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:
I stared at her. I vaguely blinkblinkblinked. Jackie continued:“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.”
"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
Posts
No comments:
Post a Comment