A Voice

I've been thinking a lot about my voice lately. 

 

For a long time on this blog, I felt a silence come over me. It was shame. I was so terrified to admit (to others and to myself) how very ill I truly was. If I admitted it to my employers, I might lose work, and thus the insurance that would help me return to our regularly scheduled program of overworking my way to out-running self-loathing! 

 

And if I admitted to to myself, my psyche would collapse utterly under the weight of It All, and I might never recover physically or emotionally.  

 

But yes. If you've stuck around here long enough, you probably noticed I was doing quite the fancy thing there for a while, and now, (as a close friend so recently, dismissively? callously? maybe totally innocently? labeled me—) I am "a regional theatre actress." 

 

For the record, nothing about that label is shameful, and of course, nothing about the quality of my work has altered. In fact, it has only deepened. 

 

Careers are not at all the meritocracies we were promised in elementary school. They are often merely the reality of 

who you know

where you geographically were

where you were in your maturity

if you had financial support

if you had emotional support

if you possessed maturity 

how audacious you were

if you had representation at the just right time 

the hand of luck

the hand of fate.

I had a lot of those. I didn't have others. I believe I valiantly attempted to make the most of what I had. Such is life. 

 

I'd also add that in emerging years... I am much more than "just" an actress, as my literal tax return would point out. 

But I digress. 

 

For this friend is not wrong: I acknowledge that once upon a time, I was a big West End leading lady, a Broadway-person-in-the-making, and suddenly had a lot of fancy classical music gigs and 2 Broadway shows under my belt. And since 2017 I haven't performed in those spaces. And my health is largely responsible for that.  

 

It's taken me years to recognize, acknowledge and metabolize what actually occurred in my body, let alone in my career, and it is one of the great griefs of my life that specifically the singing experience—once such a source of pure joy and release—has become so fraught (even though it is now, largely in my psychology...)

 

____ 

 

Around 2014 I started to notice a change in my body, which included a change in my singing voice. I couldn't place it. I couldn't fix it. I couldn't even totally name what was happening, but it felt like this: 

after a lifetime of holding a pencil and knowing how to write with it, suddenly one day I picked up the pencil and it started to fall gracelessly out of my grip without ceremony. Nothing I did could regain the sense of "controlled-freedom" I worked so hard to enjoy in my music-making. And this was right at the moment I was the most visible on earth as "a singer." 

 

Oy.

I now realize it was the beginnings of a terrible illness that would take much more from me than merely a effortlessly floaty passagio. 

It would take momentum. 

Relationships. 

Years of my, and off my, life. 

It would take literal organs. 

It would take my fertility. 

And of course, it ravaged the most sensitive part of my body to all of this: my voice. 

 

39 failed medications. Years of physical pain in the form of body tension that still lives in my fascia to this day. And as they say of racehorses: "an injured champion never quite races the same..." I'm learning, as I heal all this that though not at all unusual, over the years mind did something horrible. It did not simply do say: 

"I grieve what my instrument used to do."

or

"I grieve the life I could have had, had my instrument remained on what I felt was a promised trajectory" 

 

But almost immediately:

"What does this mean about me as a human being?"

 

Those are two utterly different griefs.
One is grief over a legitimate loss.
The other is utter shame.

The first says:

"Something precious changed."

 

The second says:

"I became less worthy."

 

Those are not the same emotion. But trauma often fuses them together until they feel indissoluble. 

This was not a change I could understand. For someone whose nervous system learned that understanding equals safety, that is an almost unbearable request. 

  

For the record:  

I no longer feel that my voice is broken or damaged. But it is not remotely what it was in 2013. Partly because I haven't been able to "get the reps in." But the soaring has returned! When I am asked to soar. Which is a gift I have to re-earn on those big stages, and I am, of course, willing to re-prove myself. And, of course, it means even more to soar when one has learned what it means to fall out of the sky. 

 

And lately, life has been teaching me to challenge a lifelong strategy. 

 

My instinct has always been to "make meaning" of events. I am compelled to make meaning, to analyze, to build a coherent narrative before I even fully feel the emotion. A self protection, of course. And not a sustainable one. 

This year has not allowed that.
 

This year of expansion is asking me to relinquish Certainty. Perfection. 

