Locked-In

My aim is to create awareness about Locked-In Syndrome. The reason why I think it’s important to write this article is because I was locked-in for about two months. I hadn’t heard of Locked-In Syndrome or known anything about it until I suffered from it. Locked-In Syndrome can be best described as a condition where someone is completely cognitively aware but is unable to move anything but their eyes and is unable to speak. Some common causes for Locked-In Syndrome are from a brain stem stroke or a drug overdose. I suffered a brain stem stroke and that’s how I became locked-in. It may appear that in the case of an accidental drug overdose, it’s simply the price of doing drugs. However, I can be fairly certain it is much more than anyone would bargain for. It is a fate so cruel that it wouldn’t be wished on one’s worst enemy. Locked-In Syndrome is often misdiagnosed because patients resemble being in a coma. In my case, I was properly diagnosed with Locked-In Syndrome, but I had the terrifying experience of being trapped inside my own body. It happened on November 8, 2014, which is when my brain stem stroke occurred, and I was locked-in until about New Years. I can only recall the last two weeks of it. For most people, they had Thanksgiving that year and experienced the holidays. I’m unable to remember any details from that time. It was as if no time had passed for me and it was kind of lost time. In fact, when I unlocked I had to be told what happened. My lack of memory my wife maintains, is a favor. Perhaps she’s right. I was also told that I had many visitors when I was in the Neurological Intensive Care Unit. I am very appreciative of the fact that people would visit me. Unfortunately, I just don’t remember many details from that time. After my two weeks in the Intensive Care Unit, I was transported to Kessler Institute for Rehabilitation in West Orange, New Jersey, United States. It was there that I was able to recover. When I awoke there, I had to be told where I was. In fact, I recall asking my wife via a letter board (a communication board – as I was unable to speak) if we were near Newark Liberty International Airport because I could hear the rumble of the airplanes above me and I thought I might be on a flight path. It turns out I was. However, usually locked-in patients can recall everything about being locked in. Even two weeks of experiencing being locked-in feels far too long, I can assure you. I always joked that I am fairly confident I will never go insane because I would have when I was locked-in. In fact, it was so maddening that it took everything to not allow myself to go insane; it was that frustrating.

People who are locked-in often communicate via a letter board. For those who are unfamiliar with what that is, it’s a piece of paper that contains the alphabet. It has all the letters in four or so rows. A person will ask if the letter is in the first row, the second? Once the row is signaled, then the person reads each letter in that row in order for them to identify the letter. The process will then repeat until a word or sentence is spelled out. The way a row or letter is identified is often by blinking because a person who is locked-in can typically only move their eyes. For me, they had me look up or down because they determined that everyone has to blink, and that looking up or for yes and down for no is a more accurate way to communicate. In fact, I could only look up or down and was completely unable to look side to side. It took approximately a month of intensive inpatient therapy to get me to easily look left or right at will. It took another month of intensive inpatient therapy to be able to sit up by myself. Now I sit up for as long as I want and really don’t give it much thought, but I recall when being able to sit up by myself for ten seconds was actually a big deal.

For me, being locked-in was a surreal experience, as was the experience of unlocking. I experienced the same dream over and over. It replayed itself about a thousand times. A little over two months passed and I was told (by loved ones) that I would always answer questions appropriately, but for me (while I slept) I experienced the same dream over and over. I was on a boat and I had to figure out who was piloting the boat. I was slowly and incrementally given these little clues and I had to solve the mystery. In reality, the people on the boat were people that were visiting me. However, I would have to put together the small clues I received each time I had the dream to solve the mystery. This actually factors into what I do for a living because I am an Assistant Prosecutor. They are often called Assistant District Attorneys, State’s Attorneys, or Barristers in other jurisdictions. So one might say I am well suited for solving mysteries, as I actually have been involved in investigations before in the real world. The mystery took an incredible amount of perception and patience to solve. When I was able to solve it, I began to unlock. I figured it was probably my brain’s way of making sense of things. A metaphor of sorts and most likely nothing more than that. When I began to unlock things suddenly became much clearer to me. My mother suggested that I nod my head instead of looking up for yes and down for no. It certainly made things easier. I found I could do it. I was so intrigued by this newfound skill that I found myself nodding yes and no when I was in my bed at night to no one. Partly I did this because I could and a part of me did it because I was afraid if I stopped I would be unable to do it anymore.

