My Day in Court

My Dad likes to ask the question: “If a person was always stupid, how would he know if he became senile?”  I quite enjoy this inquiry, and can’t help but apply it to my own life:  “If you are always overheated and sweaty because you live in a tropical climate, having moved to that climate precisely at the peak point of hormonal havoc, how can you tell if you’re having hot flashes?” And more to the point of my Dad’s question:  “If your father has never paid attention to anything anyone else was saying – how can you tell if he now, at almost 91 years of age, has truly lost his hearing, or memory, or concentration, or capacity to comprehend?”  These distinctions are becoming increasingly difficult to discern.

Several months ago, I got my Dad a Caption Call phone, which is connected to a screen that shows the words being spoken by the person on the other end of the line. I was so very excited to get this for him, given that we “speak” to each other every day, often multiple times a day – and he cannot/does not hear a thing I say.  Here is how that went:  For the first 2months, my Dad continually disconnected us in the midst of calls, by inadvertently pushing a button that he had been distinctly instructed not to push.  He would inevitably call me back, asking: “Why do you keep hanging up on me?” And on those occasions when he managed to avoid doing that, he never seemed to remember that the purpose of the Caption phone is to read the captions.  Each and every call went like this:

Me: (anything at all that I might want to share with my Dad)

Dad: What was that?

Me: Dad, are you reading the screen?

Dad: I don’t need to read the screen. I hear every word.

Me: Dad, read the screen.

Dad: What was that?

Me: Read the screen.

Dad: What do I need to read the screen for?  I hear myself perfectly fine.

And this is the quintessential Arnold Freed. He has spent a lifetime listening to his own thoughts, ideas, and words – while masterfully tuning out the thoughts, ideas, words, and expressions of others.  It has ultimately served him well.  In sharp contrast with his daughters, his mastery of ignorance to all that is going on around and within him enables him to feel consistently content.  He explains: “I’ve never had any problems.  I wouldn’t know how to – I guess I’m just a happy idiot”.

For me, this is bittersweet.  I’m glad that my Dad is surviving the loss of his wife, and choosing to keep on going.  I’m glad that he doesn’t seem to know that he has congestive heart failure which is being closely monitored by visiting nurses and doctors.  I’m glad that he retains, and regularly recapitulates, an abundance of happy memories from our early family life and from his own life as a novelty inventor, magician, teacher, and traveler.

The harder part is that he cannot hear/understand/recall anything about me. With each passing day, I feel increasingly like a total stranger in his presence. And the cumulative impact of our “non-versations” is that I am feeling increasingly estranged from myself, inspiring me to write these words as a way of bearing witness to my own experience.  So – I will now continue to tell the tale.

Several months ago, my sister and I received news that my Dad had driven into another vehicle on the road.  Thankfully, no one was hurt.  My Dad was very unclear on the details of what had happened, but eventually he revealed to us that he had blacked out behind the wheel, later “re-awakening” to discover that he had caused an accident.  The cops apparently saw that he was driving on a suspended license (which, of course, had been suspended due to his doctor’s concern that something like this might occur).  My Dad was criminally charged, and given a court date to appear for a hearing.

Let me explain something about my Dad – He has never considered orders, dictates, rules, regulations, or really any direction given by authority to be something that should be taken seriously. It is probably safe to say that taking things seriously is just not in his repertoire.  This would include things like paying taxes or bills – He hasn’t opened a piece of mail in over twenty years.  So it should come as no surprise that a little thing like a suspended license would not have entered his mind when getting behind the wheel.  It also should not be at all shocking that he, ever the performer looking for a laugh, would have no sense of “appropriate behavior” for appearing in front of a judge.  And while I experienced no shock – my day in court with him will live on in my mind (or what is left of it after that day) indefinitely.

I met up with my Dad and his aide at the Courthouse, knowing it would take both of us to manage him. (A word about his aide – She is a lovely woman, but there is a rather hefty communication barrier:  Comprehending and speaking English are not exactly part of her skill set. Trying to convey something to her is kind of like talking to my Dad, with the exception that she is at least making an effort to understand.  Given that it took about an hour to explain to her that she needed to bring my Dad to the Courthouse and that I would meet them there, it is nothing short of a miracle that they arrived at the right place, on time.) From the first moment, he started to insist that he didn’t need to be there, and that we should go home. When it became undeniably evident that we were not leaving, he turned his attention toward insisting that the judge see him immediately.  Unfortunately, the judge was not yet there, and showed no sign of imminent arrival.  Every 3-5 minutes, my Dad stood up and started to demand that he be seen.  I should add here that my Dad has no frame of reference for a reasonable “inside voice”. He doesn’t hear anything, so perhaps he is unaware that other people actually do (or perhaps this is simply related to being unaware of the other people in general), and so he basically shouts at all times.   This was not particularly helpful as the minutes and ultimately hours ticked by, and the demands became increasingly agitated, with my Dad standing up to scream things like: “Where is this fucking judge?  He’s probably out getting drunk.”