And replace it with curiosity. Space. Wonder. Awe. 

To relish all I do know now, throw my head back, and laugh at all I have yet to learn and do and become.

  
To cease not only striving for perfection, 

        but performing the illusion of perfection. 

© hula seventy

43

I used to write a little birthday post every year. I would list all the interesting things about the number/age I was turning and reflect. I glance over them now and feel charmed by how innocent they are. They were before the years felt "piled up." 

- I distinctly recall turning 24 and having the realization that childhood was truly over and I had "missed it."

- I remember waking up in San Francisco on the morning of my 30th birthday just after West Side Story had closed (the cast sang to me at midnight!) and feeling like life was truly all ahead of me... not fully realizing that less than two years later I would have a diagnosis and so much fear and pain. 

- I remember 36—the first birthday with Alec in my life—and not knowing where to put all of my peace and joy and happiness. 

- And 40. Days before I turned 40 I quit a high profile job and thought my career might be over, but the relief I felt at walking away from something so toxic was a level of certainty I couldn't ignore, and realized I had fought too hard to be alive to live feeling that horrendous about my work...

 

So. Hello 43. 

 

For decades my life has been organized around earning: health, approval, love, safety, another day. This year is the first in which I seem to have experienced what psychologists sometimes call "earned security"—not perfection, but a nervous system that is slowly learning, "Wait wait wait what: I don't have to manufacture every ounce of love that comes toward me?"

___
 

Last week, Chicago was flirting with one hundred degrees. The sort of heat that makes the buildings shimmer and convinces everyone they have suddenly become experts on hydration. 

 

Alec looked at me and said, "Beach?"
For me that answer is always "Obviously."

 

If you've never been to a Chicago beach in the summer, it feels vaguely illegal. You're standing in one of the largest cities in America, surrounded by skyscrapers, and somehow there's an inland sea stretching toward the horizon with no opposite shore in sight. Lake Michigan has always refused to behave like a lake. It insists on being mistaken for an ocean.
It is also? My water.
I grew up diving into it from the Michigan side, and every time I return, my body recognizes it before my brain does.
Without ceremony, I walked straight into the bone-shivering water with abandon.

 

Or perhaps...with ceremony? Because as the cold overtook me, something unexpected happened. My entire body began to tingle with the intensity of an arm waking after it's fallen asleep. Every nerve ending seemed to announce itself at once. As though someone had quietly switched my awareness back on.

 

I couldn't help thinking about the mikveh—the ritual bath that marks transition, renewal, emergence into a different chapter of life. I've always loved that Judaism understands water as more than water. Sometimes immersion is less about washing something away, than becoming someone new.

 
Standing waist-deep in Lake Michigan, I found myself waking up.
To health.
To gratitude.
To the astonishing, ordinary miracle of having a body that can carry me into freezing cold lake water without fear.

And excuse me please but let's pause here to appreciate one of the quieter miracles in this story:
I got into a bathing suit, mmkay? 
I walked into the water without negotiating with my reflection.
For decades, body dysmorphia/ disrodered eating/ general self-loathing literally stole moments like these from me. Even when I longed to swim in my favorite thing on earth: The Water, some cruel internal accountant insisted I hadn't yet earned the right. My body was something to apologize for before it could become a vessel to enjoy human experience.

This time, I didn't bargain.
I just got in.

The greatest victories increasingly resemble freedoms.
Not achievements.
Freedoms.
 

A few days later, I celebrated my birthday.
Forty-freaking-three.

And I can say, without hesitation, that it was the most beautiful birthday of my adult life.
Not because of presents.
Not because of messages of celebratory messages.
Not because that evening I had the extraordinary privilege of sitting onstage as Désirée Armfeldt and singing "Send in the Clowns"—(though, TBH: beginning a new year of life with one of Stephen Sondheim's most searing songs felt like a piece of theatrical symmetry too intense to have been planned?)

It was beautiful because, for perhaps the first time in my life, I allowed myself to receive it.

