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It was the year 2021, and new and exciting things unfolded since then. Both Speech Decoding and Robotics teams exhibited exceptional and highly successful work. July emerged as a pivotal month, as the speech researchers geared up to unveil their findings in a prestigious publication—The New York Times. July 15th locked in as the target release date, I found myself in the spotlight, engaging in an interview with the esteemed journalist, Pam Belluck.
Accompanying this was an engaging photoshoot orchestrated by photographer, Mike Chen, who later became a close friend of mine. When the article finally graced the pages, the researchers, and I were very excited, or as they used to say, “STOKED”. Witnessing my involvement in documented history, possibly reaching a global audience, felt VERY surreal.
Just eight days after the publication, I had the pleasure of celebrating my birthday surrounded by family, friends, and almost all the clinical trial researchers. Dr. Adelyn Tu-Chan marked the occasion with a heartfelt FaceTime call, extending birthday wishes and revealing a message from an individual who works at UCSF, I soon discovered was Dr. Clarissa Kripke. Moments later, Pam Belluck, the reporter, FaceTime me too, serenading me with birthday greetings in Spanish, French, and Mandarin—a delightful moment!
Dr. Clarissa Kripke, was the Vice Chair of the new organization, CommunicationFIRST; whose mission is to protect and advance the rights of people with speech-related disabilities through public education, and systemic advocacy.
They desired my presence on the board of directors, a proposition that stirred conflicting emotions within me, because of my work background. Uncertain of my qualifications and the impact I could make, hesitantly agreed to join this noble cause. However, I still have to be voted in by all the board members then in office, before I could be officially on the nonprofit. The pivotal voting day arrived on November 19th, 2021, and with resounding support from the board members, I proudly became a member of CommunicationFIRST.
The initial board meetings were daunting, but as time went on, I adapted and got more accustomed to them.
In March of 2022, we celebrated the three-year anniversary of the clinical trial that kick-started this transformative journey. Gathering at the Plaza, downtown, amidst the chilly weather, we commemorated the significant milestones achieved thus far.
However, just as we were riding the wave of progress, life took an unforeseen turn. In April 2022, a COVID-19 outbreak shook the nursing home community, affecting numerous residents, including my roommate. Naively thinking I had escaped the clutches of the virus, I received the unfortunate news of my own positive test result on April 6th. I was, temporarily, moved to a different room and put under isolation, I couldn’t go out, at all. So I took it as a vacation, real vacation, and slept in all day, and didn’t get up the bed. It wasn’t because of feeling bad or ill, noooo! COVID was really good to me and didn’t treat me as badly.
I was out of quarantine, and back to my original room on the 14/15 of April. I was so happy to get back to normal, and be able to go out again. Although I wasn’t feeling ill while being isolated, I was exhausted from being in quarantine.
The months flew by, and before I knew it, my birthday had once again crept up on me. July 23, 2022, that year was the big 4-0! As always, it was time to gather all the people I hold dear for a grand celebration filled with laughter, joy, and cherished memories. We celebrated, at the Plaza, as always. I find it hard to believe I’m getting that old already; getting old is great, Don’t take me wrong, I just feel strange. Anyway, we had a wonderful, fun time together, and I just had a brand new GoPro, video camera, to film the beginning of a new chapter in my life.
The following month, on Wednesday, August 24, 2022. I was heading to the office, where we do the recording sessions; the robotics team was supposed to record that day. It was an early, fresh, and sunny morning when an unexpected incident shook up my routine. While navigating my power wheelchair along the sidewalk, a misstep led to a fall onto the street. The impact of the unforgiving cement left me drifting into unconsciousness. When my senses gradually returned, I found myself in the emergency room. The girls, who were waiting for me at the office, were standing there by my side making sure I was okay. My sister was there as well, she got a tremendous scare, fortunately, just a scare.
This was the first time I fell off the sidewalk. I had a few other mishaps, but nothing major, just some close encounters with the bushes 😂 and got stuck in the mud. I was scolded by the fire department, and a police officer, the nursing home, a few times, as well. It wasn’t because I was in trouble, ok that too, but because I couldn’t communicate with them. Nonetheless, I never went down and felt the concrete. Anyway, the researchers stopped recording for about a week or so, because they wanted to make sure I was good to go, and fully recovered from the fall.
