Love Thy Neighbor

 

My neighbors do Hot Yoga.  This causes them to sweat, which apparently makes their clothing smell.  The smell is displeasing to them, so they do their laundry nightly, with the strongest, sweetest smelling scented detergent they can find.

There are so many things about this that befuddle me. First – we (as in my neighbors and me) live in Florida, a land of perpetual summer, where winter is just some kind of faraway long-forgotten dreamscape.  If you want to do hot yoga, all you have to do is step outside your front door and dive into a downward dog, and there you are. Perspiration is kind of like a way of life here.  It just comes with the territory.  Why anyone would feel the need to go into an enclosed room with pumped-in heat for the sake of spiritually sanctioned sweat is a bit of a mystery.

Furthermore, this compulsory clothing cleaning has unfortunate repercussions for me and those I live beside (my fellow chemically sensitive residents at the one and only place in the country designated for people like us to live safely and affordably), as the fragrant fumes cause tremendous daily distress and discomfort.

My yogi neighbors know this.  They are aware that they live beside people who are physically compromised and at risk.  When I offer to provide a lifetime supply of unscented detergent, they decline – insisting that only scented products will sufficiently remove (a.k.a.  cover up) the odor in their clothing.  In the transition from yoga practice (presumably promoting the flow of love, open-heartedness, and unity consciousness in addition to the flow of sweat gland excretions) to the mundane reality of life, they choose the fragrance with its known ramifications for their neighbors, rather than the pesky presence of their own perspiration.

And here is where the question arises, as it does over and over in so many ways:

Whose needs get accommodated?  Whose needs are “special” enough to take precedence over the needs of others?  And to what are we “entitled” as citizens and human beings on this Earth?

They have a need for sweet smelling clothes.  I have a need to breathe.  While I personally would see breathing as pulling rank in this particular equation, it just doesn’t work so simply. There is much to explore in our personal, social, and political worlds about whose needs get prioritized and attended to, and whose get neglected, overlooked, and denied.  But that’s a large bite to chew, and it’s been quite a while since I’ve last written, so first -let me back up a bit and to bring you up to date.

I have been living in Florida for the past 9 months.  I left behind my life of 22 years in Philadelphia, and came here on the promise of an environmentally safe living space (with the added bonus of living close to my Dad and sister). And as happens with promises, despite the best of intentions, sometimes reality falls short.  My entry into this new place has been quite a ride.

Let’s begin with what I will call “the clothing mishap”. (Could’ve called it the clothing calamity, crisis, or case of cosmic cruelty, which would have packed an alliterative punch, but I’m practicing perceiving things more positively.)  I had boxed and shipped most of the clothes I wanted to have with me in Florida, due to the very limited space in my car when I made the move.  The boxes arrived strangely saturated in something pervasively perfumed and toxic-smelling.  I was later informed that here in Florida, it is common for delivery trucks to be sprayed with things like Febreeze – I suppose nobody likes sweaty mail.  I tried hanging everything up on clothes lines for weeks, only to learn that when you hang clothing on clothes lines for weeks in Florida during the hottest summer they’ve ever had, your clothes will turn to mold.  So I ended up with moldy, chemically infused clothing that never quite recovered.  Thankfully, it was so hot that clothing was essentially non-essential, and for four months I basically wore a sports bra and shorts – which could have actually been a good thing.

Having spent the past 3 flea-infested, incessantly itchy years covered in long sleeves, socks, long pants, and rubber bands around my ankles – my arms and legs longed for the light of day.  Drooling with anticipation of having bare, exposed skin at last, I spent my first Floridian week clad in nothing but the aforementioned sports bra and shorts.  I was soon dismayed by the disheartening discovery that Florida mosquitoes apparently find me irresistible.  (I do find it strikingly noteworthy that I am so profoundly attractive and enticing to all forms of tiny biting creatures.  Humans, on the other hand, have been significantly harder to attract. The head-to-toe skin coverage along with the pants and rubber bands probably didn’t help that particular cause.)  Every time I stepped outside, I returned covered in fiercely itchy welts.  Since long pants and shirts were neither available nor practical (just to reiterate – South Florida summers are insanely, inhumanely hot), I decided to remain indoors indefinitely.  While this continues to be my primary strategy nine months later, and is likely to remain so for the foreseeable future, I recently purchased  a set of bug-proof clothing – pants and a long-sleeve shirt made of mosquito netting,  which I think is a brilliant invention  (if not entirely fashionable).  The pants are, oddly enough, extremely itchy – but short-term itchy pants are definitely an improvement from long-term itchy welts that keep you awake all night.

And speaking of being awake all night – the mattress in my new apartment had been aired out on the owners’ porch for some time before my arrival, but was still apparently off-gassing – and seems to need about another half-century before those gasses have gone off to wherever gasses go.  I tried putting 5 layers between the mattress and myself, with a combination of barrier cloths, mattress pads, sheets, and blanket – and putting my body on the top, with nothing remaining to put on top of me (which was actually fine because it’s so hot – there is no need for things like top sheets or blankets).  I felt very princess-and-the-pea-like, as I could still not sleep because the smell of the mattress came right on through each and every layer.  While I do like how this part of my sensitivity has an air of royalty to it, I thankfully seem to have figured out a temporary solution, using mylar and foil as added protection, and for this I’m deeply grateful.  And I’m now quite adept at settling into slumber to a chorus of crinkly crunches.

And since I’m talking about the apartment itself now – let me say a few things about that. The efficiency unit I moved into, sight unseen and smell unsmelled, unfortunately had – and continues to have – some issues.  I was able to overlook the immediate take-over of the ants that seem to have gathered from all corners of the state to take up residence on my bathroom floor (compelling me to keep socks on at all times, and leading me to sing the refrain “tiptoe to the toilet”).  I was able to calmly cope with the plethora of what I learned to be “potato bugs” crawling around (leading me to sing “You say potato, I say po-tah-toe) on a regular basis.  And even the appearance of “palmetto bugs”, which seem like some kind of genetically engineered hybrid of a roach, cricket, grasshopper, and toad, did not faze me – aside from almost falling when one jumped out of my sink unexpectedly.  However, singing away my stress was simply not effective when it came to environmental challenges.  The air conditioner reeked of mold, and I felt sick every time I turned it on – which was always because, if I haven’t yet mentioned this, Florida is freakin’ hot.  The owners tried to help by replacing that unit with another air conditioner, which made my whole apartment smell like some combination of wetness, decay, and death. Ultimately, that air conditioner did actually die, in a sort of homage to the odor it had been creating.  But the last one they had available to offer, which is still in my apartment, sadly causes the same smell. (One happy outcome – The air conditioner smell is so strong, it covers the neighbors’ laundry smell.  A sort of lemonade from lemons kind of thing. Not that I would actually make lemonade  – I’m more of a lime in seltzer type, but the point remains the same.)

