Updated: Oct 13, 2021
On May 21, 2017 Jacob Haendel was driving to his job as a head chef at a private country club when he was pulled over for running a red light. He was arrested for smoking heroin while driving, but that was the least of his problems. Jacob’s brain had started disconnecting from his body. In 4 days he would be told that he has a rare progressive terminal disease from smoking heroin, the chance of survival was slim.
In 6 months toxic acute progressive leukoencephalopathy changed Jacob from an able-bodied person to being completely locked in. Unable to move or speak Jacob spent 6 months in his head thinking about his life, addictions and the possibility of a second chance.
This is Jacob’s story, in his own words. From the progression of his addiction, his incredible recovery and his second chance.
I’ve always had an addictive personality. I always enjoyed having a drink even when I was like 12. By 13 my friends and I would have a few drinks on friday or saturday nights, nothing hard core.
But it was the beginning of a problem.
By the time I was in 8th grade I smoked marijuana, that was very rare. By freshman year of high school I was smoking pretty much on a daily basis and I began to sell it. By 10th grade I would definitely be drinking every weekend, massive parties, beer pong, blunts, that kind of life. Around the end of the year I was starting to experiment with mushrooms. By 11th grade I was mixing alcohol, weed, mushrooms, acid.
And then I got my wisdom teeth out and i was in so much pain, I was prescribed percocet and it wasn’t doing anything. I had friends that I knew took pills but I was always against that, I always thought you guys are crazy, that’s not what I’m into. But I’m in throbbing pain so I think I’m going to call my friend and get one for pain relief. I wanted to use it as medicine. I asked him “what do I do with it?” and he told me how to smoke it.
I did it in my bedroom and from the first hit my pain went away, I also had insomnia and that night I had the best sleep of my life. I realized I really liked this stuff so I started buying one pill a week.
By my senior year I was doing them more than just on the weekends. It didn’t even cross my mind in high school that this was an issue. It was just social drinking and social drug use. There was a huge group of us who grew up together who would get in groups of like 25 and rotate smoking weed, drinking and smoking pills.
I had friends in all social circles, I would say it was even popular among the athletes. People you would never suspect they were doing this, it wasn’t an uncommon thing. After high school they made the pill tamper proof so you couldn’t smoke it, overnight everyone went to either Heroin or percocet.
I went to percocet, it was more of a daily use and I started experiencing what dope sickness was. In high school I never got sick like that. That’s when I realized I’m actually addicted to opioids and this is a problem. I went through periods where I couldn’t function without it, I knew that was really bad and I would think “I need to get off this”. I went through self detox probably over 100 times.
I would go through the worst of it for the first 5 days and then, with no triggers, I would go back. “I’m feeling better so I can do a little bit.” So whenever I was feeling better I would just go back to it and I started this horrible cycle. It wasn’t even conscious, the addiction was just that strong.
I knew it was a habit but, deep down I knew that there was no way I could continue this lifestyle forever. I knew I was addicted and needed serious help but part of me just didn’t want to, part of me was in denial. There was also the fact of “Look I can be high and go and socialize with my private golf club members and they have no idea. I’m making good money, I drive a nice car, I’m not that bad.” But deep down I knew I was.
One of my members was actually the Chief of Police, I would come out of the bathroom from smoking heroin and go right over to him and he had no idea. I started deteriorating about 3 years into it. My habit grew and by 2016 I was spending unbelievable money. I would buy $500 a day, sell some but I would do most. At first I wouldn’t put my paycheck into this stuff but I started spending my own money and it got bad. I was heading to the pawn shop to sell my things that I didn’t want to sell, or I would dip into my savings. I didn’t want to, but why not?
If someone had come to an NA meeting and spoken about how smoking heroin nearly killed them and changed their whole life and physical abilities I would definitely be reassessing everything.
I always said once I had a kid or reached 30 years old I would get clean. I’m not so sure the 30 year mark would have changed anything for me, I hope it would’ve. I do believe if I had a kid I would, I always knew I couldn’t live this life and raise a child. That would be so unfair and I wanted to be a good dad.
A lot of people think that the worst that can happen is you can OD and die, but there’s all this weird stuff in between that can happen. You can get sick and have a slow 5 year period of deteriorating. There’s just so much gray area it’s not just black and white.
May 21, 2017 I’m driving to work doing my daily smoking while driving, I know thats insane but it is what it is. I noticed my driving was off, I was swerving all over the road and normally I could smoke and drive without swerving. I ran a light and I got pulled over, I’d been pulled over while smoking before so I wasn’t too worried. I knew what I needed to do but my body was not listening. I thought that this was odd and I had no idea what was going on, I really knew that something was wrong.
The cop came to the window, I knew I needed to hide the drugs but my hands weren't moving. He sees the drugs and I’m arrested. In the holding room I was telling them that I wasn’t ok, but they didn’t care. I bailed myself out and it got progressively worse over the next 3 days.
My wife noticed and said ‘somethings wrong with you’ she kept accusing me of being drunk. She called an ambulance and my immediate thought was ‘I gotta get high’. I went to smoke in the bathroom, my hands weren't working and I spilled the whole bag but I got my one hit. On the way to the hospital they thought I was a stroke victim. I tell them about how I am addicted to smoking heroin and they order an emergency MRI. I’m thinking yeah this is odd, something is wrong but I never thought it would be what I heard the next day.
