Learning to Dance in the Rain by Tony Marschinke

The pride and gratefulness I have in regards to the relationship I have with my brother Tony is incomprehensible. He is a champion. He is trailblazer. He is, in short, one of my favorite people. I am 13 years his senior but we are the best of friends. He loves to write and I love to read his writing. He's had to overcome some setback throughout his life and reinvent himself a million times over. He was born into an extremely conservative family and community which proved to be a hurdle that he not only overcame but completely demolished.

I always say that he is the best thing that happened to our family. He changed the way we saw people and the world. He taught us what unconditional love means.

I am honored and proud to publish this piece that he wrote. He's been sitting on it for a while and finally had the courage to post it and wanted to do so on my blog. I'm ecstatic to do so. I hope you enjoy this as much as I did.

xo - Nicky

 

In 1981 the CDC presented a report of five previously healthy gay men with similar symptoms.
The symptoms were strange but similar to pneumonia. All their symptoms and tests indicated that their immune systems were shutting down. In short, they were dying.

 

In an age when sexual liberation was at a peak for gay men, when so much had been accomplished and after so many had fought so hard for the ability to walk down the street holding hands with their lovers - something much worse was about to unfold. That same year 270 more gay men came forward with similar symptoms. The medical community was labeling what was going on as "The Gay Cancer". This name alone indicated that this was an exclusively gay disease. By the end of that year, 121 of those patients with this "Gay Cancer" had died.

In 1982 the CDC finally found a term for this ailment that wasn't so offensive. They named it AIDS which stands for Auto Immune Deficiency Syndrome. Later on that year infants who had previously received blood transfusions started showing symptoms of this newly named disease called AIDS. This lead experts to believe that this was not an exclusively gay disease, after all.

In 1983 the first women who have sex with men started coming up as patients with AIDS. 

It wasn't after what I believe is 10 to 20 thousand people died that the government finally decided to acknowledge that HIV/AIDS was an epidemic in 1985.

By the end of the decade in 1989, 100,000 people had died from complications of AIDS.

 

Today 1.2 million people are living with HIV/AIDS in the US. 1 out of 8 of those people don't know. 

I wanna share a story with you. As all of you know I've been openly gay basically since I came out of the womb. But "officially" came out of the closet ten years ago when I was fourteen. It was, at that time, the hardest thing I had ever had to go through. Feeling judged just walking down the street was nothing new to me growing up where I did. The weight on my shoulders knowing everyone else knew I was gay but that I was keeping it a secret was terrible. I was bullied and made to feel less than by my peers and the world around me. I had seen campaigns from almost every angle telling me that I would never lead a "normal" life. I was told "Get AIDS and die, faggot" on more than one occasion. It increased the stigma for me personally of something, as a gay man, I feared. I knew as much about HIV/AIDS as possible because I knew this was something that greatly affected the community I belonged to. I knew my facts, I knew how to prevent, and I knew from a young age this was not the death sentence everyone had made it seem.

In December of 2016 I got very ill. It started out as what I thought was tonsillitis, but it ended me up in the emergency room. The doctor took a look at my tonsils (which I've had issues with since I was an infant) and reassured me of my tonsillitis, gave me a shot of penicillin and sent me on my way. Four days later I was not better, worse actually. I went to an urgent care for another set of antibiotics and was sent home hoping for the best. Another five days later I was at work for all of 45 minutes before I almost fainted. Thankfully I work in a hospital and had access to an emergency room just across the building.

When I went in to the emergency room and explained to the doctor my situation, he knew almost right away that it was not, in fact, tonsillitis. He told me that what he believed I had was a bad case of mono and that the reason why the antibiotics weren't working is because you cannot treat mono with antibiotics. So at that point they drew my blood. About an hour or so later the doctor came back to my little room in the ER and explained that the rapid tests for mono came back negative, but that he was almost sure that it was mono. He said that they were going to send my blood to the lab at the U of M for further testing. He also had brought something else to my attention. My viral load (the amount of virus in my blood) was very high. So high, in fact, that it was a number that is typically seen in patients that are HIV positive.

