Welcome to the Matthew Cicanese Podcast: a fusion of neurodiversity, technology, and storytelling. As a DeafBlind photographer, creative educator, DEIA speaker, AI strategist, and National Geographic Explorer, I bring a unique lens to exploring how diverse minds shape (and are shaped by) the digital world. Join me for insightful conversations that unveil the unseen, merging personal adventures with transformative ideas. Together, let's discover the untold stories at the intersection of the mind and technology.
In this special episode of The Curious Lens, my mom shares my personal story of surviving a deadly case of meningitis as a one-year-old baby, and how it resulted in my becoming DeafBlind. I will take you on a journey through my Hero's Journey, starting when I was only one year old and spent a month in the hospital, half of that time in the ICU. You will discover how my experience as a survivor led to a long road to recovery and rehabilitation, ultimately resulting in my discovery of photography.
Hey, everyone. You're listening to the curious lens. I'm Matthew Sickones. In today's episode, I'm going to be talking to you about my beginnings and how it all got started with a pretty rough start. When I was born in 1991, everything was going great. I had about nine months of pure bliss when I was just being taken care of by my parents and kicking off my first year of life. But little did I know that an ear infection I got would eventually lead to me being in the hospital, battling for my life, and unbeknownst to me, not knowing whether or not I'd make it out. I'm fortunate to say that my mom was there for me the whole time. Now, I don't want to spoil the story and as a matter of fact, I'd like her to tell it to you. Years ago, I interviewed her for a short audio documentary called I Just Want to Go Home. I produced it as a school project when I was studying at Duke for my documentary masters. I hope you find it meaningful and I'll see you on the other side. You were a perfectly healthy child, never had any problems with you. And I had had you to the doctor several times for the ear infection. And your brother's birthday party came around and we went to the birthday party and you didn't look good. And then I'm carrying you around outside and you started kind of dry heaving and you had a really high temperature. And I said, I'm taking him to the emergency room.
I finally laid down at about 10:
00 at night. We were in a room where there were several cribs and mothers and I can remember laying on the little fold out reclining chair next to you and you were whimpering and I could feel the heat coming off the bed and I thought, that's so strange. And I got up and I came over and I touched you and you were so hot, just burning up with fever. And you screamed. When I went to pick you up, you just did not want anything. And I called the nurses, they took your temperature and you were 105 and a half. And so they got iced down apple juice and ice packs. And we started packing you with ice packs and I was trying to get you to drink cold juice to cool your core down. And there was really nothing more they could do. Through the nightmares. Tried to flex your legs at your hips and you'd let out the most terrible blood curdling scream. He said he has meningitis. I can tell you that right now. I just need to do a lumbar puncture to confirm what it is and how to treat it. What you had was penicillin resistant, so that greatly reduced what they were going to be able to use. They didn't offer us a whole lot of hope at that point. All your limbs were icy cold because your vital organs were beginning to shut down. The hope was quickly fading. Your dad and I pretty much lost it. We were in the middle of a hallway near Radiology, and there were people everywhere, but it was like a loud silence. We sat in the hallway and cried and pleaded with God and made all kinds of promises if he would just spare you. And you came out of the CT scan and they took you back upstairs, and they said, if he makes it to the nightmare. So we prayed all night. And at that point, they said you had had a small stroke and that it had affected your left side, and it was the pressure on the brain, the spinal fluid. And we couldn't understand why the antibiotics weren't working because the pressure was still so high. And when we got to come in and see you after they were done doing whatever it is they had to do, your left eye was closed and the left side of your face had palsy. Your mouth hung open. You had eleven lines coming out of you, between the tube, down your throat tube, down your nose, into your stomach, numerous IVs oxygen on your nose. Just incredible tubes and lines everywhere. If I wanted to hold you, I couldn't have 22 days in the hospital. They did all these labs and stuff and said, okay, he's ready to go home. He's going to need physical therapy, he's going to need occupational therapy. They did a hearing test on you, and you were deaf on the one side. The neurologist and several of the doctors that worked on you over that period of time said, he may never really be right. You're lucky he's alive. He's deaf in one ear. He's going to struggle, but you survived. What a wild ride. It's been 30 years figuring out who I am and how I fit into the world, and this square one was the genesis of all that. I don't remember being sick. I was only a baby. But I do remember every step of the way changing because of that sickness. It meant a lot of different things along the way, but ultimately, it taught me to be a better human. I was kinder, more curious, more thoughtful, and better at figuring things out than I might not have been if I never got sick. Each of us has our own challenges, so please don't get me wrong. This isn't a pity party. This is more of a pep talk. No matter what you're going through, find a way to look at the things around you differently. I had to do this because of my loss of sight and hearing, because of my speech development issues, because of my cognitive issues and my memory loss. But I didn't let it stop me. In fact, I was the youngest kid in my karate dojo, and they almost didn't want to let me in. But I was insistent saying how curious I was about the world of karate. Wanting to learn the art form of tongsudo. I was really excited when they accepted me. Seven years old and ready to rock. But that's a story for another time. I'm excited to share these different stories because I've always wanted to, but never have taken the initiative from being bullied in elementary school. And a sea of different challenges on the way to college and beyond. Have learned that adapting to survive is part of who we are. And I feel like I'm quicker at adapting than others. But of all the things I tried when I was a kid, nothing really ever stuck the same way that photography did. In the next episode, you'll learn why my camera was the missing link in my life and how a little forest up the road changed my entire world. Until next time. Stay curious.
