Independence Day

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I’m going to do it. I’m going to quote Bono.

No, not U2’s lyrics that have left me many times goosepimply over the 30+ years I’ve been a die hard fan, but one of Bono’s eye-rolling pontifications (even for me, the woman who still can’t get his 1992 “Achtung-Baby”-black-leather-catsuit out of my head) upon this amazing country I call home.

“America is an idea. The idea that you and me are created equal. That idea belongs to everybody who wishes to serve it.”

I know. Lame. I’m a decent writer, so why would I quote a rock star who wasn’t even born here?

Well, I wasn’t born here, but I am an American citizen.

It was November 1996, and Kevin and I had driven our cherry-red, used Toyota Tercel from Toronto, due West across Route 66, and into the smoggy, bedazzled heart of LA. What a cliché. But it was our cliché. We even wore matching tracksuits as we sang along to Nat King Cole along every golden mile.

Venice Beach boardwalk! California sunset! Sparkling American flags on baseball caps! Dude! I was smitten. So, so, so stoked. Spine erect, ambition ablaze, I turned to my new husband and saluted my future. Watch me! This 28-year old was going to conquer Hollywood in one fell cinematic swoop, claiming stardom for her very own.

Saw the pamphlet. Heard the call. Registration complete.

I was now in service to myself.
But something happened on the way to Superstardom. It didn’t. And instead of saluting my homeland, I was now giving it the finger, while the other hand threw back opiates, benzos and speed.

From dabbling to desperation to devastation.

100% dependence.

Drugs usurped my blind ambition as I became drawn and quartered by addiction and began serving a life-threatening new idea: Pills would fix everything.

(Spoiler alert: They don’t.)

When I got sober, it took me a long time to understand what addiction is. That it is a disease that did not excuse, but explained my behavior. But for a long time, I struggled with recognizing the difference between being a reprehensible woman, and having done reprehensible things.

I was just very, very sick.

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness.”

Today, my grateful and sober heart pounds this belief: We are all created equal. I am just sick. I am not bad.

America, I believe, is very, very sick right now, not bad. It is a choice. To love those whom it’s harder to love: the addicted, the criminals, those-of-reprehensible-actions. The megalomaniacs, those-who-do-not-recycle, the Kardashians. But they are equal. To him. To her. To you.

All men are created equal. And worthy of Life.

I got sober in America.

I found freedom and independence from drugs in America.

I found my God in America.

Today, I love America even more than ever. Every morning, as I squint into the California sun, I am granted a divine reprieve. Dude! Today, I get to love, to help, to serve an idea bigger than myself:

The idea that we are all created equal—in sickness and in health.

I’ve heard the call. I’m here to serve.

You made this 4th of July complete for me. — Dale Stewart
You are incredible! Such a gift with words! I have read so many of your posts and laughed, hurt, and had tears streaming down my face. You are amazing, courageous and I thank you for your candor, honesty and vulnerability. You are an inspiration and a gift! — Marin May
You are so wonderful! — Elizabeth Rose Figuls

Slap It On

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It had to be April, maybe May. 1992. Spring in Toronto. Our season of lust, lilacs and paint brushes.

I had just finished theater school and was heading off to perform at the Shaw Festival for the summer. You had been cast as a “Marius” understudy in “Les Miserables,” and would travel across Canada and Hawaii for 8 months.

The plan was for you for move out of your basement room in the house you shared with 4 other Winnipeggers in Toronto’s Greek Town, and take my room in the condo I rented with my friend, J. Just for a couple of months until the “Les Miz” run began.

I love lists. For me, they remain the pulp and paper version of narcotics. (Calm down. It’s not like I’m inhaling Post-its or anything, but man, there’s nothing like the feeling of dragging your pen through an item you just completed. A-HEM. Is it getting hot in here?)

That day detailed a particularly long one for the both of us. Packing. Renting a car. Moving. I don’t even remember HOW we rented a car, seeing as I was the 23-year old Torontonian weirdo who walked / subway-ed it everywhere and sported no driver’s license, and you were only 19 and couldn’t even rent a car.

Then of course, we had to carve out long periods of time to moon at each other. That was paramount everything. We were newly dating and had much to learn.

“You like dogs? OMG, me too! You like me? OMG, I like you!”

I can still picture you. The shaggy, theater-stud mullet you’d been instructed to grow so you’d resemble a rebellious youth from the French revolution. You wore grey Roots’ sweatpants—the Old Skool ones with the beaver on the side. You were standing there scanning the faux wood-paneled walls (is there any other kind?), arms folded and tucked up into your armpits in what I would come to learn was the trademark McIntyre way. J. and I stood amongst the packed boxes watching you access the situation. So much to do and your room still hadn’t been painted. But we had to return the van.

“I’ll just come back later. Slap on a coat of paint. It’ll take like an hour.”

J. and I turned to each other and lost it. Like died.

“Slap on a coat of paint!!!”

Like it was so easy. Like you could just juggle all these balls. Handle all these things and then come back and love me long into the night.

But you do. You just pick things up. You own them. And you shine.

You picked up your 18-year old life and moved to Toronto to sing. You picked up a camera and began a second career. On our wedding day you picked up your bagpipes and simultaneously blew my mind and my eardrums. (WHOM had I married?) You picked up a course, a new language, and a new love. #shabbatshalom

And in 2011, you picked me up. Again and again and again. Your list grew long. Endlessly long. The more you crossed off, the more appeared: Take pictures. Pay mortgage. Give wife kidney. Watch addiction nearly kill her. Love her long into the night.

Like it was no big deal. But, I know it was. Now, I finally know.

Yesterday, I watched you stand in the middle of your beloved downtown studio space, point to the scuffed up walls, and explain where you would once again just “slap on a coat of paint.”

I suppose it's not very PC to gush over your husband, but when have I ever followed the rules? You inspire me, Kevin—to “slap" more and “list” less.

I know you will miss this space. But there will be another one, sweetheart, to be revealed after your 8-week singing sabbatical. First, you’ve gotta shake your spandexed booty and belt out some ABBA. (MAMMA MIA! I cannot wait!)