I really wasn’t able to hold a conversation for another six months so I was still reliant on a letter board. I did use an iPad application called “verbally” to communicate. It’s basically a text to speech application. Before I was able to speak the thought was I may need an adaptive device like this to communicate. One could pay for more voices but the standard voice and the one I used was free and very robotic sounding. I used to joke and say it made me sound like Stephen Hawking but not as smart. There was a time when I recall bringing a letter board everywhere with me. Then, on Father’s Day 2015 (I hung out with my father) and visited with my father-in-law. We ate dinner together and my mother-in-law, my sister-in-law, my brother-in-law and my niece and I were all together. I didn’t use the letter board once. It stayed in the bag (that my wife would carry with my few things). My speech wasn’t perfect but I could be understood in conversation. My speech therapist always wanted me to throw out my letter board because I didn’t need it anymore. My speech therapist was correct but I think I keep it because of habit. Perhaps I keep it because it serves as a reminder of where I’ve been.

I recall when I was beginning to unlock I was first able to nod yes and no for letters on a letter board, but then I could point to them. Definitely a lot better, but still a painstaking process. I am actually lucky I am pretty good at spelling and people around me were good at transcribing because if we weren’t, it would have been very difficult to communicate. I recall I wanted to ask my Physiatrist (pronounced fi – z – eye –a – trist), a doctor who specializes in rehabilitative medicine (I had never heard of one before I had one), about the potassium supplement he was giving me through my feeding tube put in my stomach and I didn’t feel like spelling the word “potassium.” I just pointed to the letter “k” on my letter board. This is the symbol for potassium according to the periodic table of elements. I figured my mother (a former science teacher) or a doctor who probably has a strong background in science would know what this means. It turns out both did. My Physiatrist has always been compassionate and supportive. He joked and proclaimed it was AP letter boarding or an advanced class in letter boarding. Even though everyone at Kessler knew about my condition, I would routinely identify songs on the radio because I was desperate to prove that someone is inside of me because I felt trapped inside my body. I would like to think that I was able to unlock due to some internal strength, fortitude, persistence, drive, or intelligence on my part. The truth is it’s probably just dumb luck. I played the lottery and won.

I have to give credit to my wife. She basically acted as if it was a foregone conclusion that I would unlock. Doctors and nurses in the ICU told her I would probably stay locked-in because chances were I was going to stay that way. In fact, they told her there was a good chance I would not make it. They proclaimed that in the best case scenario I would remain locked-in and survive about five years. She would reply “ I know what I sound like to you, I’ve worked with families (she happens to be a counselor) and I sound like someone who just doesn’t get it or I’m in denial but you don’t know my husband and he can’t stay that way.” If she had any inner doubt or reservations she must have pushed them away. Such faith and belief in someone is refreshing given the fact that we live in a somewhat cynical world.

Recently, I was eating at a restaurant and I was gazing out the window and I saw a gentleman walking through the parking lot with the assistance of two Lofstrand Crutches under each arm. To people unfamiliar, they are the single prong crutches/canes that have a forearm cuff. He wasn’t old, and was in about his fifties, and it looked like it took a fair amount of effort to get around. My first thought was good for him, he’s able to move around independently. My second thought was I noticed that he was alone. Perhaps he wanted to run some errands alone? It’s also possible that he had no one to go with him. I thought, there is no way my family would let me walk alone in a parking lot unless I insisted that I wanted to be alone. I not only want to thank my wife for always believing in me and refusing to give up on me, but I want to thank my parents as well. Medical professionals will tell you that a significant component of rehabilitation is family support. The truth is, no matter how motivated I think I am it’s really for nothing if I didn’t have support from family and friends. I contribute any and all recovery I have been able to obtain to their support. So if you have a family member/loved one who is locked-in, please know you have a very important role to play.

I really also want to thank everyone at the Kessler Institute for Rehabilitation for everything they have done for me. Upon admission I was placed on a spinal cord injury floor because I presented with such little movement I resembled someone with a spinal cord injury. This hybrid approach, treating me with a combination of treatment modalities due to the stroke and if I had a spinal cord injury, made all the difference. They could have just accepted the way I was because I was able to breathe on my own and use a communication board, but they expected more. That includes everyone from the doctors, nurses, aides, therapists, professional staff and various workers. From physicians to those who cleaned my room or food service employees, it’s important to note that you all had an important role to play in my recovery. If I worked with you, I want tothank you for your efforts. Please know I am forever grateful for your assistance to put me back together. If I hadn’t worked with you before and you just said hello to me in the hallway I am grateful. Before this happened I was a trial attorney, could play two instruments, was an avid cyclist that raced regularly and completed approximately a hundred miles a week, liked cooking and made a majority of the meals for my wife and I, and speak a language other than English fluently (and no, it’s not Spanish, I would never know something that useful). As such, I was a fairly high functioning individual. Then I became ill and my entire world came crashing down. I was basically resigned to being able to do nothing but spend my days in Kessler’s Day Room (which is an atrium of sorts and a common area) recovering. Your kind words were a welcomed break from my miserable day.

