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HIV/AIDS Blog Central

Openness

By ScotCharles

September 2, 2011

As I held my pruner in one hand and the guide book for pruning a bonsai in the other I read that a bonsai is pruned to promote openness. The guide book continued with the helpful hint that the trunk and branches of the bonsai are pruned so that they peek through the foliage. The bonsai I was about to prune is a western cedar whose growth was naturally stunted by a liquid amber tree. It is about four feet high and five feet across and was at one time an elegant addition to my back garden. Now, it looked like a badly pruned hedge.

I set about promoting openness in this little tree with my pruner and slowly an elegant, perfectly proportioned little tree emerged. The work took my mind off my visit to the doctor's office that day during which I was told my viral load was over 1 million and I had 100,000 copies of HIV per milliliter of my spinal fluid. As I promoted openness in my little tree, I thought about the meaning of that conditional noun and my current condition.

I have tried in my life to act without prejudice and not to be closed to new ideas. My doctor told me during our appointment that my condition was in an "emergency" status. I found that statement odd as I have felt over the last 27 years I have had HIV, that I have been in an "emergency" status all the time since every day I have had since my diagnosis in September 1984 was a blessed gift. I have a hard time becoming concerned about HIV as the years with the virus have made it a companion, like a cat that is always there but is seldom demanding.

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I have learned over the years with HIV, that the virus does not define me. I do not have to be angry because I am infected nor do I have to be despondent at my prospects. In great part HIV has spring boarded me to a state of self-actualization I otherwise would not have attained. The immediacy a serious condition brings to life can make the journey to self a compulsory voyage.

I had to be honest with myself because in part I had caused my current condition. Over the years I have taken a lot of AIDS meds. I took AZT in the '80s which made me feel as if I was full of ants. I took ddC which made my mouth feel as if it was full of razor blades. Both of these meds I am now told by my neurologist damaged my peripheral nervous system. I took Sustiva which caused intense nightmares and waking psychotic episodes. I have also watched as friends had bad reactions to the meds. Crixivan made a friend of mine into a hideous blob with dangerously high cholesterol and caused him to die of a heart attack in his early thirties. Another friend took abacavir and developed painful lesions on his legs as a result. My face is numb, which I am told is caused by the Norvir I take. As a result of all these experiences, I am loathe to take the meds.

Every day I have to fight an urge not to take the meds because I believe deep in my soul they are not good for me. Who really knows what the long-term effects of taking the meds are? Some weeks I cannot bring myself to fill my weekly pill box with the meds and some weeks I can. Twenty-seven years with the virus has made me less than worried about it. I know I should take the meds, but a part of me says, "You've survived 27 years, what's the worry?"

I am also often tired of the fight. I feel as though I have been chased by a ravenous wolf for 27 years. A part of me wants to turnabout and face the wolf and get the chase over. It is a hard thing to fight a battle for nearly three decades. I am told by my doctors that I have second stage dementia that eventually will become worse. I face the prospect of raving lunacy. Would it be wrong to choose a quicker death?

After I pruned my bonsai, I spent the night crying into my pillow as I slept in the second bedroom to give my partner a break from my crisis. I decided that night to continue to fight until I know for certain that my mind is going at which time I will make a decision to go on. It's said that "When one door closes, another opens." My viral load has never been as high as it is now. I do not know what will happen. I am open to whatever comes. I am like the bonsai in my garden; the virus has pruned me. I am open and exposed. Like my little tree my life goes on and I go with it.

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See Also
More Inspiring Stories of Gay Men With HIV

Reader Comments:

Comment by: Jerry (Las Vegas NV.) Wed., May. 16, 2012 at 7:17 pm EDT
Please keep taking your meds. And don't miss a dose! Fight I am and I get very sad but I have very bad depression. I feel alone I have been with my partner for 18 years now. he's been great but just does not understand how I feel. he says he would like to make it go away. but I tell him you know its not. And I have diabetes type 2 and a bad back! oh life is so fun not! But hang in there I take the wrong street sometimes when i am going to the docs or some other place.thimk I am losing it to very tired. I love to work out in the yard. ever since i was about 8 years old. Love to watch things grow and be so beautiful. I could type all day to you but I hate to sorry. if my words are misspelled! or the rest of this didn't expect to send anyone an email. I never do. well sometimes but not this long. god bless you I will be turning 48 in July. But I don't mind old age it's just feeling so lousy. take care of yourself and do your best ok. wishing you the best your viral load will go down. Take it as percribed you now better! Good luck with your health it will get better:} Jerry. p.s. I was born in Houton Texas!!!
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Comment by: Anonymous Tue., Feb. 14, 2012 at 12:26 pm EST
I wonder the same thing as the anonymous poster below me. How are you doing? I check your blog frequently because I really like to think about what you say. I hope that all has been well for you these past few months.
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Comment by: Anonymous Thu., Feb. 2, 2012 at 7:54 pm EST
How are you? Just wondering.....
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Comment by: ScotCharles (Los Angeles) Tue., Oct. 4, 2011 at 8:34 am EDT
In response to Robert. When you have a million copies of hiv per ml. of blood, the CD4 count is immaterial. CD4 counts rise in response to infection at high levels of HIV. My CD4 count during my million infection bout, which lasted about a month, was between 265 and 374. My usual CD4 is 325 to 375.
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Comment by: susan (Illinois) Wed., Sep. 21, 2011 at 11:39 am EDT
Hi Scott,
I hope you are doing well. You do not know me but your blogs have provided me with strength. I am devastated by the loss of Dr. Bob. I have read everything from him everyday for the last 2 years. Your blog and his posts have gotten me through. From a selfish prospective, please do not throw in the towel. I started reading your blog a year and a half ago and you help me through. I will pray for you always,
Susan
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Replies to this comment:
Comment by: ScotCharles (Los Angeles) Tue., Sep. 27, 2011 at 11:20 pm EDT
You are so kind. HIV causes depression by acting on the hippocampus in the brain which controls mood. I have many issues with med compliance that I am working through with my psychiatrist, psychologist and social worker. Compliance is not an easy issue for me as the meds make me feel sick in a number of ways. Depression makes compliance that much more difficult.

Every day is a new day. One can only do his best.


Comment by: werker (Ohio) Mon., Sep. 12, 2011 at 11:58 am EDT
ScotCharles, thank you for your candid posts. I was relieved to see you returned from Egypt before the protests started. Wishing you well, please keep writing!
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Comment by: Katharine (Palm Desert CA) Sat., Sep. 10, 2011 at 6:27 pm EDT
I am going to try to read this to Mother. I hope I can get through it.
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Comment by: Johan P. (South Africa) Fri., Sep. 9, 2011 at 4:58 am EDT
Times have changed since then i am on Truvada and Isentress and have no side affects and lead a perfectly normal life maybe its time you get a second opinion we have a specialist in our country by name Dr Stevan Miller check Innovair institute check the web i have seen him done miracles don't just give up.
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Comment by: ScotCharles (Los Angeles) Tue., Sep. 27, 2011 at 11:25 pm EDT
I have not given up; I am tired and the future looks grim. I took Eucharist to a woman who was in the final dementia ward at Laguna Honda in San Francisco. I know what the final stages of dementia are. As I have said on many occasions the best way forward is one day at a time. Sometimes however I remember those howling people in the ward at Laguna Honda and I dispair.


Comment by: Bernard (Cape Town South Africa) Fri., Sep. 9, 2011 at 2:54 am EDT
Im positive for 18yrs now . I can relate to sometimes getting tired of the fight , taking the meds , Im also sometiems worried about the long term effects of these meds , but I just try to live for every day ,living my live to the best I can . All the best and let us pray for each other ....
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Comment by: ScotCharles (Los Angeles) Tue., Sep. 27, 2011 at 11:29 pm EDT
It is hard to fight for so many years. I have such deep survivor's guilt that I lived when so many good people died. It is best to live for the day and to be joyous in it. I embrace your prayers.


Comment by: Scribbler (Mountain West) Thu., Sep. 8, 2011 at 4:29 pm EDT
I am watching a beloved person with AIDS dementia. It will not be running over the horizon screaming. It will be slowing, dimming, maybe irritability, impatience with friends. The same people will love you in the same way the whole time. Plan good times and many hugs.

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Comment by: ScotCharles (Los Angeles) Tue., Sep. 27, 2011 at 11:39 pm EDT
HIV dementia is a slow process unlike Alzheimer's which is fast. Still, the slow erosion of cognition is a %^$$#. Most people are not understanding about mental illness and you will see that one by one your friend's less understanding friends will drop away leading to isolation. Your friend is lucky that she/he has you. Be understanding of the mood swings and the irritability. You should read the "36 Hour Day" to understand your role in your friend's dementia.