Then there was the matter of transferring my Medicaid to Florida, which did not turn out the way it had been explained by the kind Medicaid people in Philly, who actually give health coverage to people with no income.  Seems here in Florida, income is irrelevant.  The only way I can qualify for Medicaid here is to be on Social Security Disability.  And I am not yet on Disability because I was denied, and although I appealed that denial two years ago, at the time of my move I had not yet even been given a date for a hearing.  And the only way I can qualify for an Obamacare plan is to earn a minimum monthly amount, which I do not earn because my disregarded disability limits me.  So…no health insurance for me.

And as fate would have it, I promptly sustained an injury requiring medical attention after living here for one month.  Here is that brief story: Upon my arrival, I felt suddenly compelled to try running in an attempt to get some exercise.  Spurred on by the energy of the Olympics and feeling some strange solidarity with those athletes who push themselves beyond all reasonable limits, I awakened each day at 5 am and ran 3 miles before my conscious mind could remember that I, in fact, am not an athlete.  One morning I started to run, and soon felt a strange pull in my groin area. Overlooking the signal being sent by the pain that something had gone awry, the Olympian in me pushed myself to complete the 3 miles.  And then I stopped running.  And then I noticed the unbearable pain.  And then I noticed that I could not even walk.  And then I spent the next several months relying on crutches, walkers, and grocery store electric carts. One happy discovery – People get out of your way when you’re cruising down the aisles of Whole Foods in an electric cart.  And strangers extend acts of kindness, reaching things off the top shelves for you that you wouldn’t have been able to reach even if you were standing because those shelves were not made for people who are barely five feet tall. And speaking of that – While sitting in those wonderful carts, my feet actually reached the floor, instead of swinging around in the air, like they do when I sit in any chair made for grown-ups.  Not that I recommend injuring yourself , but  those months will be remembered as some of my most pleasant shopping experiences. And while I now know that groin injuries can take at least 9 months to heal, and possibly forever to fully recover, for a moment in time I can say that I indeed had a good run.

But back to my neighbors.  The “seasons” have turned, which essentially means that the 3 “winter” months, during which it is possible to keep the windows open, have passed.  The good part of the return to closed windows is that it keeps out the yogi laundry fumes.   The not so good part is that now I am once again reliant on my air conditioner.

I ride the waves of rage and indignation at what so often feels like societal blindness to my own basic needs for survival.  I ride the waves of rage and indignation at what is so clearly societal blindness to the basic dignity of all Beings.  I look around at the planet and its inhabitants, and recognize with perspective and poignancy how privileged I am, and humility returns.  And I surrender, sometimes gently, sometimes angrily, sometimes defeatedly, and sometimes gracefully – making my peace with what is.

While I can’t claim “entitlement” to financial support or healthcare coverage or safe, healthy housing, or unscented air to breathe – I can take a stand for doing my part in co-creating a world in which we are interested in not just our own needs, but the welfare of our fellow humans as well.  And in the chaotic craziness of an “America First” mentality in which we need to diminish, disregard, and demonize “others” in order to raise ourselves up, I can challenge myself daily to be the kindness I seek (which includes interrupting my mind’s tendency to fantasize about hurling bags of dog poop at my neighbor’s house to give them just a “whiff” of what it’s like to have your home invaded by sickening smells).  But where was I?  Oh yeah – kindness.  Not as easy as it seems. I return – reluctantly, resourcefully, resiliently.  Ah, yes.  Kindness.

In the big picture, my needs are indeed met.  While the big picture is often difficult to discern because the small picture is so very vivid and compelling – the truth is that I am really ok.  And smells and sweat and symptoms and sensations and creepy crawly creatures – All of these are temporary circumstances.

And when I am perceiving from this proper perspective, I can find gratitude for the blessings in all of it – The ability to be with my almost 91-year-old Dad during this final chapter of his life, the chance to be closer to my only sister, the mornings like this one when the air is magically cool and the blue of ocean and sky welcomes me gently and gracefully into the new day.

So I look to the next moment, and the next, and the next, with open eyes and an open heart – if not always an exactly open mind.  Witnessing this unfolding journey as an endless supply of “creative material”, I relax – making a soft, silent promise to myself that I will keep on writing, keep on discovering the delight in the daily details, and keep on recalling the larger view.

And while I earnestly continually strive to cultivate compassion, acceptance, and forgiveness –  if my neighbors move before next “winter” comes, that would be ok too.

meaning, memory, mom, and me

A few days ago, my mother was complaining that she can’t remember anything. She expressed significant anguish about this, asking “What is the point of living if you can’t remember your experiences later?”. My immediate response was to offer a piece of my brilliant wisdom, saying “I think the point is to have your experiences while you are having them”. And I do believe that is true. I do believe the point is to mindfully move through life with presence, with passion, with playfulness, and with peace (also with positivity, patience, and perspective. Also with partnership – if you’re lucky enough to find someone on the planet with whom to partner. And also with percussion – because really, what would life be without rhythm?)
My mother’s question hung in the air long after we said goodbye, giving me great pause (in contrast to the complete absence of pause before the glib response that had tumbled out of my mouth). There is a vast emptiness now for her, where once there was a treasure trove of stories and recollections to reflect on and re-experience. How excruciatingly sad – Now there is just the knowledge that things have happened, because we tell her, but she can’t invoke the pleasure of all those lost moments.
A prime and particularly painful example: During my visit last year, I arrived to the nursing home just when the daily entertainment was scheduled to begin. My parents were there in the lobby, with the other residents, awaiting a performance of some kind. It turned out that the entertainer of the day was a no-show. I spontaneously asked the staff person in charge (who at that moment was trying to keep people engaged with her rendition of Rudolf the Red-Nosed Reindeer, a rendition which one can only hope will never need to be reprised) if I might be able to offer some songs, and she happily handed over the microphone! There I stood, singing song after song after song – many of which were requests being called out by my Dad. (It would be more accurate to say “all of which” were called out by my Dad, as he doesn’t really notice things like 75 other people in the room who might have wanted to make their own requests.) Thankfully, I know and love the scores of the musicals that my parents love. I sang for an entire hour, encouraged by the audience applause and appreciation. The best part for me was that my parents got to hear me sing these beloved songs, and got to witness their daughter spreading joy. My Dad has never stopped talking about that day – It brings him such pride, especially the part where the residents continued asking me, every day of my visit, if I would be singing again. He loves to say that I was the best entertainer they’ve had there. (just a bit of bias)
My mother doesn’t remember it at all. She wouldn’t even know it had happened if my Dad didn’t still talk about it. It pains her intensely to hear about it and to know that she was there, but to have absolutely no personal recollection of the experience. It pains me too. I want it to be a shared precious memory for all of us. And she has to settle for a created memory built out of the stories we tell her. Perhaps this is what memory really is for all of us. We construct stories to mark experience, and the memories become solidified and/or transformed with the re-telling of the stories.

