV's still get PCP as well as a host of other ailments. Our doctors need to wake up and realize that HIV is still an evil virus that is not fully controlled by meds.

My prayers are with you.

ScotCharles
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Comment by: Heartbroken (Austin, TX) Sat., Jan. 8, 2011 at 9:45 pm EST
Dear ScotCharles.

I am writing to you because I have been looking for anyone who has battled PCP and won. 9 days ago I took my boyfriend of 4 years to the ER to find out he had tested for HIV and PCP Pneumonia. Currently he has been on a ventilator in a medically induced coma for 8 days and is fighting the PCP but it is hard for me not having any hope to draw from. Only 1 other person knows as I made a promise to maintain his privacy. His doctor is optimistic about him getting through the PCP but I am a bit worried what will happen when he wakes up and has to deal with the HIV. I have been doing a large amount of research and would never think of leaving him. Do you have any advice for me? They feel like from his CD4 count of 15 he must have contracting this 8-10 years ago. The hardest part for me is I watched a good friend die of PCP 10 years ago but I am told that medicine has advanced since then. Also why I think this is a bit easier on me is that I tested negative 8 days ago as well as 1 1/2 years ago. Of course I will be getting tested in 6 weeks, 3 months, 6 months and then yearly for the rest of my life.

Seeking your inspiration....thank you.
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Comment by: Dave (NC) Mon., Jun. 28, 2010 at 8:07 pm EDT
Your old life may be over but your writings are of a person who is grateful, learned and still has an innate wonder of life, I encourage you to keep writing positive stories like these, the people you help are more than you know and that is enough, I hope u stay well and continue giving HIV positives food for thought.
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Comment by: Jaime Pablo (San Francisco, CA) Tue., Mar. 23, 2010 at 7:26 pm EDT
May you survive another 26 years, and post soon again.
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Comment by: houston (houston) Fri., Mar. 5, 2010 at 10:57 am EST
life is river charles but we have to keep the water falls
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Comment by: Henry (NYC) Mon., Mar. 1, 2010 at 1:28 pm EST
Thank you for sharing your story, it's very inspiring and beautifully written. I was wondering, considering you were on HIV meds, how you could have come down with PCP in 2003. Were your CD4s in the "normal" range? Can PCP happen even with CD4s in the normal range? Had you had any other major OI in the past? Thanks again for sharing your story.
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Comment by: Blueninja (Philippines) Mon., Mar. 1, 2010 at 5:11 am EST
Scot,

You've done well. A change of direction and determination. HIV may have lessened your body but it made your person greater.

When there's life there's hope. I wish you all the best.
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Comment by: aztekcasper (chicago, il) Sun., Feb. 28, 2010 at 8:28 am EST
I really enjoyed reading ur blog, seeing that ur a long term survivor gives alot of hope to many. I look forward to reading future post. stay strong.
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Comment by: paul (boston) Fri., Feb. 26, 2010 at 7:38 am EST
Thank you. Ive been on meds for 5 yrs and have been charging around at work,stressed to the max as if that was important and that I'll have plenty of time to relax when I retire at @60 (5yrs away). No more. Today I start to enjoy myself 1st. TY
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Comment by: Bird (United Kingdom) Thu., Feb. 25, 2010 at 4:32 pm EST
Charles, a pleasure to read you, as ever.
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Comment by: John-Manuel (Norwich, CT) Thu., Feb. 25, 2010 at 4:09 pm EST
Dear ScotCharles...Thank you for this beautiful, inspiring reflection. Your final observation that life is a river really got me--because I have described my own life as a river, too. I appreciate your pointing out that our lives unfold as they should. I've needed to hear that after the last couple of years as I've struggled financially (like so many in these hard times) while trying to launch a business in my small hometown after so many years of living in a major city. And that's after getting an HIV diagnosis in late 2005, which was the shock of my life after so many years of testing negative. But again, you are right: life is unfolding as it should. It's our choice whether to fight or accept and learn from our circumstances, to be miserable by trying times or to learn and grow from them. Thanks again. Blessings and best wishes to you.
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Comment by: shirene (van bc) Thu., Feb. 25, 2010 at 3:51 pm EST
A very touching and inspiring story .I am a long term survivor myself and this story has inspired me a lot.Thank you..
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Comment by: David (Raleigh, NC) Thu., Feb. 25, 2010 at 3:33 pm EST
What a beautiful affirmation that we are not in this alone and that without the help and support of our friends and family and medical teams, we would not be able to cope and deal with HIV. Thank you ScotCharles for reaffirming my faith in humanity.
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Comment by: Raheem (Canada) Wed., Feb. 24, 2010 at 8:34 pm EST
Truly Inspiring and beautifully written. Thank you for sharing.
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Life Is a River


ScotCharles

ScotCharles

ScotCharles was born in Mineral Wells, Texas. He has been HIV positive since September 1984, and received an AIDS diagnosis in April 2004. He graduated cum laude from Georgia State University in Atlanta, and got his MBA with honors at the University of Edinburgh in Scotland. He's also a certified public accountant and a member of the Honorable Order of Kentucky Colonels. He's been married to his partner, Jim, for 30 years. ScotCharles' hobbies are gardening and water color painting. He and Jim have a sable tabby cat named Pickles who runs the house. ScotCharles is a retiree and regular poster to TheBody.com's Bulletin Boards.


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