This is your destiny, my Renaissance man. To pick things up and shine each and every time you do.

Tears. So great. — Kelly Lester
What’s happening to my eyes??? They’re leaking. — Bernie Pastorin
That was beautiful. — Stefanie Wiens
I think I just fell in love with both of you. That was beautiful, Henriette! — MJ Denton

Dear Furless Father

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Dear Furless Father a.k.a. Kevin,

Thanks for every night I sleep beside you on your $2000 mattress even though it hurts your back.

Thanks for putting up with my unruly and unpredictable bursts of pee/poo/puke as I waddle ever deeper into Seniorland.

Thanks for our morning back-and-forth growling contests over Mom's sleeping body. (Yes, I am aware you have the bigger d**k.)

Thanks for every time you earnestly inquire, Who's a good boy? Although you might want to give that one a rest. At this point I'm pretty clear it's me.

Thanks for the nights you curl around me and retell the story of my adoption. Even though I picked you guys ONE YEAR EARLIER when you were taking pictures of the hounds at Daphneyland and I climbed right into your lap. (HELLO! Get a clue!) Apparently some bitch named Maggie May needed yours to be a "one-dog" home. (Diva.)

But most of all, thanks for my forever home. Even though you and Mom have a curious lack of fur (especially on your heads!), I have loved each and every second of the last 3 1/2 years with you guys.

Love, Wahlter White the Basset Hound.

P.S. More Milkbones, please

You are amazing and gifted Henriette Ivanans! Great post! They ALL are!!! — Marin May
So funny! So touching! — Darlene Weege
And that is why you are a gifted writer. You tell a beautiful story, Henriette. — Kim McIntyre-Leighton

L.

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She died a week ago yesterday.

We were not friends, but we were both “friends of Bill.” I will call her L.

On May 10th, I visited L. on the oncology ward at Cedars-Sinai. When I entered her room, the sight of her was heartbreaking. Gone were her wigs, any trace of makeup. The shell of her encompassed every horrible cliché of the Stage 4 cancer patient: thin, hunched, and bald. Plastic worms wiggled from her arms and nose into the machines that perennially beeped and blinked.

But these were not the first sounds to grace my ears. As I slipped into the group of sober women surrounding her bed, L. was talking.

“When I came into Alcoholics Anonymous, I signed up for the whole enchilada.” And, despite expressed anger and resentment toward her God,

“I still believe that God is.”

Tears sprung to my eyes. My heart cracked. I had been looking for L. my whole sobriety.

After we dropped hands and the final strains of “It works if you work it…” were absorbed into the stale air of her sealed hospital room, I broke from the circle and approached her bed.

“Can I hug you?”

Through her thick-framed glasses and oxygen mask that had been returned to her face, she blinked, then replied,

“Yes.”

I leaned over and pressed my lips against the tufts of white hair sprouting from the top of her skull. Warm. She was so warm. Comforting. Why? Why did I feel so connected to this woman?

L. was encouraged to take a walk before she got too tired. Five of us, including her nurse, completed one lap of the floor. I couldn’t help but be reminded of the number of times I had been an inpatient at Cedars and found such joy in the simple act of hitting the tiled ground—if not running—shuffling. Pre-dialysis, post-kidney transplant, mid-Ecoli poisoning, or mid-barbiturate overdose, I would stubbornly drag my free-wheelin’ IV pole beside me as an unwilling child.

“C’mon! A walk’ll do you good!”

Later, my welling eyes would blink as they followed Kevin down the hall toward the elevator. Then blink again as he turned the corner and disappeared. The hallway lights would flicker off, and in the darkness my resentment would rise. Alongside the opiates or benzodiazepines or hypnotics that swam through my bloodstream, self-pity and justified anger would froth hot, churning, fighting against the drugs that were meant to bring me relief from pain.

But I would always succumb.

Back then, I knew no other way to deal with pain. I had no other medicine than drugs and anger. And I certainly had no God.

Pushing my sleeves up, I watched as L. folded herself into a mathematical shape—all angles—back into her hospital bed, and sighed. Hugging my burning arms to myself, I was very aware that today, I was the one who got to leave.

When she would leave Cedars-Sinai a week later, it would be in an ambulance home to hospice.

For much of 2016, inside the 12-Step rooms we attended, I would watch as she entered and took her seat. I knew the posture. Rigid. Resistant. Holding a body against itself, against pain that threatens to consume if you breathe the wrong way. What you really want to do is shuffle off your mortal coil and whip it across the room, watch it smack against the wall, then slowly, agonizingly slide to the floor, as you relish the satisfying thud of its death.

I listened when she shared. We chatted on the phone a few times, about how meditation gave her relief from resentment and pain. And I would agree to speak on her monthly panel. (Panels consist of recovering alcoholics and drug addicts like myself who go into hospitals and institutions—jails, treatment centers, sober livings—and share the message of how they got sober with The 12 Steps.)

Jan 31st was a beautiful Southern California evening. We met at the corner of San Pedro and 6th in a guarded parking lot. Four separate cars. Four sober women. Skid Row.

The air was rank with urine, body odor, and desperation. The sidewalks that bordered the parking lot were littered with dark and bloated bodies, tattered towels cluttered with everything, anything that might fetch these broken souls a dollar or a dime.

L. looked beautiful. She emerged from her car elegant and tall through her disappearing frame. Her bony shoulders sported a black bolero jacket, subtly embroidered with sparkles. They twinkled, catching the light of headlights that zipped through the crowded downtown intersection. I knew what she was doing—at least, I like to think I do—for I was doing the same thing. She was showing up in style, honoring the program that has freed us from the bondage to drink, to drug, to Self, even as the air around us was thick with it.

“Can I give you a hug?” I asked.

“Yes.” she replied. Then coughed.

Up on the 9th floor, the four of us assembled in a small room, ready to share our stories with homeless and low-income women struggling to get sober. Assuredly, L. laid out our 12-Step literature. She coughed again. The three of us would each speak for 15 minutes.

