Meet the Faces of MS: Nick 1


Nick Zaino is a man of many talents.  He’s a freelance writer who’s covered comedy for the likes of the Boston Globe and the Boston Comedy Blog. He’s also written about music at BDC Wire,  Paste, the (dear departed) Phoenix and many, many other places.  He’s also a musician and has been busking, on top of regular gigs around Boston.

Oh, and he has MS.

When two writers and musicians get to talking about things they have in common, it can get verbose, but stay with us! You’ll enjoy this…

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“MS can be very powerful and it can crumble you. It can take things away. Important things. But it’s not the most powerful thing in your life, even if you have it, or it doesn’t have to be. You can give it the finger and keep doing things, keep going, even if you have to adjust how you’re doing them.”

What lead to your MS diagnosis?

I got a burning numbness that stretched from the back of my neck to my chest and a numb right hand. My doctor suggested shingles at first, but then the burning went away and the numbness started to move around my body, from my right hand to my whole left arm, then into my middle section (which led to an embarrassing emergency room visit), then down into my legs and feet, but never all those places at the same time. I had an MRI, and MS was one of the suspects, but it was another year before I was officially diagnosed. I went through physical therapy to get rid of a limp that had developed and get the strength back in my muscles. I lost the ability to play guitar for about a month, and as a songwriter, that was incredibly scary to me. I sat down with the instrument and couldn’t even place my fingers where they needed to go. I had to move my fretting fingers on my left hand with my right hand, and then I didn’t have the strength to push them strongly enough to make a chord. I was seriously considering how I might write on some other instrument and that maybe I’d have to become a real musician and learn notation. Luckily for me, the therapy helped, and my therapist told me that playing guitar and drums was good therapy for me to work up strength and dexterity.

I also had a spinal tap in the middle of this, but the lab messed up the test that would be most informative about MS. I was very worried about the spinal tap, especially once I learned there would be no anesthesia. It wasn’t as bad as I’d feared, but they did have to tap me twice. They try to tap you as low as they can to stay away from the parts of the spine that could potentially cause problems if they disrupted them, but they couldn’t get fluid with the first tap, so they did it again, and then tests they were able to do didn’t indicate much. I had lesions on my spinal cord, though, and eventually that was rules MS. I am lucky in that I don’t have any on my brain, and the seven lesions on my spine have been basically stable since I started medication. It was about a year from that first burning numbness to the time I was finally diagnosed. Then I had to learn what MS really was, which is not an easy thing to grasp, and figure out what I wanted to do for treatment.

 What’s the biggest hurdle you’ve run into, professionally and/or personally, in dealing with MS?

Energy is a huge problem, and I have a couple of other things that complicate that. I had just been diagnosed with Type II Diabetes when I had my initial MS attack. Those two things together, I think , are responsible for rapid declines in energy that force me to stop what I’m doing to grab something to eat (which doesn’t always work) or try to sleep. That’s compounded by the fact that I am a writer and a musician, and have a tendency to work late at night on more creative endeavors. I can’t really sleep through the day because that’s when I need to be talking to editors and interviewing people for my journalism work. And I can’t always sleep through the night because I wind up staying up late to write songs or work on short stories or even write with a work deadline in mind. So my schedule is fluid.

It would be best if I followed a stricter sleep/meal schedule, but my brain doesn’t always work that way. I can improve things by forcing myself into a more regimented schedule, but something always comes along and breaks it. It might be a matter of just disciplining myself, but that wouldn’t resolve the problem altogether.

A byproduct of that is that it can be hard to concentrate on the project in front of me. My energy sometimes dips when I’m transcribing an interview or writing, and I can fight through it or wait it out. That just adds to the time it takes to finish something. And since I’ve had a few health scares in the past several years, I’ve been motivated by the idea that my ability to do the things that I think define who I am could be limited drastically or even taken away completely. So I’m working harder to finish things I should have done years ago. I’m finishing up my first full-length album of original material and working on a book of interviews with comedians I’ve done over the years writing for the Globe, the Phoenix, and other publications. There are days when I’m pushing myself harder than I ever have and it just breaks down, and I have to accept the fact that will happen and find a way to keep working. I have it easier than a lot of people who have a strict nine to five job, but it still affects my work.