Between board meetings, and working with the clinical trial people, we got to 2023, without novelty. As the year began, the researchers started with recordings as well, on January 11th.. The robotics team was going to come up on Wednesdays and Fridays, and the Speech team, only Thursdays, in the meantime. They had some researchers leaving the team soon, so they were trying to find replacements.
Dr. Clarissa Kripke stepped down as the Vice Chair of the organization. On April 21, I was honored to be elected as her replacement and be the new Vice Chair.
July 23rd, was on us already, my birthday, again, a year older. I celebrated, for sure, at my sister and her family’s house.
Thank you, sister and brother-in-law, for letting me celebrate it at your place!
We were a smaller group of people this year, but the enjoyment was very much the same, joyfully!
I summarized the most important things that have occurred in the past, since 2021, or so. I have grown a lot, personally and professionally, also I have also gotten bigger 😂 I tried not to, but it’s hard, I love to eat, sorry, I derailed myself from the subject. Anyway, from the milestones, to groundbreaking research, to celebrations, joining the organization, CommunicationFIRST, and being in quarantine. Well, I did this for you, so I can, hopefully, bring new and more exciting things to read! 👍
On the first day, I was officially approved to go out on my own. I remember I went to the Farmers Market. There’s a little farmer’s market in downtown Sonoma, every Tuesday afternoon, from May to September. So I went over there to have a nice and fun time, and for me, it was extra FUN!
I still had the same problem, as in the beginning, when I was driving my mobile chair. My hand wasn’t getting any better at maneuvering the joystick, so I needed to figure out a solution. I used to go to church every Sunday. Well, whenever I got brave enough to get to the other side of the road. It was December, the most important month of the year for me! I was going to Las Mañanitas of the Virgin Mary of Guadalupe, around 4 am. The morning was so cold, so I wore a very thick jacket to keep myself warm. I was very comfy, and the jacket worked perfectly, but it blocked my reach to the joystick, which made it harder, I was thinking, oh jeez! I am going to have, if possible, EVEN more difficulties driving and getting to mass on time. I was mistaken! I was having trouble, at first, trying to get to the joystick. Suddenly, when I was trying to reach out for the joystick, I hit it with the thick sleeve of my jacket, and the wheelchair was beautifully going forward. A big smile was drawn on my face. I have spontaneous laughter, it comes out of nowhere, for no reason. Fortunately, the streets are deserted during the early morning hours, so I was like a demented person, laughing, by myself to church. Right after that moment, a big idea came to my mind, and a new way to drive, my motorized wheelchair, was born. I thought to wrap around my wrist, a rag, or a towel, and wear it like a bracelet, something thick enough that allows me to drive with my wrist. I tried a few different things until I got it right. Now, I wear a sock filled with stuff, around my wrist, to drive my power chair ever since.
2018 arrived, and two new, major, things happened. First, I started the process of getting a new power chair. I hit the one I had somewhere on the street very hard. It damaged the bar underneath that holds the wheels and it was irreparable. Second, I was enrolled in a clinical trial during the same year led by the University of California, San Francisco. I was so excited to be able to participate in the clinical study, it was a silver lining for me! The research was going to be about two, different, medical studies; helping paralyzed people control a computer’s cursor/mouse and a robotic arm; and trying to make a person speak through a computer interface with their thoughts.
It was super exciting to hear about such a phenomenon! I was required to have surgery on the head, so they could implant a thing called, ECoG, or a Microchip, in the surface of my brain. The Microchip was going to allow the researchers to connect me to a computer system, so they could study my brain.
The year 2019 began, and I was still waiting for the insurance’s approval for my next power chair. In the meantime, I was due to have surgery for the clinical trial. On February 25, early in the morning, I was in the operating room getting the implant done. It went well, I wasn’t in severe pain, or feeling any different from what I used to feel. Everything was very successful, in my opinion.
We started recording on March 8th, at the nursing home where I live. The people, conducting the clinical study, arranged with the nursing home to keep me in a room by myself. It was a room with two beds, so they had to pay for the extra bed. At first, the researchers were coming every day; two days the Robotics team, three days, the Speech Decoding team, and vice versa. Sometimes, even the doctors came, they wanted to make sure the incision was healing well.
