Yeah, I just click-baited you. Sort of. No, I’m not a Harvey Weinstein type, so I’m sorry if you thought this was the Sredy exposé of the century. This isn’t a subject I expected to write about in 2018. I’m not sure where to begin, so I’m going with a clichéd, “I’ll start from the beginning.” The summer of 2006 changed my life dramatically. Up until this point, I had been a normal freshman in high school spending weekends with friends skateboarding or playing video games. Towards the end of the year, I noticed that my body began changing. Yeah, I’ve heard of puberty. Thanks. I’ve been shaving my face since middle school. This wasn’t that type of change. I developed a weird rash on my legs. I didn’t think anything of it because I’ve dealt with chaffing plenty of times. However, the rash didn’t go away and worsened as the summer went on. I didn’t want to see a doctor because I truly believed this would pass, but that never happened. This was only the beginning of the next two hellish years.
I visited a general practitioner and dermatologist in August of that year. Long story short, I contracted an infection that developed into what’s called Hidradenitis Suppurativa (HS). That’s quite the cluster-fuck of letters combined into medical lingo that made no sense to my parents or me. Basically, HS is an incurable disease that attacks the sweat glands, eats surrounding flesh, and hurts like hell. I don’t recommend Googling it, but if you are curious about what I’m going through I can’t stop you. The infection mentioned before nearly killed me. The doctors told me had I waited another week I could have been dead. Shout out to my parents for saving their dipshit teenage son from almost unintentionally killing himself. But in all seriousness, those words were not something I took lightly. The first couple weeks were unbearable. My skin was literally melting away daily while also developing new wounds. I’ll spare you the details, but during this time I should have invested all my money in gauze because of how much I needed. Needless to say, I related to the movie “Cabin Fever” a lot. None of the treatments had been working, so I had to continuously try new methods. The problem areas eventually became so deformed that it healed permanently into those shapes. My body really tested me the next coming months as other complications arose.
My dermatologist told me I needed to avoid sweating because it caused my disease to worsen. Easier said than done, doc. Everything I loved doing made me sweat: skating, playing sports, etc. I wasn’t someone who stayed in the house very long. I begrudgingly complied and became a couch potato. All I could do was lay around and watch TV. It wasn’t a big deal at first, but the lack of activity eventually did harm to my body. I lost a lot of weight over the next couple of months, which I thought was awesome because I had been a fat kid most of my life. I didn’t know that I was losing muscle instead of fat. I learned quickly there's a huge difference. It made ordinary activities extremely difficult. The combination of the HS and lack of muscle lead to trouble getting out of bed, removing myself from the couch, and even wearing clothes. You read that correctly. It hurt to wear clothes. This wouldn’t have been a big deal if Emma Watson was my wife at the time, but I wasn’t living a fantasy life. My body became so weak that I couldn’t lie in bed comfortably. At times I would sleep on the floor because it was a different surface than my mattress. All of my clothes and sheets became stained with the fluids leaving my body. Do you want to wear white? Yeah, not happening. Do you like those khaki pants? Nope. It wasn’t pleasant being limited to my clothing options. I also had to worry that my wounds would drain in public. Fun fact: this happened a lot. I had designated t-shirts that became permanently stained because of the drainage. I could only sit around and let my disease do its thing. This battle was getting the best of me. I was in the midst of my sophomore year while all of this was happening.
High school is already hard enough. This is a time where adolescents try to find their place in the world. I certainly didn’t know mine. I spent my entire life shying away from girls and socializing in general. I had a group of friends, but I wasn’t the type to start conversations or make the first move. Now I had to deal with regular teenager nonsense on top of the nonsense going on with my body. My clothing options limited me to dark, loose-fitting sweatpants and t-shirts. Girls weren’t rushing my way, to say the least. I've never met anyone with the same disease, so I felt very alone. I was fortunate enough to have a girl who comforted me in the early stages, but once that relationship dissolved it became tougher experience. My friends and family also did their best to support me, but none of them understood what I was going through. This situation wasn’t something I could easily talk about because of how much it made me depressed. School wasn’t helping either. I had to take a gym class to graduate. Cool. I couldn’t do that, so the school allowed me to take an “alternative gym class.” During this period, I sat in the guidance counselor’s office, read outdated articles about physical activity, and took tests on those articles. It was a joke, but I had to do it. Luckily I made friends with the counselor’s assistants, so that made me feel less of an outcast. About halfway into the school year, I began taking drugs that were supposedly a method of bringing my disease into remission.
