How to begin this chapter…
It is a piece about endings and transitions.
It is a piece about loss, longing, and love.
It is a piece about letting go and holding on.
It is a piece about home and heart.
But before diving into all that, I feel the need to back up a bit and review some details that have unfolded in recent months.
If you have been following along with me on the journey, you know that I have been facing some rather daunting challenges related to health, housing, finances and family, doing my best to salvage some semblance of sanity.
As a reminder, the apartment where I’ve lived for the past year and a half has provided a plethora of pestilence, among other less than comfortable circumstances. I thankfully survived the frigidly freezing winter. With the transition to autumn, new creatures apparently awoke from their slumber, thawed out, and literally came crawling out of the woodwork (or flying, to be more precise). It started out as the unpleasant discovery of maggots on the floor (which I found less disturbing when calling them “larvae”, even though it means the same thing. Turns out they die if you freeze them, so yes – I had containers of “larvae” in my freezer, which is not what you want to think about when you reach for a baggie of frozen grapes.) The next development was the infestation of what I now know to be “cluster flies”. If you are unfamiliar with cluster flies, consider yourself blessed. Suffice it to say that they are the size of miniature blimps, they arrive on the scene already half-dead, and they appear by the hundreds, aiming at windows, trying to get out to freedom. The good thing is that at some point they complete their cycle and just stop showing up. The not so good thing is that until that point, you spend your every waking hour trapping and scooping up flies in various states of aliveness. And then of course there was the return of the fleas. And the nights of ceaseless itching. And the attempt to ease the itching with charcoal paste that comes off and turns everything it touches a deep pasty black.
And in the midst of all this, my landlady – whom I’ll call Tina, and about whom I will say nothing at this point because that would be a whole other chapter – informed me that she would not renew my lease, and that I had to be out by the middle of August. (One tiny Tina tidbit: After 2 different pest control companies assessed that the flies were due to something dead in my walls and/or above me in the attic, she raged at me, insisting that the flies were coming in due to the smell of my cooked vegetables. While it may be true that I likely eat more vegetables in a day than any other human on the planet, only she could manage to blame the appearance of 200 flies on my proclivity for produce.)
Under normal circumstances, moving out would seem a good idea. But chemical sensitivity is not a normal circumstance, and finding safe housing is a needle in a haystack kind of thing. (I do have to pause and wonder why anyone would have actually lost their needle in a haystack. A stack of hay seems an unlikely sitting spot for acupuncture, garment repair, or IV drug use. But back to the point.)
And so began the third episode of searching for housing in the past 3 years. This time was just a bit further complicated by the detail that my long-term disability payments had been cut off many months ago. Those payments had been approved by a private insurance company when I first stopped working, to be paid by my prior employer for one year. When the year ended, the insurance company, which was then responsible to take over the payments, seems to have suddenly realized that I am not actually disabled. They denied ongoing payment.
I found a lawyer for people with no income (having just entered that category officially). We submitted an appeal, they requested further documentation, we submitted it, they sent the case to be reviewed by an “independent” physician, and we are awaiting the results. My lawyer explained that the physician is not in any actual way “independent”, as he will be paid by the insurance company for his determination on the case.
Such is the system – over 6 months since the last time I received a check, and here I sit, awaiting another response. My lawyer says that if the appeal is once again denied, there is nothing else she can do, and the only remaining option is to hire a different lawyer, who will likely charge lots of money, to file a lawsuit. Additionally, I applied and was similarly denied for Social Security disability. Having submitted a request for an appeal with them as well, I was told that a hearing would take place within the next 18 months. For a person with no income, this seems just a tad slow on the turnaround time. The really fascinating part is the reasoning these organizations provide in their denial letters. I am decidedly too well-educated to have a disability. They explain that my advanced degree, and my superb skill set, give me prime potential to do work in a variety of settings. Breathing, speaking, and thinking are apparently not all that important in the provision of potent therapy.
So this was the situation in which I found myself, as I went out hunting for a home. I soon learned that landlords and realtors are less than eager to rent to an unemployed, income-less person. With the addition of considerable chemical concerns, it is even more unlikely that a rental application will be offered. I encountered a range of responses when attempting to walk through countless apartments – ranging from the benign: “Wow, you really are sensitive”, to the common: “You will never find a place”, to the almost always advice: “You really need to live in your own house”, to the outright outrageous: “You are the craziest person I have ever met”.
Strength comes from somewhere, again and again. At almost the last minute, I thankfully found a place. Too small for most of my things, but environmentally manageable, and owned by a woman who treats me with kindness. With Herculean help from sources seen and unseen, I got most of my stuff into a storage unit and got myself safely out of Tina’s territory and into a new living space.
On moving day, I got a call from my sister.