In June, the sister of the man from the wheelchair company reached out and said, the new power chair was ready to be delivered. Really? Yes, she replied, when do you want me to come in and bring it to you? OMG! I was so excited, even though I still had the older one. Yes, it was jumping badly when running, but the motor was in great condition. I could keep it if I wanted to, but it wasn’t nice, because it could get rotten, while somebody else could use it. We set up a date for her to come to my place and bring my new mobility.
June 13th was the day we chose. I had a session with the Robotics team that day, but we finished earlier for that reason. The researchers were heading out when the woman was arriving with my chair. I fell in love, immediately, my new substitute legs were so beautiful 🤩 I love it! It was, basically, the same way as the other one, same settings, and performing the same tasks. My older wheelchair can recline back, adjust the footrests and tilt up the whole chair, beautifully, you could take a good nap and rest the back, right there. It is perfect for me because I spend the entire day on the chair, and I’m not a man of steel, I get tired too. My new one has that too, but with one big upgrade, it came with lights for when going out at night.
Let me tell you something about the motorized chair having lights. I requested the wheelchair with lights and a seat elevator, but the insurance didn’t approve any of that, nor the seat elevator or lights. I was going to get nothing but the motorized wheelchair, just like the other one, only in different colors. I got headlights on it, because someone, out there, with a big heart, donated them to me, bless his/her heart! During that very month, I was able to donate my first power chair, as well. A friend from Mexico had a family member who needed a power chair, so she took it from me. I was happy about it because I knew the chair wasn’t going to be wasted. Meanwhile, the clinical trial people were trying to find a different place to do the recordings. The nursing home was too expensive and not ideal, too much going on. We continued with the recordings for a couple of months more, at my place. Then, we transferred to a medical building, ten minutes away, and do our sessions there. Everything worked out well, a new place where to do the recordings, and new hot wheels for me to get there and around.
I always wished to have a power wheelchair since I was in Healdsburg Hospital. I was lying down, and my bed was by the window. I was able to see the road where the building entrance was, and the parking lot, next to it. Suddenly, I saw someone, an elderly person, passing by in a beautiful motorized wheelchair. WOW! I was “blown” away by such an incredible thing! I have to have one, I thought, playing with my imagination, just like a little kid. What could be having one chair like that, where I could go, anywhere I want, and any time I want? I took a sigh, and thought, ah my God! I cannot move my hands, how could I ever drive something like that? I didn’t have the answer, but I thought I was going to have one someday.
A few years later, when I was in the nursing home. I asked management about the possibility of having a power chair. They said Medi-Cal wasn’t approving, power wheelchairs and scooters, for people living in nursing homes; according to Medi-Cal, people living in nursing homes, have everything done for them, so they didn’t need anything else. Then I asked my friends to buy one that a resident, from the facility, was selling for $500, and they did get it for me. I wanted to train myself in the wheelchair, but people from the facility didn’t let me do it; they said, it was not safe for me and the surrounding residents. So the wheelchair my friends bought, resulted in a waste of money. I went a few times to the disability department at Santa Rosa, but it wasn’t getting me many results, so I was thinking maybe, that’s not going to happen for now. I looked at my hands and arms, and I scolded myself, come on, Pancho, you have to be realistic! it was hard to let go, though, I didn’t want to do that.
I had a young roommate, younger than me, it was like my little brother. His mother and aunt used to come to stay with him all day, every day. His auntie gave me the website address for the Christopher Reeve Foundation, it was for spinal cord injuries; they help people with those problems. I was exploring the website, and there was a section to ask for help. I wrote a short message and requested help to get an electric wheelchair. I didn’t think someone was going to answer, to be honest. I was mistaken about that because, surprisingly, someone did see my message, and replied with the interest of helping me to get my mobile chair. I was like, OMG! I couldn’t believe it. She was from, North Carolina, and still lives there. We interchanged several email messages, and discuss all the details about it. Then, she called the social worker at my place, and possibly, other places. Soon, I started getting good results. A man from a wheelchair company, in Santa Rosa, California, came to evaluate me, and to take some measurements; he was a very good and kind person, he asked me what color did I want for my chair, and how would I want to drive it. I told him, I wanted the colors black and silver, and he said, ok. He introduced me to various ways, a motorized wheelchair, could be driven. Nonetheless, I wanted to do the driving with my hand, left hand, I felt like I have a little more control over the left arm. I thought, if I have the joystick on the left side and close enough to my reach, I could do it. I was thinking, he is not going to take my word for it, but he did, and reevaluated me again. I emailed the news to my friend, she became a very good friend of mine, and she was very happy about it.