Receiving turns out to be much harder than giving. I used to pride myself on giving more than I received— if ever allowing myself to receive at all! As if that were some sort of superior virtue. Ah, youth. How wrong I was. 
But understandable, of course. Giving feels active. Noble. Productive. Receiving requires something far more frightening.
It requires believing that you don't owe anyone an explanation for why you're worthy of being loved.
And after all, for most of my life, I didn't believe that. My grandfather taught me—without ever saying the words outright—that love was a wage.  Approval was conditional. Safety was earned and re-earned— every day. Even accomplishment wasn't enough, because yesterday's accomplishment expired overnight. Whatever affection had been earned on Tuesday needed to be re-earned on Wednesday. Then Thursday. Then Friday. The treadmill never stopped.

I internalized the lesson so completely that I confused striving with living.

If I just worked harder…
If I were just more successful…
More talented.
More useful.
More exceptional.

Then perhaps I could finally exhale.

Of course, the finish line kept moving.
 

Illness complicated all of this in ways I'm only now beginning to understand.
When survival itself becomes your full-time occupation, you learn to live in a perpetual state of bracing. You become extraordinarily good at enduring.
But enduring and living are not the same thing.

This year, something shifted.
Perhaps it was writing Brigadoon.
Perhaps it was playing Désirée, who seemed determined to interrogate every illusion I still carried about worthiness.
Perhaps it was the privilege of being surrounded by extraordinary collaborators and friends who loved me without asking me to audition for the role.
Perhaps it was simply enough years between myself and the girl who learned to hustle for approval.
Whatever the reason, I noticed something extraordinary on my birthday.
When people loved me...
I let them.
I didn't rush to deflect the compliment.
I didn't immediately calculate how to repay every kindness.
I didn't secretly wonder whether I'd disappointed them somehow.
I simply received it. 

With the enormous gratitude a true gift deserves.

That's the lesson: truly receiving love is its own act of generosity.

If love is a gift, who am I to deflect it so callously? To decide whether or not it is deserved? Someone has thought of me, gone out, selected it, purchased it with hard earned wages and wrapped it up for your delight. 

Receive all of that. Without fuss or deflection. 

It is gracious to do so.  

People want to celebrate one another.
They want to uplift.
They want to cook dinner, write cards, send messages, hug you far longer than etiquette requires. They aren't keeping score. 

Healthy love isn't transactional. 

It isn't waiting for reimbursement.
It longs to be accepted.

I went to sleep that night feeling something I don't remember ever feeling before.

Full.
As though every kind word, every embrace, every laugh, every song, every impossible twist of fortune this extraordinary year had offered had finally been allowed to land.
 

For the first time, I wasn't carrying the bucket beneath a waterfall, frantically trying to prove I deserved the water.
I simply stood in it.
 

The beautiful thing about fullness, I've discovered this year, is that it doesn't end with you.
It overflows.

And flows ever-outward.  
The more completely we allow ourselves to receive love, the more freely we can offer it away again tomorrow.
 

The birthday gift of 43 is learning that there comes a moment in every life when we can finally stop asking, 

"Have I earned this yet?"

 

And simply answer, with gratitude:

 

"Isn't it rich?"

receiving: with my whole, damn grateful heart

"Don't Bother, They're Here..."

 Tonight after opening, and a week of tech plus 2 show days, I was doing the show feeling as “lost” and “at sea” and “clueless” as I ever have been (perhaps, save, Kiss me Kate for the BBC where I was just operating on adrenaline and... cortisol and... panic? Unclear. I still can't watch it...) 

 

Bluntly: I have been waiting around for the Désirée “aha” moment to arrive much like the (totally fake) Handbook for Adults whose delivery I am still anticipating. But tonight, during the crushingly iconic “Send in the Clowns” I began to have a catharsis so huge I was rendered inarticulate. I felt like I was bombasted with a shattering realization: that silly ol' Désirée is meant to teach me/show me/force me to:

confront my life choices

confront the health and traumatic history realities that had nothing to do with my “choices” 

including the loss of the full spectrum and potential of my singing voice

and above all my unavoidable relationship with self loathing and my compulsive search to find attunement and safety in the gaze of others. 

 

Whoa boy. It was overwhelming. And excruciating. 

 

The mistake? I was waiting for the intellectual breakthrough—for the moment when I'd finally understand Désirée.  Instead, my body understood her first.

