I Remember

At times, this illness is a blur, a span of nearly three years that feels as if it all happened within the blink of an eye. But at other times, the painful memories consume you. Those moments etched in your memory, likely forever, stretching out time. All of us were much different people before we were struck down with this invader, this alien that maneuvers itself and infiltrates every part of your being. It can leave you handicapped emotionally, mentally, and physically all at once. It will rob you of your soul, and for some, it becomes too much of a burden to even endure. Somehow many of us overcome it all. Many will say they fought it off with iron fists slamming into the enemy. An enemy that is invisible to everyone else, but yourself. I believe them, but I never really fought, I just merely hung on. Somehow I got here, three years later, and I wouldn't recognize the person I was back then. I'm not better, I'm not worse, I'm different. I will forever carry the memories of being at the edge. I will forever remember things that I simply don't want to remember. Maybe, I need to remember them. I don't know.

I remember the pain. I remember the precise moment the pain entered my life. I remember how it felt, it was like two men grabbing my intestines from both ends and twisting them repeatedly with all their strength, as if the end goal were to rip it all apart. It wasn't intermittent, it was constant, never a moment's rest. When it set in I told myself this was temporary. It lasted for two more years. 

I remember the fatigue. I remember suddenly feeling so tired that I collapsed out of my chair. It happened weeks after the stomach pain set in. I thought nothing could render your life more miserable than the pain that had become part of my normal existence, I was wrong. I remember nearly fainting while going for a jog, trying to understand the new state of my body. I remember a month later, the fatigue increasing to the point where my bed became the only place I would exist for that next year. I remember being too tired to even get out and make my own meals. The act of simply walking from my room to the kitchen had transformed from a normal task, to feeling like I was about climb a mountain.

I remember the deterioration. I remember the scale in my room. I remember the numbers dropping as if it were a countdown to something. 185, 180, 165, 150, 140, 130. I remember looking in the mirror and seeing an unfamiliar gray face staring back with its ribs protruding out of him. I remember asking how I got here, in such a short time. I remember looking up to a god I had never spoken to before, and simply asked, "Why?"

Right before I became ill at 185 Lbs.

At 145 Lbs only 9 months later. Still enduring grueling treatments.

 I remember the doctors. Each and every one. I remember when they initially thought I had HIV, then Chron's, then IBS, I could continue on, but the list wouldn't stop for some time. I remember after almost a year being told there was nothing it could be but cancer. Hodgkins Lymphoma. I remember the elation I felt with this prognosis. I also recall the shock on people's faces when they could see the excitement in mine at the prospect of cancer. I felt like I was dying, at least now there was a chance I would get better. Life is all relative, no one wants cancer, but when you're suffering immensely every day, and someone tells you theres a possible solution, you can't help but feel joy. I remember the bone marrow biopsy, the spinal tap, the exams. I remember the doctor coming in and saying it was negative. I remember the words, "Your body is shutting down, we dont know why. Sorry." I remember being handed anti-depressants to help me through my "tough" situation. I remember breaking down into tears.

I remember the Lyme Diagnosis. I remember somehow finding the energy to leap out of my seat and give her the biggest hug I've ever given anyone. I now remember the look on her face, the half smile that spoke to her happiness but also to her fear that I had no idea what I was in for. I remember her telling me weeks later that I would've been better off with HIV, that the medical community was too far behind on Lyme. I remember the fear that had disappeared weeks earlier, suddenly creeping back in. I remember not getting better. I remember feeling like I was back at square one. I remember being hopeless.

I remember the deaths. The people who were too young to die, those that were once in my life, that suddenly weren't. I remember feeling guilty. I remember feeling worthless, I wasn't a good friend, I wasn't as good of a person as any of them. I remember feeling it should've been me, not them. I remember the calls to 1-800-SUICIDE. I remember thinking once again, how did I get here. I remember wanting to end it all, I remember the plans, I remember it all. I remember straggling into my car with all the fatigue, plotting plans, but then simply driving off to admit myself into a psychiatric clinic. "Not yet," I told myself. I had to hang on just a little bit longer.