But the question remains – What is the point of an experience that you won’t remember having? It’s like the tree falling in the woods question – Does it make a sound if no-one is around to hear it? Does an experience have an impact if it will be promptly forgotten? The good news here is that my mother doesn’t even remember bringing this up. Another perk of memory loss – the overnight resolution of existential crisis.

I seem to be encountering existential questions of my own these days, in recent interactions with the healthcare system, such as it is. When I went on long-term disability, I lost my health insurance from my prior employer, and had to get my own coverage through the Obamacare plans. I won’t bother going into detail now about how that process went, but I will say that generous mental health benefits should be offered on all of their plans because you will need to utilize them by the time you’re done subscribing. With the new year came new prices on these plans, and I had to change plans once again, this time getting an HMO plan because it was the only one I could afford.

I recently needed to get a foot X-ray done, and so I called the insurance company to be sure that I would have all the correct paperwork submitted in order to have the X-ray covered. This led to hours on the phone with a variety of people who all told me completely contradictory “information”. (Just once, I wish that my phone call would be the one that “may be recorded for quality assurance”. I simply want to know – if it were recorded – Who the Hell is assuring the quality?)
I finally concluded that I would need to have a referral submitted by my new Primary Care Physician. So I called that physician’s office, and was told that I would need to come in for a full physical and review of history, so she could be up to date on my health. I made the appointment, as directed. When the doctor came into the room, she appeared confused and slightly disoriented. She looked at me quizzically and said:
“Why are you here?”
I explained that her office staff told me I had to be there and that I was expecting a physical. She stated that she did not have time to do a physical, and proceeded to ask some standard questions about my family history and my own health. I explained that I have Multiple Chemical Sensitivity, which she had never heard of, and which seemed to confuse her further. She took a few notes and then suggested that I get a tetanus vaccine. I declined, and the visit ended. (As I was leaving, I noticed that she had written the diagnosis as: “Medical chemical sensitivity”. Hmmm. I’ll give her credit – It’s pretty close. And it could actually be a new diagnosis for chemical injury resulting from medical interventions such as unnecessary tetanus vaccines.)

Two weeks ago, I also had an appointment that was made by the Social Security Disability people – to do a mental health status exam. This appointment was made because I wanted to have documentation of the depression that coincides with MCS, to be considered with my Disability application. So they sent me to see one of their psychologists. I walked in, and the man conducting the interview asked about any current treatment. (The term “interview” is being used loosely here, to mean: the process of watching someone in authority compulsorily complete a form about you, in your presence.) When I told him I was not in treatment, he paused, looked up at me quizzically and asked the following question:
“Why are you here?”
I began to wonder whether this whole thing was a big Jungian archetypal dream from which I would awaken with the knowledge of life’s purpose. But it was clear that I was indeed awake. So I answered him, explaining that I was there because I suffer from depression. He went down his list of standard questions and checked off the boxes as I gave my answers: Decrease in energy? Yes. Decrease in social activity? Yes. Difficulty sleeping? Yes. Feelings of hopelessness? Yes. (Not even a blink of an eye in response to these answers. Just on to the next question. Gotta love a system that conducts its business so efficiently. No time-wasters like an empathic pause in the presence of personal pain) Difficulty concentrating? Yes. And here’s the good one: Difficulty with memory? Maybe. Compared to my parents, my memory is stellar. Or so I thought.
The psychologist conducted a standard memory test – telling me 3 words that I would have to remember later, and then asking me a bunch of mathematical questions that required my full attention. After focusing on all those numbers, he asked me to repeat the 3 words. I could not. This was the evidence he needed to confirm my own short-term memory impairment.
(I would like to think that most people would have trouble remembering words as mundane and uninteresting as “pen, apple, and chair” – particularly after repeating sequences of numbers backwards at 8:30 a.m. on a Friday morning , having gotten up at 4 a.m. to be able to do their full morning routine, and then driving for an hour into the city during rush hour, and then inhaling enough cologne from the person conducting the interview to cause the blood in their brains to coagulate.)
The good part of this is that there is now concrete evidence of my limited mental capacity – which may potentially support my disability application. The part I don’t love so much is that there is now concrete evidence of my limited mental capacity.

Tomorrow, I may or may not recall the details of what I did or said or thought today.
My parents may or may not recall anything we’ve talked about before.
This is often frustrating and sad.
And I still believe what I told my Mom.
The next time I encounter someone asking me why I am here, I will say “to have the experience I am currently having”.
And then I will likely ask to be recorded for quality assurance.

what a year it has been!

The seasons have turned 4 times since I last wrote. Winter is, once again, upon us. And I fear, dear Readers, that I have left you in the lurch. (I don’t really know what a lurch is, or how anyone would know which lurch is specifically “the” lurch being referred to here, but nonetheless I regret leaving you there.)

I am returning to this journey of putting experiences into words, in the hope that my words will resonate with you in some significant (or perhaps minor, or at least somewhat recognizable) way, and that these words – when written – will cease taking up so much space in my overstuffed brain file of “significant things to write about”.

So, perhaps I should briefly recap the turn of events that led to the predicament in which I now find myself. It all began when I came home one February day to find a note posted on the building door, stating the following: “The building has been sold, and is under new management. Renovations will begin immediately, and will be taking place every day.” This seemed for a brief moment in time like a potentially good thing – A new owner might actually make needed repairs and take care of things like doors that don’t close, windows that don’t open, and the thousands of gnats that take over the apartment in the warmer months.

Alas – the new owner had plans of his own, which involved the complete de-construction and re-construction of the entire building, from the ground up. Calling this process “renovations” is somewhat like calling a category 4 hurricane a “strong breeze”. Overnight, I found myself living in the midst of a demolition zone, with the entire building being gutted all around me. While I generally do my best to adapt and “go with the flow”, I do have my limits. I can now say with complete certainty that the epicenter of a construction site is not a recommended habitat for a person with MCS. (According to Wikipedia, I have incorrectly used the word “epicenter” here, as it is supposed to refer specifically to earthquake-related events. However, since the Wikipedia experts do concede that the term “may be misused as a metaphor to describe focal points of unstable and potentially destructive environments”, I stand by my technically incorrect but metaphorically precise word choice.)

My system became instantly overloaded, and I lost the capacity to continue showing up as a functional person at my job. I stopped working and never went back. I got approved through my job for short-term, and then long-term, disability. When the term transitioned from “short” to “long”, my employment was officially terminated.