 

It strokes me that most people regard "Send in the Clowns"  as a love song, or a ballad of regret. But psychologically, I think it is something much more terrifying: 
It is the moment when a woman realizes that she has spent a lifetime arranging herself around other people's desires. In my experience thus far, it is filled with almost every emotion there is— including if not especially rage and shame. 

Désirée has always known how to be admired.
She knows how to be wanted.
She knows how to enter a room and make everyone turn.

She even knows how to piss of her own mother. 

But the week we meet her, what she discovers, far too late, is that admiration and attunement are not at all the same thing.

And something about that distinction feels uncannily close to a pattern I have come to recognize in my own life.
From childhood onward, I learned to scan faces.
Dad's long illness.
 An emotionally unsafe extended family.
Years of illness. 
Multiple surgeries.
Throughout those experiences, my silly ol' nervous system seemed to have created a painful equation:

If I can just become the right person... the exceptional person... the indispensable person... perhaps then I will finally be safe.

Not consciously, of course (nervous systems don't speak in sentences—at least I don't think they do...) They speak in actionable strategies.

I have always wondered why, with so much external "evidence" of worth, and with a great loving support system, partner in Alec, and such loyal friends, I have such a ravenous need to feel "deeply seen." 

I now realize that every time I moved to a new environment (which, as a freelancing artist happens every couple of months or sometimes weeks!) a new relationship or singular artistic environment would end up carrying the weight of my need to feel deeply seen. 

 

That's too much pressure for a scene partner. Or a group of strangers. All of whom have their own lives and boundaries and needs and neuroses. 

 

Tonight I think I experienced a revelation: I haven't actually been seeking any kind of admiration or even platonic intimacy.

I have been chasing safety. 

The experience of finally relaxing.
Of no longer having to earn belonging.

Those are different things.
One requires performance.
The other requires surrender.

Then there is another irony.
I've spent much of your career trying to convince audiences that I am "worthy."
But what if the mature roles ask something entirely different?
What if they ask:

Can you stand in front of people without asking them to heal your self-loathing?

 

Not because I no longer have self-loathing (I'm a woman on earth, after all...)

But because it no longer gets the starring role.
That is Désirée to me.
She isn't trying to be adored anymore.
She is trying, perhaps for the first time, to tell the truth.

 

I've been... surviving.
And the agony is that the strategies I constructed for that survival kept operating long after the danger had passed. 

I dunno. Perhaps that is why "Send in the Clowns" undid me. It is exposing the exhausting performance I've been giving for decades.

And somewhere beneath that performance is the woman I've been thinking about and trying to love-back-to-fullness all year: the one with the surgical scars, the cellulite, the altered voice and body, the intelligence and straaaange humor, the immense capacity to love 

 

and the courage to sit on a pile of pillows in the center of a theatre, without pretending to be immaculate.

 

No F*cks!

Pardon my verbosity about something possibly “silly” to the outside world.

But indulge me for a sec. LOOK. Here I am:

- a woman
- [semi] alive in the 21st century
- with a disordered eating and body-dysmorphia history
- covered in scars from 4 life-saving bowel surgeries
- and FORTY-ONE FREAKING years old
- in a BIKINI
- on STAGE
- in NYC
- doing simulated S&M
- with a man 1000% hotter than me. 

with José Espinosa, photo by @antonovpavlun

Even 5 years ago me would be in total shock, and probably require a defibrillator.

No one might assume this of me ("body issues") but— ya know, we all have our histories. My body is one I’ve hated, tried to save, tried to love, and in the end? It is the only vehicle I shall ever have to experience this life. I'm proud that I said "yes" to wearing/doing this with very little internal or external drama (a shoulder shrug and a “sure!”) and no desire to hide the surgical scars or meaningfully cover the “flaws.”

All to say — I might be making a massive fool of myself strutting around onstage in a hot pink bikini — but internally? It’s genuinely a big victory cultivated over years of internal work.

Life’s a journey, kids.
Well, actually it is many— and one of my journeys has been of personal acceptance, surrender, recovering-perfectionism and general self-worth stuff in regard to my internal self and physical form. And I’m sharing this sappy stuff with you because if that is a journey you are on, as well? You’re not alone and there is hope. I never thought [gestures above] all this would be possible and … it is.