In July 2013, right before my birthday, I was surprised by my “wonderful” power wheelchair. A beautiful Permobil, black and silver, 6 wheels, two small ones on the front, too big ones in the middle, and another two small ones on the back. Oh boy! I was over the moon! I thought it was the most beautiful thing in the world! When I started driving my new set of wheels, I had so much trouble, my fist couldn’t stay around the joystick; it was very slippery, and my hand came off all the time. Even though it was intimidating to drive, the thrill to be able to move around anywhere I wanted to, was AMAZING!
At first, I was behaving, I used to stay inside the facility all the time, but that was about to change. I began to get outside, just in the parking lot, to get comfortable with my substitute legs. Soon, my desire to go beyond the parking lot started to kick in. The sidewalk was so close to the parking lot, too tempting, calling me, 😝 “hey” come on, let’s venture out! I know you want to, what could’ve happened? Ok, I’m going, but as soon as I got near the sidewalk, I chicken out. I was shaking and full of anxiety, which was new, I never experience anxiety before. It kept calling me, annoyingly! Come on dude, just around the block. I still didn’t dare, as much as I wanted to, my nerves were too much. I have to do it, I was telling myself, and one day I did not care about anything but to make it happen, and “yay” I made it. Unfortunately, employees from the nursing home noticed and went to the administrator, which called my attention, and yelled at me. DON’T DO IT ANYMORE, YOU CAN GET HURT, AND WE CAN LOSE OUR LICENSE! Don’t be too dramatic! I thought, ok, I won’t do that anymore, for now!
They started to be careful with me and kept their eyes open, so I wouldn’t escape again. Next to the facility, on the other side of the street is a little shopping center, CVS, Round Table Pizza, Wholefoods, and a few other stores, were out there. I wanted to go, but now I had two problems to evade, the staff watching me, and my nerves, very serious crap! I knew that going out again was going to be much harder, but not impossible. I waited until the weekend when management isn’t working, and there is not much going on. I did escape again, and luckily, this time nobody noticed. So much for watching me! 😂 I was doing better being on the sidewalk, but not good enough. I took two hours, in a little walk that normally takes 10 minutes. I was going like a drunk man, back and forth, and zigzagging. I was asking myself, man! “how are you going to get to the shopping center, if this requires crossing the street”? I was nervous to go on the sidewalk, imagine, crossing the street!
I remembered the first time, I rolled into the street, I was about to finish crossing when, suddenly, my hand slipped out of the joystick. Santa Maria! I started shaking and felt stiff, unable to move my hand, and placed it back on the joystick. Luckily, I made it out of the traffic’s way. I was just on the edge of the street, touching the bump of the sidewalk. I took a breath and tried to relax, after several attempts, I was able to, sort of, hold on to the joystick, and pushed it forward to the sidewalk. Yay, I did it! I crossed the street, barely, but I succeeded. You might think, because of that scared, I would’ve stayed still, right? Wrong! I actually gained a little more confidence in myself; not that you could say, WOW! What a confident person, but still counts. I thought I could actually be out there by myself, safe in the community. I, carefully, drive myself up close to the Wholefoods, store, and stayed there for a while, still shaking, but calming down! What a feeling! The beautiful feeling of freedom. Sure, I was out there before, but not on my own, my sister and her husband were with me, pushing me in a manual wheelchair. I was enjoying myself when the vehicle of an employee from the facility drove by, he was searching for me, I should say, they were searching for me! Everyone at the nursing home was looking for me, what an IMPORTANT dude! 😂 now I was going to be score returning home, I didn’t have to worry about crossing the street, anymore. Yes, I was going to be yelled at, but that was a good thing this time.