This is a very interesting change in identity. For most of my adult life, I had been known (by others and myself) as an employee, a psychotherapist, a professional, a contributing member of society. Following a brief frenzy in the pursuit of properly produced paperwork, involving doctors’ visits and the completion of frustratingly formulaic forms, the transition was complete. The old roles fell away, instantly replaced by the new role of “sick person”.

I will admit that finally being considered disabled has its ups and downs – a subject likely to be explored further at a later point. For now, I’ll simply observe that the “What do you do” question is ubiquitous in our culture, and that “being a disabled person” is not an answer that lands well – particularly in a first (and most likely last) conversation with someone from an online dating site. It is worth noting that the last 3 men I have interacted with from those sites have walked away upon learning of my condition. I truly appreciate their honesty about their needs to be with a “healthy woman”, their fears about how my illness might impact their lives, and their inability to handle this particular challenge. And I do appreciate their willingness to speak their truth and to name their needs and limits. And I do want to tell them that they have no fucking idea who they are walking away from, that they will live to regret their foolhardy choice when the body of their next heroically healthy partner breaks down in some unplanned, unpleasant way, and that they should go fly a kite off a short pier. (I know Wikipedia would likely tell me that I’ve incorrectly mixed my phrases here, but it works for me.)

Returning now to the synopsis of my past year:
In the whirlwind of becoming disabled and unemployed and without a reasonably safe or sane place to live – I managed to find an apartment and to move again, only 8 months after moving into what had now become uninhabitable. Circumstances required immediate action, and I immediately acted. Inner strength and determination rose up from unseen wells, enhanced by the strength, love, and support of dear friends, and when my world seemed to throw me up into the air, I landed safely. For this, I am profoundly grateful.

One observation I’d like to mention here is that decisions made in the midst of crisis may not always be the most well-thought-out ideas. I do cut myself some slack about this, given that I made what seemed to be the best decision at the time. (According to the idiom dictionary – “cutting slack” is technically a nautical term regarding rope-maneuvering activity. Given the very high likelihood that I will never use the phrase in any ship-related context, I’m glad to be able to use it here. And if my compulsion to elaborate on the origins of phrases is more irritating than interesting, kindly disregard .)

I moved into an “apartment” that is the entire 3rd floor of a 115-year-old Victorian mansion. The term “apartment” is not really accurate here – as there is no door. It is actually a collection of rooms, each of which thankfully does have a door. The good parts: no carpeting, no forced air heat, no recent painting, no smoking, and the landlady’s willingness to ask tenants to use fragrance-free laundry products. While these are most definitely good parts, there have been some teeny tiny problematic parts along the way.
Perhaps it is best to swiftly summarize:
Due to the lack of any barrier between my “apartment” and the two floors beneath me, every odor/chemical/fragrance used by the tenants below wafts upward and saturates the air in my space.
This in itself would have been perhaps a less than perfect, but manageable, challenge.
The freezing cold temperatures in early spring, when I moved, soon turned into sweltering summer heat. Because of the type of windows, air conditioners were not possible in the living room ( my movement space) where it was typically 90 degrees. I got through that, choosing to think of it as an unintentional introduction to Bikram yoga, and a ready-made sweat lodge.

Then came fall – and with it, the crawling creature curse (which seems to have followed me from the gnat neighborhood). It began with noticing disturbing bedbug- type bite patterns on my body, and then a profusion of insanely itching bites around my ankles and calves, and then learning from the tenant below me(with multiple dogs and cats) that the house was infested with fleas. This was soon followed by the multitudes of mice that brazenly scurried across my kitchen counter on a regular basis. (The good thing about their brazen boldness was that they marched right into the traps set on the counter – No need to even place any bait. The not so very good thing is that dead mice on the kitchen counter is a bit of a disruption to meal preparation.) I learned that mice do not like balsam fir oil or peppermint oil, and so I placed these aromatic repellants all around my kitchen. (The good thing about this is that the potent smells effectively repelled the mice. The not so very good thing is that they also effectively repelled me, providing an added dimension of dinnertime disruption: the inability to breathe.)

Hoping  to avoid pesticides, I first attempted to address the flea issue with what might be summed up as “the diatamaceous earth debacle”, during which I discovered that if you cover your floors with diatamaceous earth and then try to vacuum it all up, you will promptly and permanently destroy your vacuum, and you will also inhale enough particles to likely scar your lungs for life. When this approach failed, I reached out to a variety of exterminators. After multiple inspections -all with bizarrely different ideas about what needed to be done – I was convinced that I did not have bedbugs and that, despite not actually seeing any fleas, it would be wise to do a chemical flea treatment in the apartment. This I did, in a perfectly orchestrated plan, coinciding with a trip to Florida to be with my family. The part I hadn’t planned on was that somehow the fleas seem to have traveled with me in my car, perhaps seeking warmer climes. More on the Florida trip later…
Upon returning from Florida, I surprisingly felt ok in the apartment, pesticides and all – with the minor irritation of crying spells on a daily basis, and the ongoing appearance of mysterious itchy bites which still have not been explained.
And now winter is here. (The good thing about this is that fleas apparently take a break and become inactive in the cold. The not so good thing is the complete lack of insulation in this “apartment” and that, unlike fleas, my own human body goes into hypothermia instead of hibernation).
Not a storm window to be found in the place – and I have discovered that if I keep the thermostat at 60 degrees, I can keep my heating bill down to “only” 200 dollars. This poses an interesting dilemma: Do I turn up the heat and end up on the street because I can’t pay the rent? That sort of seems to defeat the whole staying warm agenda. Or do I keep it at 60 degrees and end up having a complete mental and physical breakdown, which might land me in an institution – where despite ever-present exposure to conglomerated chemicals, I might thaw out a bit?

This is where I sit today – in one of the rooms, with the door closed, a space heater on, and the thermostat turned all the way up to 62 degrees. I’m looking at the snow falling outside my uninsulated window, and in a moment I’ll start my morning movement routine – during which at some point the blocks of ice where my feet should be will melt, and once again I will experience having lower extremities that are not quite so extreme. And then I will continue to search for housing. And maybe, just maybe, I will find a place that is not saturated with scents, or crawling with creatures. or flipping between freezing and frying. And maybe I’ll call it “home”.

chickens, cows, and horses

It’s just like the story they told us in Hebrew School. The man complains that he and his wife don’t have enough space in their home, and the rabbi instructs him to keep bringing in additional animals each day, leading to the man’s increasing despair and complaints. Finally, the rabbi tells him to release all the added animals, and the man joyously discovers that his home has indeed become much larger.

It’s all about perspective.

Although I haven’t complained to any of my local rabbis, somehow the lesson is being presented to me again.