So. One day you too might make a fool of yourself in public in a 'proverbial bikini' but know that it is also a huge victory for you.

Life is precious and short and worthy of celebration and laughter. 

So put on whatever "the  bikini" is for you and thrive, pals.

 here I am saying "Yes way, José!"

Race you

@James.T.Murray

Back to 'I Wish' after a year away! 

 

There were postponements, and too-many-jobs, and travels, and health battles won for two of our team! And in the end? What a joy to gather together once more and celebrate at 54 Below. I feel so especially grateful to gather together in health and wellness in the presence of Drew Wutke post-liver-transplant-miracle-man, and post-4th-bowel-surgery me. We are here!

 

This was our 10th I Wish (since the first one in 2018), and I struggled a little with what to sing. So many of my "wish" moments have been realized—in true productions, or within this glorious series. I had to think outside-the-box. And that often requires me to dig a little deeper...

*

 

In truth, what's been on my mind lately has been personal (and I hate that it currently feels political as well...). 

I don't discuss it here. 

At least I never have. 

The subject feels like a phantom, a shadow of sorrow too tender to give credence to. 

Giving it shape in words feels dangerous, unwieldy; too fully formed for a phantom. 

Best let it haunt me.

I've left it not unexplored, but certainly un-uttered. 

 

And what is this? Well. It is the fact that I will possibly never raise children, and certainly not give birth to them, biologically. 

It's been on my mind since roughly 2015, when I was first diagnosed with UC. At the time I was just 32, chronically-sick-as-a-dog with no solutions in sight, not dating anyone seriously, and honestly I was so preoccupied with every kind of surviving that I honestly hadn't even thought about kids. I was never one of those women that had always dreamed of pregnancy or of parenting; I presumed the thoughts and sensations would present themselves organically...  

 

Then one day, after a few failed attempted medical solutions, I was presented with an option: a very intense drug that worked for many people in helping quell ulcerative colitis. It worked for many, but was essentially chemotherapy in pill form. It could be magic bullet. It works for thousands of people, they said. But: it would forever compromise my fertility. I needed to give it some thought.

 

I did. My thoughts were that my options were slim and growing slimmer. 

I did my due diligence and explored every corner of why people have children, what pregnancy meant or didn't mean to me, what mothering, parenting, legacy, biology... In the modern day, we truly have children for so many reasons. I figured none of these thoughts were going to do me or a child any good if I wasn't here, or well enough to care for either of us. 

I went for it. 

And in the end? The drug did not work for me. 

. . .

 

I'm not usually lost for words, but the sense of loss was palpable. 

 

Yet, this was one of the countless things I didn't (couldn't?) manage to cry tears about. Something about it felt self-indulgent. I went about with the regular unhinged programming of shoving it ever-downward in to my already sabotaged viscera! Keeping medical secrets from a Broadway company and presenting myself as Healthy Al. Nothing to see here. I haven't eaten solids or slept in weeks, I am on more steroids than a Soviet dead lifter, but everything is fine. I gave no further meaningful thought that year to the children I'd never have—Who had the time? After all, they were a figment, a not-to-be-hoped-for addition. And I was focusing on the "lucky-to-be-alive" part. At the time I had no partner to raise them with (something I insisted upon, when my imaginative musings drifted toward parenting), a chaotic schedule as an actor, with a volatile income, distant family infrastructure geographically far away. None of it seemed reasonable. Possible. Or above all: like something I was even "allowed to want."

 

By 2021 my surgery further solidified the story of a life without biological children. The scar tissue from the surgery would settle around my reproductive organs, and would mean IVF was the only option for pregnancy with anyone's eggs.  

 

My surgeon was compassionate. 

All his fellow associates and nurses too. 

I signed 100 consent forms. 

They checked and asked me over and over again—including moments just before the surgery itself—if I was "sure." 

And when I said I was, my wonderful, taciturn-but-compassionate surgeon took a vulnerable leap and in a near-whisper, reminded me of a personal truth: that I had grown up with a sick parent. 

He was right. 

He reminded me that not merely my father's death, but my father's illness had been a source of tremendous pain. He wanted me to know that, for the record: he felt the choice I was making right now—to get well—set me up to be the best person I could for everyone I currently served in my life. And that was also true for anyone I welcome in to my family, in any manner, going forward. 