I thought they should let me be, really! I wanted to be able to go out by myself, at any time, crazy, right? I didn’t ask them yet, I, too, thought that was CRAZY, but I kept escaping, very often. They had to put me on an RNA program, a nurse assistant who takes -=+therapy, helps residents take walks, gives a range of motion to them, and keeps them active. She wasn’t going to walk me or give me a range of motion, she had to take me out for strolls and make sure, I wouldn’t crash. I think they were hoping, with the RNA program, I wouldn’t escape anymore, WRONG! the RNA program was just three days a week, 30 minutes, and zero on the weekends, not enough! I kept riding around by myself, sometimes, nobody noticed, but other times, I was caught in action.
By then, I had a couple of years with my awesome power chair, I was feeling more comfortable driving. I started to ask them about letting me go by myself. Of course, they said, no! I was going over the same subject every day. They said, I could go, but if family, or a friend, was with me. It was only fair, right? I’m sure, it was the ideal and the safest way to go. I wasn’t happy, though! I thought, it was no too bad to be able to go out, even if supervised, but I wished to go out anytime, even if no one was with me.
At the beginning of 2016, almost, three years with my hot wheels, I still wasn’t able to go out by myself. My driving abilities were still, about, the same, and my nervousness about driving didn’t improve much, either. I couldn’t figure out how to make them let me be. I told them one way, another way, and another way, but it didn’t matter what I said, and the way I said it, it was a NONO. I wasn’t going to let it go, as much as they kept giving me the same answer. One day, I was in deep thinking, trying to figure out what to do, the best approach, but I had no clue. Then, during the night, I had the best idea ever, I thought, they couldn’t say “no”. I remembered I signed a paper, making myself responsible, in case anything bad happened when eating regular food, so all I have to do was the same thing. I got up the next day and emailed the administrator. I know I live here, I should’ve just gone to the office and talked to him in person, but I usually do everything via email. I explained to him what I wanted to do, but he wasn’t feeling too agreeable with me, and let me sign. I was disheartened, but I kept telling management, please let me go, please let me go; I’m a responsible man, I know I have trouble driving, but I know what to do, what is happening. I can’t drive, but because I can barely move, not because I don’t know how to do it. I also said, if you guys are not letting me go, I will keep escaping, and I won’t care about anything else.
The month of May hit, and I was emailing back and forth with the administrator, over and over, the same thing. I think they talked about the situation and said, we have to do something because he’s not going to stop. I emailed management again, and this time the administrator said, ok, we will give you permission to sign the waiver, and let you go by yourself. I was so excited to hear that, OMG! I couldn’t believe it. It was Friday, so I had to wait until Monday, it was ok though. I waited for years, I could hold my horses for a couple of days more. On Monday, I was called to the office, three other people were there as well. The director of nurses, the activity’s director, and the social worker were going to be the witnesses because I couldn’t, really, sign myself and it was an important thing. I signed the waiver, or I should say, I verbally signed the waiver. HOORAY! I was free to go anywhere and any time, I had a curfew though, I had to get back home, no later than 9 pm. It was okay, I didn’t mind the curfew, to me, it was not a big deal…
In 2008, I wanted to go to college and improve my English skills. It was going to be impossible for me, or I thought, to go to campus in person. How am I supposed to get there, and pay school fees, and materials, like books and notebooks, it was something unthinkable. I made a comment to a friend, and I was told something really cool! This friend advised me, I could take classes online, and for free, these were so good and exciting news. I asked my (CNA) nurse assistant, where I should start, and which school. He was very nice and helpful, and sit down with me to look at the Santa Rosa Junior College website. We found the contact information for some lady there, a clerk, and gave it a call. We thought that person, answering the phone call, maybe, gave us some information, and point us in the right direction. We were in luck, someone did answer and told us where to go. I was able to get in contact with, Nancy Chinn, the person from the disabilities resources department. She told me, she would like to come to my place, and talk, in person, about the matter. So fortunate, I felt! She came with her colleague, Tara Johnson, I don’t remember the exact date, to be honest, sometime in the summer of 2009. We talked about the options, and they thought, my English was not bad, by the way. I could only take free and online classes, I explained to them, okay, no problem, they said. I was able to take English classes online, I was happy, but not satisfied, I wanted to take real courses, more complex ones. Well, at least, I had something to keep my mind busy.