I thought it was bad enough.
I thought the smell and off-gassing from the peeling wall behind the radiator in my bedroom was a big deal.
I resented having to sleep on my living room floor, on a foam mat (with the firmness of a marshmallow) that had to be covered in various layers of plastic as a barrier from its funky foamy fumes. (Incidentally, sleeping on sheets of plastic is a sensory stew of crinkly, slippery, and diaper-y.)

And then came the chickens and cows and horses.

One evening, while attempting to sleep on the aforementioned foam, I was suddenly overwhelmed by intensely strong fragrance wafting through the air. I could not detect its source, and could not get away from it.
I did not sleep at all that night, and every MCS symptom in my repertoire came alive in full force.
The next day, when I stepped into my bedroom to get dressed, I immediately was assaulted by the smell filling up the room. I knew right away that the person living beneath me had been using something that was coming up through the floorboards.
Everything in the room had become contaminated with the fragrance.

In the dazed days that followed, I got my mattress and box spring out of there (praying that the fragrance already absorbed into the box spring would dissipate quickly), and set up my bed in the living room, minus the bed frame that would have needed to be disassembled and re-assembled with power tools and spatial sensibilities, neither of which I possess.

[A word about that bed frame – When I moved, I found it on craigslist, in a search for some things to make my new home feel special. Thrilled to discover that it had never been exposed to fragrances, I bought it in a flurry of little girl excitement at the notion of sleeping in a “fancy” bed for the first time in my life. Not one who generally spends money on other than perceived-to-be-absolutely-necessary things, this was a big event. I even hired a fragrance-free handyman who picked it up, transported it in his truck, and set it up for me (with his more than adequate power tools and spatial sensibilities).
I told my Mom about the purchase, and she enthusiastically asked me each day how I was enjoying sleeping in my new beautiful bed. At the time, I was bothered by the amount of attention she gave it – marking the poignant reality that since I rarely have good news to share with her, she was grasping onto this furniture acquisition as a happy hub of conversation. Now I miss the questions. Now I realize she’s the only one who would even think to ask. Now I wish she could ask about anything actually occurring in my life, furniture-related or not.]

Back to the banished bedroom:
I had someone come over to get all of my clothes out of the closet and put them in garbage bags so I wouldn’t be continuously exposed to the fragrance to which they were exposed. With MCS, life tends to revolve around exposure management. (This makes me think of some kind of treatment for exhibitionist impulses – which I might require if my clothes have been permanently ruined and I end up walking around nude under my coat.)

In addition to keeping the bedroom door permanently closed, I had to run past it with every trip down the hall, due to the gap between the top of the door and the door frame – wide enough to fly a small aircraft through it. Also – (a word I’m reluctant to use now that it is central to my sister’s repetition repertoire, but here it actually makes sense) – the layout of the apartment is such that to travel from the living room (now bedroom/living room – in need of a new name, like “be-liv-room”, which almost sounds like “believe room”, which I quite like, and will consider using) to the dining room and kitchen, you have to traverse this hallway, which runs about the length of a city block.

The sudden lack of safe clothing, the bed in the living room, the apparent inability to ever again enter the bedroom, the likelihood that all of my bedroom furniture would have to be thrown out (freecycled actually, but that’s not the point), the garbage bags strewn about the apartment, the absence of alternative closet space to hang the clothes if they ever did become safe enough to wear again after laundering them, and the fever/headache/nausea/rash/raw throat/torrential crying spells became just a bit much.

From this vantage point – Yes – the foam on the floor was not so bad.

And here’s the real rub:

In a humble and desperate attempt to resolve the situation, I reached out to my downstairs neighbor. First, I knocked on her door and was greeted by the very sweet and polite man who shares her apartment. He had no idea what the source of the fragrance was, but he offered to ask her about it. I left my phone number, in the hope that she would call me to follow up.
As days went by, and my level of functioning declined, I still had not heard from her. So I feebly taped a note to her door, once again asking if she could kindly call me to check in about the fragrance question in the bedroom.

Well – the return call finally did take place – thankfully while a friend was helping me set up the combo bedroom/living room phenomena.
And this is how it went:

She: How are you?
Me: Actually, quite ill. How are you?
She: I’m doing great!
Me: Thank you so much for calling. I’m sorry to bother you, but I was hoping to ask about the sudden fragrance that’s coming into my bedroom, to…
She: (interrupting in what could safely be called an aggressive, pissed off, disgusted, and inching rapidly toward enraged voice) You already talked to my roommate, and he told me about it. Then you had to go and put a note on my door. This is really over the top. It was a scented candle that I lit for a few hours 3 days ago. I haven’t lit it since.
Me: I appreciate that you haven’t lit it again, and I am really sorry to be bringing this concern to you, but I have had to move my bed into the living room, and I’m still extremely sick.
If…
She: (interrupting in what has officially entered enraged territory) Jesus Christ! The candle was a gift! I have a right to burn candles in my own room! We have already been cow-towing to your laundry issues. Now this!
(Here, she is referring to the request I made that my neighbors use the fragrance -free detergent I provide for all of them – which incidentally has become a more than incidental expense, and to which she had eagerly agreed, stating that she already avoids artificial fragrances because her roommate has severe allergies. Hmm…)

As she continues to rant and rave, on speakerphone, my wise friend who has been hearing this tirade (and making various gestures which shall not be described here) suggests to me that I offer to buy her an unscented candle. I follow my wise friend’s advice, grateful to have friends who can think clearly on my behalf when my own brain is buzzing and bouncing out of balance.

She hears this offer, and her tone slightly shifts. She tells me the candle I buy for her should be soy wax. I enthusiastically accept her request, and tell her I’ll contact her when I have purchased it.

Here is where I would like to pause.

Here is where I would like to recall that we are all Divine Beings; the essence of God dwelling in each and every one of us.

Here is where I would like to reflect on the reality that people are acting from their own points of view, and that they are not likely, statistically, to be inherently insurmountably evil.

Here is where I would like to re-connect with Light – the light in myself, and the light in my neighbor, and the light in the larger unfolding journey of my life and the lives around me.

Here is where I would like to claim that I am not a helpless victim, that I am very much supported and guided to take the next right step, and that I am deeply connected to a Source of strength that will carry me through this particular series of circumstances.

Here is where I would like to give thanks for the incredible help that has shown up so generously – the co-worker who came over, when she herself wasn’t feeling well, to empty out my closets and bag up my clothes; the friend who came over, in the middle of a busy weekend with his own family, to help me set up the bed and the TV in the “believe room”, and who threw in the bonus help of hanging the wall sculpture and the clock while he was here; my sister, who listened to me on the phone every day, and gave me endless encouragement and empathy (also).

