a photo showing my first power chair, my second power chair and the day of my surgery for the clinical trial

My first power wheelchair | Part 2

by | Chapter 3

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!

Farmers Market

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. 

a photo showing the sock I use to drive my chair with.
a photo showing the sock I use to drive my chair with.
saint francis solano-catholic church of Sonoma
Saint Francis Solano Catholic Church of Sonoma, Ca.

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. 

a photo taken two days after my surgery, at the University of California, San Francisco.

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. 

Photo of me on my first recording with the robotics team
Photo of me recording with the robotics team

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. 


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