Contrary to popular belief I have never been a sexually promiscuous person. I've only had a few partners and for the most part always tried to be safe and careful knowing that I was in a demographic where, unfortunately, HIV is common.

When he first gave me the results of my viral load, I wasn't scared.  I wasn't floored with the possibility of my entire life changing. I was confused. How could I, Tony Marschinke, someone who was almost looked at as a prude sexually (in regards to my actions, not in my thinking) have this happen? I didn't believe it, I couldn't believe it. One of the things that came into my head was one of the first episodes of GIRLS when Jessa goes to get an abortion and Hannah decides it's probably a good idea to get tested for HIV as well. Before the appointment she has a conversation with one of her friends about HIV that results in her almost trying to talk herself out of believing she has the virus saying "well, it's actually not that easy to get" in which Shoshanna responds "well it's actually not that hard to get either". Those words, that scene, went through my head at 1,000 miles per hour. But yet I still didn't believe it, not me, not I. I had already overcome so much in my life that going through this just seemed like an impossible hurdle to cross.

The doctor asked me if I would like an HIV screening as well. Now a different voice came into mind, it was the voice of a blogger I follow named Barrett Pall who is an openly gay man in New York City. Just prior to this happening was World AIDS Day. In which he had encouraged ALL PEOPLE - not just gay, not just people of color, not just straight people, but all people to know their status. I heard his voice "know your status" over and over again.  I had never been tested, with the few sexual partners I'd had, I never thought it was necessary (dumb on my part, I know). I had planned on waiting until March, as the research I did told me that would be the best timing for an accurate result.  But for shits and giggles I said yes. Test away, doc. Let's get a final answer.

 

Looking back I know I was still in so much denial. 

Later that day I got a call from a nurse at the U of M. My mono results were back. I definitely had mono. No HIV results, though. The nurse told me that they should be back soon and if I don't hear back within a week, everything should be clear, but call to make sure.  Perfect, ok.

One week later while at work and I got another call from the U of M. It was the same nurse who gave me my mono results. The nurse informed me that my HIV results came back. The first time they ran them it came back that I was, in fact, HIV positive. Then they ran a second set of tests that came back inconclusive for HIV. But all I heard were the words "HIV positive" and my heart dropped. It wasn't true, something with the mono must have triggered the inconclusive results. Maybe the antibiotics I was taking prior to the mono diagnosis screwed something up. IT WASN'T TRUE!

 

As the nurse suggested I scheduled an appointment with an infectious disease doctor for further testing. My appointment was on the 19th. At this point, that was almost two weeks away. Two whole weeks. Two weeks I had to sit on this info, two weeks that I had to keep this a secret. I didn't believe it and I wanted to keep the ones I loved from stressing and thinking the worst by telling them, so I didn't. I kept it a secret. Those next two weeks will go down in history as the most alone I've ever felt in my life. I did what any normal person would do and I went to Google. Looking up inconclusive results, positive and inconclusive results, and false positive results. What most people don't understand about Google is that you can find any answer you're looking for if you search hard enough. Well, I had looked hard enough and found mine. My findings came up with this: a lot of  inconclusive results will often come back as a false positive, it's just something that happens. So, I was good. For two weeks I had my peace.

 I begrudgingly went to my appointment on the 19th. My knees shook the whole bus ride, and my gloves were wet from sweat. But deep down I felt it couldn't be positive, plus Google told me I was all good. Right? When I arrived on that Thursday morning I found out that they made an error with my appointment so all they did was draw my blood and schedule me for another appointment for the following week, letting me know that my results could be in as early as Monday. That Monday I got to work and realized the day they re-scheduled me for wouldn't work so I called the clinic to reschedule the appointment (again) and possibly cancel it altogether under the right circumstances. I was still fully expecting a negative result. I spoke to the receptionist and was transferred to the nurses voicemail to see if the results were in. Exactly what you want when you're finding out if the whole course of your life is going to change, right? About two hours later I got a voicemail from her. I called her back, voicemail again. This was possibly the worst game of phone tag I have ever played, and hopefully will ever play. 