Here is where I would like to express profound gratitude for the reality that, in the big picture, I am indeed safe and well – I still do have a warm place to sleep, with a roof over my head, and walls to keep out the winter winds (even if the cable that runs down the outside of the building crashes violently and loudly into the wall all day and night if any of that winter wind is actually blowing – oh, but I’m focusing on gratitude right now), and enough clothing that I can still get dressed and go to work, and a job that provides a salary (even if that job saps my soul and depletes my body on a daily basis – oh, I did it again) so I can pay the rent on this apartment…

It takes quite a bit of mental effort to stay on the Gratitude track. My brain apparently has habituated to a stubborn insistence on negativity. I’m currently in the process of rewiring that system. Not quite done yet.

To add more interest to the mix, several other developments have occurred.

When I opened one of the garbage bags of clothing that I had been storing in the second “bedroom”, which I use as an office of sorts, I discovered that the clothes inside the bag reeked of mold on top of the fragrance that was originally the issue. Upon further investigation and literally sniffing around, I found the source of the mold to be the air coming from behind the utility closet door. I had never before gotten down on my knees and smelled that particular area – but I had been keenly aware that whenever I spend more than 20 minutes in my “office”, I develop the whole headache/raw throat/fever trinity. Now I know why.
So…I am wearing my face mask as I type these words.
And the question of the day is: Where is it worse to leave my still unwearable clothes – in the scent-saturated room or the moldy room? Where and how will the damage be most safely suspended, most readily remedied, most cleverly contained – without creating yet another crisis?

I am living a comedy of errors – One action leading to another, attempting solutions, but creating ever more unintended problems.

Another example this week – the giant roach issue. Having researched chemically friendly extermination ideas, I settled on using boric acid powder, which I squirted all along the perimeter of my kitchen floor, where the hideous creatures seem to hang out most (with the exception of the one in my kitchen sink that scared me half to death).
Not only did the acid not work (These bugs are so bold and big that they just march right through the powder, and keep on marching – totally unfazed. Boric acid as a strategy here is like trying to stop a tank with a large pebble.), it seems that the air purifier I keep in the kitchen (to lessen the effects of off-gassing construction materials) has been dispersing a fine boric acid powder mist through the air, which I regularly breathe, causing me to feel like I just swallowed poison…which, apparently, I did.

And here is the profound lesson of living with MCS:
Everything has ripples.
Everything is inter-connected.
Everything we do, say, think, and feel has an impact (most of which is unforeseen, unanticipated, and unconscious) on ourselves, each other, and the planet.
We all leave an imprint far beyond what we can ever imagine.
Your presence lingers in a room long after you have left it.
Your actions today will indeed affect someone else tomorrow and the day after that, and that person’s actions will indeed affect someone else…
We rub off on each other in infinitely mysterious and powerful ways.
This is both a burden and a blessing.

Speaking of the burden –

Seems the recurring ripple of dental drama, that was started so innocently three years ago (by a well-intended practitioner doing what she thought was right), chose this very week to get stirred up in new and interesting ways.
The piece that my amazingly wonderful new dentist had created – which had miraculously filled the gap in my mouth, and allowed me to chew without pureeing for the past 4 months – suddenly started causing intense pain.
No stranger to inflammation and “intense sensation” (as we like to call it in the world of yogic mindfulness – rather than calling it the throbbing pounding pain from Hell), I first thought it was just a passing flare-up.
It soon became evident that it was not passing, and that the flare had no intention of reversing its upward trajectory.

First the dentist tried removing the piece and putting it back in, which caused greater “intense sensation” as the days went on.
When I came in for the second visit in visible distress, he said “Maybe we should just pull all the teeth and give you dentures”.
Thankfully, between the two of us, at least one is generally capable of clear thinking, and this time it happened to be me. I nixed the teeth removal suggestion.
At the 3rd visit, he removed the piece and left it out, necessitating a return to the land of Puree – a land I honestly did not miss.

My wonderful dentist is at his wit’s end – wanting desperately to find a permanent solution to the ongoing saga of my mouth’s maladies.
He is filled with compassion – which is in itself like medicine for me.
He tells me that he has only once in his career had another patient with similar sensitivities and inflammatory responses. He notes that she, however, was always down and depressed, while I am “always up”. He marvels at my ability to maintain a positive perspective, and admits that if he were experiencing what I have been going through, he would probably have killed himself by now.
I’m blown away by his perception of a “joie-de-vivre” that I don’t even know I exude, and by the empathic recognition that thoughts of suicide would have been a persistent presence throughout these past years.
We still do not have a clear direction, but I am choosing to trust that we will forge ahead until we find some satisfying solution. And meanwhile, I am grateful for my Vitamix.

Yes, it has been quite the week – for my Mom too.
She has developed a new habit of telling people that she is having chest pain.
This is not the kind of thing people in healthcare establishments take lightly.
They don’t know, of course, that my Mom has been complaining of chest pain for the past 15 years, whenever she is anxious and constipated, which is unfortunately quite often. (I was going to say quite regular, but being regular would be the goal here.)

I think this is some kind of karmic thing. My Mom was obsessed, as were many Jewish mothers of her generation, with the movement of her children’s bowels. We were interrogated daily about whether or not we had bowel movements, and were promptly given Milk of Magnesia or suppositories if a day were missed.
Now her own bowels seem to have given up moving on their own, and she requires a significant amount of laxatives daily. The nursing home staff does not seem to understand this, nor do they understand that the translation of “I’m having chest pain” is “I need to shit, and some benzo’s wouldn’t hurt”.

And so, my mother was taken – not once, but twice – to the emergency room at the local hospital, to rule out a heart attack. (First she reported the chest pain to her aide at the home, which set off a sudden and swift stream of inappropriate interventions. As if she had not just been through all of that, a few days later she reported it yet again to the poor driver who was simply supposed to take her back from her radiation treatment, but instead was compelled to respond to what he perceived as a cardiac crisis.)
Thankfully, the hospital folks have gotten to know my mom over the years, and they rather readily released her both times.

When I called her yesterday, an aide answered the phone, telling me my mom was “in the toilet” and that I should call back later because she was “making a poo”.
I can only surmise that, at least for the moment, she will have an emergency room reprieve.

Today, I ran into one of the hundreds of landlords I had met when searching for a new apartment. When I updated her, she suggested – as have countless others – that I should “live in a bubble”.
While I completely understand the sentiment, it’s a bit impractical.
And so, I will continue to live in this world.
And I will have weeks like this.
And, like the man who ultimately releases the surplus livestock from his house, I will be ever so grateful for the weeks in between the weeks like this.

hindsight

It seems like common sense to attempt to improve a distressing situation.
Sometimes this can be relatively straightforward:

You put on an outfit, and realize immediately that you are too bloated to comfortably fit into it, so you take it off and put on something else (preferably from your selection of clothes with an elastic waist, grateful that this selection is expanding in sync with the expansion of your mid-section).