“You’re not going to speak?” I asked.

"No.” L. replied. But, oh, I was disappointed. I had been looking forward to hearing more of her story—her “drunkalogue” as we call our drinking histories. Her cough continued. The force of it scratched my throat.

“Do you want one of these?” It was a generic Rite Aid Eucalyptus-flavored cough drop.

“Yes. My mouth sores from the chemo are really painful.”

My heart squeezed. I turned to the group of eight women and shared my story, ever aware that although it hurt L. to even speak, she had still shown up.

Post-meeting, the four of us stood in the parking lot, saying our goodbyes. The night air soothed my skin, warm, rife with hope. None of us will ever know if those women got sober, but it changed us. It always does: One alcoholic talking to another. Different races, transgender, homeless. It doesn’t matter. This disease transcends every possible boundary society can construct. As does recovery.

“I really related to your story…”

“Me, too...”

That night, we all spoke the language of the heart. Even L. who had barely said a word.

Especially L.

I would purchase a bag of those Rite Aid cough drops and leave it inside my car for the next time I saw her, but they would melt inside the coffin all California cars become in the light of day. L. would begin chemo again, and I never gave her its replacement.

On Tuesday May 30th, I would visit L. at her home for the third and last time.

My heart was pounding as I left two bags of groceries for her family in the kitchen. The apartment was still. No music. No television. Just her brother tap-tap tapping away on his laptop. Her mother welcomed me inside, as L.’s beloved dog circled around me suspiciously. No sister. No sponsors. No sober women. Just L. asleep on a hospital bed, her pale body vanishing against the white sheet. I scanned her face, wrinkle-less, soft, her skin looked so soft, her lips drawn into a thin line of peace. Oxygen tubes tucked gently around her ears. I stroked her arm. Her eyes flickered open.

“I want to thank you. You changed my sobriety.”

It took a few seconds, to make her lips come together, bend and form the words,

“I’m glad.” Her lips struggled again.

“You don’t have to talk.”

“Okay,” she smiled.

She closed her lips. I would go home. L. would die 4 days later.

In the end, we did not fulfill the traditional definition of friends, but we share this:

We love our dogs as children. We are both swimmers. We love makeup. She wanted to be Kevyn Aucoin. I worked as a makeup artist for a brief minute. We suffer with chronic illness and pain. We are sober women. And we have a God.

Even as we struggle with resentment and pain, we have a God.

I will miss her. I will see her in meetings. I will think of her every time I have one of those silly Eucalyptus cough drops I now carry in my purse all the time.

And it will remind me that none of us need do pain alone.

Lovely picture of this experience you had with L. Only you could put it into such poetic verse. She had such strength and courage. I know you have the same, and the identification with her was strong. What a gift it is that we can share that with each other within our inner circle. Thank you for your description of your closeness and what it meant. — Elizabeth Duarte
Unbelievably touching. Poignant. Resonating. Powerful. YOU are a woman I want to know more about. Thank you for sharing so vulnerably...Meeting you tonight and seeing only your physical strength and fitness, warm smile, open heart, joy in watching my child, one would never know the depths you’ve lived as a human and woman. You seem so perfect. It’s helpful and telling to be reminded things are not always as they seem. Or look. Not sure where I’m going with this ramble except to say thanks for sharing. — Ginette Rhodes
Graceful and lovely. — Michelle Stevenson
Such a beautiful reflection on such a beautiful soul. All kinds of feels with this one. — Shannan O’Mara VerGow
You’re a great writer! Such kind words. Life is precious! — Julie Sells-Gomez
Oh my goodness, this is beautiful. — Sara Huffman
God gifted you with the ability to express yourself so eloquently and beautifully. — Karen Bartell
Such beauty in your words. — Rita Montanez
Spectacular, my darling friend. Just spectacular. — Margot Rose

To Have and to Squeeze

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This is my favorite picture from our wedding day. And not because I am not in it. I used to hate every picture of myself—believing my gigantic Prednisone-induced moonface could be seen from, well, the moon.

I can smell the Toronto spring air, redolent with lilac blooms and relief from winter’s passing. It was the first warm day of the year. 25 degrees Celsius. A veritable Canadian heat wave.

I now know you were upset because Ralph (a.k.a. Mr. Beagleman) would not sleep with you on the bed on The Night Before Wedding, punishing you for my first-time disappearance.

But look at you! My boyfriend, my fiancée, my Kevin.

Look at the adorable scrunch on your 22-year old face as if to say, “Mum! Seriously? Why are you taking a picture of me walking?” But can you blame her? You are picture perfect. Tailored tuxedo, Diet Coke in hand, marching down Geoffrey St. towards a rented minivan full of McIntyres, toward your future. Toward me.

It would be a perfect wedding. The Cinderella gown. Friends serenading us. A single long-stemmed rose for every woman. Even the mix-ups were perfect. The lost-then-found cake I never got to taste. Because I was so late to the chapel, the paused video camera would shut down, and there would be no record of the ceremony. But there would be no need. I will never forget the squeeze of your hand as you recited, “…in sickness and in health…” My heart stopped, and my life with you began.

But marriage is different from a wedding. What does any 22-year old know about “…until death do us part” when your life is just beginning?

If some kind of prophetic presence had been able to slip you a laundry list of the slings and arrows of outrageous fortune we would endure over the next 2 decades as reading material for your drive to the church, would you have asked your Dad to pull a screaming-U-turn and head straight for the Trans-Canada highway back to Winterpeg?

No, Bridezilla never materialized, but Wifezilla sure did. And our story would swell to sometimes Shakespearean proportion. For many years, a Hametian cloud of doom and gloom hung over our cabin in Shadow Hills. But for some time now, a glorious and sober light has been shining down on us. It’s time to remove the bookmark from “Volume 9: The Hen-On-Pills Years” and place it high upon the bookshelf to collect dust.

After 22 years of marriage, much has changed. Now we own, instead of rent. I have your kidney instead of Mum’s, and we’ve both lost our hair. You found Judaism. I found pills. And then I found my god.