He then became fixated on the idea that he needed to talk directly with the court officials in order to insist on being seen by a still non-existing judge.  He shouted out his certainties repeatedly – “I’ll talk to them. They’ll get me to the judge.  You have to talk to these people.”  And repeatedly, I told him (using my inside voice) to sit down and wait because the judge was not there yet, explaining that talking to people would not bring the judge in any sooner.  Then my Dad needed to go to what he likes to call the “pish house”, so I escorted him with his walker to the nearest restroom, which happened to be at the opposite end of the building.  The entire time we walked through the Courthouse halls, my Dad continued his tirade, with the now added “stupidity of making someone walk a mile to get to the bathroom, and who designed this stupid place, and the judge is an idiot, and the people who designed this building are idiots, and this whole thing is for idiots, and we’re going home…”  He also periodically burst out into his favorite song, for the listening pleasure of all the courthouse visitors and staff:  “Oy, oy, oy.  A shiker is a goy” (loosely translated as: a drunk is a non-Jew, perhaps in loose reference to the presumably partying judge).

Shortly after returning from the bathroom trip, I left my Dad with his aide for a moment so I could take a little break.  And I do mean little – I was gone for less than five minutes.  When I returned, I found him at the front of the room, talking to an official-type person, presumably to insist on being seen.  As fate would have it, the moment my Dad sat back down, the judge finally entered the room and my Dad’s name was called!  He turned to me and said: “You see?  I told you it would work if I talked to them”.

And here’s where it gets even better. He and I approach the judge, me by my Dad’s side to serve as assistant for the proceedings to proceed effectively.  (Just a bit of back story:  during the hours of waiting, I had helped my Dad to sign a stack of papers, carefully coaching him to say that he had reviewed and understood everything he had signed.) The hearing begins with the judge asking if my Dad has read everything he signed, to which my Dad replies: “I’ve never read anything I’ve signed in my entire life.  Why would I start now?” The judge and I both prompt him to try answering again, as every word he utters is being recorded by the stenographer, to live on in perpetuity.  He thankfully re-answers, stating that he did read everything.  The judge then asks if my Dad has understood what he read and signed, to which my Dad replies:  “Absolutely not”.  Once again, the judge and I gently prompt him to try another answer, and he states: “Yes, I understood most of it”, which the judge seems willing to accept (showing signs that he could use the drink he had supposedly been consuming prior to this moment).  Then the judge explains the charges and asks my Dad for a plea.  My Dad asks if he can plea “guilty with an explanation”, but thankfully when the judge says we need a simple yes or no, – he answers “guilty”.  I breathe one small sigh of relief that perhaps we are closing in on the end of the courtroom craziness. And finally, when the judge explains that there is a fine to be paid, asking my Dad if he agrees to the payment – my Dad says: “Would you be willing to take my daughter instead?” At this point, I simply look at the judge, holding up my hands in a gesture of powerlessness, and he returns the gaze in some kind of sympathetic surrendered solidarity.  He patiently asks the question again, and this time my Dad submits and agrees to pay the fine (after asking if there is some kind of discount he can get). With great relief, as my Dad, his aide, and I exit the room and head to the location for making payments, I contemplate the lively conversation likely to be had later that evening around the stenographer’s dinner table.

My own life has recently brought me to sit in front of a judge, but thankfully not for criminal concerns.  Having appealed the denial I received from Social Security when applying for Disability benefits two years ago, I finally was given a date for a hearing to take place in Philadelphia. My lawyer felt strongly that it would be in my best interest to make the trip to Philly for the hearing, rather than transferring the case to Florida and going with an unknown attorney and judge.  In agreement, I bought a round-trip train ticket and made arrangements to stay at a friend’s house in my old Philly neighborhood.