Or you agree to go out for tea with someone you found on one of the 25 online dating sites to which you subscribe. You realize, 5 minutes into the date, that it would be preferable to be at home doing your laundry or balancing your checkbook, rather than sitting through this tea-time tedium. So you offer some polite explanation, and you excuse yourself, wishing them well on their dating journey.
(It seems to be online dating etiquette to “wish someone well on their journey” when you have no interest in them. Having been the recipient of this phrase more times than I’d like to admit, I’m not proud to be incorporating it into my own communication. But I suppose it’s nicer than saying “I feel absolutely no inclination to have you in my life for even one more moment”.)

Realistically, there is not always such a clear solution to a problematic circumstance.
(Admittedly, body image and searching for love are not actually simple or straightforward arenas at all, but they were the first examples that popped into my mind. Seemed like a reasonable moment to try the whole “First thought -Best thought” thing. My apologies. Moving forward, I’ll try the “Ignore the first thought – Go for the next thought” thing.)

And the whole concept of “leaving well enough alone” is a bit of a conundrum. It’s based on the wisdom of hindsight.
You can’t really know if you were already “well enough” until you have taken some action to improve your wellness, and then you can compare.

Apparently, my foresight has not caught up with my hindsight.

Take, for example, my mouth.
One ordinary day, some years ago, I decided to have a new mouth guard made, to reduce the damage being done by the grinding I apparently do while I sleep. (In contrast to my serene, centered countenance during waking hours, the constant agitated motion of my jaw when slumbering suggests, without subtlety,  a dramatic disturbance beneath that peaceful persona. Hmm…)
So I consulted with an orthodontist, who thought it might be a good idea to consider invisible braces, which would not only work as a night guard, but would have the added bonus of straightening out my teeth. I hadn’t really thought of my teeth as being hideously crooked, but it sounded like a reasonable “2 birds with 1 stone” sort of suggestion.
(Please excuse the bird stoning reference., and note that I am opposed to animal cruelty. Apparently, in Italy they say “to catch two pigeons with one bean” – a much nicer phrase. Here in America, however, we reserve our beans for soups and stews, not for catching pigeons.)

He referred me to a dentist, recommending that I have a check-up to take care of any other possible issues before proceeding with making these appliances. (I’m always amused by the notion of having appliances in my mouth. It makes me dream of having a miniature hot water dispenser installed. Or maybe a very small Cuisinart).

And so began a tale too twisted to tell here in any detail, but I will say that I never did get around to having braces. What did, in fact, occur is that I followed the dentist’s suggestion to see a periodontist for a scaling, during which a filling was placed. When I immediately started having intermittent sharp pain, I was referred to an endodontist, who directed me to have a root canal.

This would have been the quintessential “leave well enough alone”/stop the cameras/hold the horses moment – but I missed it in my bull-headed, Taurus-natured determination to resolve whatever had gone wrong.

I had the root canal done, which led to unremitting indescribable pain, another root canal on the other side of my mouth which also did not heal correctly, and endless consultations with every conceivable genre of oral medicine and dentistry. The whole adventure culminated in an inability to chew solid food for 3 years, a surgical extraction, and countless ongoing attempts at filling in the gap in my mouth where functionally chewing teeth are supposed to be.
(Having become quite intimate with my Vitamix, I briefly considered creating my own culinary company, “Gourmet Puree: Cuisine for the Dentally Challenged”. If you are reading this, and you have entrepreneurial expertise, feel free to contact me. I really no longer have an interest in this business, but lately I am in great need of contact.)

Looking back, some intermittent pain would not have been so bad…

Or take the housing situation.
I lived in the same apartment for 16 years. During the last 8 of those years, I developed what is known as Multiple Chemical Sensitivity (MCS), a form of environmental illness that basically takes over your life, reducing it to a very small speck of space in which you can actually breathe.
This condition crept up on me, rather insidiously. At first, I noticed that I was having strong reactions to things like new carpeting, painting, cigarette smoke, and cleaning chemicals. Eventually, the whole world started to assault me with its fragrances and smells at every turn, as if someone turned up my olfactory system 1000 times higher than it should be, giving me a sort of nasal superpower. (If I had a choice of superpowers, I really would have preferred flying, or the ability to complete your tax forms in 3 minutes.) And then came the running list of other symptoms: fever, headache, nausea, raw throat, dizziness, congestion, rashes, cognitive impairment, crying spells, and an arbitrary assortment of physical, emotional, and mental reactions , including the instant impulse to bludgeon and kill people who have fragrance on their clothes, skin, or hair. (Be advised – should we ever meet at a book-signing.)

My apartment was like an MCS obstacle course. My bedroom was directly above the laundry vents, with the smell of detergents and dryer sheets managing to come through the windows that I did not dare open. Every time my upstairs neighbor took a shower, my nose and mouth were filled with their shampoo and soap fumes coming through my shower vent. I could not use the forced air heat or cooling for similar reasons – It would pump neighbors’ perfumes and sprays into my home. Numerous floods and leaks over the years created what I believed to be an unresolved mold problem. And my next door neighbors sprayed so much Febreeze and other assorted air fresheners that I had to cover myself up in a raincoat, hat, scarf and face mask (an outfit not recommended for appearing sane to others), hold my breath, and run whenever I needed to enter or exit the building.

It seemed like “well enough” was a bit lacking in the “well” department. And so began a ten-month search for a more environmentally friendly apartment, which finally led me to sign a lease on a place that appeared to be an improvement.
I moved in and soon discovered I was mistaken. A myriad of surprises (referred to by my friend as the Plagues) have arisen in the new apartment, including but not limited to: an infestation on all the windows of hundreds of gnats that manage to come inside even when the windows are closed, rotted window frames with billions of specks of paint, wood, and debris that fly directly into my eyes whenever I do try to open a window, locks that stick and doorknobs that loosen and fall off, both of which prevent me from entering or exiting the apartment, giant roaches, and overwhelming smells that come from behind the gunked up radiators, where the paint and wall areas are all peeled and growing God knows what kinds of moldy murky mess.
To avoid the radiator smell in my new bedroom, I am sleeping on the living room floor.
From this perspective, the old place looks pretty good. Who knew?

And now there is my Mother.
When she went to the ER that one fateful night, and was ready to be sent home while we awaited the test results regarding the fluid found in her lungs, my sister and I agreed to have her discharged to a rehab facility. At home, she had not been moving around, walking, getting fresh air, or interacting with other people for years. We wanted her to at least have physical therapy to strengthen her muscles, and at best to be interacting with, and taken care of appropriately, by people able to do so (in other words, not my Dad).

When she briefly came alive, we felt assured that we had done the right thing. For a couple of golden weeks, my mother was walking, talking, laughing, and sharing about how much she enjoyed her lunchtime conversations with the lovely women at her dining hall table.
She sounded like a giddy little girl – delighted to have made new friends, and proud of her daily accomplishments in physical therapy. This was a woman I had not heard from in decades. It was like she was given a new lease on life.

