"Hallelujah"

© Michael Kushner

The great arti-vist Lauren Molina asked me to be a part of this incredible evening celebrating Equal Rights (with an all female band!) at 54 Below months ago. It’s always an honor to contribute my voice to the chorus crying out for peace, equity and freedom.

The world is in crisis, and I think about it privately far more than I discuss in internet spaces— partially because these spaces can be didactic and unforgiving of nuance, but equally because … there is sometimes simply nothing to BE said. 

I don’t exclusively adhere to the belief that silence ALWAYS equals violence. Sometimes silence is golden— because in that silence we can deeply listen and hear one another, our inner voices, and sometimes even the Divine.  

*

I’ve been so deeply "in the wilderness" recovering from surgery #4, that I'd put it entirely out of my mind that I'd (joyfully!) agreed to participate in the Equal Rights concert at 54 Below. Something that’s usually medium-fun (and can be medium-stressful).

I got there and …. Absolutely out of nowhere, I felt like something whispered to me

          “You must sing Leonard Cohen’s 'Hallelujah.'”

I’ve never sung it before. I didn’t really know the words. But a force was saying “do this.”

One of music’s greatest poets— the peerless prophet Leonard Cohen penned this in [my birth year] 1983, and “Hallelujah” has been lullaby, prayer and battle cry ever since, in countless voices. And although I joined this genius group of women to uplift my voice for the entire world, for me personally, this was a “cold a broken Hallelujah.” 

I’m emerging from another health miracle, experienced within a season of solitude— I am “a baffled King;” I am “beauty and moonlight” —all all all. I crawled to 54 below, not knowing what would emerge “from my lips” and what’s left of my guts… and surrounded by friends and strangers I was just: transported. It was like Gd (one I don’t always adhere to or believe in, the way we’re conventionally “supposed” to?) but — That Divine Force was with me. For sometimes songs are prayers indeed — and I felt a force move within me that whispered:

“Hey kid. You made it. Now sing. Now LIVE.”
 

Hallelujah.

“This world is full of conflicts and full of things that cannot be reconciled, but there are moments when we can transcend the dualistic system and reconcile and embrace the whole mess, and that’s what I mean by ‘Hallelujah. That regardless of what the impossibility of the situation is, there is a moment when you open your mouth and you throw open your arms and you embrace the thing and you just say, ‘Hallelujah!... The only moment that you can live here comfortably in these absolutely irreconcilable conflicts is in this moment when you embrace it all and you say, ‘Look, I don’t understand a thing at all—
Hallelujah!’ That’s the only moment that we live here fully as human beings.”

- Leonard Cohen

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.

Things I like about Alec: a List

Alec is currently in Edinburgh for all of August, for the third year in a row. It’s been quite the year of time apart— we will really only been together in bursts of 3-14 days from March til September. It’s been tough, but a challenge we are more than capable of rising to— after all, our love was born of, and fostered within, long-distance. Plus, it is an incredible indicator of our mutual professional/artistic abundance this year. Yay abundance.

All that said? I freaking miss him. And wanted a chance to list a few things I love about him— large and small. I love Alec. And you know I love me a list. 

So. Without further ado

Alec:

- has a deep, deep love for theatre and will discuss it at length with anyone, any time, any place

 

- is always up for a walk on our "favorite streets," always (I mean always)

- is always up for a laugh, always (I mean always)

- has a deep, deep love for board games and will discuss them at length with anyone, any time, any place (even strangers… in line at the grocery store)

- has the actual kindest eyes that sparkle like diamonds when he smiles therefore reducing me to a drippy pool of goo

- wakes me every morning with a kiss on the forehead and the question “will you be mine today?”

- he tells me I'm pretty, even when it is abundantly obvious that "pretty" is not what is happening, lol

- quite charmingly, does not really care about “sportsball” but cares a great deal about fantasy football (and extra charmingly, he once asked me what the “symbol” on my Tigers baseball t-shirt was to my extraordinary delight. Don’t worry, Detroiters: I set him straight)

- makes an out-of-this world traditional stir fry (it is apparently very important to use day-old rice)

- makes an equally out-of-this-world egg of any variety

- is, was, and continues to be very supportive about my Jewishness in all its iterations and colors and shapes and never gets judgey or squeamish about the word “G-d” and is always up to try new things and learn new things with chutzpah

- loves board games more than any person I have ever, ever known. So much so that he texts his best friend henry out of absolutely nowhere to explain in detail a special move he made in a board game he played by himself, and though the boxes of games have taken over our entire 800 square foot home, it is worth it to see his glee.

- sends me pictures of Tati even when we are all in the same room

- is the biggest, most passionate, most genuinely enthusiastic cheerleader to everyone he loves without a scrap of comparison or envy or anything other than astonishing genuine enthusiasm and celebration. 

 

- really hates to be wet (and will avoid activities with the excuse ".........sounds wet")

- puts so much love into the dinners he makes us, I swear I can taste the actual love like it is an additional spice

- is a bonafide master at playlist compilation assemblage AND naming (I'm telling you his skill level in this arena is wholly unmatched)

- is just so good— and I mean so, so staggeringly good— at being a Cat Dad

- is very very brave about his big big feelings

- truly appreciates when we go to a musical and I explain in staggering Wikipedia-like detail the entire history of the musical 5 minutes before it begins.

- takes longer than anyone I have ever known to hang something on a wall. A mirror, a frame. A hanging plant— my Gd. I bet he breaks records for  h o w  f r e a k i n g  l o n g  it takes him to hang a thing. Bless him. But it’s always straight as hell.

- knows that my favorite flowers are ranunculus and when he cannot buy me an actual ranunculus, sends me photos of them “just because”

- will pull over (in a nanosecond) to do something fun

- teaches me every single day (without being a jerk about it) about how to expand my thinking, empathy and capacity to connect with humanity, and also encourages people to be their very highest selves.

- is not afraid of taking giant, big, scary leaps into the unknown

- has *that* gene where he is incredibly good with little kids (and it isn’t put on, or dumbed down— just a genuine joy spent playing) 

- kisses like whoa

- will drop whatever he is doing when you tell him you are feeling down and do whatever it takes to ease the moment (sometimes that includes telling a story, sometimes a distraction, and sometimes just holding you in silence)