Living with HIV and Neuropathy

Today's post is a moving five minute video from a man describing his experience of being tested and subsequently living with HIV and Neuropathy. It will be uncomfortably recognisable to many and is also a reminder that not everybody can just take the meds and live a 'normal' life. (See Transcript and link below)



Transcript

Michael Silvas: I am Michael Silvas and this year I turned 50. I became positive in 1993 while I was diagnosed positive with AIDS. I should have known and should have been tested prior to that denial so weird. The very first person who gave me, who -- I should've known I had AIDS was my dentist. And it was another person I worked with, referred patients with and all that, and he was very good. He had said to me, he said, "Michael, when was the last time, you know, you had an HIV Test?" that should've told me, I'd better get down there and get an HIV test.The first symptoms that I was feeling with unaware for AIDS and maybe someone else can relate to is the reason why I am going through this detail. I would come home -- I was teaching Inclusive Marketing at the time with IBM, and my feet --I remember on Fridays I would come home and my feet would just be killing me and I thought it was the wing-tip shoes because with IBM we wore -- back in my day, we wore dark suits and wing-tipped shoes and etc. And I thought it was me being on my feet all the time, I thought it was the style of the shoes. I never-never would have thought that it was actually a disease or a medical condition.And I didn't even; in fact I had already been diagnosed with AIDS for several years, before I knew that it was actually the medical condition that that there was a thing called Neuropathy. When I was tested, I went down with a friend of mine who I knew was going to get it, you know who had it, I just knew he had it and he has been talking about getting tested but he wouldn't go because he was scared. And so I said -- well, you know, he asked me to go with him and I said, "Sure, I'll go with you" because I wasn't worried that I was going to come out, you know, positive.And now it shocked me! I don't advice anyone to do that, you know. If you really don't want to share your information with a friend, don't go with a friend. It is a big -- it does change your life in a dramatic way and you might not -- you might have a different perspective once you get the diagnosis as to who you want to share it with. I remember getting back in the car and just expecting that they were going to be positive, and then you know I saw that he didn't have a packet and I did and then I had to explain it to him. It just -- I don't know! It was like kind of takes your breath away. When I get asked, you know, how were you infected? It has to be sex!And I felt like I was at the top of my game when I became very sick one week and all of a sudden my stomach started swelling up and getting bigger and bigger. And I started losing controls of my bowels, the lack of better words shitting all over myself and vomiting and vomiting. I went in the emergency room and I remember we called my therapist because I had already started going -- I had already been diagnosed with AIDS but I hadn't been sick and so I started therapy, Psych-therapy. And so I called her as when I was going in the emergency room, she was in there with me. And I remember so clearly that I was there dying on the bed in the emergency room and no one would get near me, no one would -- everyone was scared to touch me.My Doctor at the time, who was an Immunologist was on vacation and his backup never showed, never came. The nurses didn't want to touch me, no one, no doctor wanted to attend me, even with my therapist there advocating for me. What they ended up doing was giving me a shot of a Demerol and sending me home without any examination, without anything -- seeing my stomach just ended, you know, big. Kind of like you see the African babies with the swollen babies when they're starving, it was like that. And so pretty much I went home to die. But at least I wasn't in as much pain for at the moment.I was living -- and it is so funny because I was living in a complex who accepted rental assistance, I had broken out with Shingles really bad. And I understand that normally shingles you get only on one side, but I had it on both sides and it looked like I had been whipped. You know all across my back and all of my legs; it just looked like they've been whipped with sores. I mean it was awful. And I had decided that I was going to not be ashamed, it was part of me trying to cope with my diagnosis and I wore shorts and that was a mistake.I came through -- as I was coming through the complex and walking by the pool, people noticed that there was something, you know, wrong with my legs. And they became aware and they started talking and then they started snubbing me and then they started harassing me and they would do things to me to -- to force me to move.Female Speaker: Wow!Michael Silvas: I take two in the morning, two in the morning and two at night!Female Speaker: And that's also for HIV?Michael Silvas: Yeah! I have to take these together. Along with -- when I take both, I have to take Tenofovir which is a booster. This is a really -- considered a really wonderful break through. For the first time with this medication I had the first undetectable test however it didn't last long.Female Speaker: Okay!Michael Silvas: And now these really aren't really functioning -- I think that if you're considering going into any type of relationship, in fact I do know of people who were in going into a relationship before having sex, especially unprotected sex, they test. And that's almost a way of life now and it should be everyone's way of life. You don't hear enough about that.


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