Before I was discharged from Spaulding Rehabilitation Hospital-Cambridge for many other things including hypoxia, I started having vivid hallucinations. Things were happening that I knew were not possible, but they felt so real.
A timeline of events
10/10/2017-11/8/2017: Admitted to MGH for severe autonomic dysfunction with fevers, hypertension, tachycardia, tachypnea and respiratory failure requiring temporary ventilatory support, rhabdomyolysis, placement of gastrostomy tube on 11/1/17 for dysphagia, and with progressive decline in mental status, spastic quadriparxsis, continued autonomic dysfunction and global functional decline.
11/8/2017: Discharged to SRH-Charlestown, sent out to MGH same night with severe autonomic instability + multifocal PNA resulting in intubation and ICU admission.
11/15/2017: Discharged to SRH-Charlestown, again readmitted to MGH 12hr later with severe autonomic instability resulting in intubation. Also retreated for recurrent PNA, rhabdo, and demand ischemia. During this admission, I received Botox to LUE by PM&R.
Once time in early December 2017, at SRH-Cambridge, even though I couldn’t walk or talk or move, being so uncomfortable and wanting to leave, I hallucinated that I was able to somehow make it to the front desk where I actually signed myself out against medical advice. Then, I miraculously was able to stumble out of the building. As I exited, I felt as if I was leaving someone’s residential garage. All of the sudden, I was in the middle of nowhere in a residential neighborhood stumbling around. In this hallucination, I was able to talk and operate my iPhone. I called my father told him that I left against medical advice and I needed him to come to pick me up. Shortly after calling him, he appeared in my stepmother‘s Nissan Altima to pick me up. I stumbled into the front seat of the car and he said “You shouldn’t have left, but where to?” For whatever reason, I was craving ice cream and I told him to take me to the nearest grocery store. Even though I was in Cambridge, within an instant, I was in my former town of Marlborough Massachusetts at the Hannaford‘s grocery store that I worked at as one of my first jobs. My dad dropped me off in front of the store and I stumbled to the frozen food section where I came across Häagen-Dazs mini ice cream’s. I grabbed about five or six of them and stumbled to the self check out. I somehow paid for these and ended up with a plastic spoon, immediately eating them. It tasted so good! As I proceeded outside of the grocery store, within a blink of an eye, I was back in my hospital bed at SRH-Cambridge and then within another blink back to MGH NeuroICU being intubated. Throughout all of this, even in times of extreme hallucinations, I kept a good grasp on reality.
Until recently, I hadn’t realized I was hypoxic during the time I was hallucinating. It was noted by the radiologist that I had progressive destruction (leukomalacia) in my occipital lobes bilaterally. This area is where visual information is processed in the brain, which may explain some of the vivid, visual hallucinations.
I was under the impression that my hallucinations were medicine related or my mind trying to escape the unbelievable circumstances I was going through being trapped in my own body. In the definition of hypoxia, it states the patient is technically hypoxic when the blood oxygen level reaches 92% or below. My oxygen levels were very, very low.
As an aside, when I experienced COVID-19, my blood oxygen level dipped as low as 88% and I had no hallucinations.
Thinking back, things got a lot stranger throughout December 2017. It’s hard for me to put exact dates of the hallucinations, but they all seemed to happen between mid-December to New Year’s Eve, my wedding anniversary.
December 31, 2016
I was completely locked in, on a ventilator, bedridden, and hooked into every other medical device imaginable. Again, in the blink of an eye, I had a hallucination where I went from my hospital bed to a wheelchair and I was suddenly in the middle of a busy mall during Christmas time. I was alone in a wheelchair, which I knew in my head was impossible because I was stuck in bed. In the hallucination, I was in the middle of the department stores at the mall with crowds of people walking by me in both directions. I was covered in a blanket and wondering why I was in this mall, all alone. It felt like I was there for over an hour, then I realized that my nurse and one of my other caregivers was actually a cashier at the mall. Some part of me tried to rationalize what I was seeing and I began to believe there was actually a mall within the Mass General Hospital campus. It was almost like these nurses and caregivers were just helping out the other MassGeneral mall staff and taking me on an outing. It was really bizarre, but it’s all I could rationalize. I just kept asking myself “Why would they ever bring me down here, even if this was a real mall within Mass General?” I was fairly confident this was not real at all, but it just seemed so real and vivid. Suddenly, I was outside of MassGeneral hospital in the middle of a blizzard. I was in my wheelchair all alone, and my body felt freezing cold. I stayed there for what felt like a few hours. I blinked my eyes and was thankfully back in my hospital bed. I was not there for long until the room morphed again. I was transported in my mind to a hospital setting that was looking out over Newbury Street in Boston. The rational part of my brain knew there was not an MGH building located on Newbury Street, so I felt confused. I spent what felt like a night or two in the hallucination, then my next trip began. There seemed to be this plaza of stores, restaurants, and shops on the MGH campus. My father and my wife took me to this restaurant that appeared handicapped accessible. This place looked exactly like the restaurant Chotchkie's from the movie Office Space. All of the servers were actually my medical care team, wearing uniforms with their pieces of flair. It had all the decorations on the wall, just like in the movie. Sitting in this restaurant with my family felt very real, but I was saying to myself “This can’t be happening..” It’s strange how parts of reality made it into these hallucinations. For example, my family was drinking rum and Coke’s, but I couldn’t have any alcohol or food ingested by mouth, of course, because I was NPO. The bartender was my nurse. They prepared my liquid solution of medication to be injected into my feeding tube...at this restaurant. The whole thing was so strange! In the blink of an eye, I was in the back in a hospital room which I believed was actually my real room. It was an exhausting experience!
There was a general consensus amongst everyone at the hospital and in my family that I would not survive until the new year, 2018. When I survived past Christmas, people referred to me as ‘the Christmas miracle’.
The night of New Year’s Eve was very strange, not only for the reason that it was my wedding anniversary, but for many different reasons. Everyone had spoken about how I was not going to make it, so I was fairly confident that it would be my last night on Earth. My wife showed up with many New Year’s Eve party favors, anniversary gifts, and decorations for my hospital room including a life-sized teddy bear, which I thought was a hallucination, but it was real. As my wife was taping pictures to my wall, the room seemed to morph into a giant luxury suite. There also seemed to be a loft. Magically, the pictures that were taped to the walls were also taped in the loft portion of the giant luxury suite, along with a bottle of champagne. In the hallucination, I still could not talk, move, or drink (just like in reality). In my body, I was so exhausted and honestly ready to die, I could not imagine making it until midnight. My wife said she would pop the bottle of champagne at midnight, put some on her fingertips, and put it to my lips. I was really having a hard time comprehending if any of this was real or not, and I still wonder about this today.
December 31, 2017