The nurses name was Kris, she had a pleasant sounding voice and seemed kind. And with how kind she sounded I thought "This is going to be good news, everything's fine". She introduced herself, I introduced myself (we hadn't met at this point) all was good. And then came the words I never thought I was going to hear, the words I never wanted to hear. "Tony, you are HIV positive". I responded with "What? Shit. Fuck. Shit. Fuck. I'm so sorry I talk like a sailor. Shit. What the fuck?". 

In those first moments I thought of myself. What does this mean for me? Where does this make me stand? I asked about one million questions off hand. "Was there anything else that could trigger this result?" Nothing. "So this is for sure? I for sure have HIV?" Yes. "I have mono, could it be that?" More than likely, no. My head spun faster than it had ever spun before, I had more thoughts going through my mind than I ever imagined was possible. It was real, everything that I had talked myself out of, was real. 

Next, I thought of my family. More specifically, my mom. I thought "My poor mother, how am I ever going to tell her this? I have to tell her this. How is she going to react? Will she love me the same?" Next I thought of my sister, the person who in my lifetime has crusaded for me harder than anyone else I know. How could I tell her that one of her best friends in the world has HIV? I thought of my brothers, would they judge me? Would they accept this just as they accepted my sexuality? I thought of my sister-in-laws and how I've known them both since I was a small child, I am their brother. I thought of my friends, which ones I would tell, which ones would I have to educate like I did with my sexuality. I thought of my childhood and how everything I had known was no longer the same.

 

I kept saying to myself "It's not the end of THE world, it's just the end of A world". Which was true, I knew that life was going to go on. I knew that I was going to have to find a doctor. I knew I was going to have to get on medications. I knew that I was going to have to take those medications every day for the rest of my life. I knew that, all in all, not much was going to change. Other than the fact that I knew I was hurt and I knew I was broken. I knew I felt like someone took a hammer, tapped me on the head, and I shattered into a million little pieces. I knew my life had changed. 

I told my childhood best friend first. Calling her when I was on my lunch break (yes, this happened while I was at work. I didn't want to have to tell my bosses so I stayed for the rest of the day). Her reaction was pretty similar to mine; a mix of confusion and sadness. She picked me up when I got off of work and stayed with me for the entire night until I fell asleep. Something I know I'll be forever grateful for. I told a couple friends afterwards but I knew the most pressing issue was that I had to tell my mom and sister. During the two weeks when my results were just inconclusive, I gave myself every lie in the book to keep it from really happening, I thought of how I was going to tell them. I had planned to have lunch at Old World Pizza. It's our favorite spot. And then I got to thinking, with my mom's multiple jobs and my sister's multiple kids, how were we going to work this out so that I make it seem adamant that we have this conversation without scaring them and telling them over the phone. I really didn't want to do it over the phone. This part was so important to me because when I came out to my mom, I didn't even come out to her. I told someone I trusted and made them promise they wouldn't tell anyone and they told her.  So I had to tell her this, she needed to hear this face to face. Then I thought I could tell my sister first, and then have her help me with telling our mom. It was decided. All I have to do is sit down with my sister. ALONE. WITH NO KIDS. Good luck. As I was texting her trying to make plans for getting coffee or lunch so I could drop the news, she told me to just call her because at this point she was freaking out. So I called and told her. The amount of love and support I felt from that call was amazing. She cried for me, she told me it was going to be OK and basically rubbed my back through the phone. It was what I needed. She even came to my appointment the following week and was filled with questions for the doctor. I was given my new regimen of medications that my doctor stated I will have to take every day for the rest of my life. 

I ended up telling my mom over the phone like I did not want to. I called her thinking it was her day off, hoping an impromptu trip the mall for some shopping would be in cards for us and I could break some of the hardest news to her she would ever have to hear. When she told me that she was leaving for out of town in a matter of hours I felt the anxiety rise to the top of my neck. I was going to explode. I didn't have a good relationship with my mother as a teenager, but as I got older and smarter and she became more open-minded, our relationship had blossomed into something beautiful. She was someone who I could trust, count on, and I knew would always listen when I needed. So for me to keep something like this from her was killing me. I wasn't sleeping, I wasn't really eating. I knew I had to tell her and I did. We made plans for the moment she got back into town to have a sleepover and have breakfast the next day at T&T. At that breakfast we reassured each other of the love that is there and this was another time in my life that made me grateful for the love and support that surrounds me.

