How did you get locked-in?
I was diagnosed with a terminal progressive disease May 24, 2017 called toxic acute progressive leukoenpholopathy. I declined rapidly over the next few months and by the fifth month I began suffering from locked-in syndrome. Two months after that I was sent on home hospice to die. I timed out of hospice and I broke out of locked in syndrome around July 4, 2018. I was communicating nonverbally and living in rehabilitation hospitals, relearning to speak, move, eat, and everything. I finally moved out of long-term care back to my new home December 1, 2020.
Do you know what caused the disease?
Some kind of toxic cutting agent. I’m 99.9% sure it was heroin because that was my drug of choice. I used to freebase heroin off tinfoil on a daily basis. Drugs are bad mkay!!
When did you realize that people thought you were in a coma or brain dead?
I remember very specifically as I was losing all of my bodily functions, I noticed in the hospital that no one was interacting with me anymore. When a nurse would come in change and IV, they would typically say, “Hello Mr. Haendel, I am here to change your IV”. They stopped for approximately 10 days and this is when I had an “oh shit” moment and thought to myself, ‘ no one realizes that I am cognitively in tact’. Unfortunately I overheard everything.. one of the most painful was, “don’t worry, he can’t hear you. He’s brain dead anyways”
The scary thing is recent research shows 1 in 5 comatose patients might actually be locked-in. Hopefully they can get fMRIs more readily available to distinguish between someone who is vegetative and someone who is locked-in.
What’s it like being locked-in?
I fully understood everything. My perceptions were good although I was extremely hypersensitive to everything and my internal clock was questionable as in I did not know how much time had elapsed, but I did have a pretty good idea. I could taste, smell, hear, see and feel, but like I said, I was hypersensitive to all these things and very uncomfortable. The weight of a sheet would make me itch and burn up and when a nurse would walk by, the breeze from her walking by would make my skin feel like it was burning.
Were you scared? How were your anxiety levels?
Constant panic attack… my anxiety was off the charts all the time. I am actually surprised my heart didn’t blow out considering I was in triple tachycardia.
How did the doctors know you had locked in syndrome and weren’t just completely gone?
They did not know until I started to communicate. When I could communicate verbally, I was able to describe my experience and they then realized I had been locked-in.
Didn’t they do an EEG and still see brain activity?
Yes they did and it showed slowed theta. There were some brain waves but The assumption was I was disconnected from reality or vegetative
Was the diagnosis accurate? If so, do your doctors have an explanation for how you pulled back from a disease with terminal progression, or is a relapse expected?
The diagnosis was accurate, it’s called toxic acute progressive leukoencephalopathy. I am the only documented case of recovery from Stage 4 of this disease and it baffled everyone. According to my brain scans, none of my progress should be possible but I am no longer terminal and I am basically like a newborn who has to relearn how to do everything. A relapse is not expected!
How did you occupy yourself during your time locked in?
I occupied myself with a lot of self communication. I talked to myself in two voices about literally everything. There is an article in the Guardian that goes into more detail about this if you’re interested… it’s amazing what your mind will come up with to keep entertained.
I only had involuntary vertical eye movements during the time of locked-in syndrome but I could definitely see a majority of that time.. I just couldn’t move my eyes.
How was the experience of falling sleep and waking up like?
I didn’t really fall asleep or wake up. It was more like I just passed out at time… usually from extreme tachycardia or pain.
Did you hear things people around you said assuming you couldn’t hear them/weren’t comprehending that they’d never have said otherwise?
Yes and yes unfortunately.
What kept you pushing forward and not give up on life?
Honestly, I was tired of being stuck in my mind and body. I was so frustrated that I had to break out… I literally couldn’t take it and I realized I was not dying. I overheard every day for 8 months that I would die… and guess what? I didn’t… so I just thought to myself, “I gotta get out of this”.
What was the most meaningful type of care and support were you given during your time locked-in?
I had a combination of care givers that would not speak to me to care givers that would sing to me. My dad went to extreme lengths and definitely burnt himself out in his effort to care for me both before and during hospice. In my recovery since I cam out of locked-in syndrome, the support has been overwhelming.
In terms up meaningful support, people who continued to talk to me as if I was actually there was extremely helpful. They would talk to me about the news, about their days and just “normal stuff”. They also kept saying they knew I was in there, which I was!
Keep in mind, I was transferred numerous times and supports changed frequently but the most meaningful were the people who engaged with me.
When did you realize that you were starting to recover?
Blinking for “can you hear me?” was the first time I was able to communicate and that’s when I realized that the doctors thought there was a chance I was in there. But then they started asking me other questions like “Blink if you know where you are. Blink if you know who the president is.. etc” Many were convinced that my blinking was just an involuntary action but over the next few weeks, I was taught how to stick my tongue out (barely) and that was my “yes”… so then we had a yes/no system which took me out of being completely locked-in into being virtually locked-in.
When you “broke out,” was it sudden or was it a slower process?
It felt slow to me but I’ve been told throughout this entire journey since July 4, 2018 that I’m recovering at lightning speed. That said, I hadn’t been able to communicate for 2 years, and there was so much I wanted to say that simply being able to answer “yes” or “no” felt like a snail’s pace.
How are you feeling today?
Phenomenal and truly blessed to be alive. I am sitting in my own apartment, in my own clothes. I finally feel like I have some independence but still working on literally everything every single day.
What your plans are for the future?
First things first, I would like to be able to walk and perform all my daily living tasks by myself. Aside from that, I would like to do some public speaking and be a voice for the voiceless.
Do you think it would be a good idea to leave the radio on for locked-in patients?
It would have been nice to have some music but make sure it’s not the same station all the time! And also, make sure it’s calm and soothing and not too loud because the patient might have a pounding headache! Music has always been a big part of my life and the hospital spa channel really did it for the first four hours but as we got into month two, I was freaking out and would have appreciated some variety!
What is your biggest most profound takeaway of this unique challenge you had to face?
The biggest takeaway is don’t take things for granted… it might sound cliche, but I truly appreciate all the small things. And never give up! seriously!
Theodore Lee is the editor of Caveman Circus. He strives for self-improvement in all areas of his life, except his candy consumption, where he remains a champion gummy worm enthusiast. When not writing about mindfulness or living in integrity, you can find him hiding giant bags of sour patch kids under the bed.