But one thing hasn’t changed. You are still walking towards me. You never veered off course, even when I did.

Sweetheart, my Kevin, there is no way to erase our stranger-than-fiction days. You were many, many days and nights stranded alone, betrayed by my pharmaceutical tornado. How many times was “I love you” lost in the winds that threatened to destroy us both?

So today, let me take those 22-year old hands in mine again, and vow to love you “…in sickness and in health…’til death do us part…”

And finally squeeze back.

One of the greatest love stories and ongoing evolutions I’ve “witnessed” through your sharing. Thank you for letting us see the depth and complexity and fierceness of your love. — Carmen Leilani
Pure poetry, Henriette. — Paige Moore
Amazing. Beautiful. Touching. — Johanna Moorehead
Your writing makes me pause and breathe pure joy. — Ann Lantello
We spend our entire lifetime trying to make sense of what love is. You have found a way to articulate it, and bring our hearts to a humbling understanding. — Susan Kohler
Here I am in Italy enjoying your writings, my dear friend. — Dale Stewart

Date Night

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Date night. Dinner and a movie, right? Or maybe a concert?

As a Canadian, it’s almost sacrilegious if you can’t get down with Bryan Adams’ no-frills, rock sound. I have loved Adams since I was 14 years-old and he crooned from an empty swimming pool about how love Cuts like a knife. If you look closely, my high school BFF and I can be found banging our 16-year old heads, fist-pumping into the Toronto night air in the video for Adams’ rock anthem, Somebody.

Saturday afternoon, Kevin had just purchased 2 tickets to Adams' concert that night. I was down with it. Kevin was down with it. Date night! Bryan Adams! Goosepimply teenage feelings activate!

5 minutes later.

“Sweetheart, it’s happening again.”

His eyes were bloodshot. His skin a 4-alarm fire red. A trembling hand held his upper arm in an ominous grip.

40 minutes later we were back in Burbank's St. Joe’s ER. Barely 12 hours after we had left.

Date night was indefinitely postponed.

At 10 pm on Friday May 19th, Kevin had been admitted for sudden and massive pain in his head, tightness of chest and an all-over body rash. 6 hours later, after a CT scan of his head and neck, and an EKG, he was discharged with steroids and pain meds.

Cluster headaches. See a neurologist. Hmmm.

I've had chronic migraines from about the same age I began rockin’ out to Adams, and something about these diagnostic dots did not connect. But after IV fluids and medications (40 mg Prednisone, Valium, Morphine, and Reglan), his head pain was better. By 4:30 am we were back in bed with one mightily confused basset hound—Time to get up? What? No? Time to sleep? OK! Zzzz.

As we checked into the ER at 4:30 pm on Saturday May 20th, Kevin’s symptoms had intensified to include all-over itching resulting in scratching until he bled.

This ER physician was able to properly diagnose Kevin. Scombroid. I know this sounds like a fancy, turn-of-the-century insult—Oh, you scombroid!—but it is in fact, an extremely rare food toxicity usually found in fish. (In this case tuna steaks purchased at Sprouts in Burbank. Just sayin.’) Contamination occurs at the point of storage. When improperly stored, growing bacteria produces the Scombroid toxin. This poison consists of histamine and histamine-like chemicals that caused the death of two Australians last year.

My husband would be prescribed IV Ativan, 120 mg of Prednisone and Morphine for his head pain. The Ativan and steroids were administered quickly, but the Morphine was not. My palms sprung leaks. I rubbed them on my thighs. Where was his shot? Pending. Refresh. Pending. Refresh.

“Oh, my head! The pain in my head!”

At home, he had collapsed onto our bed, clutching his head in agony. My husband is not a complainer. He pretty much bit down on a stick and rolled with it after donating his kidney to me.

Inside his darkened hospital room, I scanned the face that glowed even with the light off. The veins in his temple throbbed simpatico with my heart flapping hard against my chest—like a sail come loose from its mast. A Botox-worthy dent deepened in his brow with each passing second.

Where the f*^k was the nurse with his shot?

This was my window. My Shirley-MacLaine-in-Terms-of-Endearment moment. I could picture it. Circling the nurses’ station like a feral dog, I would sniff out the negligent nurse, the one who had NO CLUE what this addict would do when drugs were on the line, and scream,

“GIVE MY HUSBAND THE SHOT!”

The Hospital is my alma mater. The putrid stank of vomit, urine and blood are my essential oils: familiar and calming. In here, I have lettered in almost every department: ER, Surgery, Medication. What I could smell in the air—above the lemony-scented ribbons drifting up from a recently cleaned-floor—was an oversight.

But I had promised Kevin I would reign Her in. The tornado. The woman who'd caused him so much confusion, anger, and perhaps even shame throughout her years of drug abuse.

I gazed at his rigid body, holding himself still against the pain beneath a surprisingly soft hospital blanket. I would not bring Her out today, but an easier, softer version of Her would emerge. She would corner the wide-eyed child-nurse (Seriously! When did I get so old?) and insist that something had been lost in pharmaceutical translation.

Minutes later, his Morphine was administered. As the powerful narcotic slithered its way through Kevin’s veins, my bones melted with the same shudders of relief. And my heart. Oh, my heart. It cracked wide, its fearful constriction unwound, as globules of gratitude rolled down my cheeks.

“Sweetheart…” Kevin mumbled.

“I’m sorry. I just can’t stand the thought of you in pain. Didn’t you ever feel this way?”

“Of course. When you were on dialysis...I couldn’t…I had to go for a walk.”

A couple hours later we would be walking together through another alma mater of mine: The Pharmacy. It was the same CVS where She would be in line, toe tapping, waiting for Her fix, obsessively running the same script through Her head.

What if they’ve run out?... What if I don’t have any refills?...What if they’ve run out?

This night we wandered the aisles together, killing time as we waited for his prescriptions to be filled. Hand-in-hand, I kept my recently discharged, still-intoxicated husband steady. I could feel Her, see Her, dashing throughout the store, eyes wild, collecting her ice-cold bottle of wine, strategizing how she would pay with cash and destroy the receipt-as-evidence so her husband would never, ever know.

