Down With The Sickness

Wah-ah-ah-ah

CW: self-harm, suicidality, illness, eating disorder

Sleep away summer camp was a dream. I was popular, there were no rules, it was eight weeks of pure debauchery.

People liked me. I was given a secret award called Shaniqua, which took the form of a plastic lawn flamingo. The days were long. The weeks were short. I’d go skinny dipping with my friends and sneak out at night to make out with boys.

My last year though, I started to notice that I was tired all the time. I would fall asleep while hanging out with my friends, my arm draped over my eyes to block the light. Conversations were difficult to follow and I couldn’t remember important facts. I had a rash on my inner thigh that I attributed to chub rub.

Now I know it was a tick bite.

I ignored it, as I tend to do (the pile of laundry next to me has sat unfolded for days). Only after another three tortuous years was I diagnosed with Lyme Disease. Between the rash and the diagnosis is a black hole.

I have a great memory. Sometimes I even have to pretend that I don’t remember things so as not to come off as creepy.

“Didn’t you, like, get your wallet stolen in Paris when you were 14 or something?”

Knowing very well that they did.

But those three years are just nothing. Either side is as clear as day, the edges are a little hazy, but in between is darkness.

I’ve been told a lot of stories about that time. I was apparently erratic and out of control. My mom once found me at the end of an old rotting dock in my hometown on Long Island in the dead of winter, staring blankly into the depths of the bay. One wrong move and the wood beneath me would disintegrate and plunge me into the freezing water. I would leave my house in the middle of the night and take the train into the city to do god knows what. I have a few pictures of basements and cocaine, but no memory of any of it.

It turns out my brain was inflamed. The bacteria had crossed the blood-brain barrier and I had encephalitis.

The next two years were spent in hospitals and doctor’s offices. I even briefly lived in a Hilton Express in Westchester, New York to be closer to one of those doctors.

It was, and is, the loneliest I have ever been in my life.

My days would play out as follows:

-       Wake up at 1 pm

-       Take the Hilton shuttle to the doctor’s office

-       Sit in a big comfy armchair as I received IV antibiotics

• In hindsight, I was almost certainly allergic to the antibiotics. Every single time it felt like fire was coursing through my veins. I was swollen, hot, and itchy. At the time, I thought that was how everyone felt.

-       Return to the hotel

-       Eat

-       Sleep

-       Repeat

Depression was already my natural inclination. Nearly everyone in my family suffers from it in some way, whether they self-medicate with drugs, alcohol, or staying busy. I started self-harming at about 12 by dragging my knuckles against the brick patio until they were raw and bloody. Eventually that turned into cutting and I added purging to the mix for good measure. Explaining my eating disorder will have to wait for another day.

I soon moved in with my Aunt Noreen in Chatham, NJ. It was the only place I could find a nurse willing to stick me with a needle every day. First, I tried two separate PICC lines (a catheter placed in your arm to self-administer medication). But I kept scratching them out of my arms in my sleep because I was allergic to those, as well. Using needles daily runs the risk of damaging your veins, but at that point I didn’t care in the slightest.

The treatment was working.

Living with my aunt and her husband was lonely and difficult. I felt like an intruder in their home. One night at dinner, I sat at the head of the table. My uncle decided that was unacceptable. He was the man of the house, HE sat at the head of the table.

Finally, I found a nurse in New York City. James, if you’re out there, I love you! He was a millennial gay man who gave me back a little bit of my humanity. He thought I was funny and would laugh at all my jokes, but he also knew I was suffering. I lived alone in a gorgeous studio with a view of the Hudson by Columbus Circle in Manhattan. I cried at least once a day.

Since childhood, I dreamed of college. A place I could read and talk a lot, hang out with friends 24/7, and get away from my house? It sounded like heaven.

I tried to go to college. It was a disaster. I could barely make it to class, let alone make friends. One girl absolutely hated me. She somehow saw me as competition despite my circumstances that I so desperately tried to hide.

My mental health was at rock bottom. I was taking 12 pills twice a day of just psychiatric medication. So I independently made the decision to start from scratch and go off all my meds.

If you haven’t already guessed, that was a terrible idea. I do not recommend it to anyone.

The most interesting, and funny, part was the immediate spike in my sex drive. I had been on an SSRI since the age of 13. As some of you might already know, SSRIs can make it very difficult to, um, ‘finish.’ All of a sudden, that was no longer an issue. I would masturbate an average of seven times a day if I had to guess, maybe more.

However, my emotional state was dire. Almost every night I walked to the 59^th Street Bridge and try to work up the nerve to jump. I never did.

About 3 months into being medication-free, my mom and Uncle Brian (a father to me) started to notice just how bad things were. One day I started to sob and couldn’t stop. I cried for 3 days straight until Brian took me to the hospital.

And thus began my mental health journey. For the next 3 years, I was in and out of psych wards, residentials, and intensive outpatient programs. I attempted suicide a few times in between.

People, most often men, occasionally ask me if I really wanted to die. I always said yes. The question was accusatory, as if not really wanting to die made it attention-seeking behavior and therefore invalid.

The reality is that I was seeking attention.

It used to be such a source of shame until I recognized that wanting to be loved, to be saved, is the epitome of being human.

Sometimes I wished I had cancer. At least then people would understand how bad it was. I’m ashamed of that too.

I actually made quite a few friends at mental hospitals. For the first time, I didn’t feel so utterly alone. I wasn’t the only one who felt completely hopeless. Only a couple of those friends are still in my life, but I am forever grateful to everyone who loved me, and who I loved.

At age 22, after several years of DBT (Dialectical Behavioral Therapy), ECT (Electroconvulsive Therapy), and talk therapy, I still wanted to kill myself. I knew at my core that it was how I was going to die. It was just a matter of when.

Then along came a new experimental treatment: ketamine.

I was an ideal candidate: a young female with a long history of suicidality that began in childhood.

There are many things that contributed to saving my life, but my family and ketamine far outweigh the rest. Ketamine works fast. Within a month I was 80% cured. With a year, 99%. Before ketamine, I thought about suicide at least once an hour, with a longing attached to it. After finishing the course of treatment, I now hardly think about it at all and when I do it’s a passing thought, with no yearning. I am more often curious about why it’s coming up at that time and place instead of wanting to follow through.

I think of my life in two eras: BK (before ketamine) and AK (after ketamine). I also believe it came at the perfect time. I had years of therapeutic training that allowed me to get the most out of treatment.

This is all just a small slice of my life. There have also been many moments of joy along the way, situated right beside the heartache.

I am now 26, living a life that I love. It’s still hard some days, but not ever nearly as hard as it once was. I never imagined that this was possible or that it could happen to me. I have also been very lucky. My family stood by and never gave up on me, even when I had.

I’m still trying to let go of my ‘sick’ identity. My mom still worries constantly. But I’m a different person, a stronger person. Every day I’m more confident in my ability to handle whatever comes my way.

That young girl who fell asleep with her arm draped over her eyes to block the light has finally woken up and, for the first time in much too long, I’m excited to see what the future holds.