Anger, Anger, Anger

Its no small doubt that a slow burning, recurring, and small hatred sometimes crops up. Then it is doubt and the worst of all, a creeping self loathing. Only a small tip of the many emotions and feelings that lie simmering below the surface. Or blatantly boil to the top. HIV does this to you. Not often and not always to be sure. But these feelings are there. What makes them so strong? What makes them more intense from one day, week, or even one moment from another? For me it is complicated. HIV is never easy. Even on the best days, best weeks, and best months, I have a nagging feeling that something is about to burst. Maybe it’s because I haven’t put together a streak of feeling really great of more than a few months in a row. And I am talking about just the physical well being part. The mental stress and anguish I have felt over the last three and a half years is hard to put into words.

As of right now I have decided to take a break from my meds. Despite all that I have learned from doctors and websites and professionals all out to help me make good decisions regarding my health and controlling HIV I long for a completely drug free life. No more pills, no more feeling like I am going to puke, no more sickening diarrhea. None of it. And my mind needs a rest. A rest from having to remember that I need to take a pill or sooner or later I will get sick and get into the AIDS stage of HIV again. I feel as if that when I don’t take the pills that I may somehow fool myself that I can return to a short period of normalcy. The old me. The way I used to be. I know that this little break can be permanent and I know that there is a risk, but for god sakes I am tired. Tired of it all. I wanna be Scott like Scott used to be. I have heard from people that have said they feel better when they take a break. And I have told those people that they shouldn’t be doing that. I have been the voice of reason to others. Even now as I write this, I think, this really isn’t the best for the long haul. I know that, I can rationalize that, and I can believe it. But there is some siren song, some deeper lure for a brief respite from the daily mental and physical reminder that comes from taking pills and there every day side effects that I cannot ignore. At least for a little while.

Lately I have been having thoughts of my own mortality. Not the first time that I have, and probably not the last. Before when these foreign thoughts, or at least they should be in my opinion for a man only now 43 years old, these thoughts came to mind and they took on the shape of fear. Fear of losing what I had, what I was. Fear of the unknown of what a hateful virus will do to me and my body. What it will do to my family and friends, to my wife. After three and a half years I have discovered what some of these fears have become. To me it has changed my confidence. Despite what any outward appearance I may show, I am unsure of myself more now than I have ever been. Sometimes the physical self of me is challenged. Will I be able to keep up when out with friends at a trip to the zoo like I always have before. Or have I said no to going to dinner or the movies one to many times because I just didn’t feel great. Should I bring that damn cane today? Even when I do go out and try to be my old self I have changed. I am no longer the life of the party, I slowly passed that on to others and now take a more reserved role in my social settings. I can summon up the fun old Scott when I want to or need to but it is shorter lived and I always pay a price the next day, or even the next week. Confidence leaves you when you have so many trips to the doctors’ office and see so many different doctors and they are always trying to figure something else out. I don’t want you to think that, awww poor him he has it rough. I am just saying, that I wouldn’t recommend having this a daily part of anyone’s routine. It really does start to wear on you both physically and mentally. My family has been strong, been supportive and helpful. Thank god for that. I am happy to say I can’t really complain how they are always on the lookout for me. Sounds great right? Well even that gets hard. It is by no means any ones dream to be the sick one in the family. I often don’t want my parents or my brothers to ask how I am, and at the same time I am hoping that they do. These kind of contrary feelings have become a weight, a burden of sorts that I feel I am imposing on them. I am quite sure that if you asked any of them they would say that this is not the case. I amsure that from their perspective they are truly concerned when asking how I am doing and want to help with the truest of sincerity. What I am saying is that it is my burden, and that HIV is something that, if you have it, you don’t wish to always share it and what it does to you because you want to be perceived as the normal kid in the family again. It like your place in line has been lost, but you still hang around the line to get back in when the time is right. Try it some time, get in line at the grocery store and then when you are smack in the middle, get out, go grab something close by, and call that thing HIV, then walk back to the line but don’t get right back in , wait to just get the feeling if it is okay to jump back in, does the person now in my spot want to let me in, if they do are they thinking, hell, he just cant figure out how a line is supposed to work . And finally, my wife has finally left me, not that I blame her completely, who wants to have an HIV husband. I am sure there is more too it than that, and I will devote more time to it later but to me, in the overall long term scheme of things, it another casualty, another part of the mortality of your life that is lost. And bit by bit HIV can do this to you.

Lately these feeling of my mortality, how much longer am I going to live? Life has taken a different shape. I feel much less fear. I know so much more about HIV, and myself. I have been getting struck lately with feelings of utter sadness. Sadness for what I may miss if I die. Sadness at what my life potential held before HIV and what it holds after. I have little recurring reminders that HIV is not now, nor will likely be curable in my lifetime. This is not to say that I feel like I am going to drop dead any time soon. I don’t think that at all. But there are times when the far off future isn’t there for me to see.

Written more than five years ago, perspectives change, life goes on, and at some point I will forgive myself for not fulfilling some obscure dream. For now I need to find new dreams and live them out. There is a future to be had. I must find it.

…..Scott

4 Comments
  1. bratt1166 9 years ago

     Thank you for sharing this………nice to know we aren't alone in this thinking sometimes. I've had days, weeks, even months of wondering "why do I even bother?" Have even voiced them a time or two to a select few in my life. It a seems to turn around eventually, sometimes it takes alot longer than others. I've contemplated quitting with the meds, one- because I just get tired of pills every day and two- because we aren't really sure what they are doing to us in the long run anyway. But then it all boils down to the same thing……in my case anyway…..I'd have to be taking meds regardess (other health issues) and I'd like to see my grandkids grow up at least a little. I miss being able to do alot of things…..work especially, but life goes on……do what I gotta do which isn't aways alot but I try my best to make sure I enjoy every minute I can when I and feeling good enough to do something I normally can't.

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  2. MarcAnthony 9 years ago

    This is such a raw emotion you wrote five years ago, thank you for sharing….the words that struck me the most: "There is a future to be had. I must find it."

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  3. ScottMoVal 9 years ago

    Thanks to everyone for the kind comments, I indeed had a very rough time fighting for my life back in the day. Somehow it feels better to know I am not the only one.

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  4. docadamshaspert 9 years ago

    Tis the dreams that make the heart soar and the soul heal before the onslaught of time my friend.  Very well written.  This is not an easy fight.  BZ for a job well done.

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