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…