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.
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.