Updated: Jul 27, 2020
Hello! Welcome to my new blog. Here, you’ll find the most detailed, uncensored content about my life - nothing is off limits! You can expect to read more about my experience from being locked-in, medical complications, insights about opiates & sobriety, and navigating the US healthcare system.
In early 2017, I was working full-time as a chef and living a fast lifestyle. Doing and selling drugs, partying at night with my friends at house parties, night clubs, live music events, casinos, and luxury hotels. I became addicted to smoking heroin and used every day, even when I was at work or out for a family dinner. I would sneak off to the bathroom every hour to freebase heroin off of tin foil to remain high and not become dope sick. Dope sickness is when someone is addicted to any drug and becomes dependent on it. When dealing with heroin, it’s a different type of animal. You become so addicted, you need it in your everyday life in order to function to the point you become incredibly sick without it. The symptoms of dope sickness are depression, anxiety, irritability, nausea, restlessness, eyes watering, fatigue, rapid sneezing, feelings of impending doom, mind racing, and hyper-emotion. It feels so terrible; you just cannot function, so you’re willing to do anything and everything in your power to get your next fix to make all these symptoms go away. As soon as you get your next hit, the symptoms immediately go away until the process repeats itself several hours later.
Approximately one week before my diagnosis, my balance, depth perception, voice quality, driving, and thinking all began to rapidly decline. Looking back to around the time of April 2017, I began to notice very subtle differences in my driving and reaction time, but I chalked it up to being tired or dope sick. I now know this was the beginning phase of Acute Toxic Progressive Leukoencephalopathy.
Three days before my diagnosis, I woke up late for work and had to rush out the door. In addition to everything a normal person would do in the morning to get ready, my routine typically consisted of a twenty minute smoking session to ensure that I felt “normal”. Since I had to rush out the door, I planned on doing this while speeding to work in my car. I know that this sounds crazy and is extremely unsafe (please don't do this), but after doing it for so many years, I became quite skilled at driving under the influence. Speeding down Route 9 from Worcester, Massachusetts to Westborough, Massachusetts, I caught myself swerving. I said to myself, “Come on Jake, what the fuck is going on? Pull yourself together!” As I took a hit of heroin, I looked in my rear view mirror and saw the blue lights. As I pulled the car to the side of the road, I tried to put away the drugs. Typically, this is something I would have no problem doing. But on this day, I couldn’t seem to get it together. It was like my brain was disconnecting from my body and I couldn't control my movements. This is when I knew something was not right. Looking back, I was already brain damaged, but I was also in denial and didn’t want to think anything was wrong. I crumbled the tin foil into a little ball and put it in between the seats along with my smoking pen, then I took my bag of heroin and tried to place it in the center console. The officer was approaching the car and even though I knew that I needed to quickly close the console, my brain would not allow it. I was confused and frozen. He came to the window but before he asked for my license and registration he asked, “What the hell are you doing?”
I was frantically looking for my wallet and the officer noticed the paraphernalia in my center console. I was still fixated on finding my wallet, looking everywhere. I knew what I was doing could appear erratic and probably made the officer nervous. He kept repeating, “Stop reaching around!” but I couldn't stop my irregular movements. I was still hyper focused on my wallet, which was clearly not important in this moment. He pulled out his gun, pointed it at me, and screamed, “Stop now! I will shoot you!”
I had a vision of an evening news story with a helicopter flying above my brown Lexus reporting on a twenty eight year old male shot by police in Shrewsberry, Massachusetts. I couldn't understand my own actions, nothing made sense. I eventually stopped moving around and remained still. He continued to point his gun at me and waited for back up to arrive. In a matter of minutes, eight police cruisers showed up in marked and unmarked vehicles. They quickly swarmed my car with guns drawn and aggressively pulled me out. I was handcuffed, put into a police SUV, and transported to the station. I had an internal conversation with myself and thought, “What the fuck is wrong with you, Jake? Now you're going to miss work, no one will be there to open. Why couldn't just have played it cool like the other 150 times you interacted with the cops?"
I was charged with possession of Class A (heroin) and Class B (Oxycodone) substances, speeding, reckless driving, and operating a vehicle under the influence. Back at the police station, I was handcuffed to the wall in the booking room. I was talking to the officers and said to them, “My voice sounds completely different.” They had no idea what I was talking about because they didn’t know me, and they certainly assumed I was just high. Eventually, they took the handcuffs off of me and took me to the holding cell where I waited for the bail bondsman. Lying there in the cell, I thought about my job, going to court on Monday, and began to feel dope sick.
After bailing myself out jail, my first order of business was to get more heroin from my friend. I started walking down the road when my dad pulled up. I attempted to open the door and sit in the front seat, but my balance was totally off and I fell into the car. He gave me a ride to my friends house. Stumbling up the stairs, my friends noticed something was different about me. "Why are you walking like that? What's wrong with your voice?" they asked. "Ugh, I don't even know..." I got the drugs and left.
For the next few days, all of my symptoms continued to get worse. It got to the point that I couldn’t even walk down the hall without leaning against the wall for support. My symptoms got so bad that my family noticed and mentioned, "It's only 10am in the morning. Are you drunk? You are going to the hospital, we are calling the ambulance." I was upset because I knew this would mean I could no longer get high, but deep down I knew this was necessary. I was admitted with stroke-like symptoms to the Emergency Department at UMass Memorial Hospital in Worcester, Massachusetts. I was able to demonstrate some things that made them initially believe they could send me home, but once they heard a voicemail of my normal voice, they knew something was really wrong. I was completely honest about my drug use and explained my daily routine of smoking heroin off of tinfoil multiple times per day. Since that moment, my life would never be the same.
After many tests, on May 25, 2017, I was diagnosed with Acute Toxic Progressive Stage 1 Leukoencephalopathy, also known as 'chasing the dragon syndrome'. The doctors gave me roughly six months to live with the slight possibility of survival. Survival was to include minimal-to-no functionality in my body. Within 8 months of my diagnosis, I was placed on hospice. During that time, I experienced a comatose state known as Locked-In Syndrome, where I was fully aware and could hear everything, but could not move or communicate at all, except involuntary vertical eye movements. It was a very surreal, terrifying experience because everyone thought I was "a vegetable" and would talk around me as if I couldn't hear them, but I could. I didn't know if I'd ever be able to communicate again, or if anyone would notice I was still "in there." It was a very hopeless time.
On July 4, 2018, I heard fireworks at MassGeneral Hospital. I was unable to look out the window because I was still in a Locked-In state, but I could envision myself looking over the Charles River watching the Boston fireworks show as I had done many time in the past. I kept saying to myself "There is no way I will live my life like this. I will get better." Around July 5, 2018, I began blinking my eyes. By July 10, I began communicating by minimally sticking out my tongue for yes and blinking my eyes for no. Because of this miraculous turn of events, I managed to stay positive, keeping a healing mantra in my mind “I will recover. I will do this and get better.” I said these words over and over and over again. And I continue to repeat these words, to this day.
This blog is part of my recovery. Join me in celebrating all my recovery anniversaries and follow along as I document my new milestones!