Prepare to be entertained by the thrilling saga of Dorie's fearless teenage driving escapades! Little did Dorie Shapiro know, she fancied herself a walking catastrophe, especially in places with less illumination than a glow-in-the-dark firefly. And as if that weren't enough, she was blessed with a congenital hearing deficiency. But wait, the plot thickens! It turns out her chaotic existence was all thanks to Usher Syndrome Type One F – and no, it's not some newfound musical genre by the renowned Usher!
Dorie Shapiro is a sociable individual with an insatiable appetite for adventure and a deep passion for dogs. She hails from the scorching landscapes of Arizona, where she was born and raised. By day, she assumes the role of Vice President of Customer Experience at an assistive technology company, tirelessly seeking ways to promote inclusivity. By night, she embarks on quests to discover the finest spicy margaritas accompanied by delectable tacos or indulges in wine paired with pizza, all depending on her mood.
Transcript
I was 11 years old when my parents started sending me to sleepaway camp for several summers. And it was not just any typical camp, it was a Jewish camp in Malibu. And, people, you imagine they're right by the beach, it is absolutely not right by the beach, but, rather, in the mountain overlooking the ocean. It's safe to say that it was beautiful, but it was surrounded by trees and lots of dirt roads and rocks and just absolutely no ocean in sight.
One of the things that I really remembered about that camp for those several summers is that I really dreaded and hated those Friday nights. Why is that? It was because during those Friday nights, we would make our way up to the chapel to do our service there, to start the Shabbat.
And don't get me wrong. The scenery is absolutely beautiful from the chapel, because you can actually see over sea, like, all of the ocean and the trees and the scenery is absolutely beautiful. But the trek to get all the way up there and all the way back down to the camp ground it is definitely something I always dreaded every Friday night.
It was around sunset, so the sun is about to set and the pathway would become so narrow that it's like a single‑person line. I remember that my best friend Alex Farber from birth will only have to lean back to lend me her arm so that I would not fall, because there were no railings. There was barely any lighting and the pathway was full of dirt and loose rocks, so it was not necessarily the most secure way.
It would never really make sense why I felt super uncomfortable until later. We found out that I had a genetic disease that made it all make sense now. It's called Usher Syndrome Type One F and it causes profound deafness at birth and progressive blindness. That meant I would be losing my vision over time.
When we found out, it was right around the time that I was about to get my learners permit and start driving so that I can get my driver's license. And I had this mindset that I was going to be the coolest person, because I had a late start in school to learn how to speak with my speech therapy and everything, so I was going to be the oldest person with my incoming freshman class. So, I was so excited that I would be the first person in my entire freshman class to get a driver's license and be that person to get a car.
And I thought I'd have the coolest high school life, because I would be the one that I can drive around often and we don't have to rely on our parents to get anywhere. I could just be that go‑to person.
It's safe to say that while we had our reservations about what this meant with my vision, I made a promise to my parents that if anything ever changes in my vision, I will absolutely let them know and make that decision about my driving.
At the time, though, I thought that I was good to go. High school was smooth sailing. I got to be that cool girl. I even learned how to reverse park.
I went into college and I would also be the person with a reliable source of transportation, because a lot of my college friends were from out of town, out of state, and so they didn't have a car. So, I was always the person to give people rides. I felt that super awesome person, like, that independent, just get in a car and just drive everywhere. It was such a thrill.
And it's safe to say that all of that came to a crashy end my senior year of college when I started feeling really, really uncomfortable behind the wheel. I just didn't feel as secure and confident behind the wheel as I did when I first got my driver's license.
I knew that I had to have that really hard conversation with my parents about what did that mean for my future and what did this mean with my car, what did this mean for my driver’s insurance. All of these things raced in my mind. I'm about to graduate college so there's a lot of things that are racing in my mind, but I knew that this was something that I could not put off.
And so I was home for the holidays. My dad is in the kitchen, paying the household bill. He's watching the Diamondbacks game. He's wearing his glasses and he's wearing the old Diamondbacks’ team color, the purple shirt. He's leaning back. He had the iPad popped up with his favorite D‑team, because he's so worried about his team. And he's paying the household bill.
My mom was just hanging in the kitchen and we had just finished dinner. I wasn't sure if I was ready to tell them that night, but I knew I had to rip off the Band‑Aid. I had to tell my parents, because I just would not go drive anymore. It was such a really hard decision to make, but I knew that I just had to get it over with.
I remember that outside it was pitch black, because it was nighttime. The time change had already happened. My dad saw me walking kind of slowly and with a very serious look on my face. He turned down the volume on the TV and said, “Honey, what's going on? I can see something’s on your mind.”
I took a deep breath and I started crying. I told my parents that I no longer felt comfortable behind the wheel and that I knew that my vision had gotten worse. I just did not feel that it was safe for me or anyone in the world for me to continue to drive.
My dad and my mom looked at each other. Their eyes started to swell up with tears and they both knew that this was a huge decision for me, because this meant I'm giving up such a huge independence on my life because of this genetic disease. That this was not in my control but something that I had to do.
And they were equally so proud of me for making such a hard decision that was really safe for everyone, but also sad because this meant that this disease is just a reminder that it's not going anywhere. Yet, it's just another obstacle that we just have to learn how to overcome.
My parents, the three of us, we hugged each other. My mom and my dad both said that they're so proud of me, because they knew it was really hard for me. They said, “We got this. We will figure it out. We will get your car sold. We will make sure that we get the best resources for you, that when you're done with college, you'll be able to live independently. We will figure it out, but do not fret. This is not the end of the world. It's just a little blip in the future and we just have to keep moving on.”
I was really, really thankful for my parents. We hugged, we cried a little bit and then we each kind of said, “You know what? On to the next challenge.”
Little did I know that the future was actually right around the corner, that I no longer have to rely on friends and family members to drive me around. There were ride‑shares over there. Uber and Lyft were just coming into fruition.
I will say, those conversations that you would get in the car, oh, my goodness. I remember this one conversation where I got in a car and the driver just point‑blank said, “You're really, really pretty. Are you single? Do you have a kid? Are you living with anyone?” Oh, my goodness.
Those things, those conversations, I've never enjoyed those kinds of conversations, but I am so excited to share that, now, there are driverless cars over there. No, no, I'm serious. You call up a car. It comes. There's no driver behind the wheel. You get in the car and off you go to your destination and you don't have to utter another uncomfortable answer to the driver.
So, I'm learning, you just learn how to keep rolling with the punches and onward to the best.