By the end of the year, an American couple, the son, and daughter-in-law of my roommate, I loved that roommate, an elderly man, like my own flesh; they gave me the biggest gift EVER! They sponsored me. I was in a wheelchair, otherwise, I would’ve fallen backward. I used to watch that sort of thing happen in soap operas when I was a little kid, and I thought “oh man” I wish that could happen to me, OMG! Over 25 years later, it did happen. I didn’t have any MULA to pay for school fees before, but suddenly, I had money to take any class I wanted. Since then, I could even go to campus, and see the instructor face to face, all thanks to God, who has been looking out for me; putting such amazing people, like this American couple, helped me succeed in my life.
I could go and take swimming classes, which for a person in such condition, were classes for wetting your “butt” or half of the body, I really like them, anyway. These classes were meant for people, who had some disabilities, and limited mobility issues, so they were able to get some PT. I needed to have somebody with me to help me get into the pool and do therapy, otherwise, I couldn’t take it. I had a caretaker with me, but I needed another person, so one could hold on from my right arm, and one from the left one, and kept me floating in the water, it was FUN! Unfortunately, these classes didn’t last long, I was able to take two semesters, maybe, I’m not certain, but I didn’t qualify anymore. Perhaps, I wasn’t making any progress, yeah, that could be the reason.
I was interested in getting my GED certificate, so I started working in the computer lab at the DRD, a couple of days a week, it was “hard”! I mean, I didn’t have many studies in my hometown, 6th grade only, Elementary school in Mexico. My family was impoverished, and couldn’t afford to maintain my studies going forward, thus everything was new to me with respect to the GED. I was doing good with the simulation testing and studies though, I thought the real exam should be not too bad.
When I felt like I studied enough, I scheduled my appointment for the actual exam. The GED was composed of several lectures, Math, Written, Reading, Science, etc. I took math first, and I failed 😝 yeah, unfortunately, I did bad, bad, bad! I did the same with Written and all the other subjects, 5 in total. Luckily, I am a stubborn person, and didn’t stop until I passed them all, and got my piece of paper!
January 2007 arrived, and it was time for me to transfer to my new facility, I was like, wanting to leave, but wanted to stay, at the same time. I was scared to go to a place that I didn’t know existed. However, it wasn’t a matter of choice, and I knew it.
I arrived at the great London House of the city of Sonoma, California, in a room shared with four residents, including me. I was really sorry, scared, and sad, the only paralyzed, nonspeaking, Mexican, and the youngest resident of the nursing home, most of the others were above 50 and older. The first few days were tough for me, I got very depressed and lonely, missing my nurses at Healdsburg hospital; I didn’t even want to get in a wheelchair, I cried and cried, like a sick puppy for a few days, I put myself together, and started to get up the bed. I asked my brother-in-law for a desk to set up the computer, he did find one and brought it up to the room. I was in the corner, so there was no space for me to set up the desk, two of my roommates occupying the first two beds at the entrance of the room, were scheduled to leave soon. I had to wait for my roommates to get discharged. They left two weeks after my arrival. I moved from bed C to bed A. Now I had almost the whole room to myself, there was another person, a Filipino elderly, in the last bed of the room, bed D.
I had the desk set up, and the laptop turned on, and I started surfing the web. I was getting good at the computer, I don’t know what happened to me, but I was like smartypants since I woke up. Furthermore, I wasn’t too stupid before, but since the accident, I feel more intelligent and thoughtful about life, in general. Anyway, I used to get very tired, while using the baseball cap with the pointer stick because my head bend down all the time. I was quickly adjusting to my new home. I wasn’t adjusting or getting used to eating my food smashed, and drinking thick liquids, they were not tasty and satisfying! I wanted to get regular meals and water, but in my condition, it was not possible. I knew I could swallow regular food, I knew I can, but the hard thing was to make them believe, and that wasn’t going to happen any time soon.
I started trying to figure out how to get the food and liquids regular. I asked around and got some information on the best, and legal procedures, once I knew what to do, I went ahead. What I was told on the food and drinks issue was, in short, to sign a paper, basically, giving up my legal rights, if something bad happened to me, I was responsible, not the facility. I liked that finding! So I asked the management about it, and they tried to talk me out of it, but it was decided already, nobody was going to tell me otherwise. I started getting regular meals csoon after, I could eat anything I wanted to, YAY, VICTORY!