"We should get a sweet treat…Thank you for taking care of me…Or maybe a dumb magazine…Oh! Look! Fourth of July Snoopy!"

Kevin’s narcotically-induced, stream-of-consciousness was adorable, but only because we both knew it was temporary. Kevin is not an addict. But I am.

How did I get here? To the point where I can live through constant and undiagnosed skin pain, Gabapentin-withdrawal-induced ear–ringing that has prevented restorative sleep for much of the past 3 weeks, watch my husband sustain 10/10 pain, and be free from the desire to be altered? What force, what light guided me to that moment of complete willingness?

Please. Help me. I love pills more than myself. More than my husband. More than anything in the world.

“Bryan Adams. That would have been fun," Kevin mused as we finally headed for home.

Along that short drive, I used to feel recently-acquired drugs flood my bloodstream. Fantasize about the additional pills I would pop the second the car was parked in our driveway.

And wish I was alone.

As I glanced over at my exhausted husband slouched low in the passenger seat, emotion flooded my soul: Gratitude. Humility. The certain knowledge there was no place in the world I would rather be. Not even 4th row at a Bryan Adams concert.

“Thank you for taking care of me.”

Goosepimply teenage feelings activate!

Date night. A trip to the ER. A nostalgic stroll down Pharmacy Lane. Driving home with my husband.

Best. Date. Ever.

So beautifully written, Henriette! — Heather Bianchi
Beautifully written, as always. — Joe Foley
Your writing never ceases to amaze me. — Alexis Dillard Hermann
Oh, my god! Beautiful written! — Amber Wallace
Wow, what an awful experience! I felt like I was actually there reading your incredibly raw and beautiful words, Henriette . — Ai Cheung
Amazing!! Ever think about being a writer? LOL! — Dawn Michelle Mercer
You are a gifted writer. Thank you for sharing. — Victoria Kay
So glad you are both okay (how frightening), but your writing is just brilliant and deeply moving. I could not stop reading. — Susan Kohler

Mothers' Day

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Anyone who has known me for longer than a minute knows my mother gave me one of her kidneys in 1988. When I was 19 years old, my kidneys were functioning at 3% and my life had been reduced to every-other-day cleaning of my bloodstream and the occasional bite of Mummy’s homemade macaroni and cheese.

Mum punctuated our childhood with homemade sweaters, vegetable gardens sporting rhubarb and chives, and Friday Night Candy Night. In 1980, only a year out from losing our father, she took my brother and I to see ABBA play Toronto’s Maple Leaf Gardens! Their music became the “Post-Daddy" soundtrack for our wee family of 3. We often danced around our High Park apartment to the Swedish synth-pop group's groove. Like rays of sunlight, their infectious hooks dispersed the clouds and brought home harmonic joy. Mum even encouraged me to write ABBA a letter explaining how I felt “Rock Me” was much too heavy a sound for their repertoire. (I wish I were kidding.)

Like many mothers and daughters before us, our relationship has not been free and clear of obstacles. We tripped over the twigs of teenage angst. Endlessly dodged the boulders of illness. Navigated a decade of literal ocean-spanning heartache. Then what seemed an insurmountable mountain of misunderstanding arose, barricading us from each other. For years, I rose and fell, a tornado without end. A storm only lasts for so long before people start running for the hills. Even your mother.

Although it had been years since we had spent much time together, last January she flew to Los Angeles from Saskatoon for a visit. I’m sure she had no idea what she would find. But she flew into the eye of the storm anyway, hoping the tornado had long since blown away.

Bravery incarnate.

If you have known me for longer than a week, you know that I will be 4 years clean and sober in July. Last year, Mum came with me to 3 meetings of Alcoholics Anonymous. In one of those meetings, I shared 10 minutes of my “story.” When I dared glance over, her head was down, but she was listening. To how her daughter drank on the kidney her son-in-law had given her. She did not leave. In fact, when I sat down beside her, she told me what a great job I had done. In that moment, I have never loved her more.

Compassion incarnate.

On her last night in Los Angeles, on the 28th anniversary of our transplant, we went to see ABBA’s monster hit, “Mamma Mia!” at The Pantages. Perhaps it was fitting that I get a cold on our anniversary (or, quite frankly, a giant pain in my immunosuppressed ass). My nose was running, my limbs were aching, even as my feet were dancing. Mum reached to put her arm around me, tucked her shawl around my legs, and instructed me to lean into her.

“There. Is that comfortable?”

It was. I stayed there for the entire show. As the cast shimmied their way across the stage to the Swedish quartet’s timeless disco beat, I sank against my 100% Danish Mummy’s shoulder and succumbed. Dribbling and shivering, I was the happiest I had been in years. I was 10 again. We were dancing around our High Park apartment. Healthy. Happy. Safe.

Love incarnate.

Even in the cold shadow of that mountain, I never stopped missing you, Mum. I am always missing you. Always loving you. The mountain has to be part of our story, but it will not be the final chapter.

I have plotted out the next chapter to look something like this:

This summer, Henriette will fly due north to Saskatoon to visit Mum. Together, they will take a road trip to Winnipeg to see said son-in-law perform in—you guessed it—“Mamma Mia!” Along that drive, 10-year old Henriette will lay her head on Mummy’s shoulder and they will sing along to ABBA.

Skies will be clear. The tornado has long since passed.

Every post you share is better than the last one. You’re writing is spectacular and your incredibly personal stories so intensely moving. — Kelly Lester
What a beautiful passage. Thank you for sharing the strength and courage of both you and your mom. You help us remember our purpose - to be here for each other. — Susan Kohler
Just beautiful! — Dale Stewart
Ah, Henriette. So refreshing. A beautifully written account of part of your journey. — Paige Moore

You Don't Look Sick

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Last Tuesday, I attended my Chronic Compassion support group for those suffering with illness and pain. An article for us to consider was passed around:

You Don't Look Sick. Hmmm.