One of the things I want people to know is that I'm okay, I'm not dying and I’m going to live a very long happy and healthy life. One of my first thoughts with this was that I had two ways to handle this: I can either choose to do what I've always done and drink away my pain and ignore the facing problems or I could continue to spread the happiness and positivity that this world needs. I chose the latter, I chose to keep my energy vibrations high and up. I knew that I could be a pillar of strength for myself and the ones around me.

 

I'm a very fortunate individual. I know this, I recognize this, I accept this, and I thank the universe every single day. Three months after my diagnosis my entire family knew and my closest friends knew. I have a wonderful doctor who is blunt and to the point, making sure I know I cannot miss a day of my medications. If I do the virus will mutate over the medications causing me to be immune to the medications. I have insurance and I have Medical Assistance to cover the medical bills that I cannot afford. I have an amazing pharmacy that does home delivery and offered me co-pay assistance before I even got my first batch of meds. I'm very lucky. I know that there are millions of people in the world that aren't. And those people don't have access to this kind of treatment. It is a travesty and we need to do more to make ART (the HIV suppressor medications) more affordable for those who aren’t as lucky and privileged as me.

One of the things that many people should know is that there are only a certain amount of medications that can treat HIV. It starts off with a small dose, I take two pills every single day at the same time. But if I miss more than two days of meds the virus mutates, causing immunization to the medication. Then I have to get on a different set, more likely to be about five pills. Same situation, I can't miss those. If I miss those the virus mutates causing me to be immune to that set. Then I would go to another set of meds, most likely ten pills. If I miss a couple days of that, that's it. I only have a limited amount of shots before I become immune to all HIV medications and once I become immune to all, I will one day die of complications of AIDS. The two sets of medications I take regulate my CD4 count (white blood cells that fight viruses) and my viral load (the amount of virus in my body). I need these. When my pharmacist told me that co-pays for my prescriptions were free I almost cried, he automatically signed me up for a co-pay assistance program that took care of it. Otherwise for both sets it would have been about $600 A MONTH. That kind of co-pay would mean I would have to choose between paying rent, or paying for the medications that keep me alive and healthy. 

This takes me to my last and final part in all of this. I know a lot of people are probably thinking, "Why is he sharing this?" "I don't need to know about his sex life". And it's not about that. What it's about is raising awareness, bringing attention to the fact that so many young people do not get tested like they should be. The age group of 20-29 counts for 24% of new HIV infections. Gay men count for as high as 67% of all HIV infections. African Americans count for as high as 45% of new HIV diagnosis in the United States. With as much funding and with as much notice that this gets from the media, why is this still going on? 

I had a friend text me today that she got her full STD screening. I was so happy that I was able to help her break through that stigma to get to know her status. Maybe if people just broke through that fear of knowing, it could be ok. There are support groups, there are counseling centers. This isn't something where they give you a diagnosis and send you away. Shortly after I got my diagnosis I got  a call from the U asking me how I was doing, asking if I needed a counselor, and if I needed them to contact any previous partners for me. It was amazing to me that at the beginning of this how lonely I was feeling and now, where ever I turn I find support. I was just lost in this maze, not knowing where to go, scared. And now I have all these resources to help. If people just understood that there is help out there and this isn't a death sentence.  So until we can talk about these things without our cheeks getting red and getting embarrassed - this will not get any better.

 

My goal in my life now is to get the word out to get tested. This can happen to anyone. It doesn't matter if you've had sex with 100 people or four. Get tested! I know for a fact they have free STD and HIV testing down at La Clinica on the West Side. Get it done.

 

If you are faced with this, just like me, take it step by step, and breathe. And know that you're not alone, that you're beautiful, and that together we can stop this. And that I will always be here for you and to listen. 

 

I wanna say thank you for whoever made it this far reading this, for whoever will support me along this long journey, and who will help me fight to stop the spread of HIV/AIDS. Together we can stop the stigma, get people treated, and stop the spread. Thanks, again.

 

• TM