The Last Time MS Was My Sick Little Secret

The Last Time MS Was My Sick Little Secret

The last audition I ever went on was four years ago, and I sucked. I sucked so bad. I’d taken the subway to this cattle call and exited from the wrong platform, which meant loads of extra steps to get to where I was going. In the heat of August. In heels. Once upon a time, I was a singer.  
Though I’d been living with multiple sclerosis for several years, this final attempt to get a gig took place during the last of my pre-mobility aid days — that blurry time when I mostly looked fine, but one step too many and I’d turn into a wobbly, hot mess. 

No alcohol necessary. 
MS must have turned me into a slow learner too, because I was always shocked and never prepared for these debilitating bouts of weakness and instability. As a non-driving, transit-taking city-girl, I’d regularly find myself out and about, suddenly slow and barely able to carry myself. Cars would honk as I dragged my heavy, disobedient body across the street, wondering how nobody could see how desperately I needed to sit. More than once, I’d called The Banker to come get me with the car when I was crashed out on a sidewalk, defeated and humiliated, 100 impossible steps from home. 
So it was that I’d arrived at this audition, stunned again by how fast those extra steps had fucked up my legs, and completely closeted about what was going on with me. 
In the singing world, multiple sclerosis was my sick little secret. 
Somehow I managed to get through the audition. Somehow the panel managed to refrain from asking “So, do you need an ambulance, or like, are you just drunk?”. The thing we all had in common was the thought, “What the fuck are you doing here? Is this a joke? I thought you were a singer.”
At the time, I didn’t know that that last audition would be my last audition; but as I process things now, it stands out as the turning point from which that part of my identity officially started to die. More likely the dying had started long before, but like any proper break-up, it’s impossible to pinpoint the exact moment when things start to go to shit.
Doors don’t always slam shut. Sometimes they close so softly, it isn’t until long after that you realize they’re dead-bolted behind you.
It’s been a full year since I last sang in public. Since I last sang at all. Singing stopped bringing me joy when it got to be too much to get through a coaching. After working so hard for so long, my heartache was real when, breathless and weary, I realized I could no longer stand and sing at the same time, and the sound I was producing was thin and tired. What had once been a tonic had turned into a toxin. And not the good kind, like opium or botox; more like some sketchy mushroom that a forest troll talks you into.
What a tragic story, right? The thing is, I don’t really dwell on this; it’s not in my nature. My opera singer dreams had been modified, tempered by the reality of MS, years before this last failed foray. I’d accepted long ago that I was never going to have a ‘real’ singing career, and was content to study my craft and do the odd professional, mostly choral, gig. 
Because MS can make you settle. 
One minute you’re resentful, raging against what’s being taken from you; and the next, you’re consumed with gratitude to cling to any version of what was being threatened. It didn’t take me long to feel less like I was settling and more like I was lucky to do this amazing thing at all. 
I had a world-class teacher who had invested in me like I was a star, though he knew I never would be. I was so happy to just be in the studio, it didn’t really matter if I never performed (though actually I did have a handful of stage-door days). I was only in competition with myself, in pursuit of my own personal best. Singing was a kind of therapy for me. Probably because singing is a lot like screaming, but with less swearing.
Looking back, I can see that as music was being quietly ushered out of my life, writing was nudging its way to centre stage. This happened organically, without conscious intent; without my even noticing. Writing was something I never could have predicted would be just as rewarding as singing, and in some ways more so. Where I always struggled to figure out what was unique about my voice in a sea of sopranos, as a writer, I do know my voice. I know exactly what I want to say. Mostly it’s the F-word, and we’ve already clarified that you can’t really say that in a recital. 
I definitely heard this as “She who has a wine to live for.” I hear what I want.
I still think about singing from time to time. Every now and then I’ll hear a song or see a pic from my not-too-distant past (thanks, Facebook memories) and take a second to wonder about all that has changed; to wonder at how many versions of ourselves we get to experience in one lifetime. I think what I actually need, what any of us needs to keep going, is purpose. And right now, that purpose is writing. So, thanks for reading, Trippers.

Oh, and just in case you wanna creep a version of the old me, here’s a peak at a song I recorded in another life. It’s a love letter to The Banker. It’s about, well…you’ll figure it out.
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17 thoughts on “The Last Time MS Was My Sick Little Secret

  1. O Ardra – this is beautiful. And your love song. We follow – at least I do – because you manage to put into words so much of what we go through. The slow-learner was so me back in the day. And I have gone through being planted on the sidewalk in NYC asking a passer-by to hail a cab since one more step wasn't possible. Your knack seems to be to help us describe this setup – to ourselves and to others.

  2. So I decided to creep a version of the old you and HOLY MOLY!!!!!! That was incredible. Not that I am a fan of slow moving stuff like that but WOW!!! I was impressed. I’m more of a Foghat and Led Zeppelin guy but I do come from a musical family. And I so relate to your article. I was sworn in as a lawyer in 2009 (at 40 years old), dxd in 2012, quit working in 2014 and remember my last day of work like it was yesterday. Representing a client in a criminal trial, picking a jury and afterwards telling the judge there was no way I was going to run a trial in the shape I was in. This MS stuff sure is somethin else. Thanks for everything you do for this MS’er Tripping.

    JE (Jonathan Mitchell Elsenbroek aka Johan)

  3. Eloquent discription of that frightenng transition from mobile to not. I remember well the day I could took a spectacular fall getting off the Metro escalator as I returned to my office from a meeting on Capitol Hill. Then another fall leaving the commuter train station. So demoralizing to recognize independnt mobilty and some career paths are coming to an end. I admire your ability and determination to succeed so well in another direction.

  4. I remember the end of my pre mobility aid days were so similar to your description. Took a taxi one block once. Love your posts!

  5. Que sera, sera?
    I find that my memories are stronger than my body. I remember that I could stand and lecture a class of undergraduates for three hours. And half of them would go to sleep. Now the whole class would stay awake, wondering what's wrong with the professor. And possibly thinking about going to the front office to ask for their money back.

  6. Thanks for posting Sharon. Sounds like you had an exciting career. The things we put ourselves through.

    I tripped on a step and fractured my elbow, and a few months later fell backwards off a curb and cracked open my skull before realizing it was time to start using a rollator. So many layers of reinvention going on. It feels good to take control where you can.

  7. JE, thanks for sharing this story. This hurt my heart. I hope you're finding a new kind of purpose after having to give up so much. Damn this disease.

    Thanks for reading and for all your comments…I still have to get to your 'ask me anything' question. It's coming!


  8. Hi Sheryl,
    Thanks for posting and for sharing my song. I checked out (and signed up) your website and it's great. I look forward to exploring it more.
    In the meantime, you can also find Through Your Eyes (by Ardra Shephard) on Spotify and itunes.

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