A team of doctors comes in and they say “We have some bad news. You have a very rare brain disease. It was caused by inhalation of toxins in your heroin. It is a terminal progressive disease meaning it will only get worse. There’s a small chance you can survive but it’s unlikely”
They told me the stages that would happen. They told me I would lose my ability to move, my voice, my ability to eat. Basically stage 3 is locked in syndrome. I actually said out loud “I’m fucked”.
My thought process was like, I did not envision my life to be like this all because of some stupid habit I had. I was sad, I was angry. I went through the emotions very fast hour by hour. And then I thought, I haven’t had any heroin in like 36 hours. I’m starting to feel withdrawals and I’m going to die anyways so I might as well get high. So I had a friend bring some to me in the hospital, they were very reluctant and asked if I really wanted to do this. I was just like “seriously whats the difference? I was just given a death sentence, it doesn’t matter”. I’m just smoking heroin in my hospital bed and a nurse walks in. I made no attempts to hide what I was doing, just nonchalantly smoking in my bed. Its insane.
The doctors told me “If you continue to smoke this shit you will die within a month. You need to reassess if you want a few months left with your family or if you just want to die.”
The doctors told me “If you continue to smoke this shit you will die within a month. You need to reassess if you want a few months left with your family or if you just want to die.” I thought a lot about that. I continued to get high until about 6pm and then I had an epiphany. I need to do this for me, I need to do this for my family but if anyone can fight this its me. I didn’t even know if I wanted to live like this, like who wants to live on a feeding tube bedridden forever? But I thought if anyone can defy the odds it will be me so i’m going to give this all I got.
I made the decision right there, I threw away the stuff, I threw away my smoking kit, I even threw away my cigarettes. Cigarettes were actually the hardest part, even harder than heroin. For 6 months I was fiending for a cigarette. May 26 2017 was my first day of sobriety and I've never even thought to go back. I made the conscious decision to stop for not just me, but my loved ones.
My first day of sobriety I could barely walk, it had already progressed so far. I needed 2 people with maximum assist to walk down the hall. Within 2 weeks I could maybe take a few steps. Within a month my voice was getting worse and I was in a wheelchair. Within a few months it was getting very difficult to even sit in a wheelchair.
By the 4th month I was essentially bedridden. I could only get up with a lot of help to occasionally go to the bathroom. I started to lose the ability to go to the bathroom, to eat, drink or even breathe on my own.
Eventually I was on life support essentially. I had every tube imaginable. Every invasive procedure, spinal taps I mean everything.
In late December I became locked in, I realized that I was no longer being acknowledged by hospital staff and it was kinda like I was in this hell.
6 months feels like 50 years when you’re locked in.
I was a body, you wouldn’t know a soul was in there at all. It took me a while to realize what was happening, I had this moment of “No one knows that I’m still thinking in here. That I still sound like me”. It went back in forth from being able to blink to being fully locked in. I had no control over anything except my hearing.
I had nothing to do but think. I would think about everything, about where I went wrong. The root causes of my substance abuse. I would think about why, I would think about the future. I would think maybe just maybe I could recover. I would think about how I might be stuck like this forever and that’d be worse than death. I thought about what my mother went through when she died.
I had the time to think through how I got here and really think about why. Thinking about what caused this, where it started. The drinking and things high school kids do, it was never severe but with someone who has these inner demons and is struggling they’re stepping stones to a larger problem.
This illness has really taught me that there’s more to life even before I started to recover. I was put in a place where I had to decide if I wanted to have 3 months of an OK life, not even ok but manageable life, not dying immediately I would need to get clean. I made the choice to do it for my wife, my father, my siblings. I did it for my family.
One thing that happens when you lose every basic ability possible is you realise how lucky you were. I remember just wishing I could go back to being dope sick, how lucky I was to just get up and go outside, go for a drive.
People stuck in the vicious cycle of addiction need to realize that, without recovery it will never get better, it will only get worse. You can’t maintain this lifestyle for long periods of time.
Look inside yourself and find that root cause of why. Once you find that root cause you can work at it with a therapist, a life coach or even your family.
You also have to think about how lucky you are for the little things that no one thinks about. And is it worth it to put that at risk to get high? Because I can tell you, it’s not worth it at all.
I’m extremely rare and lucky that I’ve ended up where I am. I’ve been given this gift to help others learn from my mistakes so I’m grateful for that. I’m grateful for being sober.
Every single generation going as far back as the beginning of civilization had struggles with addictions. Every generation throughout history have had successful individuals at recovery from their addiction and underlying self-destructive causes. Throughout history there are also these global pandemics that throw the world into disarray.
Life is filled with fucking challenges! Many addicts are already living in a constant state of mix-up; struggling with money, lying to love ones, taking advantage of people or possibly stealing, committing crimes. Many things that you’re right minded self would not do. With the entire world being in conflict, your everyday average person is struggling in a similar way just to cope with what’s going on.
I understand. I’ve struggled with depression and addiction for the majority of my life. I came the closest humanly possible to death. I fought like hell just to survive and equally as hard to begin to recover from the impossible. Just regaining some movement and the ability to speak and eat has made me value the simplest things in life and they are not to be taken for granted.
I encourage you to take this time to work on yourself instead of digging deeper into self destructive behavior. Try to enjoy the simplistic joys of life. Conversations with loved ones even if virtual, the outdoors, a good meal, a movie or soundtrack. Try to think back at what gave you joy when you were a child and try to get that back.
— Jacob Haendel
Interview July and November 2020