In some ways I was very overly confident about my recovery. Despite only being able to move my right hand enough (I couldn’t move my left at all) to press play on a podcast application on my phone I would listen to guitar playing podcasts. It was unfathomable that I would be unable to play again but I knew I would. Now my right hand moves pretty normally and my left moves at about 50% of what it once did. I can play the guitar but not as well as I used to. Part of me feels like if I am unable to play like I once did then I shouldn’t play at all. However, I really can’t imagine a world where I can’t play. In fact, whenever I hear Rip Tide by Vance Joy I get a little upset. It’s a fairly popular song that’s played on most top 40 radio stations. It always seems to be on no matter where I am. It’s not that I think it’s a great song, it’s more that I learned to play it a few days before I became sick. It just gave me something to do. I was up late one night unable to sleep and I was watching Later with Jools Holland on BBC America. For those of you who are unfamiliar with it, it’s a talk show in the United Kingdom where new and upcoming bands play live. Vance Joy is an artist from Australia. I was watching the show and saw him on and learned how to play it. It probably only took me about ten minutes to learn it. For those of you who are musicians, play the guitar, or are musically inclined you will say how did you play that song on a guitar when it’s obviously played on a yukele? I played it on higher frets and used a capo (a device that lets you barre or hold down a row of notes without using your hand) to mimic the sound of a yukele. Now I could play it but it would probably take me a month to learn and I don’t like the song enough to invest the time into it. I think I get a little sad when I hear the song because of what it represents for me. What once took me almost no time to do now takes me much longer. It’s a change that I have to adapt to.

If you look up Locked-In Syndrome on Wikipedia the prognosis section reads the following:

“It is extremely rare for any significant motor function to return. The majority of locked-in syndrome patients do not regain motor control, but devices are available to help patients communicate. However, some people with the condition continue to live much longer, while in exceptional cases, like that of Kerry Pink and Kate Allatt, a full spontaneous recovery may be achieved”.

It is from the Internet so you know it has to be true. It might be extremely rare for any significant motor function to return, but it is certainly possible. First, I would like to draw your attention to Kate Allatt in Great Britain. She’s an outstanding tale of recovery, not only because she’s mentioned in the passage above. She was actually the same age as me (thirty-nine) when she suffered a brain stem stroke and developed Locked-In Syndrome. She is a few years further along in her recovery than I am and if you have the opportunity to read one of her many well-written books or watch her TEDX Talks (they are short as in the format of TED Talks), I think you will find her story of recovery truly inspirational. She was once locked-in and now is functioning at a high level. She has been a tireless proponent of Locked-In Syndrome awareness. Then there’s Martin Pistorius. He is from South Africa and he wrote a very fascinating book called Ghost Boy. It documents how he was locked-in for approximately ten years. He is no longer locked-in and his recollection of being locked-in is fascinating. There is also this gentleman named Tim that I communicate with over email fairly regularly. He attends outpatient therapy like I did at Kessler. He was once locked-in but no longer is, and he is an inspirational person. At Kessler I also had the pleasure of meeting a guy named Ed. He was locked-in but no longer is and his recovery has been amazing.

I was watching a YouTube video from a stroke and locked-in survivor from the United Kingdom who was once locked-in and has had an amazing recovery and does motivational speaking engagements, and I learned about a very interesting program. She said before her illness she loved wearing fancy shoes. Now that she uses a cane she needs to unfortunately wear shoes that provide more support, greater traction and can accommodate a brace she wears. If you go to the Nordstrom’s shoe department they will allow you to purchase different sized shoes at no additional cost. I believe a person qualifies for this program if you have an orthopedic condition, prosthetics, or wear a brace and require a size one and a half larger. I have a plastic custom-made brace that I wear sometimes. It doesn’t go above my calf and it is shaped in the form of an “L.” I don’t need it to walk but it is easier to walk with. It provides ankle and knee support. It is common for many stroke survivors to have drop foot. That’s a condition were a person is unable to hold their ankle up and the brace holds the foot up, preventing it from catching the ground while walking and enabling a person to clear their foot. I don’t have drop foot but my ankle can rotate so I end up walking on the side of my foot. The brace holds my foot neutral and prevents my ankle from turning. This program is a godsend because it enables me to wear my regular size shoes on the foot without the brace without having to buy two pairs. I encourage people who can satisfy the conditions set forth above to take advantage of this accommodation. In fact, if you don’t require different size shoes I still recommend you choose to shop there because of this. I am sure they can have many mismatched shoes as result of such policy. However, if people go there as a result it can bring new business in and pay for itself. I urge you to tell any store clerk that is working with you that you are shopping there because of this unique and progressive program.