 

I knew he was right.

 

 

Still. I went from an "I Don't Know If I Want" to a "Can't Have," within hours. The sense of grief has been unutterable. What began as a vibration became a whisper which became a roar, and over time it has only grown louder. So many of my close friends elected to have children and I delight in their happiness and expansion as human beings. But yes, it aches.

Over the years the feelings have evolved. I met Alec—younger than I and likely not even courting the concept of children when we started dating. The greatest tragedy feels like robbing him of being a father, biologically so, without a lot of say in the matter. But we both understood what we were walking in to as we continued to commit to one another.  

Then JD V*ance started going on and on (and on) about "childless cat ladies." About "biological responsibility" and the selfishness of a woman who does not physically bear her own children for the generations to come. Again, there just weren't words to describe the experience of hearing that from an elected official, after everything. 

I don't know that I'll ever have the words.

 

*

So with all this at the top of my mind in recent days, I turn to the best discussion of grief, parents and children and healing I know: The Secret Garden.

  

The story is about a family ravaged by illness and grief, that discover the ultimate healing exists within nature—all symbolized by a near-dead garden returning to life. 

It’s also a story about parents and children…
 

In this song, Archibald Craven— unable to parent his son Colin because of the enormity of his grief, visits him as he sleeps and tells him an ongoing, bedtime fairy-story.
 

I know a lot about the themes of this story. (I once wrote about them, here)  In so many ways I identify with the children— growing up with parents, lost— to death and to grief.  But as I age I come to see myself in the adults too. And as so many parents are quick to remind me— I am not a parent. Yes, believe it or not, I am keenly aware that I don’t have first hand experience with raising children because I don’t have any of my own.

 

But sometimes? 

Dear Gd. 

How 'I wish,' I did. 

 

The Final Update on my Non-Colon

So. Hi Everyone.

Al here—providing [what I hope is] the last blow-by-blow health update in the latest chapter of ‘Adventures of Al’s Not-Colon.’

As previously mentioned, in May I had an experience onstage during a performance of The Music Man where I experienced blinding, lightning-fast 10/10 pain in my viscera, and was carted off-stage mid-show and hospitalized. 

 

A few weeks of tests in the Chicago area commenced, liquid diet, pain management, and I was delighted once again as I navigated the labyrinthine rigamarole of the American-healthcare system, as I was required to re-integrate myself back in to the Mount Sinai hospital system after 3 years of stability. 

 

What was wrong? I had 2 complex twists in my small intestine that leads in to the J-pouch, creating an obstruction and preventing me from being able to properly digest and pass food. The plan was to untwist me, and "tack me down" to prevent further twisting. And and and also? SURPRIIISE: once they got inside they discovered I also had a hernia! What can I say? I was always an over-achiever.

Last week—three months later—I was finally able to get the corrective "tune up" surgery I'd been waiting for since May, and wahoo: angels sang. If you have been through the joy that is the American healthcare obstacle course, you know how sweet the moment is when you finally get the treatment you need! I was home the same day and healing began. Slowly.

How it went/how it's going: Physically: 

 

The gist: healing at home was slow and FAR more painful than I anticipated. 

 

- Digestive: Amazing. I feel REBORN. It feels incredible to have the digestive system working again, drama-free. And I have returned to solid foods— which was incredible having been predominantly eating liquids since May. 

- Pain (internal): Going great. It started to ebb at day 3. 

- Pain (incisions): The major pain was the incisions themselves which were *eye-watering* in their pain level. The meds did not even make a dent in to the chandelier-ing I experienced whenever I vaguely moved, coughed, sneezed or made direct eye contact with any living creature. No exaggeration: these first 8 days post-op were beyond anything I had experienced in the first three surgeries (and, as a ridiculous statistic a proctocolectomy [removal of the large intestine, etc— ie, my first surgery] is considered to be the 4th most painful surgery to recover from — which is? WILD. 

How I am: Mentally 

 

I won’t lie to you friends, I am struggling.

 

I have felt wave after wave of physical traumatic-memory flood my body and psyche constantly in the last few weeks— sensations I had long anticipated putting to bed for good. While I was working my ass off between appointments to pay for all of this, the experience of going through some of these old “motions” (places, sensations, people, smells, sounds, literal pains) has not been breezy, and oftentimes has been outright (a word we overuse in pop psychology but I am told by professionals is apt here) triggering. 

