Empowering Journeys: Milestones, Celebrations, Challenges

by | Chapter 4 & beyond


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.

Clinical trial 3 years
Clinical trial 3 years

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!

Luz y Flor

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! 👍


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