If you have a family member, loved one, or a friend who is locked-in or you yourself are locked-in and someone is showing you this article, please know there is hope. These aforementioned remarkable individuals are shining examples of how Locked-In Syndrome can be overcome. There are other lottery winners out there. They are living proof that you can unlock whether you have been locked-in for a long time or short time. If you look near or far you can see examples of people who have successfully beat it.

Beating Locked-In Syndrome certainly doesn’t come without its challenges. I was unable to eat or drink anything for about four months. I was fed via a feeding tube as swallowing difficulties usually follow a brain stem stroke. If you are a coffee drinker you can imagine what my first cup of coffee tasted like? It wasn’t even a particularly good cup and it was amazing. In fact, thin liquids like water, were one of the last things I was cleared for on account that it moves down the throat the fastest. I still cough sometimes when I drink thin liquids. It almost never happens with food. I would always laugh when I would be coughing and a home healthcare nurse or aide would give me water and tell me to drink it. I know they were just trying to be helpful and it’s customary to offer someone who appears to be choking a glass of water. However, they were literally trying to tell me to drink what was making me cough.

It’s fairly common for people who have had strokes to have swallowing difficulties. Take for example; it claimed the life of Jean-Dominique Bauby. He wrote the book The Diving Bell and The Butterfly. They made a movie of the same name based on his book. He was locked-in and sadly never unlocked. The book and the corresponding movie chronicles his experiences being locked-in. You may ask if he was locked-in how did he write a whole book? He remarkably blinked the entire book. If you ever want to know what it’s like to be locked-in, I recommend you watch the movie because it is shot from his perspective and does a good job depicting what it is like. The movie also contains a fair amount of inner dialog. That’s why I believe it’s called The Diving Bell and The Butterfly because to the world he is unable to speak and completely shut off like being in a diving bell or a diver’s suit. However, his imagination is free to wander like a butterfly. One of the few scenes that is not shot from his perspective is where you see how the stroke happened. He was driving on a country road with his son and he pulls over because he doesn’t feel well. He then has a life-altering stroke. It just goes to show you how random life can be. Fate can deal a bad hand at any time and it’s what one decides to do with it that will truly define a person. I actually had brain surgery to remove the clot. They didn’t cut my head but went through my inner thigh. I can’t even find a mark or scar that signifies an incision. I always marvel at modern medical science because one can have brain surgery and not even have a mark to show for it.

It’s very strange to be locked-in because in my experience my inner voice or dialog moves at the same speed it always did, but your spoken voice just isn’t there. Unfortunately, Jean-Dominique Bauby died of aspiration pneumonia. It’s a fate that can sadly befall many stroke patients. It’s when you accidentally breathe food or drink into your lungs. For me, it’s more a matter of coordinating taking a breath and swallowing. I used to swallow and breathe and not think about it. However, since the stroke I have to be mindful not to take a breath when swallowing or I risk food or beverage going down the wrong pipe. A warning, the movie is rather heavy and French subtitled. However, if you’re in the mood it can be entertaining and informative.

I don’t know why I am rushing to recover as my two-year anniversary of my injury just passed, but I feel some pressure to do so. Some doctors and nurses said it’s a lot harder to make significant gains after two years. However, it’s not like one passes the day of the two-year mark and simply stops getting better. Moreover, my neurologist says everyone is different and it’s difficult to say that any single person’s recovery will only last two years. He has always offered positive feedback and is one of the most supportive and positive people I know, and was from very early on.

During the course of the next year you will be bombarded with opportunities to support charities for a variety of causes. Some will be from large non-profit groups that are well funded. Please don’t confuse what I am saying. I think it’s great to support any charity you like and especially support the ones that are near and dear to your heart. I ask that you keep Locked-In Syndrome in mind. There are some resources from the National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm and the National Organization of Rare Diseases http://rarediseases.org/rare-diseases/locked-in-syndrome/. I would investigate them if you are able and interested. However, they are no way near as large and well funded as many other organizations. That is why I ask you keep Locked-In Syndrome in your mind space. It is our only chance to combat this debilitating condition. It is very important to stay positive and encouraging because as far as we know we only get one ride on this merry-go-round called life and you owe it to yourself and your love ones to give it everything you have. You never know when recovery is right around the corner.

By John M. Carbonara

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