One of the more frustrating elements of this has been the medical rigamarole of begging the system for help, waiting. Not getting to who I need to get to without doing a complex dance of charm-offensive, bureaucratic paperwork and sparring but judicious use of the "speak to the manager" voice (my least favorite voice of all). 

 

 Begging and waiting for insurance to cover things. And of course: not knowing exactly what was actually wrong, etc etc. 

- The greatest doctors I saw approached me with the respect and seriousness that comes with being the best in the world (thank you, Sergei Khaitov). 

- Some doctors met me with a “breeziness” that perhaps seduced me in to thinking this recent blockage experience is “no big deal” and something that could be handled relatively swiftly and without major interruption.  

- And then there were the doctors who outright convinced me I was “stressed” and that this was “in my head” and essentially: calling me hysterical without calling me hysterical. (It really is AMAZING being a woman... inside a healthcare system…)

It was… confusing. 

Further, so much of this was also experienced physically-without Alec— because our various jobs have taken us to different parts of the world since March. That has been extra hard. 

All of it led to me— (some of it not to be helped, some of it the power of denial)—  not really mentally grasping the scale and magnitude of what was going on inside me, partially because, I don’t think I wanted it to be true. In general I’m kind of a “slap-a-bandaid-on-and-get-on-with-it” kinda person. Not only do I not want to make a big deal, I don’t WANT it to be a big deal. I also don’t want anyone to think I AM A GIANT WEENIE. I don’t want to bore you all. I don’t want to talk about this anymore! Plus, I want to be "tough." I want to be "strong.” But sometimes toughness and strength are in surrender… Sigh. I am learning… 

I am heartbroken to have not been as present as I have wanted to be for my friends and family—missing milestones, big events; big shows, being with your children; not having the bandwidth for conversations and get-togethers that sustain meaningful connections, and sometimes forgetting or missing out on things that DO matter to me very much, simply because I am “doing colitis.” I think this is this colitis' greatest theft.

To illustrate how caught off guard I was by all of it I’ll describe the “aha" moment from the day of surgery last week. Moments before I went in to the actual surgical room, Dr. Khaitov's second-in-command surgeon Jackie (so nice, we go way back) closed her clipboard, took me by the hands, and said:

“Alexandra I want you to know we understand this is your fourth major bowel surgery in as many years, and we recognize that you’ve had a totally traumatizing surgical history.”

I stared at her. I vaguely blinkblinkblinked. Jackie continued:

"What you’ve been through is olympic, is cruel and unusual, and you’ve truly been SO great about it. But we’re going to do everything we can to make sure this is IT.” 

And then I just… began to sob. Because it was only then, only when this really nice surgeon was saying the actual words, giving me the permission about how I am allowed to VIEW this entire experience, that any of it actually registered with me. 

“…OH. Right,” my brain finally clicked. "This has been sort of...incredibly horrendous…and hard... and very very serious?” 

So I am taking a vulnerability leap here with my closest actual friends by sharing that I believe I am now experiencing  that “tabled” emotional reality in great big waves. I see it, I accept it, I apologize for not getting it sooner so that I could communicate it accurately to ALL OF YOU, and I vow to do and be and get, better. Healing is not linear, and these emotions must and will, be dealt with. It’s part of the healing. I once again ask for your grace as I navigate it. (You know. While also doing two unbelievably challenging plays. Because, art. But also because, healthcare.)

To every single one of you for your extensions of love, care, prayers, vibes, jokes, meditations. Thank you for the support, the gifts, the texts and voice memos and calls. The drives to appointments. The random FaceTimes. Thank you for being on my team. Thank you for allowing me to be any part of your lives. I have often said that being alive is worth fighting for— it is. But each of you, our connections and our stories and our love, is what that fought-for life is truly about. I am hungry to get back to it fully, ASAP. 

With all my heart (and none of the guts),

Al

Phoenix Rising

Thank you to the brilliant, visionary, cheeky, and utterly fabulous Dustin Dale Barlow for having fun with me dressed in my favo(u)rite celebratory colo(u)r in the heart of New York’s Chinatown. 

