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Deb’s NMO Story – Doctor, Do You Love Me?

Posted by: The Sumaira Foundation in NMO, Patient, Uncategorized, Voices of NMO

The bad news is that apparently I’m about to die. The good news is that both my fantasy doctor boyfriend and my ex-husband are at my bedside for this moment… 

I’m in the hospital with a collection of mysterious and life-threatening symptoms. My heart monitor is beeping at a speed that seems un-survivable and I feel like I’m being squashed in a giant panini press. I’d like someone to save me. 

This morning I sent an urgent text to anyone who might care,

I can hardly walk and can’t speak properly from whatever this is. I am feeling desperate.

But now that I’ve been relocated to an actual deathbed, things are looking up. I’m at last getting a marriage-worth of attention from my ex-husband. He’s a) here, b) hasn’t yet taken off his work backpack and is c) hovering by the bed like an anxious snail. This is amazing but I have eyes (four, because I suddenly have double vision) only for the dazzling young physician who sits on his haunches by the bed, puzzling over my condition. 

My ex-husband and I, after a whirlwind romance, passionate elopement (yes, Elvis walked me down the aisle) and a devastating divorce (at least for me) have developed a cranky brother-sister type relationship. I’d often wondered – did he still love me? Or was he simply trying to assuage his guilt at stomping his rock ’n roll cowboy boots all over my heart? 

Twelve years younger than me, it turned out that for all of his musician’s bravado, my ex-husband was wildly envious of the life I’d lived and the loves I’d had. He couldn’t decide who or what he was more threatened by. Was it the ghost of Clayton the funk musician who’d walked me across the Brooklyn Bridge, taken me to Juniors for cheesecake and then, with this winning formula, back to his Flatbush bedroom? Or was it John, the cook/driver/mechanic on my six-week African trek who’d shown me more than just how to kill and cook chickens and where to hide contraband when crossing international land borders. Honorable mention: the gentleman he found on my not-well-hidden-enough sex conquest list named only as “guy in car in Connecticut”.

(This became a snarky joke – “someone called for you?” “Who was it?“ ”I think maybe it was guy in car in Connecticut?”)

Perhaps in retaliation I chose to be bitterly jealous of my ex-husband’s sole prior love, the bohemian goddess Anna. He’d worshipped her since high school and written some of his best songs about her (and not me). We’d been at her wedding in Big Sur where she was not only beautiful but dressed for the occasion as a fairy princess. Her Mom actually said to my ex-husband in front of me “I always thought you’d end up swimming in my gene pool”.

Not because of Anna but just – anyway – he left me – us – after three years. There was a stated desire to experience more life and more loves. I would have stayed. 

So. The initial deathbed moment has passed without my death but there now exists a throuple. My ex-husband and my now beloved, Dr. Ross, and I enter a surreal suspension of time where we seem to be connected in some kind of karmic assignment to ensure my survival. This consists of me consuming an assortment of mind-altering drugs, me enduring endless tests, me meeting a circle of specialists sought out by Dr. Ross, their faces zooming in and out at me like some kind of wizard trance dance, me begging for therapy dogs (if I’m dying, I want all the things) and my ex-husband working the red tape to procure some “goddamn therapy dogs” (three, eventually). Of particular note: the swallowing study, the digestive aftermath of which affects both my own pipes and the hospital’s to such a degree that an emergency plumber is called. One night there are urgent midnight stretcher rides across darkened hospital bridges with Los Angeles twinkling just outside. That’s Beverly Blvd and there are people at the ATM. How can they be getting money out when there’s a clot in my heart so big it looks like a face? 

My crush on the handsome young doctor blossoms with every bizarre day. I love Dr. Ross for his intelligence, empathy, humor and ability to examine me (tenderly?) with his stethoscope while ignoring that I smell like (actual) death. He’s seen the two terminated pregnancies and the miscarriage on my chart and heard me, totally high, referring glibly to “my dead kids”. His face lights up every time he enters my room, leading my brain-on-steroids to explode with our romantic possibilities. 

I email him. 

Permission to take an assisted shower

Are you able to grant this for me? It would change my life. If I could sit in there with the nurse with the water running? They won’t let me without your permission. THANK YOU!

He responds.

I am able to grant this for you. It has been granted.

Like a Doctor Genie!  

