Case Reports

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A Labour of Love

re-ian2James Ian and his “Labor of Love”

James Ian is a soulful singer, songwriter, multi-instrumentalist and actor. All of the songs and instrumental parts on his album, The Labor of Love, were written and sung by him. Born with a degenerative muscular condition called spinal muscular atrophy type 3, he defies the odds on stage and in the studio.

 

I’ve always been determined, ever since I can remember. My parents tell stories of me as a little kid trying to lift the heaviest things I could find, and from point A to point B. Later on in life, my girlfriends would come to call my determination “stubbornness.” Whatever you want to call it, thank God for it, because I’ve needed it maybe more than I’ve needed anything to get me where I am today. Before I tell you about where I am, let me first properly introduce myself.

In addition to being an artist, I’m a law school graduate, which I guess isn’t that interesting, so I’ll spare you the boring details there. I’m also the business operations manager for a cyber-security consulting firm. As I am writing this, I’m just now realizing that my parents are probably right, and that I might be doing too much—they think I should rest more. But I can’t afford to rest, at least not right now.

I was born with a degenerative neuromuscular condition called spinal muscular atrophy type 3. Thankfully, I’ve been able to walk on my own for my entire life, but I have many physical limitations. Although I can walk now, this might not be the case down the road. I tell you this not because I want you to sympathize with me, but to let you know that I’m racing the clock. There are things I must accomplish while I still have gas in the tank and can still be independent, particularly as a musician and actor. To say that time is of the essence is an understatement—so, as I always say, “I’ll rest when I’m dead.”

Now, let’s get back to where I am today. I’ve been performing as are-ian1 solo musician for the last three years and acting more as well (I was an actor as a child, but I took a break from it for some years). Typically I’ll sing and play guitar and/or keys. Playing and performing music and acting with a disability definitely complicates things, but it makes life interesting. By “interesting,” I mean it can also be a real pain in the ass! For instance, I used to be the lead singer and keyboardist for a band called Once Okay Twice. There were a few shows where I fell down on stage (in front of hundreds of people) while I was performing.

Most of the time, I’d just keep singing and, when the song ended, my other band members would pick me up. There were also times where the stage was too high for me to climb onto, and my band mates would have to physically pull me up onto it. Being in the band was great because my mates were like family, and they would always give me a hand. If something went awry, I knew that I could count on them.

However, playing shows as a solo artist is an entirely different beast. For one, I don’t have the luxury of having help carrying and loading gear. My arms are so weak that I can’t even lift your spirits. I normally have to bring my amp (which I can’t lift on my own) to gigs, and I’ll always have to bring my guitar. Both are heavy. I have to have a family member or friend help load my gear into my car before a gig, and when I arrive at the venue, I have to find someone there to help me.

As I said earlier, I’m pretty stubborn, so I hate having to ask for assistance. I kid you not—I once fell down in a gigantic puddle of icy mud in front of a crowd of people and there was no way I could get up on my own. People were asking if I needed help, and I told them I was fine because I thought I could get up on my own somehow. I looked like a newborn deer caught in the headlights on the sheet of ice trying to get up. Yes, I am aware that I’m a lunatic, but it’s extremely difficult to admit you have a weakness. Remember those ex-girlfriends who said I was stubborn? Maybe I am growing, and maybe you can teach this old dog new tricks…

Another obstacle I’ve encountered as a solo performer is if I fall on stage or at a venue, I have to have someone physically pick me up, which isn’t easy. It requires someone to really invade my personal space. It’s always awkward looking up from the ground at a complete stranger and asking them to pick you up. Especially when you have just met and haven’t even offered to buy them a drink yet. Sometimes they want to ask me questions while I’m lying there on the ground, and all I want to do is get back on my feet as quickly as possible.

Life is strange, and living with a disability adds an element of surprise that makes it even stranger. Without a doubt, my daily experiences keep me on my toes—except when I’ve fallen down! There’s a lot that can go wrong everyday, which, I’m sure, scares the hell out of my family and friends. Luckily, I’ve made it this far and, in some ways, defied the odds. I’ve had to work extremely hard and I’ve heard many times that I’m “not supposed” to do half of the things I do, or play my instruments and do gigs.

I’d say I’m living proof that you can do what you want in life. You can even have some laughs along the way while living with a disability. I’m very lucky to be able to sit here and write about what I’ve accomplished as a professional, and as a human-being navigating life in general. Honestly, I’m having the time of my life. I’ve got lots of stories about my experiences as a musician and actor, and there are many more to come. So, stick around, and maybe I’ll tell you a few more. The show must go on!

Reprinted with permission from Disability Horizons

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