He’s the real deal.
 
For an hour I felt like the very best of myself.

Rising like a phoenix from an artistically abundant, but privately quite challenging (but ultimately victorious) summer of health ups and downs. 

Oh friends. I realize I'm being a little cagey and secretive about my health right now. There is a huge energetic difference between things that are "secrets" and things that are "private." Secrets contain deception, shame, fears of being disconnected with. Private points to things that are personal, not embarrassing or shameful but belong to a select, intimate few. 

 

I have never wanted my experience with ulcerative colitis to be secretive and drenched in any kind of shame. But I often sit on new while I collect information-- and this particular era of my life there have been a lot of waiting, wondering, holding patterns and "no new developments."

 

So I just... got on with things. As I always do. 

 

I really wanted my surgical journey in 2021 to mean the end of me discussing illness ever again publicly OR privately— but c'est la vie. Life happens. 

We persevere. 

 

All to say: this 60 mins of artistry and playfulness and celebration was more than a treat or a “play date”— it was a victory. 

 

These glorious photos were was last Saturday

I was in surgery Wednesday. 

And I’m still rising — stronger than ever— on this Monday. 

On the other side of the latest chapter.

Onward.
Upward.
Ever-rising.
Inextinguishable.

Catherine: The Great

The great MamaSilbs left yesterday— after extending her trip slightly (because I wasn't 100%)

 

I want to take a moment to publicly thank Catherine Silber not only for, ya know, giving me life, and a lifetime of care, but for enduring so gracefully beside me. Truly: I have no personal experience that could ever instill within me the ability to fully empathize; to begin to imagine what she’s felt every day for the last few weeks (and frankly, years.)

 

Sure, she’s smoking-hot and has the horse power of 10 men, but she is also a widowed woman bearing witness to her only child going through all of this. 

She has done so with breath-taking valiance, capability and never-ending one liners.

 

 

We’ve shed a totally appropriate amount of tears over this (and many things) together, but the last two care-taking episodes (in NYC and previously in Chicago) both in the physical absence of Alec— have truly been world-class. 

 

Brava Cath. The only kid in American that loves their parent more vociferously is Gus Walz.

Standing ovation.  

Four encores. 

 

Now: where is the watermelon?

4th time is the charm

After much a TO DO, the [unexpected? "Bonus?""Extra Credit?"] Surgery #4 went great.

 

The intention was to: 

1. correct two “twists/blocks”

2. stabilize my internal J-pouch (the “new colon”) from moving again in the future, and

3. figure out if anything else sinister was going on...

 

Going in, the surgical team wasn’t 100% certain of what they were going to find in the depths of my intestines— they had an IDEA of what they could ascertain from the (two!) MRIs and (two!) endoscopes, but the rest would be revealed once they got inside. 

So:

1. All twists and blockages, corrected 

2. J-pouch, sewn down (to my internal fascia— in case you were curious) to avoid future twists and blocks

3. plus, they discovered a hernia (wtf ?!) which was causing another blockage of its own. They fixed the hernia (that sneaky little b*tch...). 

After it was over the incredibly dashing Dr. K came out after, and Catherine Silber would like everyone to know that he hugged her…. TWICE

They super-glued me shut, gave me a Rx for pain, and, not-so-ceremoniously told me to go home (no beds).  

+ HOSPITAL NOTES: 

The experience of this surgery at Mount Sinai versus the experiences in 2020-21? Pretty stark. 

Many things were better: 

     - getting to remain with your next of kin right up until you walked in to the surgical area. 

     - no doctors in full hazmat suits and no more being separated by shower curtains 

But it was also many less good things such as 

- busier, louder, faster 

- much more hospitals-are-a-for-profit-business VIBE

- far less humanity, beside manner and general compassion. 

I felt a little “knocked around” and emotionally pulled in several directions about how I was supposed to feel ABOUT all of this (more on that later), and though I was told by the surgical team I would be in the hospital recovering for 2 days, I was very brusquely asked to leave. 

 

Anyway, what a roller coaster but it is behind me. (Maybe? They've said that before) Once again. 

 

I'm so glad for a chance to feel better after so many months of this limbo. 

And now? sleep.