April 17th, 2012
05:43 AM ET
Editor's note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn't know they possessed. This week Chief Medical Correspondent Dr. Sanjay Gupta introduces us to Noah “40” Shebib, a music producer who was diagnosed with multiple sclerosis in his early 20s.
Q: What was it like to receive that diagnosis as such a young man?
A: It started with sensory issues. I woke up one day and all the temperature in my body was distorted. My sense of hot and cold and what that meant to my brain was very confusing. Any time something like that happens to your body - which is very difficult to explain when you have MS - is that your brain is tricked, so your nerves are telling you something that's not true. Any time your brain is telling you something that's not true, there's a little bit of trauma for your body in general to understand what's going on, so you're a little bit in shock.
I went to the hospital very quickly after that and was diagnosed within a couple of weeks. It continued to escalate to a much worse place in a month, and I spent the next two years of my life getting back on my feet.
Q: What exactly were your sensory problems like?
A: It's a funny story. My leg was just on fire when I woke up one day. I was at the studio. I had fallen asleep and had woken up at 2 o’clock in the afternoon the next day, and my first initial thought was, “Oh, I must've fallen asleep by the heater or something. My leg is really hot.” Then I got in my car and the floor heater was only on, on the left side. I thought, “That's interesting.”
You know, you have all these other explanations except that your brain is telling you something that's not true. Then I get home and I sit down at my computer, and I'm thinking the heater is just blasting hot air down there. “Where is that heat coming from?” Then I put on my boots and I said, “Oh my god, this boot is really hot. This boot must've been beside the heater.”
You always have an explanation, and of course it led me to understand that something was definitely wrong, which led me to the hospital, and as I said - by the end of that month - I was off my feet and not walking.
Q: What was it like to be off your feet, unable to control your own body?
A: I would say it was inspiring, as bizarre and twisted as that may sound. I tried to see the best light of it and how I could use it to my advantage.
In an almost shallow twisted way, I said, “I’ve got this disease I'm going to live with it. I'm going to win with it and my story is going to be that much better when I get there.” I made that decision very early on in my diagnosis.
I remember lying in my hospital bed and they have the little table they swing across your bed to put your meal on, and I quickly put my meal on the chair beside me, put my laptop and the little keyboard, and went directly to work in the hospital bed. Luckily enough for me, I don't think anything will ever be able to stop me from making music.
Q: What’s the hardest part of dealing with your disease?
A: I think one of the biggest struggles people with MS face is trying to define it to people and explain how it manifests itself. It's very difficult, you know. This morning I had to lie down on my bed to get my socks on because I couldn't bend over. You know, that's not something I tell anybody. Then the things that I deal with on a daily basis are usually pretty miniscule, so I keep them to myself, but they add up, and it's hard for people to understand that.
So I'll say to someone, “Oh, I can't do that today. They’ll say, “Yeah, but you were playing basketball with us yesterday.” They don't understand why or how, and it doesn't make sense to a lot of people. It's very difficult to grasp the concept.
People are confused, so they result to the obvious answer. "Oh well, that's probably because this happened. Oh, that happens to everybody. Everybody's tired today. Oh, we've all had a long week." That's the most frustrating thing for me in the world, because you're taking for granted how hard I work to be on this level with you.
I try to stay quiet about that stuff. I don't need to have a parade about how hard I'm working. It's just exhausting explaining to people what you have to deal with if you're trying to keep it quiet and just trying to live a normal life.
Q: People ask why don’t you just try harder, get a little more sleep, or have another cup of coffee?
A: It's funny, you know, one of the things I deal with is sports. I played hockey my whole life. When I was diagnosed, I was probably on the ice 5 or 6 times a week at that time. I haven't really stepped on since. Every few years, I stop myself and say, "What are you doing? Why don't you go play some sports? Stop being such a baby! Get out there!"
The first time I did that, I was on the ski kill and got stuck halfway down because my legs went numb on me. I was on the snow for about 40 minutes before my friends came and rescued me and dragged me down the hill. Then another couple years go by and I think to myself, "What are you doing? Come on! Go play some hockey!" I jump on the ice and skate with some friends and then don't walk for a week after that.
I'm constantly forgetting even myself what the repercussions of my disease are. I'll be like, "Come on! Get up! You can do this!" So not only is it difficult for someone else to understand, it's also difficult for me to understand.
About this blog
Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.