How To Recover When MS Steals Your Purpose

Hint: Find a new purpose

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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How To Be Weird With A Newly Diagnosed Loved One

My next edition of Ask Me Anything About MS, deals with what happens when a diagnosis of multiple sclerosis is received. Spoiler: Everyone wigs out and things get awkward.

Audrey Larkins asks: 
Hi, Ardra. I just stumbled onto you. I'd love to know what you would say to someone newly diagnosed in their early 20s like me, like yourself. What is the most important piece of knowledge you would choose to pass to them?

And nooyool2018 asks: 
Knowing what you know now, what would you say to a younger you when you were diagnosed with MS?


So, my answer doesn’t totally match these questions and that’s because I already wrote this post about how I used my white-witch time-turner skills to travel back to my own dx and give myself the best advice ever, which you should totally read. But first.

Since it’s not just the newly diagnosed who need a little insight into this especially fucked-up time, but also everyone around them, I’m offering up some tips you can passively aggressively post to your social media in the hope that your most blundering friends and fam will be like, Shit, Am I being weird? I better read this, stat

It can be hard to act normal in an abnormal situation. Lucky for you, I'm here to help.

Disclaimer: This is the part where I remind you that I'm just a blogger with a big mouth. My own love language is mostly gin and sarcasm. This is what I needed, but everyone is different. 

How to be weird:
Ghosting because you don't want to see your loved one ‘that way’. Or maybe you’re worried you’ll say the wrong thing. Maybe you just hate being around sick people or hospitals. 

Why this is weird: 
You assume the sick want their space, to be left alone to process their scary new reality. That’s me giving you the benefit of the doubt. But, if you’re just ick’d out around illness, it’s time to get over yourself. It’s okay to not know what to say; even saying the wrong thing is better than saying nothing. Text. Call. Show up. Otherwise, it can feel like you can’t handle it, or worse, you don’t care. 

How to be weird:
Saying things like: “You’re gonna beat this; you’re a fighter.”, “You’ll never end up in a wheelchair." 

Why this is weird: 
People don’t get pulverized by MS because they didn’t try hard enough. Hope is great, but you’re not a fortune teller, or maybe you are, but that’s not a thing, so you should probably stop pretending you can predict the future. If shit goes down and MS does its worst, these kinds of remarks can lead to guilt and self-blame on the part of the patient. And you didn’t want that. You only wanted to make me feel better.

How to be weird: 
Comparing this to your sister’s co-worker’s aunt who has MS and is like, totally fine.

Why this is weird: 
You don’t actually know Aunt Franny, or that she’s totally fine. Multiple Sclerosis can sometimes be what’s considered an invisible illness. MS is vastly different in every person; no two cases are alike.

How to be weird: 
Comparing this to your mom’s neighbour’s niece, who had MS but is like, totally dead. 

Why this is weird: 
You’d think this would be obvi, but these are dumbed-down times, people. There’s no need for you to remind me about Annette.

How to be weird: 
Planning a secret girl's weekend to NYC and not inviting me because you don’t think I can keep up. 

Why this is weird: 
Yeah, I heard about that.  

How to be weird: 
Taking my picture at the hospital, mom.

Why this is weird: 
For the love of vodka don’t post anything to social media. It’s not your news to tell. 

How to be weird:
Referencing kale in any way.

Why this is weird: 
I can’t.  

How to be weird: 
Telling me everything happens for a reason, God’s plan or whatevs.

Why this is weird
If that’s your belief system, cool, but don’t assume it’s mine, or that I’ll feel better knowing you think that some higher power has it in for me. Ask Jesus what I did to deserve this on your own time. You don’t get to decide this is a blessing in disguise. 

How to be weird
Asking, "What can I do?"

Why this is weird: 
Just do it, Nike. Figure it out. Wash the dishes, walk the dog, get the groceries. When going through the trauma of a new diagnosis, even simple decisions like red or white, can feel like choice overload. (Hint: it's summer so, rosé.)

How to be weird: 
Saying things like "This is just a minor setback, a bump in the road." Or, "Turn your wounds into wisdom."

Why this is weird: 
Don’t give me any of this Oprah bullshit. Everybody that ever lived already knows that bread is awesome, and nobody needs these useless platitudes. Let the newly dx’d indulge in their drama for 15 minutes. We have the rest of our lives to act strong and reassure everyone around us that we’re actually okay. 

How to be weird: 
Qualifying your own problems with "But that’s nothing compared to what you’re going through".

Why this is weird: 
Yeah, your bad credit or that time you had impetigo is nothing compared to my incurable brain disease, but constantly saying so is like saying ‘things are tough for me right now, but thank God I’m not you’. Don’t do it. Everyone has their shit. And impetigo is gross. 

How to be weird:
Downplaying the good things that are happening in your life.

Why this is weird:
Just like shielding me from your problems, not sharing the good things that are happening because you’re worried about my fragile psyche, robs me of my role in our friendship. Most of this advice boils down to just be normal. You can’t solve MS, but you can help me remember that I’m still the same me by being the same you. Keep feeding me gossip and Miss Vickie’s chips, and know that I can handle more than one thought at a time.

How to be weird:
Pretending you’re not just as upset or afraid as I am.

Why this is weird:
I'll always remember the time, months after D-day, riding in the car with my girl-boss bestie, Lisa, when we both broke down and ugly cried over what I was going through. After weeks of feeling like I was in an alternate universe, where I was the only one aware of the freaking apocalypse, I felt validated to be reminded that people who loved me were also impacted. You might assume it's obvious, how much you must hate this too, but I didn't feel protected by those who kept those feelings from me; I felt more alone.

A new diagnosis is a scary af time. I remember feeling most supported by presence and presents. So, remember to show up, but like, bring stuff. Because if ever there is a time to be wrapped up in a cozy blanket of love, it's during the trauma of diagnosis. If that blanket is made of cashmere and you get to keep it, even better.  

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