I checked in about my burning skin and relentless withdrawal from Gabapentin (tinnitus, anxiety, insomnia). I cried. Meditated. Cried some more.

A 35 year-old woman shared about her recent MS diagnosis. I told her she cannot give up hope. That the best doctors believe Medicine is Art, not Science. It is always evolving. If I had been born in the 40’s or even 50’s, I wouldn’t be here. Dialysis wasn’t even a thing until the 60’s and Cyclosporine (my main pharmaceutical jam) didn’t come into medical use until 1983. I had my first kidney transplant but 5 years later.

Then this woman cried out that she really, really, really believed “they” would figure out what is wrong with me.

And we both cried.

For me, this support group unfolds like a Very Special Episode of our marital hit, “The Emotionalist.” (According to my husband, I am not only the star, but show-runner.) When the article You Don't Look Sick! went around, it reminded me of what I have heard many, many times throughout my decades-long medical career.

“Well, you look great!”

Sigh.

In 1987, I was 18 and was being transferred from the Hospital for Sick Children over to The Toronto Western Hospital. Leaving my beloved, crush-worthy nephrologist Dr. William Balfe was agony. Bill Balfe. Bill Balfe. (Isn’t that fun to say?) Man, I loved him. He was equally supportive of my obsessive love for the all-the-rage, 80’s hair product mousse, as he was my hand-wringing terror over clumps of hair falling from my 15-year old head from the evil drug, Imuran. But I was now legally an adult and had to have my very ADULT illness transferred to an ADULT hospital.

(End Stage Renal Disease (ESRD)? Not so fun to say.)

So on the September morning of my appointment, despite being three months away from dialysis, I Cover Girl-ed up my sallow skin and puffy eyes, donned my shoulder-padded, paisley-green business suit a la “Working Girl,” hot-pink heels, and sprayed my post-moussed, Duran Duran bangs into paralysis.

I was ready to be seen.

At the time, ESRD was getting serious. Headaches. Nausea. Trembling. Brain fog. I told my new nephrologist how tired I was. So tired. Sleeping-12-hours-a-night exhausted. With an invisible roll of his eyes he clipped,

“Oh, all teenagers sleep until noon.”

Well.

(This might have been the moment the pilot episode of “The Emotionalist” was born.)

Once my puffy slits began leaking, my ship went down. I could Not. Stop. Crying. Body-shuddering, snotty sobs. God Bless Mum who stepped in to explain, “My daughter is no slacker! She is a winnah!” That I usually operated on six hours of sleep a night. How she managed to be heard over the cacophony that was my snorts, sniffles and wails, I’ll never know.

Along the bumpy 506 streetcar ride home, Mum turned to me and said,

“You look too good. Stop wearing makeup.”

At the time, not wearing makeup was, I don’t know, like not using toilet paper. Gross. Unthinkable. But she had a point. Dr. C. and I would become respectful collaborators as I left ESRD behind, boldly went into transplantation and embarked upon the wide, wide world of side effects. But at the time, he didn’t know me, and did not live inside my body 24/7, 1440 minutes of every freaking day.

That day, I had been seen, but not heard.

The definition of “chronic” is: Persisting for a long time. Some of its synonyms are: Ceaseless, unabating, or dyed-in-the-wool (which makes me picture a blue sheep!) The clear winner: Immedicable (which makes me picture a group of white lab coats scratching their heads in a circle around my hospital bed. Which is just. about. right.)

This brings me to 2017. Both Saturday and Sunday night I had the opportunity to show up, and dress up, for my husband at profoundly special events. Saturday night was the Calvin Klein gown, Bedstemor’s vintage crystals and a red, red lip. Sunday night was the silver number I wore when Kevin gave his heart to Jerusalem one year ago tomorrow.

Saturday night, as I wandered around a magnificent celebration of his cherished and courageous community, I was often told,

“You look beautiful.”

Stretching my red lips wide, I smiled, nodding,

“Thank you. What a wonderful evening!” When what I really wanted to do was throw my arms around said complimentor and sob like that 18 year-old girl who had just lost her nephrologist.

“But I’m in PAIN! Can YOU help me? Do you know who THEY are?”

Sunday night, I sat in the front row at the AJU Whizin Theatre (which, as a friendly tip, is not as fabulous as one might think. Not neck-friendly! Not nice!). As I waited for my husband to take the stage and sing a duet with the Los Angeles Jewish Symphony, my skin flared hot and raw beneath me. And not in the good way. (Well, maybe a little.)

My dress chafed, the backs of my thighs angered from the plush seat below.

Why did I wear this dress? I held my flaring wrists, handcuffs of fire.

I want to scream. Inhaling through my nose, I repeated my mantra. OTHER PEOPLE FEEL THIS. OTHER PEOPLE FEEL THIS. A surprising lack of rustling stretched behind me, and I wondered,

Is anyone here in pain like me?

Then I remembered her. An acquaintance of Kevin’s who was diagnosed with Lupus only last year, her progressed symptoms so bad she is currently on chemotherapy. I spotted her in the orchestra—her beautiful and bespectacled moonface, the cane lying by her instrument’s side. She was here, showing up for her life. I know those drugs. They are devastating and debilitating. She had to be in pain. But she was sitting in her seat, and I was sitting in mine.

And she looked great.

My Mum was right. In the 30 years since that day, not much has changed. I am still a patient. I am still dealing with side effects, and now, chronic pain. But I have learned a lot. I never wear makeup to doctors' appointments. I have fine-tuned the Art of Being a Patient. I go informed. The best doctors don’t mind if I’ve Googled. I bring my old skool Post-It note of questions. I remember that most doctors have never been sick, and choose to believe they want to help. And for the few minutes they see me, it doesn’t help if I’m looking Red-Lip Ready.

It’s still a mixed bag when someone tells me I look great, when I just don’t feel that way. But, I have come to understand that most people will never understand illness and its inherent agonies, in the same way I will never understand what it’s like to walk 5 miles for a bucket for water. Most people jump out of bed and complain if their shower is too hot. I do not.

But I do have running water.