 

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Has public disclosure hurt you in any way? If so, how?

I don’t think it’s hurt me in any way, at least not in any way that I know of. I’ve been open about it but I have sent everyone I know any sort of notice, so there may be people I know somewhat well who will read this and be surprised to hear I have MS. When I was first diagnosed, it was on my mind a lot when I talked to friends and colleagues, and it was hard to know how to bring it up.

“Hey, how ya doin’, Nick?”

 

“I have MS! How are you?”

 

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It’s not the most natural dialogue in the world, but I felt I needed to say something, if only because I was somewhat preoccupied by it and I wanted to get it out of the way so I could get back to a normal conversation. People talk so much about their maladies and anxieties these days that it almost feels like bragging to mention it. That could be my own ridiculous anxiety, but it made me nervous to talk about it, to make it clear that it’s something I’m dealing with, and fair topic for conversation, without making it seem like I was dropping a bomb.

My case also isn’t very advanced, so I don’t have the worst symptoms others display, so again, I’ve gotten off relatively easy so far. There are people faring far worse than I am, people who are having a much worse time of it, and it’s hard to say I have the same thing they do, because those people are fighting so much harder and my experience doesn’t compare. Yet, the reality is, I have this, and I’ve been reassured by doctors it is manageable, especially at this stage, but another attack could be out there. That’s often lurking in the back of my mind. I could wake up and have that same feeling I had when I picked up my guitar and couldn’t play it. It could be back to those same fears, the ones I’m convinced I would handle in a practical, rational manner, but could change my life, and my wife’s life, and perhaps others around me in some way. So there’s a feeling of obligation to have it out there, because maybe it might wind up affecting others in some way, too. Or perhaps the lesions are being created because my spine is pressing against my enormous, jagged ego.

What would you like people who know nothing about MS to know?

This is hard to say because I didn’t know a hell of a lot about MS before my own diagnosis. I knew it put Richard Pryor in a wheelchair, a man who abused himself perhaps more severely than any other human had and stayed on his feet. If MS took Richard Pryor down after everything else he’d been through and put himself through, it had to be something strong and serious. And I had read about Jonathan Katz, and eventually spoken with him about it. I saw a show of his I think the day after Pryor died, and he opened with the line, “I am now officially the funniest living comedian with MS,” which drew some silence and indrawn breath from the crowd, and then he tagged it with, “I’m going make Teri Garr wish she had Lupus.” I laughed at the sheer bravado and gall of that line, especially delivered with the understated, deadpan tone that Jonathan does so well. A lot of people didn’t laugh, may have been offended. My own symptoms and diagnosis was years away, but I think the line is even funnier now.

 

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“I am now officially the funniest living comedian with MS.”

 

So here’s the thing – MS can be very powerful and it can crumble you. It can take things away. Important things. But it’s not the most powerful thing in your life, even if you have it, or it doesn’t have to be. You can give it the finger and keep doing things, keep going, even if you have to adjust how you’re doing them.

There are too many awful diseases and conditions out there to expect the general population to research them all and have a working knowledge of it when you inform them you have that particular thing. But if you know someone with MS, know there are different stages and symptoms, and that you probably don’t have to be all that careful when you address it with them. For a lot of people, it’s an adjustment, but they are still keeping a full plate and doing things everyone else is doing. So don’t be afraid to ask questions and have a normal conversation about it. That’s the best help I can think of if you know someone who has it. And if you want to help in a more general way, there are plenty of charities to donate time or money to. Or you can come see some Crash Safely shows and help yourself, too.