If you’re wondering why I chose a 24-hour Amtrak ride each way instead of a short flight, my ears have some kind of mysterious inability to handle the pressure changes with plane descents.  So to protect the level of hearing still remaining from my last flight (which turned out to be, indeed, my last flight), I chose to travel by train, in a “roomette”.  And I’d like to share just a bit of my newfound wisdom for any of you who may one day choose to take this particular trip – although unless you have a ferocious fear of flying or your Eustachian tubes are demonstrably dysfunctional, this is not a particular trip I’d recommend.  The roomette is basically a cubicle with space to sit, a “toilet’   (beneath the pull-out sink) which is kept covered by a lid that serves as additional storage space (not highly practical for storing things as you will need to remove everything whenever you need to pee, which will be often because the air on the train is extraordinarily dry and so you’ll likely drink enough to hydrate a caravan of camels),  and an overhead bed that gets pulled out at night by the kind sleeper car attendant  when you are ready to sleep.  If you happen to be a person like me, with a variety of “special needs”, you may want to warn your attendant at the start of your journey or possibly offer him some sedating herbs/drugs/chemical interventions of any kind, to prevent his need for a month of recuperative sick leave. Another tip: There are curtains on the cubicle doors that can be closed for privacy when you don’t want to be seen by passengers walking through the corridor.  What may be less obvious is that there are also curtains on the outer windows that can – and notably should – be closed when you don’t want to be seen by passengers standing outside the train waiting to board, particularly if you are getting up from the toilet and haven’t yet pulled your pants back up.  Suffice it to say – that is a lesson quickly learned and not easily forgotten.

The really good news is that I survived the trip – environmental challenges and all – and spent a richly rewarding week back in Philadelphia, amidst beloved friends.  And the disability hearing went as well as it possibly could have – better than I could have even imagined.  The dear friend who drove me to the hearing stayed through the whole thing, providing much appreciated moral support – after the little glitch when she set the metal detector off, was found to be carrying a pocket army knife, and was promptly banished from the building by the less than jovial security guard.  When she returned, weaponless, her presence was immeasurably reassuring.

My attorney, whom I met for the first time that day, was professional, smart, competent, and clearly wanting a positive outcome for me.  She encouraged me to be completely authentic, letting me know that I did not need to worry about what to say or how to say it, as long as I spoke honestly (which was a great relief after so many well-intended people had suggested I would need to somehow make myself look/sound sicker than I appear to be, which I neither wanted nor knew how to do). Thankfully, no exaggeration was necessary.  The truth spoke for itself.

The judge was unexpectedly warm and kind, right from the start.  Clearly aware of the severity of my various conditions, he instantly put me at ease, conveying compassion and care.  He asked many questions about my daily life, reviewing symptoms, limitations, and results of attempted healing efforts.

One particular moment stands out.  Amidst the long list of questions, the judge asks me: “Do you ever have a day when you are comfortable?”  I pause.  (I’d been instructed to take my time and think carefully before giving answers, as everything is being written for the record, and it’s all so very important.) I never really thought about this question before.  It sounds a bit self-indulgent. Comfort? Why should I have comfort? Life brings what it brings, and you move through it a day at a time. I’m a Jew, for God’s sake – Discomfort is in my DNA.  It seems sacrilegious and almost anti-Semitic to suggest that one could sidestep suffering.   But I haven’t answered the question.  “Do you ever have a day when you are comfortable?”  Still pausing.  I reflect on the reality of my days, and I realize that pain and discomfort are constant companions.  I realize that I can’t think of a 24 hour period in which symptoms have not been present, in which there has been simple ease.  Feeling the truth of this for the very first time, I look up at the judge and quietly answer “no”. He looks back at me, softly repeating my answer: “no”, his eyes conveying unspoken empathy.   My own eyes fill with tears, my heart compassionately aching on my own behalf, my pain finally being seen and validated without having to defend or shout or justify or over-explain or endlessly repeat myself or crumble into a heap of sobs in order to be recognized.  And for a moment, the little girl in me indulges wistful wishes, fantasizing that this judge is my father.  And I relax and settle in for the remaining questions.

The rest of the hearing went well, and although no official decision was made on the spot, my attorney told me she was confident that I won the appeal. Tears continued to flow, relief and gratitude spilling out.  And that relief and gratitude are now even greater three months later, having finally received the official approval letter in the mail.