We all have pain, no?

And anyone doing their best to show up for their life no matter what their circumstance looks great to me.

Red lip optional.

How about this: You don’t look so hot, but your writing looks fantastic. That feels like a solid compromise? — Tim Rasmussen
Beautiful, agonizing, humorous, depressing, hopeful words you speak. Thank you. — Darlene Weege
Love, love this sentence, “And anyone doing their best to show up for their life no matter what their circumstance looks great to me.” — CJ Fisher
Your writing informs all of us. With such powerful depth and humor. More than you probably know. The (gorgeous) red lips are just a cover, yet a magnificently alluring asset. But when you take us inside the book though, that’s when we really get your gift. Thank you. — Kelly Lester
Thank you for reminding me that those suffering from chronic illness don’t always look like they are. We, in healthcare, become so jaded by those who enjoy being sick and drug seekers that we often dismiss those who truly need our caring and compassion. — Diane Gillespie
Your writing continues to inspire me and keep me wanting to read more. — Bonnie Scott

Goin' Up

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She was a total beeyotch.

I had an appointment. It was the yearly follow-up for my kidney transplant. But she kept insisting it had been moved to August. I agreed. I had been here last summer to see Dr. Jordan, head of transplantation at Cedars-Sinai and pioneer of IVIG—an IV antibody treatment that boosts patients’ acceptance of second or third (or more!) transplanted kidneys. Back in August, Dr. Jordan ran a slew of immunological and viral blood tests for me, hoping to uncover anything that could be treated with this groundbreaking therapy.

Nothing. Skin burning aside, I was as healthy as a horse.

[Hold that horse thought.]

I knew the look. Instant dislike. Disdain smeared all over her face. I have no idea why. Maybe it was the polite way I asked her to accommodate me, even though I wasn’t on the books. Maybe it was my comprehensive explanation as to why I desperately needed to see a physician: that I had recently been pseudo-diagnosed with Erythromelalgia and needed an extensive list of medications reviewed and “kidney-approved” before my USC appointment this Thursday.

I sat in the check-in section, hands folded primly in my lap, making occasional and bewildered eye contact with the administrator who, quite frankly, looked scared.

Where was old Henriette? The one who used to spread herself wide across pharmacy counters like a pharmaceutical whore bellowing for her scripts to be refilled.

“Can you check again?”

“It’s too soon to refill.”

“WELL, F*** YOU!!!”

Ah, those were the days.

But She was gone, and in her place, I sat there meek as a mouse, indeed a spiritual giant, even as my brain whirled with, “Why are you being such a BEEYOTCH?"

She was not having me. She was not hearing me. All she wanted to hear was the sound of her own voice.

“Your follow-up is in August,” she insisted one last time as she strode away, the wings of her lab coat fluttering like a bird’s rising for take-off.

“Does that mean you’re going to be seen?” my partner-in-confusion asked. I shrugged.

I was seen. By the same lab technician, Sebastian, who asks every year how I look younger, while I roll my eyes and tell him to clean his glasses. (It’s our thing.)

Blood pressure 119/77. (WCS be gone!)
Temp: Normal.
Weight 124.5 lbs. (No comment.)

A different check-in girl confirmed my current medications. Another kinder, gentler transplant coordinator updated my records, and then, finally, Dr. Stanley Jordan.

[Insert horse thought now]


Remember the movie Seabiscuit? It was huge. A blockbuster. I never saw it. I remember thinking Tobey Maguire was perfect casting for the jockey because he’s such a little dude. And I never read the book. But I did read an essay by the novel’s author Laura Hillenbrand.

I subscribe to The New Yorker on line, and every Sunday they send out 6 past essays bundled thematically. On Jan 22nd, the bundle was entitled, “Medical Mysteries.” When the title, “A Sudden Illness” popped from my screen, I froze mid-scroll. Hillenbrand’s 17-page essay had won a national prize, but this was what impressed:

“...One morning, I woke up to find my limbs leaden...”

...I couldn’t hang on to a thought long enough to carry it through a sentence...”

“...He once said that he could sense the disease on me. I knew what he meant. I was disappearing inside it...”

In 1987 at age 19, Hillenbrand would be diagnosed at Johns Hopkins with Chronic Fatigue Syndrome. CFS is still one of the most frustrating diseases out there. It incapacitates and little treatment exists. Some recover. Others don’t. Like Hillenbrand.

Vertigo. A constant shrieking sound in her ears. Bedridden. Weeks pass, then months. Then years.

She would write for papers and magazines when she could.

“...Because looking at the page made the room shimmy crazily around me, I could only write a paragraph or two a day...”

Then, on a cool fall day in 1996, Hillenbrand discovered Red Pollard who would become Seabiscuit’s jockey, a man as physically tormented as she.

“…in one lucky moment of his unlucky life he found Seabiscuit, a horse as damaged and persistent as he was. I hung Red’s picture above my desk and began to write.”

And in one unlucky moment of my life, I discovered the Hillenbrand essay and put it on my desk. This. These lines. Sometimes they keep me going when nothing else can:

“...If I looked down at my work, the room spun, so I perched my laptop on a stack of books in my office, and Borden jerry-rigged a device that held documents vertically. When I was too tired to sit at my desk, I set the laptop up on my bed. When I was too dizzy to read, I lay down and wrote with my eyes closed. Living in my subjects bodies, I forgot about my own...”

And that’s what Life looks like when you are willing to go to any lengths to live.

Pollard found Seabiscuit. Hillenbrand found Pollard. And I found Hillenbrand.

[We now return you to your previously scheduled post.]


My life has been filled with medical forces. Dr. Stanley Jordan is one of them. The doc is a dude. I mean LOOK at this guy. Because of his work, patients who need multiple transplants actually have a shot because of IVIG. (It’s all about dueling antibodies, which I really don’t have time to explain here.)

He scanned the list of Derm meds up for discussion on Thursday. He nixed calcium channel blockers because they might make my BP drop too low, which happens to be wunderbar as is, thank you very much. Then we talked. It was after 12:30 pm now. I was the day’s final patient. But he wouldn't let me go. He didn’t have to tell me. It was smeared all over his face.

