Pancho Ramirez is CommunicationFIRST’s newest Board member. As a Mexican immigrant farmworker, he acquired his speech disability in 2003 at age 20 after a car accident led to a brain stem stroke, and has lived in nursing homes and hospitals in northern California ever since. While living in an institutional setting, Pancho has taught himself English, earned his GED and a web developer certificate, started learning French, and has become an instrumental member of a research team at the University of California, San Francisco (UCSF) that is developing groundbreaking communication technology to produce words from thought. He was profiled by Pam Belluck of The New York Times in July 2021 in the article “Tapping Into the Brain to Help a Paralyzed Man Speak.”
Tell us about the communication tools and support you rely on now. I just use a regular computer to send emails and text. I use a head mouse and the screen keyboard. Also, people from UCSF gave me a laser pointer and a letter board. The laser goes attached to my hat or glasses, someone holds the letter board in front of me, and I point the laser light to the adequate letter. They gave these things to communicate with them on the go, if I need to, very handy little things. I carry it with me everywhere I go, to get a tea with Dutch Bros coffee, whenever I go out with my friends, and so on… I don’t use it all the time, because I don’t have the necessity, but I have it, just in case. I don’t have a [dedicated speech generating] communication device yet. I hope I get one soon.
How do you communicate with your caregivers? Mostly by nodding and trying to speak. I can speak a couple of words sometimes.
How long were you paralyzed before you were given access to the head mouse to type your thoughts? UCSF gave me the head mouse last year, it was around June 2020, I think. [Before that,] I used to have to wear a baseball cap with a plastic wand attached to it, so I could poke the keyboard and operate a computer. It was good to have the opportunity to use a computer device, but it was exhausting, because I had to be very close to the desk, and inclined towards the keyboard, all day long.
What is it like when you can type your full thoughts out? It is fantastic, awesome! I don’t have to wear the baseball cap for that reason. I wear one, but because I want to. I get to navigate through the web easier and faster. I’m very happy with my head mouse!
The speed at which one can type can be a source of stress for those using a communication device. Is this true for you and, if so, how do you deal with it? Yes, I get very frustrated when talking to people, because I feel like I’m taking too long to respond back. I haven’t given it a thought on how to deal with it, to be honest.
Do you find that expectations of those around you have changed now that you do not rely primarily on speech to communicate? People wait to hear from me, especially if they make questions. They don’t make assumptions, or try to guess. They hold their horses!
Why do you think you haven’t been given a communication device even though you’ve clearly needed one for 18 years? I actually got a communication device around 2011, but it broke down quickly, so I didn’t try to get a new one.
You grew up in Mexico. What year did you come to the US? How old were you at the time? It was in March of 1999 when I came to the US. I was 17 years old. I stayed here in Sonoma, California, for about a month. Then I left for Washington state. My father and two brothers were there, so I thought I should be with them. I spent about four years there, and then I decided to test my luck [back] in the Golden State.
What were some of the reasons you came to this country? I came with my mind full of illusions, longing to make lots of money to help my family get out of poverty and build my house, and then to return back home, get married and have a big family. However, my fate was already made, and I didn’t have such a blessing.
What kind of work did you do when you came to the US? I used to harvest apples and take care of the apple trees. Apples are the most common fruit trees in Washington. There are countless fields of them, and many different types. Also, cherries. I used to pick cherries, too.
What was your life like back then? My life was, well, sort of like a wild one ????, sad sometimes, now that I think about it. I drank beer and got wasted almost every day of the week. I got to work barely sober, but still a little drunk; not hungover, intoxicated. I used to go to the bars and parties, at least every weekend. I was a dancer, not like the ones on TV, but I loved to shake it, whenever I could. However, even though shaking it was fun, I really enjoyed to dance the slow songs when you get to hold the lady. That was awesome!
Are you able to see or keep in touch with your family and friends in Mexico? I do get in touch with the family over there through Facebook. We just use the texting Messenger. We could use video chat, I guess. I don’t like to use that feature because I feel silly just looking at the camera and unable to speak. I tried it before, and they started asking questions, and I couldn’t answer, so I don’t do it anymore. I stick to texting messages.
Can you tell us a little bit about the accident that caused your disability? It was Sunday morning, June 22, 2003. My brother from another mother (a friend I consider my brother), and I suffered a terrible car accident in Santa Rosa, California. I ended up in the hospital for an immediate surgery, as the organs from my stomach were severely damaged and needed urgent care. I was the only person who had life threatening injuries from the crash.