Fines have been paid, hearings have been had, testimonies have been heard, decisions have been made, and no further court appearances are on the family schedule at this time.  And at the end of the day, my Dad is still my Dad.  In good moments, he is able to express what is in his heart – telling me how much he wants nothing for me but wellness and happiness, how deeply he loves me, how much he believes in me, how proud he is to have me as his daughter.  And in good moments, I am able to express what is in my heart – telling him how much I love him, how blessed I am to have him in my life, how much I appreciate all he has given me, how much I want for him to be comfortable and healthy and happy.  Less than stellar moments will continue to arise for both of us, of that I’m certain.  And there will always be a judge or a somebody who comes along and momentarily meets a need that has been aching for a lifetime.  Ultimately, I didn’t get them. I got Arnold Freed.  And I wouldn’t have it any other way.

Longing, Loss, and Love

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.

Teaching New Tricks

I never had a pet.
Well, except for that one childhood day when my family was given a poodle, and I instantly fell in love with him and named him George, and I took him outside and we played gleefully in the sunlight, and my Mom had an allergic reaction by evening, and we gave him back that night. So I really have no experience with the whole question of what you can or can’t teach an old dog.

I do, however, have experience with tricks. My Dad was an accomplished magician. He went by the stage name of “the Amazing Arnoldo”. He could do all kinds of magic – cards, ropes, coins, cups and balls, making things appear and disappear. He started a Magic School and taught these skills to young wanna-be magicians. Sometimes he taught my sister and me, but mostly he enjoyed mystifying us and keeping us guessing about how he did what he did.
It’s a juicy juxtaposition – knowing there is a trick to the tricks, and still delighting in the magic of the magic.

Several seasons ago, marvelous magic was revived, and I was completely awed, amazed, and astounded. Following my Dad’s reading of the last piece I wrote, we had a profound interaction – markedly different than our typical “nonversations”. He said he understood, from the writing, that he does not listen. I acknowledged that it must be hard for him to talk with me when his interests and experiences are so different than mine. I spoke with an open heart about wishing he and I could find a way to connect with each other, stating that I knew it would take work from both of us to make that happen. And I told him how much it would mean to me if he knew about my life. I specified that the most important thing right now is working toward recovery. I told him there is a process I am supposed to be doing every day, and that it would be wonderfully helpful if he would check in and encourage me to keep doing it. I had told him that many times before, but this time was different. He listened. He heard me. He remembered.

A bit of background:
Almost two years ago, I participated in a neuro-rehabilitation program that is said to help people recover from MCS, along with a variety of other conditions including fibromyalgia, chronic pain, and depression. It is based on the concept of self-directed neuroplasticity, and the idea that faulty circuitry in the brain’s limbic system can be re-wired, ultimately eliminating symptoms. The process requires a complete commitment, and at least one hour daily of a specific practice (broken into 4 “rounds”). After completing the training, I initially felt incredibly inspired and hopeful. I returned home energized and enthusiastic, fully committed to my recovery. As life became increasingly challenging, I gradually lost my motivation and stopped doing what would likely have helped me negotiate those challenges. In a state of passivity and pessimism, I felt like it didn’t matter what I did or did not do. Through the lens of my loopy limbic system, the practice seemed pointless, and I didn’t push myself to continue. But a spark of hope remained, and that spark is what inspired me to ask my Dad for encouragement.

To comprehend the monumental shift that was about to take place, I believe it is necessary to convey the nature of our interactions (“nonversations”) prior to that point.
The typical phone calls for the past decade have gone something like this:
Dad: What’s good on TV tonight?
Me: Well, Dad, I really don’t know because I don’t watch TV.
Dad: Who do you think will win the game tomorrow?
Me: Well, Dad, I really don’t know because I don’t pay attention to sports.
Dad: Did I ever tell you about the time I…( any number of stories that have been told and re-told, always somehow as if he never heard himself tell them before).
Me: [after allowing him to talk for up to an hour, usually putting the phone down at some point while he’s talking and coming back to find that he hasn’t noticed my absence]
Gotta go now, Dad. I love you. Have a good night.
Dad: Good night, Jude. It’s always good talking to you. I have no-one else to talk to any more.

And just when it seemed that nothing could possibly shift – it did. We did. It began with that heartfelt request for connection. In a remarkable transformation, my Dad started actually talking with me, not at me. He acknowledged that he cannot possibly understand my illness, and that he really does not understand the limbic system rewiring process. He realized that he does, however, understand the discipline required to follow through on a commitment to practice something. He related it to the daily running he had done in his younger years – having pushed himself to go out every day, with no exceptions.