Comment by: ScotCharles (Los Angeles) Sun., Sep. 4, 2011 at 5:29 pm EDT
Good news - I have reduced my viral load to 1000 in three weeks. My latest neuropsych report shows marked weakness in my limbs, which may be caused by HIV damage to my brain. I am to undergo an EMG next month a procedure I hate as it involves running an electric current through your nerves. It is perfectly awful. I will take 3 mgs of Xanax to calm me down so I can stand the shocks. I am also to get another spinal tap, which is as awful as the EMG. Cross fingers all will be well.

The neuropsych test also showed that I have expereinced a marked decrease in my ability to learn and comprehend. My IQ before all this dementia stuff was 172 and is now 126, which is still good.

I have now a social worker who comes by every week to help me fill my medicine trays. As my IDS says the hardest part is taking the pills.
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Replies to this comment:
Comment by: Peter (Auckland, New Zealand) Thu., Sep. 8, 2011 at 4:01 pm EDT
ScotCharles, thanks for your posting.

I am really confused.

I have seen one doctor on The Body tell one questioner that nearly ALL people on meds suffer from one side effect or another.

And this very night I have seen another doctor on The Body tell another questioner that MOST people on meds don't suffer bad side effects at all and DO live perfectly normal lives.

The other week I read what I thought was an excellent article on The Body about the need for "The Cure" but I've noticed that there has hardly been any response to it. It's like 1000s and 1000s of people living with HIV aren't interested in the cure.

And now this evening I have read your testimony, which is proof that some people are suffering horrendously despite anti-retroviral meds.

Meanwhile the AIDS organizations are all spreading the message that people should practise safe sex but also remember that having HIV is a manageable condition, no big deal.

So I am really confused.

Does anybody actually know what the truth is!
Comment by: Robert (SF, CA) Thu., Sep. 8, 2011 at 5:50 pm EDT
Scot, I wonder how was your CD4 while your viral load was over 1 million? I´m glad your viral load have reduced now. I declare your IQ will be ok and even will increase in days to come, this is In the name of Jesus Christ.

Hope you can aswer to my question about your cd4.

Blessings
Comment by: Green Trees (Atlanta) Fri., Sep. 9, 2011 at 3:10 am EDT
That's Great news! So your cognitive ability went from Very Superior to merely Superior............, yes still good. LOL! Sending you big hugs.
Comment by: gurlzone (New York) Fri., Sep. 9, 2011 at 4:19 pm EDT
In response to Peter, no reputable AIDS organization would say that because HIV has become a manageable condition for many that it is no big deal. Of course it's a big deal. When prevention doesn't work and we are telling someone they are positive, we want to share the good news that HIV is no longer a death sentence the way it used to be, that new treatments have made HIV infection a long-term chronic and often manageable condition.
Comment by: ScotCharles (Los Angeles) Tue., Sep. 27, 2011 at 11:55 pm EDT
HIV is not a manageable chronic illness over the long term no matter what any has told you. The virus is neurotoxic even at undetectable levels and the meds work at the cellular molecular level, which may be toxic.

Since 1995, the meds have been pushed through approval without the usual long term studies. This is a result of the delay in releasing protease inhibitors in 1995 that was the cause of riots by ACTUP and other organizations seeking apporval of those meds. There are no long term studies of the effects of the meds on the body; we are the long term study cohert. Just look at the meds that have been removed from use - ddc and Abacavir because of their deleterious effects.

Yes, HIV is not a death sentence; but, for those of us who have had the virus for nearly three decades the effects of long term infection - dementia, osteoporosis, arthritis - are in some ways worse than a quick death from AIDS.


Comment by: Green Trees (Atlanta) Sat., Sep. 3, 2011 at 10:41 pm EDT
We are all here on a journey. Our mission in life is to complete that journey and hope that along the way, we've learned our higher purpose. My firm belief is that only God can tell you when that journey is over. And while it may be hard, take heart. There's a reason that you're still here when so many others have gone before you. God Bless.
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Comment by: B. Miller (Philadelphia, Pennsylvania) Fri., Sep. 2, 2011 at 1:52 pm EDT
Hi Scott,

Thanks for your blog. I also suffer from HIV early onset dementia and know the suffering you are currently going through. Has we both know, there is no right answer. However, I fully understand and have no moral convictions when an individual decides to throw in the towel. From a selfish perspective I ask that you do not give up. Your ongoing blog and dialog with others really inspires me.

Best Regards,
B. Miller
Philadelphia, PA
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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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