How it all began

 New Years is a time of reflecting on the past, and looking towards the future. For many, its a time of resolutions, ways you can learn from the year to grow for the coming years, but for those of us who are stuck, trapped in diseased limitations, it can be a really shitty time of year.

            Looking back on these past years, I can’t stop thinking about how they changed me. How different I see my life now, my future, my daily activity.  I also can’t help thinking about what has really taken place over the last three years. When you’re in a trauma as deep as inescapable pain and fear, it’s hard to really take toll of it. Its only when you’re on the other side, or finally feel like you’re getting there, that you can look back at what has happened. That’s what I’m trying to do now, but it’s really hard to look back at your old self, knowing that you will never be that way again, and having to come to grips with the immense tragedy that ripped your life apart.  I’ve tried to write the whole story down, but it’s hard. I can’t remember most of the first year and the rest is easier to forget than dwell on. But it’s important to pay attention to trauma, to hold it in your hand and know its presence, or else it will grow and spread inside of you like tree roots.

            I can remember having this weird, awful, recurring sickness since about my freshman/sophomore year at Colgate.  I would develop a really high fever, my lymph nodes would swell to the point of golf balls cutting into my trachea, and I would just be exhausted. Every time I got this, I would go to the doctor and they would test me for mono, strep and all that, and every time, it would all be negative.  After a few days, it would go away, and I’d be back to normal.

            Unfortunately, in October of 2017, that sickness came back, but much, much worse. My lymph nodes were so swollen that you could see them, like gills, bursting out of my neck. I couldn’t drink, eat, or speak because they were cutting so deeply into the sides of my throat. My head was spinning from disorientation, splitting headache and a 105 fever. I felt like every muscle and bone in my body were full of lead and I simply could not move. When my dad took me to the doctor, they gave me a steroid shot because of how high the fever was, they were afraid I was going to get brain damage and WOW did it hurt. It may have been one of the worst parts of the day, I was already in so much pain, when the shot when into my hip I was screaming and writhing around on the hospital bed, disoriented and throbbing. The doctor ran the usual tests and sent me home once the medicine had kicked in.  The next couple days I started to feel a little better from a step-type perspective; my lymph nodes went down a little and my fever plateaued at about 102.  But something was still off, I couldn’t shake the exhaustion, and as the days progressed I began to develop more, terrifying symptoms.  

Around this time, Spock (my mom) took me to a healing/spa center to try to help me recover in a peaceful setting.  I will always remember this trip as the moment when we really started to realize something was terribly, seriously wrong. Every day there were yoga classes, meditations, and workouts that I would usually jump all over in excitement, but just the thought of attending one was daunting. My body felt like it was failing me. There will never be words to describe the feeling of looking at your legs saying ‘okay, lets walk now’ and your legs simply refusing you. Walking from our room to breakfast was enough for me, I would be panting and aching by the time I sat down, wishing I had just stayed in bed. Every night we would have to leave dinner early because I just couldn’t sit at the table anymore, and we would go back to our room and watch a movie. I found myself to the point of exhaustion where I didn’t even care what movie we watched I just wanted to lay down. We would pick one and I wouldn’t be able to follow it, I would be slipping in and out of true consciousness, a symptom I would learn very well.

I can vividly remember my mom calling dad to try to explain to him what was going on, but it was just so hard to put into words what this sickness was becoming, I simply wasn’t myself anymore at all.  My parents were terrified. We decided to call a NP who I had interned for two summers before to ask for her help. We had finally recognized that whatever was going on was more than just a flu, and Carolyn- the most angelic physician- was known for taking weird, complex patients.  She always digs deeper to find what is truly hurting someone, and she will not give up until she does. I knew she would figure out whatever was going on her deeper level than just strep and mono tests, so when I got to LabCorp with 28 viles of blood to be drawn, I wasn’t very surprised.  But I did pass out for the first (and only!) time getting blood take- it was a lot of blood.  She was testing me for the works; everything from EBV to inflammatory markers to genetic mutations to Rocky Mountain Spotted Fever, but she said from the start that it sounded a lot like Lyme. After having worked with her for a summer of Lyme patients with pace makers and lesions in their brain, I was praying it was not.  But we had to wait for the tests to come back.

            We got home and I still wasn’t right, but I wanted to try to go back to school.  I was feeling, by conventional medicine, a little better, so I thought maybe if I got back to school and into my routine the rest would go away.  I will always remember not being able to make it back home from class, I simply could not walk.  I stopped multiple times on the way down to just sit and breathe, feeling like all my muscles in my legs were failing.  I could not breathe, I was gasping every second and feeling like no oxygen was coming in.  I had taken a run less than a week later, and now I was gasping for air walking down a hill. By the time I finally made it back and into my bed, I began to sob in a mix of panic and pain. It felt like every inch of my body was being stabbed with tiny needles and my bones were splintering beneath.  I was spinning, I couldn’t think straight, and every single inch of my body was in pain and discomfort.

There will never be words to describe what this feeling is like- to be trapped inside of your body as it begins to destroy you- you know, instinctively, that something is very, very wrong, but you cannot escape. 

            I called Carolyn in a panic, trying to explain what I was feeling and just begging her to tell me what was wrong so it would go away.  If she said eating a plate full of poisonous snakes would make it stop, I honestly would have in a heartbeat. She had just gotten in my preliminary blood results, and my ASO titer- an inflammatory marker known for strep, rheumatoid arthritis, and other autoimmune things- was the highest she had ever seen.  I’m not talking just a little off, I’m talking the range is 20-50 and I was 800.  As terrifying of a moment as this was, I remember taking a sigh of relief as she told me that something was definitely wrong, and I should return home immediately.  Sometimes, when you feel this sick and terrified, having some answer, regardless of how scary, is a comfort. It was clear I couldn’t even drive myself, I was so exhausted; my eyes couldn’t concentrate for long enough, I would become dizzy and disoriented, even as a passenger the experience would be horrible and exhausting. My mom drove the hour and a half both ways and came and got me, and she drove me straight to Carolyn.  We still hadn’t gotten the rest of the results back, but it was clear that something was very wrong. Carolyn still talks about the way I looked when I walked in the door that day, huge bags under my eyes and barely able to walk or speak from fatigue. She recalls it as the moment she knew this was going to be something very serious. She did a thorough exam and find that my heart had suddenly developed an irregular beat- different than the one she had heard just days before.  Given my symptoms, especially the extreme shortness of breath and inflammatory titer, Carolyn was worried and put me on a heart monitor. I was sent home with a terrifying machine attached to my chest, just waiting for something to go wrong, remembering the Lyme patient Carolyn and I had whose heart failed from the disease.  

This was the start of extreme paranoia about my death that has plagued me ever sense. 

The next few days passed in a haze of constant pain, fear, mental fog, exhaustion and just all together a state separated from reality. At some point, I got the call from Carolyn: it was Lyme. Not only that though- I also was positive for Epstein Barr virus, chronic fatigue syndrome markers, hashimotos, a rare form of strep, the MTHFR genetic mutation, autoimmune markers, and some of the highest inflammation titers she had ever seen. It was the beginning of what was going to be the longest, hardest, most heart wrenching years of my life.

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