My ex-husband and his backpack show up dutifully to the hospital every day. He doesn’t realize that the pedicure I insist on my friends giving to my pig feet at the end of my wolf legs, is solely for Dr. Ross. My ex-husband calmly receives my 4am phone call from the ICU insisting that my organs are being harvested by the staff there (they call this ICU delusions). Friends describe my ex-husband’s devastated reaction as a priest prays over me on a day when it is touch and go. Him waiting outside the OR as doctors place a filter into a vein in my neck and thread it down to my heart to stop the clots from entering. “Everybody in this hospital is messing with my HEART” I think. I have all of my ex-husband’s attention now. He does still love me.  Also, he’s no longer wearing the cowboy boots. 

I text Dr. Ross a collage I make on my phone using my brain MRI as a background. I draw hearts, flowers and write “I love you” on it. I had meant the “I love you” as a message to the lesion on my brain, thinking that if the lesion and I become friends, it will be better for us both. But I realize this may be open to misinterpretation by one Ross, Dr. G. When I am finally diagnosed with a rare neurological condition, and a side of pulmonary embolism, it is Dr. Ross who comes to my room and sits quietly with me while I weep.

I have survived. Dr. Ross is reassigned. Is that an intimacy hangover I’m feeling or just deep gratitude? I’m discharged the day before my birthday and my ex-husband helps me to throw myself the funeral party it so recently seemed I might need. On a whim, I put Dr. Ross on the e-vite list. 

There are margaritas and tacos and I play my funeral playlist. I’m happy, but sad I can’t fit into the vintage pink dress I thought I would wear in my coffin. 

The party is winding down when suddenly, almost in a flash of light, almost wearing a cape – in bounds – yes – Dr. Ross. “Got any fresh juices?” he cries “No one likes a drunk doctor! “ 

Rrrrrrrrreeeeeekkkkkkkkk! There is record scratch moment where my friends of the pedicure-giving variety examine their skepticism and I allow myself a little deep girlish triumph. This is extra – right? Doctors really don’t usually do this – right? 

He really does love me. 

But really, he doesn’t. He still sees me as sick, a patient with a diagnosis. 

“How are you feeling?” he enquires earnestly. 

“FANTASTIC!” I squeak, trying not to support myself with my hallway wall, trying to look as sexy and un-sick as possible “SO GOOD! LIKE, WELL.” 

Now here, I pause to say – you may think that as the moral of the story is revealed – when you’re sick you may fall in meaningless love with your doctor but your ex-husband is the one who will buy the margarita mix – our story draws to its natural close. Friends, it is so not over yet. 

My ex-husband (thrilled to see his throuple brother of the past weeks) and Dr. Ross get to chatting (oh my damaged heart). How’ bout this cute coinkydink – they are the same age and grew up in neighboring towns. Both are musicians!

And as they chat a new factoid is slowly..impossibly….improbably but – of course? #becauselife – revealed –  

Dr. Ross was also once romantically involved with Anna the Bohemian Goddess.

Perhaps I’m actually hallucinating? Or even dead? Both of the men I love were once with this bohemian Boadicea lady who just won’t stay out of my love life?

Dr. Ross and Anna dated in college. They really did. 

As I try to regain my composure, Dr. Ross also reveals that he is an ethnomusicologist who plays jazz guitar and taught music to kids in Uganda while he was in Doctors Without Borders. He’s perfect, and I’m just his patient. He’s perfect and he was in love with bohemian Anna. He’s perfect, and I love him and I am not dead but now, I die.

In death, it comes to me – this. These two men not only fought for my life but have come to my house to celebrate me, the steroid filled survivor of a rare neurological disease and a giant face-like clot in her heart. Here at this birthday-faux funeral are a years ago ex-husband and a fantasy Dr-lover who has seen me wearing mesh panties and a sanitary pad. So actually, I did end up with the lovers. Anna, I got all the love, me.

Was it ever even really about her? 

Dr. Ross keeps in touch and he even came to two of my Christmas parties. My ex-husband put his boots back on, still plays the annoying kid brother; and never stops loving me. He remains friendly with Anna, who was very glad that her old lover was able to save her other old lover’s ex-wife’s life.  And now that I’m fully alive again, and the blood is flowing freely to my heart and brain, I find that I have enough love for everyone.


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