From Poetry to POEMS (and back again)

While living in 1970’s San Francisco during the surreal period bookended by the unexpected death of my 49-year-old Mother and the drawn-out demise of my father four years later, I attended an event featuring Maya Angelou at an Oakland public library.   

After the program, the celebrated author took the time for a one-on-one with this young audience member, and to this day what stands out most in memory is the feeling of being listened to intently and a kind of caring about my thoughts to which I was not accustomed.  Unlike most conversations within my own family, when she asked a question, it was not to quiz me; there was no right or wrong answer, there was only my answer, my opinion, and my truth and that seemed to most interest the eventual poet laureate.  

Dr. Angelou’s wisdom features in many motivational quotes across the virtual and tangible realms. Meeting her that sunny Oakland day brings to mind the truth of one of her most popular quotes:

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.

Half a century later, though the details of our chat elude me, my entire being still resonates with those first inklings of feeling seen, heard, and validated conjured during that enriching encounter.  

Her first published book, I Know Why The Caged Bird Sings kick-started in me a passion for the written word that has lasted since. The experiences she described mirrored many of my own – experiences that would take years before I felt safe enough to share with those closest to me.  Early in my teen years, I came across the poetry of Dr. Angelou, and once again – my horizons broadened. Find her first published collection: Just Give Me A Cool Drink of Water ‘Fore I Diiie for a fine introduction to her mastery of the genre.  Lately, the wisdom of Dr. Angelou seems to permeate every aspect of my life, a golden thread connecting my days, experiences, and epiphanies with surprising – almost alarming – relevance and prescience.

“If you don’t like something change it. If you can’t change it, change your attitude.”

Recently I received an unpleasant diagnosis from my doctor and while  I cannot change the news he delivered, common wisdom dictates a positive attitude is a critical element when facing an illness of any sort. Since receiving this news I’ve been reminded of how blessed I am with a loving, present-even-from-the-other-side-of-the-country tribe of friends and family offering support and anything else I might need during this trying time.

The blessings, lessons, and cathartic (aka – overdue) shifts keep coming:  graciously accepting help, being mindful of overextending myself, and setting healthier boundaries are on their way to becoming SOP – standard operating procedure 

Most importantly, my childhood-learned habit of prioritizing the needs/egos/demands of those who regarded my presence as an option, or worse, an obligation, is no longer tenable. [Wait, was it ever?]  When you learn and master this practice at a particularly young age it’s only natural to carry on, perhaps even seek similar circumstances, to keep the familiarity close at hand.  

Receiving the diagnosis forces me to squarely acknowledge this self-subjugating habit and its effects: the reduced capacity to express my creativity in a consistent and authentic manner or pursue projects important to me, limited growth, too much time in flight or fight (usually flight) mode, and a relinquishing of the pleasures once enjoyed, whether of casual, fleeting or restorative – like poetry.

Once upon a time, poetry held an important spot in my life.  I made sure my children learned about Langston, Gwendolyn Brooks, Nikki  Giovanni, Sonia Sanchez, and of course Maya Angelou. When Isaiah expressed a growing appreciation for poetry during his elementary school years I was absolutely thrilled. Slowly over the years, poetry slid from the top of our charts.  Sure, this ebb and flow of interests and activities occur naturally as individuals and families grow and change.  I am speaking to a different and dysfunctional dynamic: my unquestioning willingness to set aside something so important to me in deference to accommodating another’s preference. Repeatedly.  [No, no one actually told me to stop pursuing my consumption of prose or subdue the pleasure I found in Sonnets; the slow edging away of poetry from my day-to-day life happened almost unnoticeably as my habits of keeping the peace by almost any means necessary, making myself more acceptable by presenting little or no challenge to some fucked-up status quo (yeah, I said it) and slowly releasing so much of what was once a vital part of who I am].

For Lent, I chose to give up the familiarity and comfort of my minimized self. [No I’m not Catholic but I dig this concept.]

To refer to the current situation as life or death would be over-the-top dramatic, however, it definitely qualifies as a matter of survive or thrive.

A few days after the arrival of 2023 my doctor, let’s call him Max, confirmed his earlier diagnosis of POEMS syndrome; a malady similar to multiple Myeloma, which thankfully was ruled out with a CT scan.  

What this diagnosis means:

POEMS is a collection of symptoms resulting from abnormal plasma cells and too much M-protein.  

According to Max, a hematology oncologist, mine is a one-in-a-million scenario. (I always knew I was special.)

Quick backstory: in late 2017 or early 2018 my platelet count shot up dramatically.  (How this change escaped the attention  of the expensive Beverly Hills concierge doctor, aka my former physician, still baffles the mind.) This elevated platelet count, which remained so five years on, created the environment for POEMS to take root. 

About 18 months ago, undeniable physiological changes began cropping up – a heaviness in my legs and feet, the occasional swelling of my feet, and the increasingly limited type of footwear my feet would accommodate. Eventually, neuropathy was indicated as the cause;  determining the source of the neuropathy was critical in prescribing treatment.  After switching medical practices – I feel as though I’ve found practitioner Shangri-la upon transferring to the extensivist program at UCLA from the Cedars-associated concierge practice –  it took a mere six months to diagnose POEMS.  Unfortunately while dicking around with the concierge practice, the neuropathy continued to progress and the capacity to walk without falling dwindled rapidly.  These days, I require a cane when out and about in the world and a walker when in the house (where most accidents happen!)

Four weeks ago I began treatment – basically taking more medicine than I ever have before.  As someone who has a hard time tolerating any prescription drugs, this has been a real ass-kicker.  My reactions could definitely be worse, but the effects are undeniable.  It’s basically like being pregnant again (which in my case, was next-level “morning” sickness lasting all day, for a full five months into gestation).  

Yet the silver linings keep comin’: Addressing this malady puts a lot of other sh*t in perspective. 

Plus, I got a temporary handicapped parking permit!

Blue Shield’s denial of the RX for Daratumumab, the one the drug administered in-office on a weekly basis, means I have a bit more flexibility travel-wise for the next couple of months. Also important – my appetite remains largely unaffected, though my cravings for a simpler diet – so long to most of my fave restaurant meals – have grown stronger.   Update: Midway through February my tastebuds went on strike.  I taste next to nothing.  Sweet savory spicy –  it’s all gone.  

Most importantly, both my current oncologist and the doc from whom I sought a second opinion, see a full recovery for me, though it may take a couple of years and requires a particularly grueling Stem Cell Transplant procedure this coming June. 

Much of the aforementioned clarity involves the excruciatingly painful realization of how much precious time and energy I spent prioritizing certain @!&* in detriment of my own well-being.    While this is a crappy way to wake up from this brand of dysfunctional stupor, I feel all kinds of grateful that this bitch-slap back to reality is not as drastic as it could have been.

POEMS is teaching me how to – among other things – identify what really matters to me and how to not only listen to my body, but to honor what it tells me.  

The most profound lesson though takes me back to the wise words of Dr. Maya Angelou: 

“Never make someone a priority when all you are to them is an option.”

Read that again.

Internalize it.

Instead of soothing the demanding egos, managing unrealistic expectations, or entertaining notions in conflict with my own North Star, I’m finally making Toni the number one priority. This starts with figuring out how and what to eat as my body acclimates to new medicines (it always starts with the food!), prioritizing the care and nurturing of my Self, questioning so-called authority and of course planning a solo date to check out the poetry sections at my local independent bookseller.

Love Y’all!

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