I have been misunderstood since August 2017, about three months after my diagnosis of Toxic Acute Leukoencephalopathy. Even though I can now speak, back when I was virtually locked in, I only had a YES and NO system — I would say YES by sticking out my tongue and NO by blinking my eyes. The difficulty was that not all the caregivers knew my system. For example, I had one caregiver who thought YES was blinking my eyes, and NO was sticking out my tongue, which obviously caused major confusion. Communicating complex requests was very difficult. Caregivers would try to understand and clarify by asking more questions, but when my statement was lost in translation, I would continue signaling NO over and over and over again. I would basically freak out in an attempt to try to communicate something more complicated. One day I wanted to explain that the sheets covering me were causing extreme pain due to my hypersensitivity, my nerve regeneration, and my body temperature was high. I would continue to say no over and over when they asked “Are you in pain?” “Do you need medicine?” “Are you thirsty or hungry?” I just wanted them to remove the sheets because it burned my skin so severely. When you’re only limited to spelling out a simple word, but trying to communicate a complex idea, it’s so difficult. I tried to simplify my request for the sheet to be removed, so I spelled OFF. They asked “Do you want the light off, or the TV off, or the air off - what do you want off?” They basically said everything in the room except the sheets. I continued to signal NO, NO, NO. Finally, I used the letter board to spell out SHEET OFF. The caregivers all said “Ohhhh, he doesn’t want the sheet, we get it!” I would stick out my tongue over and over for YES! My speech therapist was able to understand what I was trying to say and made a sign for my room: “Please do not cover Jacob, ever.”
Later on, when I could use a letter board to formulate words, many people did not know the proper way to use it, so it would either take more time or the word would come out wrong. On the letter board, the rows start with AEIOU and the provider would ask if the letter is in the row, and I’d stick out my tongue for YES.
However, some caregivers would go through the entire alphabet, instead of using the AEIOU rows, so this would take much longer. There was a spot at the end of the ‘A’ row for a space or a backspace. Many people would skip past that option, and continue with the letters, leaving no chance for a space. When we ended up with a string of letters, they would get confused. This was so frustrating, it would make me cry. One time, I was trying to tell my nurse she forgot to give me medication. The medication was called Lovenox. I needed this to prevent blood clots. Being bound to my bed, it was very important that I receive this medication. When using the letter board, she thought I was spelling two separate words LOVE and NOX, and had no idea what I meant. After about 15 minutes of me spelling out LOVENOX, she finally said, “Who gives a shit who you love? It’s time to take your medicine.” I got agitated and she called for help so that someone else could use the letter board with me. We spent over an hour going back and forth. Many people had to help, but they kept seeing it as two words, LOVE and NOX rather than the proper name of my life saving, scheduled medication called Lovenox. Being misunderstood was common for me, every single day. In my head I was screaming. It was an endless battle, and even more so when I began to use the Megabee. At first, I thought it was a great tool because I was aided by a speech therapist, but there was such a learning curve for other staff around me. Through this challenge, I became an expert on this rare, non-verbal communication board, the Megabee!
Not every caregiver was educated on the device. Using the board with someone unfamiliar with it makes the board essentially useless. There was no obvious space and backspace button, so my speech therapist came up with the idea of looking out to the window to the right to indicate a space in the sentence, and looking out to the left to indicate a backspace. There was a sign in my room explaining this process to staff, but unfortunately not everyone read the sign so they had no idea what I was doing. Some staff picked it up immediately and could easily help me communicate, but others could not. I felt as if everyone thought I was dumb. I’d say 50 percent of the people that I dealt with had a very hard time using the board. It made everything difficult and I felt livid when I couldn’t get my thoughts across to caregivers. Being misunderstood would send me into a panic attack. Think about it, when you spend so much time unable to say anything at all, and then suddenly have a device to begin communicating, but then staff around are unable to use the device, it's a very frustrating and hopeless feeling. Eventually, some of my caregivers, in particular a psychologist, studied how to use the Megabee in order to hold longer, deep conversations with me. That was a pivotal moment, when I could actually communicate about my emotional well being. As time went on, I learned how to talk in the most simplistic form so that others could more easily understand me.
Later, I would be transferred to a different facility where I was told that they would order a Megabee specifically for me. However, the device ships from Belgium and there was a shipping delay. It took over two months for my device to arrive, so I was left without any advanced communication device for quite some time - I was stuck with the AEIOU letter board. When you think about it, having gone from being non-verbal to learning how to use this rare communication device, it felt like the world opened up to me again. Not having the Megabee for two months made me feel like I was back to square one.
Some caregivers knew how to use the AEIOU board, but some did not. One social worker in particular would come into my room, grab the letter board and take a pen to point to areas on the letter board. The problem was that he would point to the space between letters or at a cluster of letters and would go really fast, not giving me a chance to stick out my tongue for YES or specify the correct letter. By the time I could stick out my tongue for YES, he would already move to a different letter and then assume that I was signaling YES, but for the incorrect letter. It was very frustrating, I’m pretty sure I cried. He was going so fast, he would mistake my YES for NO, and vice versa. He was using this letter board in a very unclear way, making it impossible for me to communicate with him.
I thought to myself, “What the fuck, I am brain damaged but this guy is being a moron.” I was trying to tell him really important, time sensitive information about the direction of my care and my life. For example, I was extremely worried about missing my taxes while I was comatose and on hospice for over a year. I was trying to communicate my wish for someone to contact the IRS and explain what’s going on with me. Because he couldn’t use a letter board, I couldn’t even get him to understand the simple letters IRS, he interpreted it as ETZ, somehow. He had this blank expression on his face. Nothing got accomplished during all my correspondence with him. Later, when my Megabee finally arrived, my speech therapist who was experienced with the Megabee would translate for me and explain to the social worker how to use this device to communicate with me. I thought to myself, "If this guy can’t use a simple letter board, there’s no fucking way he’ll be able to use the Megabee." Even after a lesson from the speech therapist, he still wouldn’t use it properly. Epic fail! I think about the twenty other non-verbal people in the hospital that he interacted with, and most likely dismissed their wishes and requests, as he did with me. Imagine all the misunderstandings, all the frustrations.
Eventually, I told him to go away because it wasn’t worth it. He made my blood boil. I would turn diaphoretic and tachycardic, my skin would turn red and my temperature would raise. From day one, literally my heart rate would skyrocket with his presence. He was medically not safe for me to be around. I then requested for someone to be there as a translator and witness because it got to the point where nothing was being done. Thank goodness I had the cognitive ability to advocate for myself. Imagine all the people who do not have this privilege.
With translators and witnesses, I finally got to tell him all the things I needed. But he still didn’t really follow through. I kept asking about my requests such as contacting the IRS about my taxes and also my long, complicated application process for a special program to help get me back into the community, but I found out nothing had been accomplished. This infuriated me. To truly be understood, I was forced to escalate this to the highest level of the hospital.
Being nonverbal and misunderstood is a very difficult challenge that creates a lonely, scary and painful existence. I feel grateful to the caregivers and speech therapists who never gave up on me. And I’m proud that I never gave up on myself. Eventually, I acted as my own social worker and accomplished all the things I had been requesting for over 5 months. I still think about the other non-verbal people who are left with what they’ve got and dependent on the decisions that these social workers make for them.