Almost two weeks after the accident, the doctor in charge of my care found an infection on my right side, above my waist, that needed to be taken care of right away. So the doctor said he had to make another surgery. Don’t worry, he said; it is going to be so, so small, you won’t even feel it. It was to insert something to absorb the bad stuff inside. Thursday, July 3, 2003, when I was scheduled to have the second, small, surgery, around 5 pm, I was taken by the medical staff to the operation unit. I woke up after the procedure was done in my room. I had a small tube, like a small balloon, hanging on my side so it could absorb the bad liquid. After that insignificant surgery, I was actually scheduled to go home on Monday, July 7, 2003.
Monday arrived, finally, after a long weekend waiting for it. I got off the bed bright and early, hoping to go home quickly. However, the nurses told me I wouldn’t be discharged until the afternoon. Oh no! I asked, why not now? The person who is supposed to pick you up is not able to come in and get you at this time. Oh well, better late than never, I replied. I walked down the hallway and back to the room, took a glance at the clock hanging on the wall hoping to see the handles advance quickly. But they seemed to run backwards instead. I was just anxious to get out of there, I guess, and because of that, a few more hours felt an eternity. I laid down and got up, laid down and got up, and so on, until the time to leave the hospital finally came.
Around four o’clock, my brother-in-law arrived for me. He and I signed a bunch of papers, then the medical staff took me out in a wheelchair to the vehicle, and my brother-in-law and I climbed into the car and headed to Sonoma! My brother-in-law and I arrived home nice and safely. My sister was working that day. Fortunately, I have such a wonderful sister; she requested to get off a little earlier. She got home a couple hours after our arrival, and made dinner for her family and me. She had a difficult decision to make regarding the food because she did not know what to cook for me, as I was just released from the hospital. I wasn’t hungry anyways, I explained to her. She said in an upsetting voice, are you saying to leave you without dinner until tomorrow morning, are you crazy!? You know, I won’t do that, okay sister do whatever you think is good, and I’ll eat it. She cooked something very simple—simple but delicious—chicken noodle soup. Everyone sat down at the table and ate: my sister, her husband, my two nephews, and one niece. I glanced once in a while at their plates, because they had something different than me. I thought even though mine was okay, theirs looked pretty darn good!
We finished dining and went to take a seat on the couch for a little while to digest the food. We were chatting and watching TV. After about 30 minutes, I decided to go to bed. My nephew allowed me his bedroom that night, because it was right next door to my sister’s one, so she could keep an eye on me.
I was sleeping and around midnight a sudden pain in the head woke me up. It was very severe. I started feeling very dizzy and without strength. I tried to get out of bed and sit down on the edge, but I couldn’t do that. The pain in my head was extremely high and merciless. I felt miserable. Everything was spinning around, and every time I made the effort to get up, my whole body felt weaker.
Finally, after several tries, I managed to do it. However, I had to reach out and hold myself with a curtain that was over the closet by the bed because, if I didn’t do that, I would’ve fallen backwards again. My sister heard me struggle and shouted, “Pancho, are you ok?” I didn’t have almost any strength left to answer back, but I didn’t want her to worry about it; so I made the effort to reply and said, yes, I’m fine sister, even though I wasn’t. I reached out for a pair of pills that the hospital prescribed for me, I drank two and laid back down. After a while, I slept.
Another terrible headache woke me up. It was stronger this time. I tried to get out of bed, but that time was way too powerful. It made me break down. My sister heard me moaning real bad, and immediately ran towards me. She found me struggling in the bed, rolling and tossing and trying to get up unsuccessfully. She was so scared and freaked out. She asked me, “Brother, what happened? How do you feel? Tell me what’s the matter with you?” I could hardly answer her. My voice was fading away. My sight was blurry. I felt like the room, the bed, and everything around me was spinning very fast. “I don’t know. I can’t get up and my whole body is getting stiff.”
Suddenly, I started throwing up weird green stuff and began shivering as well. My sister shouted at my niece to dial 911. She called for an ambulance and told them to come quickly. About 5 minutes after my niece called, the paramedics were knocking at the door. They questioned my sister about what happened, but she didn’t speak English, so my niece told them.
How old was your niece at this time? 12 or something like that.
Then, they asked me, “How do you feel? Can you get up and help us to get you into the ambulance?” My niece replied back, “No, he won’t be able to do that.” Then they put me on a thick blanket, grabbed it from the corners and lifted me up to bring me out of the bedroom and put me into the ambulance. I remembered them asking me questions like, “What’s your name? What’s your day of birth? What day is today?” All the basic stuff. But most of them I couldn’t answer.
