How It Feels Watching My Peers Graduate — Knowing I Can't Because of Lyme Disease

I cry every time I hear “Pomp and Circumstance.”

The way some people get misty-eyed watching soldier homecoming videos, that’s me when it comes to graduations. All it take is the first few bars of the traditional commencement march to bring tears to my eyes. Whether I know someone in the processional or not, a feeling of melancholy lodges in the pit of my stomach.

This is partly due to who I am as a person. I am incredibly sentimental and quick to show emotion. I will just as soon shed a tear watching a feel good story on the news as I am when something upsetting is to befall me. Crying is an activity I partake in quite regularly, accompanying emotions of sadness, but also just as soon joy and anger. I keep a list of movies that have made me cry, an index that includes both the expected…ahem “Titanic,” and the teen favorite “Aquamarine.”

But I think the main reason for my emotional response to graduations is that they serve as a reminder of an experience I have not and will not get; something else that chronic illness has taken away from me. And that is the opportunity to receive a traditional college education and experience.

Growing up, I always assumed I would go to college and I recognize that I am incredibly lucky to have lived with this presumption. It is an expectation I now realize I took for granted. My parents had the means to begin a savings fund for me the minute they learned they were expecting. I lived the majority of my life in a privileged New England town, one where the local high school was ranked 5th in the state, the average SAT score was 1290 and 98% of students graduated in four years and went on to university. Here, college was always talked about as a fact and guaranteed next step, not a possibility, and so as a result I always assumed that I would go on to pursue a higher education.

For someone whose high school experience was less than enjoyable, filled with bullying, sexual harassment and a stressful, competitive environment that placed test scores above student mental health, college also became this utopia in my mind. It was a light at the end of the tunnel, a place where I could expand my horizons, meet new people and be exposed to a different worldview than the one that had surrounded me for 18 years. After becoming disenchanted with education during middle and high school — where my natural curiosity was replaced with stress and an indifference to what I was studying — college would be my chance to fall in love with learning again.

This is why it was so devastating for me when illness took this chance away. Even more so because I was robbed of it the moment it was supposed to begin. In September 2015, I moved into my dorm at College of the Atlantic in Bar Harbor, Maine. Like everyone else, I got my student ID, attended orientation and registered for my classes. But unlike my peers, something more sinister was afoot. There was a time bomb unknowingly ticking within my body, only moments away from being set off. For within weeks, a bad batch of cosmic karma and a series of very unfortunate events left me sicker than I’d ever been in my life.

First came an accidental gluten exposure, a substance to which I’m intolerant. Next was a virus that quickly spread around my dorm of 27 people, a bout that for most was resolved in two days, but for me took two weeks. I later ended up dehydrated and made two trips to the emergency room to receive fluids before being sent back to school.

I used these events as excuses, trying to explain away my symptoms. I ignored the fact that I was becoming slower, weaker, as my body reacted to the stress. Each day was just a fight to make it through, feeling as though I was slightly removed from my life instead of fully participating. I told myself if I just ignored it, faked it until I made it, then it would all turn out OK.

But soon there was no denying how I was feeling. My head was constantly filled with cotton fuzz, making it impossible to read, write or even think. And when I would try to study, I would read the same line of my textbook over and over but was unable to comprehend a word. When I walked I would stumble and weave like I was slightly drunk, yet never touched any alcohol. My body was overcome with bone crushing fatigue and craved sleep, no matter how much rest I had the night before. Every inch of me ached.

I kept trudging through the days, each one feeling like a week. But soon, even the bare minimum of activity was impossible. I was sleeping through classes, wasn’t leaving my dorm room and letting my course work pile up and it wasn’t long before I was completely debilitated. Something was obviously, seriously wrong. This was not the college experience I had been dreaming of. So with no choice, just 19 days into my freshman semester, I took a medical leave of absence and returned home. Three months and a host of new symptoms later, I was diagnosed with Lyme disease and two coinfections, Babesia and Bartonella.

That was December 2015. The last three and a half years have been the most difficult, and physically and emotionally painful of my life as that initial diagnosis has now grown to include two autoimmune conditions, mast cell activation syndrome and chronic inflammatory demyelinating polyneuropathy, as well as intense struggles with my mental health and post-traumatic stress disorder.

For the past 1,231 days, I have lived at home, seeing countless doctors, having numerous procedures and tests in the hopes of finding an answer to what is wrong with me; desperately looking for a solution. During this time, I’ve tried almost anything and everything in an attempt to get better. I lived with a PICC line in my arm for six months. I’ve received monthly IV treatments for the past two years with no end in sight. I give myself daily subcutaneous injections and swallow more than 40 pills a day, 11 of which are prescription. Often, it takes all my time and energy just to make it through each day. All because of a tick-bite, who knows when.

And in all this time, I have not returned to school, although heaven knows I’ve tried. In nearly four years, I have applied to college four different times to three different schools. I’ve deferred matriculation six times. I’ve tried both traditional and online formats. Once I withdrew before orientation, another time after one day and another after one week of classes. My inability to receive a higher education is not for a lack of wanting or trying.

These persistent attempts at returning to college came as I struggled to accept one painful truth — Lyme has fundamentally changed my brain. It has permanently altered the way I process information and what my mind is capable of doing. And much to my dismay, it is a shift that is not compatible with college level reading, writing and due dates, as well the university lifestyle in general. No matter how much I wish this wasn’t the case.

During this time, I have had to go through a sort of grieving process, coming to terms with the fact that my life is not following the path I thought it would and that I have lost the opportunity to fulfill my dream. It is a seemingly endless procedure, one I am still working through and every time I think I’ve come out on the other side, I still have more to go. It is immensely difficult to admit to myself, and to others, that my dream has been ripped away. Over the course of my life, I became so caught up in this idea of being “normal” and doing things the way others were. The fact that my illness has resulted in my inability to attend school, to experience life the way it is “supposed” to be, has left me feeling embarrassed, ashamed and also incredibly disappointed. In many ways, I feel like a failure.

What has made these years even harder for me is having to watch as my peers have the experiences I won’t have. Being on the outside looking in left me feeling jealous and drove a wedge between me and my friends. Because not only was I envious of their adventures, but I couldn’t relate. And in relation to their experiences, mine just couldn’t compare.

Because while I was being rushed to the emergency room with tachycardia, they were pledging sororities. When they were on spring break, I was on an operating room table having a peripheral catheter inserted into my arm. During my first EEG test, my peers were becoming RAs. And while they were studying abroad, I was laying in bed having another IVIg treatment.

This is why this time of year is so difficult for me and why graduation ceremonies evoke such a powerful, emotional response. They serve as another painful reminder of a fact of which I’m acutely aware — my life has not become what I thought it would be. I have not had the experiences I thought I would and so desperately wanted. I haven’t gone to college and probably never will.

Another season of seemingly endless commencement ceremonies began in May for universities across the country. And like every year, it was hard. But what makes this year different and even more difficult is that I should be a part of the class of 2019. The individuals walking across the stage and moving their tassels from right to left won’t just be nameless faces, but my immediate peers. They are the people I went to kindergarten with and finished high school with. They are one-time crushes and old friends. The people that in another life, an alternate universe, would have been my college classmates, sorority sisters and friends. And I should be among them.

And so this year when that solemn graduation march begins to play and those individuals clad in cap and gown walk, the tears will fall a little faster and a lot harder as I come to this realization:

I won’t get a diploma for making it through these last four years. But that shouldn’t make it any less of an accomplishment. No, I don’t have much to show for this time in my life. Except for the fact that I’m still alive and I’m still fighting. And I guess that is something.