My mom had been taken to the hospital, was in Intensive Care, and was not in good shape. The stage 4 lung cancer she has been surviving had taken a terrible turn. Multiple systems in her body had shut down. She had developed sepsis. One lung had completely collapsed. Her esophagus was blocked. It looked very bleak.
While unpacking boxes, I started envisioning a Florida trip, which historically has taken quite a bit of time and effort to manifest. In perfect cosmic coordination, my sister found someone to drive me down, and a rarely available spot opened up at the MCS residence where I stayed last year. Several days later, I found myself on the road to Florida, praying to get there on time to see my Mom still alive. I made it. I went straight to the hospital, she was alert when I arrived, and we sang together. What a blessing, particularly as the doctors told us she would not likely survive the next few days.
Here I am, still in Florida, over two weeks later.
And this is where the story really starts. And ends. And starts.
I came here to see my Mom alive, and to say goodbye.
I came here prepared to help, but I had not anticipated the specific ways I would serve – hiring the lawyer to have her name removed from her apartment deed, arranging hospice care when it became evident that aggressive medical measures were no longer a viable option, meeting with the man from the cremation company to sign the papers and make the payment and confirm the plan.
I did not come here prepared to wait and watch, day after day, as her body transitions – too frequently in torment – toward death, and her soul does whatever it needs to do.
I did not come here prepared to watch my Dad watching her day after day, by her bedside hour after hour, craving a moment of connection.
I did not come here prepared to watch my sister watching her day after day, performing continuous healings and blessings, ministering mercy hour after hour, with brief pauses to collapse into crying over this immense looming loss.
And yet – this is what I am doing here. I am watching all the watching. Witnessing the witnessing. Crying over the crying.
And I am acutely aware that I am not experiencing the same loss (which is what sadly and thankfully allows me to attend to the business details with adequate efficiency and detachment).
She was the center of their lives, the woman who brought them infinite warmth and delight over the years. I watch them watching her, and I am struck by the stark realization that I did not know the same woman; that for all kinds of reasons, she and I were largely unable to share loving experiences together, to enjoy a bond of softness, support, and sweetness.
In the first few days after I arrived, when she was still quite conscious, she smiled so sweetly at me in moments of alertness. And I so naturally smiled at her – finally easy to simply love each other.
This is the woman I am not ready to lose – the one who brightens at the sight of my face or the sound of my voice, the one whose mouth forms kisses even when she doesn’t have the strength to move. I imagine this is the mother that was always underneath the mother I had. Ready or not, this is the woman slowly slipping away.
I search for memories of comforting contact, of nurturing connection, and come up shockingly empty – with the exceptional exception of sharing music. The joy of singing has always been where we meet most easily, where our hearts intertwine.
And so I have been singing to her, at first thrilled to have her voice rising to meet mine, and more recently resigned to knowing that she is still able to hear me even when she can no longer make sounds of her own. I sing to her from the deepest place in my heart. I believe she can feel the truth of what resides there.
And amidst the darkness, Grace has appeared in wondrous ways.
-Normally unable to walk without pain, I have been jogging every day since I arrived. My feet and legs carry me with strength, and I delight in the sensation of sailing through space, the sun on my skin, the moon still softly lit (proudly perfecting the 13 minute mile).
-The couple who own and live at the residence where I’m staying have extended such kindness, with daily doses of love and compassion, creating a precious feeling of family and belonging.
-The therapist I saw when I was in Florida 21 years ago, who was monumental in helping me to shift from my position of rigidity and rage to a state of openness and acceptance, showed up again with selfless support. Guiding me in a spontaneous hypnotic session, he spoke the words: “It’s not your fault”. The statement went straight to my core. I understood that my mother wanted me to hear this message, that she does not blame me for the ways our souls struggled in this lifetime, that she knows we both needed to play out our journeys in exactly the ways we did, that I am not – and was not – a bad daughter. Such a contradiction to the earlier spoken words, this message is medicine, and I drink it in.
I will be driven back to Philly in one week.
My mother may or may not be alive.
Her body may or may not have been turned to ash.
My sister and father may or may not have had an opportunity to do a ritual ceremony in her remembrance.
And as I return to a home I have not yet inhabited, I will need to say all of my goodbyes in whatever form they take in the days to come.
How do you grieve the multi-layered losses?
How do you let go of the mother who has become pure love?
How do you comfort the child still craving a safe embrace?
How do you reconcile the openings and closings of your own heart in the presence of so much poignancy, pain, and tremendous tenderness?
I sit here now, having taken the day off from visiting with her, and wonder if she will still be there tomorrow.
I sit here now and write these words.
And tomorrow I will rise. I will move. I will feel the sun on my skin.
And I will undoubtedly keep on singing.