I remember sitting in the psychiatric ward. Sitting in teal scrubs beside a man repeatedly talking to himself. I remember another man across the room tatted head to toe on the phone discussing it was another drug charge and he assaulted someone. I remember the staff looking at me as if I were vastly inferior to them. I remember agreeing. I remember meeting with the psychiatrist on staff. I remember her eyes filled with empathy, "You dont belong here. You're physically ill, not mentally. They need to figure out whats wrong with you. I really wish I could help." I remember going home, and I remember the worry that ensued within my family.

I remember learning about the stigma behind Lyme Disease. I remember realizing that most doctors thought the illness I was given, didn't exist. I had been duped by quack doctors or I was faking it. I remember the aggression and rage that began to rise within. I remember not understanding, "How could they ignore this, how could they let people suffer like this?" I remember telling friends who were aspiring medical students about my situation and the empathy they felt. I remember after going to classes, some of those same medical students suddenly telling me I was wrong. I should be ok by now, and if I'm not then it's something else. I remember realizing this was a vicious cycle, this wasn't going to end anytime soon.

I remember going to a medical facility called Envita out of desperation. I remember the weird treatments that were making me better. I remember the relief I felt as there may be a way out of this. I remember not questioning that they didn't record anything, and the success rates they'd given me were clearly false. I remember ignoring how uncomfortable I felt when it seemed like the staff felt as if their methods were the best and untouchable, all due to some higher calling from God, and were sent on a mission to make us better. I remember the narcissism in the man who ran it, I remember getting worse after suddenly getting better. I remember pleading with my doctor to help me and him stating, "I don't know." I remember him telling me that I had a spell cast upon me while I was working in Africa and I needed to use the power of Jesus and also get an exorcism if I ever hoped to be well. I remember clenching a fist and a fire burning throughout my body as I was prepared to launch myself at the man I had entrusted my life to for six months. I remember somehow collecting myself and walking out. I remember feeling like it was all over.

I remember the family I met at Envita who was gracious enough to offer their home in Virginia to me and a doctor who'd help me get well. I remember flying out, wondering if it was all worth it, I had endured enough. I remember sitting in a hyperbaric oxygen chamber, and recovering faster than I ever thought possible. I remember hitting a wall in my recovery that I couldn't get past soon after. But I also remember feeling human again, I remember the thoughts of ending it all finally disappearing. 

I remember meeting my girlfriend. I remember the feeling I felt within. My heart raced, my eyes stayed fixed on her. I didn't know exactly what to say. I remember being extremely nervous. I remember the connection that ensued, the feelings that had risen in me that I had never experienced before. I remember questioning it. I remember feeling its too good to be true, I remember the confusion. I remember spending time with someone who knew what I was going through, someone who had experienced it herself. I remember not feeling alone for the first time in years, I remember falling in love.

I remember seeing her healthy, vibrant as ever. I remember the jumping jacks in the room, and the smiles that never seemed to fade away. I also remember feeling her pain. I remember watching her slowly get worse as she didn't have the finances to stay on the medications she needed. I remember screaming to myself, "Why isn't our care covered under medical insurance." I watched her lose part of herself. I watched as I also lost a part of myself. I watched her deterioration as she withered under the fists of this illness. I remember feeling I'd rather it be me, not her. I remember realizing what it's like to care about someone more than yourself.

I remember feeling what it's like to be close to wellness, but not there yet. I remember the PTSD that's followed this destruction, the type that I thought was only reserved for those in the armed forces. I remember still being scared, but knowing that I'm with a new doctor in New York who's pushed me past that wall I hit and that I'll feel wellness soon enough. I remember being hardened by Lyme to the point that the diagnosis of Type 1 Diabetes hardly bothered me. If I could endure Lyme, than Diabetes would pale in comparison.

I remember the vast amount of friendships I lost. I remember feeling out of touch with others my age. I remember feeling like I was 19 and 80 at the same time, though I'm 23. I hadn't matured much after the point I became ill, but I've also been through more than someone should realistically go through in an entire lifetime. I remember feeling like I want to help those with this insidious disease, but I'm also afraid that my identity will always be tied into that guy that was sick. I remember wanting to be more than just my illness.

I remember all this not even being the worse part of this experience.

I remember hearing hundreds, even thousands of Lyme stories ten times worse than mine.

I remember sitting here, right now at this very moment, thinking when will the pain and suffering inflicted to all those with this illness ever stop. I remember thinking, "Life isn't fair."