I wanted to try this drug, but my doctor was nervous because suicidal thoughts were one of the main side effects. Awesome. That’s exactly what I needed. I don’t remember ever having suicidal thoughts, but I was certainly becoming more depressed. As I mentioned, I mostly stayed away from social situations, but that became increasingly difficult as the year went on. I was very self-conscious about my situation, so I had no intention of attending pool parties or the beach. Fun fact: you get invited to a lot of these events when you’re younger. I didn’t want to explain to everyone that I couldn’t do certain activities. I always had this fear running through the back of my head of how people would react. I did my best to stay an outside viewer and not a participator. I watched my friends experience things I wish I could have done. I think over time I developed a soft spot for high school movies because it depicted a life that I never had. I didn’t want to hide this part of my life from everyone, but I found the more I talked about it the more depressed I became. So, I stopped talking about it.
I had lived with HS for about eight months before I started working at my local theater. I planned on not telling anyone about my situation. I didn’t want to be treated different or seen as the sick kid who can’t do anything. I wanted to be liked for who I was, and I felt knowledge of my disease would alter everyone's perspective. I know that sounds silly, but it was a perfectly plausible thought when I was 16. Luckily the job wasn’t very demanding and I was capable of completing the work. Later I found another issue with my body that I wasn’t aware of before. I developed what’s known as “frozen shoulder.” Basically, I couldn’t lift my arms over my head. I tried my best not to move my arms due to the pain from the wounds, but that became the cause of my “frozen shoulders.” My doctor wrote me a prescription for physical therapy to tackle this issue. Every day was extremely painful due to the wounds from the disease along with muscle pain. Both of those types of pains are not something I wish upon anybody. It’s some of the worst I’ve ever experienced. I continued therapy for months and made little progress. I knew that I needed to find a way to take more control of my situation, so I began lifting weights on my own time. I continued working on my physique and treating my wounds as best I could. The road wasn’t easy, but I continuously pushed myself. I took little steps at the gym until I felt comfortable enough taking bigger ones. My work eventually paid off as my disease went into remission during my senior year of high school and I also regained all the mobility in my shoulders. “Hooray,” I thought to myself. I could finally go back to my old life with a few adjustments. I came to learn that couldn’t be further from the truth.
A lot of my friends stopped skateboarding and moved on to other things. That was one of the hardest moments in my life I’ve had to come to terms with. It was one of the few activities that always brought us together. I know that probably sounds dumb, but when I look back I realized that was the beginning of the end of my adolescence. I spent the last two years in and out of hospitals, doctor’s offices, and staying at home. It was only two years, but it was two crucial years of being a teenager. We’re only given one chance to experience that time in our lives, and I missed it. I had to grow up early to deal with my disease. That kind of sucked. I had to learn to move on from those missed experiences, and it wasn’t easy. Another harsh reality I had to come to terms with is that my disease is incurable. I could very well go through this entire experience again. I made a promise to myself that I would never let it take over my life if it happened. I wanted to live in good physical health to help counter the bad mental health that I still battle today. I wanted to follow my dream of being a filmmaker. The phrase is extremely clichéd, but we only have one life to live. I’ll never forget a conversation I had with my physical therapists. I had always expressed to them that I wanted to make films. They felt this experience would encourage me to find a profession so I could help others in a similar situation. I told them that making films would be my way of helping people. I want my stories to inspire. Stories have always inspired me, and I wanted to give that gift back. My life was almost taken early, so I’ve been making damn sure to make the best of everything while I’m here. That was almost 10 years ago, and I still preach that philosophy today.
Some of you are probably wondering why I’m writing about this today. Something I’ve feared for the last 10 years has finally come true. My disease is looking for a sequel and has come back with a vengeance. After coming home from my Las Vegas vacation my legs began reacting similarly to what happened at the beginning of this story. Once again I didn’t think anything of it. Over the years I would have minor outbreaks occasionally, but nothing compared to what I have dealt with for the last couple of months. I have a giant hole in my leg and arm giving me hell daily. It hasn’t been an easy time dealing with it mentally or physically. I’m already under an incredible amount of stress with making my first feature film. Combining those two stresses together makes for a recipe for disaster. I write this because I wanted to remind myself that I’m not going back to how things were when I was first diagnosed. I have too much going on in my life to let something like this deter me from my goals. Everyone has a battle to fight every day. Some battles are harder than others, but everyone’s battles should be heard. A person should never make the assumption that someone is “okay” simply by his or her appearance or what he or she says. People only heard or saw what I wanted them to. I know others have the same struggle. I do more knowing that I have the support of a community that wants to see me succeed. I hope to do that for those who feel like they don’t have that same support. I viewed my disease as a weakness for years, but it’s actually made me into the person who I am today. We all have a path. You can either choose to let those obstacles drive you away from that path, or use it in your favor to make you a stronger person. Today, I’m doing the latter.