My first power wheelchair | Part 2

My first power wheelchair | Part 2

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. 

My first power wheelchair

My first power wheelchair

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 could see the road where the building entrance was and the parking lot beside 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, and 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 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 exchanged several email messages and discussed 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 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 had the joystick on the left side and close enough to my reach, I could do it. I was thinking he was 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 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 of being 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 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 I chicken out as soon as I got near the sidewalk. 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 told 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, who 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 wasn’t working and there was 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 and did a walk that normally takes 10 minutes. I was going like a drunk man, back and forth, and zigzagging. I asked myself, man! “how will you 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 sidewalk bump. 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 fear, 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 he still counts. I thought I could actually be out there by myself, safe in the community. I carefully drove close to the Whole Foods 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 scored returning home. I didn’t have to worry about crossing the street anymore. Yes, I would 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 that with the RNA program, I wouldn’t escape anymore. That’s wrong! The RNA program was just three days a week, 30 minutes, and zero on the weekends, not enough! I kept riding by myself; sometimes, nobody noticed, but I was caught in action other times.

By then, I had a couple of years with my awesome power chair and felt 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, after almost three years with Hot Wheels, I still couldn’t go out alone. My driving abilities were still about the same, and my nervousness about driving didn’t improve much. 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 wouldn’t let it go, as long as they kept giving me the same answer. One day, I was deep thinking, trying to figure out what to do and 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 remember I signed a paper, making myself responsible in case anything bad happened when eating regular food, so all I had 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 what I wanted to do, but he didn’t feel agreeable and did not 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 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 won’t stop. I emailed management again, and 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, but it was okay. I waited for years, but I could hold my horses for a couple more days. 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, which was important. 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…

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