Simplistic Joys Of Life: Coming Back From Locked-In Syndrome

July 2018, MassGeneral Hospital / Spauling Rehabilitation Center

When I first was able to use a letterboard and then the Megabee, just communicating with people was amazing. Being able to express my needs was a gift. 

August 2018, Spaulding

One time when my occupational therapist brought me outside and wheeled me over to an elevated planter box, I was able to put my contracted hands in the dirt and, with assistance, plant a flower.  Despite this sounding like a delightful moment, any slight movement I made gave me excruciating pain. In fact, I didn’t even have to move to experience this pain. It was like that every minute of every day. In addition, the sensation of the sun on my skin burned. Even with all the negative feelings, it was a very nice and positive experience, especially considering I hadn't been outside in about 10 months. It also gave me the motivation to get to the point where I could do that more often.  

Sept 2018, Spaulding

My physical therapist was teaching me how to operate a Sip-n-Puff wheelchair. We went outside so we could practice off-road driving. We did this outside the entrance of Spaulding Charlestown. We were able to drive over to a nice lookout point of the Boston Harbor. It was very peaceful, and I thought I might not get an opportunity like this one again. 

I was enjoying my time for about 10 minutes when I started to go into respiratory distress from dysphagia. Every time I swallowed, I would choke on my saliva. My physical therapist had to take over control of the chair and drive me back inside so the nurse could get the excess saliva out of my mouth with a suction machine. I guess I could say, overall it was a solid experience, but it was even more than that. The only time I had been outside at all — with the exception of the planting of the flower — was during the dozen or so emergency trips from one hospital to another — and even those “outside moments” were hectic and brief. 

April 2019, Western Mass Hospital

I was able to go on monthly trips to a movie theater or a restaurant with recreational therapists. These were my first experiences in public since I got really sick. My first trip was to the movie theatre to see Creed 2.  Now I always thought that I would recover, though I never really gave much thought to the in-between process, which obviously takes a significant amount of time. Internalizing this all at the theatre, it was surreal that it was actually happening. My second trip was to see the movie Aquaman. My third trip was to The Little Red Riding “Hood Cafe.” My physical therapist actually owns this place. I went there with another patient for lunch. This was the first time I ate food outside of the hospital and in public, despite feeling embarrassed about my overall appearance and my voice. While this may seem like a minor thing to most, it was actually a big deal to me. 

May 2019, Western Mass Hospital

Due to unforeseen circumstances, during an extraordinary situation, I was disconnected from every single person I had ever known. Eventually, I was able to reconnect with all of my family and friends via FaceTime on an iPad donated by UCP. Being able to verbalize and communicate with people I had been missing was an amazing feeling — better than any drug or superficial experience I’ve ever had; a real natural high. Within days of reconnecting with my family and friends, people made the long trek out to Westfield Massachusetts to visit me.

May 15, 2019, Western Mass Hospital

I experiernced my first intimate kiss in my new life, something I thought I would never have the opporuntiy to experience ever again. My reason for sharing this personal detail is because in my former life, this was something I really took for granted. Regardless of what you're struggling with, it's importnat to remember to stop and cherish the simple joys of life.

July 2019, Massachusetts General Hospital

I was transferred back to a unit I was formally on at Massachusetts General Hospital when I was coming out of LIS. Back in Boston, many of my family and friends were close by and I had multiple visitors on a daily basis. I did things like go to the healing garden at Mass General Hospital. As I was sitting out there with family, I realized how lucky I was to be alive and have the ability to talk, drink, eat solid food, and laugh.

Soon thereafter I was able to drive my power wheelchair and sneak out to go get a proper lunch with my brother at Clink Restaurant at The Liberty Hotel.

August 2019, Tewksbury State Hospital

I was transferred to Tewksbury State Hospital on August 15, 2019. Even with so much hardship and pain, everything in life tasted better and I was overall happier which is ironic considering my situation. Every little experience in life is so much sweeter now.

Going through all of this has given me the opportunity to reconnect with many people from my past. It has helped me to really think and assess what contributed to my crazy complicated and fast lifestyle. I had a longtime girlfriend and love named Adrienne Calendrella. We had everything going for us. Even with all of this, we still felt the need to push everything to the limits, not only with drugs but every single thing we did in life. We always wanted and were craving more, whatever that may have been. We could never live in the moment.

Adrienne and I both have unique stories and have experienced similar outcomes in the afterlife of drug addiction. We both are going through different but similar recoveries and are extremely grateful for the simplicity of life and sobriety. It’s not about the materialistic things and it is all about the relationships and conversations and love. For me, not only am I grateful for the ability to speak, eat, drink, move, and walk one day soon, I am especially grateful to have this woman back in my life and to tell our life stories together. We hope to help others from making the mistakes we did.

My first full day of sobriety was May 26, 2017. Adrienne‘s first full day of sobriety was November 1, 2018.

Adrienne and I October 2020 telling our story