When we got to the hospital (a different hospital), everything was confused. The medical staff thought I was high on drugs or intoxicated, because I was still having convulsions and trying to vomit. Thus, they proceeded to make a lot of blood tests on me. My sister was very desperate to watch me (basically dying), but she did not know what to do. Because of her lack of English, and not being able to communicate with the doctors who were treating me, things were even worse for her.
They didn’t provide an interpreter? They probably would have, but she didn’t ask for one.
My sister’s daughter had to go to school, and her husband was on a job, so she was alone in these agonizing moments. She called her husband and asked him to come in quickly to the hospital because I had a terrible relapse. The last thing I remembered was watching my sister and her husband hugging each other, and crying bitterly, like there was no hope left and they were expecting the worst. Suddenly, everything went dark on me. I lost consciousness and went into a coma, I was told.
When you came out of the coma, how did you first communicate with people? I used to blink my eyes to answer yes and no. I closed my eyes if the answer was no, and blinked twice if I meant yes.
How long have you been living in the nursing home you are now? I’ve been living in the nursing home since January of 2007, so over 14 years now.
Is there anything you would like people to know about the kind of life you have now? First of all, I would like to start by saying I feel kinda guilty for my mom’s death. When I was young, I didn’t think of any consequences. I didn’t know I could end up not just hurting myself, but most importantly, the ones I love, my family. I was a very reckless and selfish man. I really look back and I’m so very disappointed in myself. I could have had a wonderful life, but now, I just have regrets. My mama loved me very much, and every time she went to the hospital and saw me lying there helpless, I broke her heart over and over again. So, as a result, she didn’t last long and got sick. So, I would say to those young people, think twice in your actions, because unfortunately, whether you like them or not, people who may be your relatives, your parents, your siblings, or at least your friends, are going to suffer the consequences with you, and perhaps even more than you do. I have been living in a nursing home for so long, and I’m going to the almost senior stage. My living conditions are not so bad! I got used to it. See, I am able to go anywhere, almost, anytime. I had some very tough challenges to get through first, but I made it. I can go to the store by myself, downtown to the community, or just for a stroll. I have some limitations, as expected, but overall, I think, my life is better than before my disabilities.
You are able to get to go to shops and other places in the community where your nursing home is located. What is that like? It is awesome to be able to get out of the stinky nursing home. I love that very much, to breathe fresh air, see new people, visit places, it’s fantastic! I have to sign a waiver so they can let me do whatever. I was supposed to eat pureed food, but I have signed a waiver to eat whatever I want.
You have shared with us that you would like to live in the community someday. What do you think it will take to achieve your goal? With the help of people, good people, anything is possible.
You’ve managed to learn English, get a GED, and earn a web development certificate from your room in your nursing home. How did you accomplish all this? It was very hard. I actually went to the college in person. I had to take special transportation, and I had to have a caregiver with me at all times. Otherwise, I wasn’t allowed to be in the classroom by myself. (College policy, in case of emergency.) I enjoyed going to college, it was fun! I thought it was a great thing to have a good education, and it may help me out at a later date.
How much English did you know before the accident? None.
How have you learned English? I started learning with a bilingual dictionary when I was in a different hospital. I set it on my lap while I was in bed, and they just came to flip the page whenever I called them.
The New York Times wrote a lengthy profile about you and a research study you are helping with at the University of California, San Francisco, to test a new, cutting-edge communication technology. How do you feel about participating in the study and what do you see as some of the contributions you are making to it? I think it’s going to be something really cool and the good thing is that so many people are going to benefit from it.
When we first connected with you a few months ago, you said you hadn’t really interacted with other AAC users before. What has it been like to get to know others who use AAC? I feel very good about that, because they know how frustrating it is to try to speak to someone who doesn’t pay attention.
How do you spend your time when you are not at UCSF or talking to us? I set up in front of the computer, do some work—I have two clients for website services. Or listen to music, or go out for a stroll.
What other goals do you have in life? I want to work on the computer and earn money, so I can provide for myself. I would like to be a web designer and build awesome websites for all kinds of businesses.
You were quoted in The New York Times article as saying, “Not to be able to communicate with anyone, to have a normal conversation and express yourself in any way, it’s devastating, very hard to live with.” What else do you hope other people will learn about people who cannot speak? I hope they can understand how bad individuals without a voice feel but, most importantly, help them to find a way to communicate and express themselves.