And then we were given the news that her life would be cut short in the very near future, due to an inoperable lung tumor. We were advised to give her a procedure that would drain the fluid from her lungs, another procedure to establish a chemical barrier to prevent fluid from returning, and  a series of radiation treatments aimed at shrinking the tumor.
My sister and I, sharing the role of her medical power of attorney, said “yes” to these things. Seemed like the right thing to do.
And my mother has been deteriorating week by week – First the endless cough, then the refusal of food, then the complete loss of muscle strength and motion, then the frozen staring into space, then the appearance of delirium and/or dementia.
Now there are no more reports of happy lunchtime chats. Now she is confused most of the time, and too tired and weak to even leave her room to go to the dining hall. Now she tends to choke on food if not extremely careful. Now she begs my Dad to stay and spend the night with her – and often calls out for him after he has gone, with a forlorn repetition of “Arn?, Arn?, Arn?” (which is exactly what she did at home, where he did not hear or respond, so this is not so different except that he’s actually not there).

Who can say what would have happened if she would simply have returned home from that first hospitalization? Who can say if we should have just let her live out the remainder of her life in a familiar (if not exactly functional) environment, with a committed (if not exactly conscious or capable) husband by her side?

There were doctors who were certain that we should just let her die; that we had no business sending her for treatment; that she only had a couple of months left to live and should be allowed to do so without forcing any lengthening of life; that putting her on hospice care was the only ethical thing to do. They scolded my sister and me, shaming us for imposing interventions on such a sick woman.                                                               After re-centering, in the face of these emotional attacks, I recognized that they were speaking from their own wounds, their own family histories and losses. I believe they did not mean to overstep their bounds, or to be dictatorial. They just got lost in their own blind spots, and reacted, as I too have been known to do on a regular basis. It always helps when I remember to see myself in the person in front of me, and to invoke compassion. (Then again, it can be quite satisfying to fantasize their violent demise.)

These doctors never actually spoke with my mother about her own wishes, her own fears, her own value of living this life as long as possible. We did. And we honored her need to keep on fighting.

And it’s just not neat or tidy or clear or simple or straightforward.
Hindsight is not relevant here. We get no do-overs. We only get this one chance as a family to journey together through the final chapter of her life.

I am grateful that we are doing it as lovingly, kindly, and persistently as possible.

And I am surrendering to the reality that we can’t improve every distressing situation.

And I’m really glad I’m wearing elastic pants.

crap and commitment

 

The shit is hitting the floor.
Yes, that’s right – the floor, not the fan.  I don’t really know why shit would hit a fan, but I’ll leave that question alone for now.
The salient point here is that shit has indeed been hitting the floor.

Seems my elderly, not exactly physically/mentally well mother has been having difficulty reaching the bathroom in time.
And when that happens, well – the shit needs somewhere to go – and the floor is the most likely landing place.

My parents got married over 50 years ago. They have basically been inextricably connected throughout each others’ entire adult lives. There were, of course, those repeated separations early on, when my Mom would leave him in New York and take my older sister and me with her to Florida. (I was just an infant, but my sister vividly recalls these episodic journeys) And then there was that interlude of divorce, after I left home, when my Mom finally moved permanently to Florida. That lasted about 15 years. But inevitably, my Mom and Dad were meant to be together. Over and over again, she would visit with him in New York. He would visit her in Florida.
And then she began to unravel, to crumble, to cease functioning. No stranger to anxiety, depression, and psychotropic medications to stay afloat throughout her life – Now there was no more floating. Just sinking. And my Dad was there. Participating in it. Co-creating it with the intention of being a source of support and strength. And she got sicker and sicker. She stopped teaching voice lessons and performing wedding ceremonies – work she had so dearly cherished. She stopped cleaning the apartment, preparing food for herself, going outside, speaking with anyone other than my Dad, and ultimately stopped walking or even standing up on her own.
And my Dad was there. And they officially got re-married. (They don’t count the lapse of the divorce years if you ask how long they’ve been married. It doesn’t seem relevant.) He loves her. Always has. Always will. In a way that defies comprehension. For over 50 years, my mother has had to scream at the top of her lungs to get his attention. And now, this same man who has perfected the art of ignoring other people, is literally cleaning up her shit off the floor.
I believe that is an act of love. I believe I would be profoundly blessed to have someone by my side who would clean up my shit, wherever it lands. (I’m considering adding this to my online dating description of what I’m seeking in a partner, but have managed to refrain. Somehow I think any responses would not exactly be what I had in mind.)
My Mom recently discovered, quite suddenly, that she has terminal lung cancer. The disease is progressing frighteningly quickly, and she is now permanently residing in a skilled nursing facility.
Before she became delirious, when she was still communicating in the realm of reality, she said to me: “Jude, it’s incredible. All these years of living with your father and we never talked. Now he’s coming here and we’re having conversations all the time.”
He is there with her, every day – regardless of the fact that he has stopped sleeping at night, and can barely keep his eyes open; that he has trouble getting himself up out of his chair; that he has been getting bouts of dizziness and falling quite often; that she is generally no longer able to participate in any kind of conversation. He chooses to be by her side.
There are increasingly frequent occurrences of shit hitting the floor these days. And although now there are aides to assist with the clean-up, he is still right there, loving her through it all.
Interestingly, the other day I opened my car door and was distressed by a terrible odor. Upon investigation, I discovered what looked (and smelled) like a lump of shit on the floor, beneath the steering wheel. I removed the mat and did my best to wash it off with non-chemical, fragrance-free cleaning products. I also eventually removed my sneaker and did my best to wash the bottom after realizing the shit was there too.
It would have been a really good time to use a product with fragrance – to cover up the lingering shit smell on both my shoe and the car mat. Unfortunately, my ongoing chemical/fragrance sensitivity ruled that option out.
It also would have been really great if I had discovered the shit on my shoe before walking throughout the entire apartment to vacuum. But there I was – spreading shit on the floor in a sincere and rare attempt to clean it.
Why do I bring this up? I don’t really know. Seems connected somehow. I think ultimately, shit will hit the floor, one way or another. And it will not always be possible to cover it up with some kind of sweet smelling substance, or to completely eliminate its lingering olfactory effects. And sometimes the efforts to keep things tidy and shit-free are not only ineffective – they actually contribute to the further spreading of crap where you don’t want crap to be.
And I think this is the moment to soften and to embrace the whole thing with an open heart – the accidental mess, the cleaning, the part that won’t be cleaned despite my best efforts, the knowledge that it will likely happen again, and the amazement that it hasn’t happened more frequently.
And this is the moment to reclaim the simple sweetness of gratitude and appreciation for my Mom and my Dad, shit and all.