“This is terrible.”

I told him about winning an award for the book I’ve been trying for write for almost 2 years now. That on days when my pain is a 4.5 (interferes with tasks), I wear ice packs and stay the literary course. But when my skin burns into the 6 zone (interferes with concentration), I can’t work. I didn’t have to tell him how that breaks my heart. I knew it was smeared all over my face.

“There’s an author, who wrote Seabiscuit…Hillenbrand…” he began.

Goosebumps. They exploded all over my skin.

“Oh, my god,” I said. ‘I’m going to burst into tears.” But I didn’t. OK, maybe a little. I am after all, The Emotionalist.

“It is the hardest thing as a physician. When you see someone is suffering, and you don’t have the means to help them.”

But you do, Dr. Jordan, and you did. You listened, and you heard me.

Goosebumps were still percolating—somewhat soothing and altogether wonderful—as I got into the elevator. The doors opened on the 2nd floor and guess who walked in? Ye Ol’ Beeyotch herself. She noticed me, and quickly turned her back. Apparently, she is very good at this. At the lobby level a teeny woman got on, her brow scrunching as the elevator plummeted downward to P1.

“Oh, is this going down?”

“Yes, but don’t worry, “ I smiled, “What goes down always comes up!” And then the two of us bust out laughing.

Hey lady. I’m counting on it.

Always reading. Always sending love and admiring your skill and tenacity. — Carmen Leilani
You have such a talent, Hen. I am always enthralled, but I so wish this was not happening to you. — Lesley Traynor-Smith
I got goosebumps, too, my friend!! You’re incredible! — Debra Stricklin
I cannot even put into words how much I love your writing. When your doc started to mention “Seabiscuit” and Hillenbrand, I got goosebumps, too. And I love, love, LOVE your attitude! I hate your disease and what it is doing to you, but I admire you for how you have taken it and used it to educate and inspire others. —Tanya Gregory Tomlinson
Oh, those goosebumps! I got them while reading your wonderful gifted way of expressing yourself. — Ann Lantello
I feel like a broken record of intense admiration for you. What talent you have. I’m so sorry for the difficulties, but boy, do you have story to tell, and a gift for telling it. — Katherine White
Keep writing. Keep fighting. — Amy K. Pearson

The Pain Scale

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She will get off the phone and burst into tears.

She already knows this when she hears, “Hi. It’s Dr. A.” Even above the Bluetooth-induced cacophony that sounds like a wind tunnel, that she secretly wishes she could stand inside for the breeze upon her skin—which intellectually makes no sense because she knows there is no windstorm inside her doctor’s car—she can hear it.

Frustration. Disbelief. Failure.

“The results are very unsatisfying.”

This is what Dr. A, hereinafter known as Dr. A+ opens with.

“There were large experts in the room who were struggling.”

Dr. A+ tells her that although several theories were mulled, then mashed into medical pulp, not-a-one makes complete sense. The only one that comes close is something called Erythromelalgia.

Because Dr. A+ is such a tenacious medical mofo, she had already presented this theory to her back in October when they first began working together.

Erythromelalgia is when blood vessels in the skin are deregulated; they constrict and dilate more than they should. But not all of the theoretical dots connect.

“Medicine just isn’t advanced enough to give what you have a name.”

“So was this," meaning Grand Rounds with 40 Derms, "like, my Mayo Clinic?” she asks, her lip trembling with cliché.

And this is why Dr. A+ earns her modifier. She tells her that for as great as doc's current employer is (USC), the NIH or Mayo might very well be the next / last stop on this dermatological train.

Then, Lip Trembling Girl gets off the phone and bursts into tears.

She calls her husband.

She calls her sponsor.

(Wrong order.)

Then she Googles Erythromelalgia and finds a 17-page document at raredisorders.org prepared by Dr. Davis, Professor of Dermatology at the Mayo Clinic.

She learns that she does indeed have some of the hallmarks of this condition, but not all: Intense burning, severe redness and increased skin temperature (Does feeling hot count?) that may be episodic or almost continuous in nature.

But not swelling. She doesn’t have swelling.

It affects the feet, and sometimes the hands. But in her body, it has affected her arms and thighs…and upper back, and lower legs, and ankles.

But not her hands and feet.

She will learn that it primarily affects women in middle age. And that it affects 1.3 out 100,000 persons.

Or 13 out of 1 million people.

And that, “although treatment response is variable, experts indicate that many achieve significant alleviation of symptoms with appropriate medication regimens: In addition, although uncommon, remissions have been reported in some patients.”

Alleviate, not eradicate. The tears roll down her face.

But she doesn’t have Erythromelalgia. Just something that kinda, sorta looks like it some of the time.

Is that enough?

She will scream and cry and slam the bedroom door. She will act like a child, because that’s how she feels. Like she no longer has any control. That her life is no longer her own. That it is run by Pain.

She writes in 3rd person because she wants this to be happening to someone else. She is never with reprieve. She is always aware. As her eyes flutter open. As she writes. And when she turns off the light.

She will probably cry again tonight, but crying and trying are not mutually exclusive. In fact, sometimes tears lubricate the process.

And so try she will. From medications like Misoprostol that smoothes the blood vessels (and sounds like cheap Russian vodka), to creating a vision board for her acupuncturist. From Carbamazepine (for bipolar and epilepsy), to guided meditation. From SSRIs to ACV (with The Mother!).

On Tuesday she will go for her 6-year kidney transplant clinic, and on Wednesday she will go to acupuncture. From West to East. Somewhere inside this interminable distance there has to be an answer.

So fuck you, Pain. I do have a say. And I can hear it above the windstorm.

Oh heck!! And so sorry! But, my gosh woman, you sure can write! — CJ Fisher
You certainly write beautifully. — Ingrid Geyer
I think it is fantastic that you are writing a book... What a wonderful and engaging writer you are, but you also have presence for visual story telling. — Amy Sundby Jeanchaiyaphum