And the Amazing Arnoldo miraculously morphed into the coach and one-man cheering team I had been so deeply longing for. He started to ask me every day about how many practice rounds I had done. Initially, I was doing one per day. He lovingly encouraged me to increase it to two, and then to three. And somehow his encouragement was the one thing that broke through the barrier that had been blocking me. He stunningly sparked my motivation to pick up the practice again. It mattered deeply to him, and so it started to matter deeply to me. I wanted to be able to tell him every day that I followed through. And when he brilliantly recommended just thinking about doing the 4th one each day – with no pressure to actually do it yet – it worked! I started thinking about it, and then one day I actually did it! And my Dad was beside himself with joy and pride. He cheered and cheered, telling me how proud he was, and reminding me to continue.

Almost 49 years old, I began experiencing – for what seemed the first time – what it is like to rely on my father for needed strength and support. Almost 89 years old, he got to be the Dad I imagine he has always wanted to be, guiding and supporting me. We both blossomed as we grew closer in our connection. We actually began talking about things that mattered to us both. I was humbled and softened in a whole new way.

And just as I started getting the hang of leaning on my Dad, he developed some new medical complications. His legs swelled severely and suddenly, with accompanying physical distress. My sister called to tell me that she had sent him to the emergency room, due to concern about his heart. My own heart sank at the news – crying for the looming loss of what we had just begun to find. As I anxiously awaited an update, he called from the ER to check that I had done my practice rounds for the day.
With tears of gratitude, I joyfully told him that I had, and he told me he could now rest easy for the night. Amazing Arnoldo indeed.

Soon thereafter, the unraveling began. Medical emergency has a way of undoing the trajectory you have been on, and indeed we were both a bit undone. He thankfully got through the cardiac crisis incredibly well, and was able to eventually go back home. All questions and interests in my life vanished as quickly as they had appeared, and he no longer asked about my recovery process. I soon lost my motivation again, and stopped doing the practice. We both returned to our regular routinized ruts, and the nonversations once again became the norm.

It requires such diligence to develop and strengthen new neural pathways, to establish new behavioral norms, to go again and again beyond the familiar and to inhabit new possibilities.

I seem to have taken a break from teaching new tricks to myself, as well as to my Dad. Still, I know that change is possible at any point. I know that love is what inspires the necessary persistence. I know that we are never too old to learn. I know that in my own time, I will indeed return to the practices that promote peace and positivity.

I will never ever stop believing in Magic.

Whether I hear the words again or not, I will always know that my Dad is cheering for me with every forward step I take.

And if ever I cross paths with a hypoallergenic dog and we agree to co-habitate, I will name him George and will likely spend my days trying to teach him how to vacuum my apartment.

The Hard of Hearing

My favorite part of calling my parents every day is the initial few minutes.
It inevitably goes like this:

The phone rings.
Eventually, on a good day, my Mom answers.
Mom: Hello?
Me: Hi, Mom. How are you today?
Mom: I don’t hear a thing you’re saying.
Me: That’s because you need to turn up the volume on the phone.
Mom: I still can’t hear anything.
Me: Mom, push the button on the phone to turn the volume up.
(These last two lines repeat several times)
Mom: Wait just a minute. I think I need to turn the volume up.
(She takes a moment to find and push the correct button)
Me: How’s that?
Mom: Oh, much better.

With my Dad, the only difference is that he is usually the one to initiate the call to me. Since he is not aware that speaking on the phone generally involves some amount of listening, he doesn’t bother turning up the volume until instructed to do so. It seems irrelevant to him, since the talking part is what interests him about making the call.
My Dad has perfected the art of delivering monologues in the guise of dialogues, leading my sister and me to describe our interactions with him as “nonversations”.

I am no stranger to having difficulty hearing. In the past decade, I have gotten on airplanes twice, on journeys to get treatment and support for my ongoing eating disorder recovery. During both return flights, I experienced what is called “barotrauma”, where the pressure in the ear cannot equalize properly. The effects that I thought would be temporary turned out to be persistent. I lost 30 percent of my hearing in both ears, all of which is apparently yet to be found.
I do quite a bit of lip-reading. I rely on subtitles and captions for TV or movie watching.  I frequently ask people to repeat themselves and to speak louder.
And I focus intently when having verbal interactions with others, in a concerted effort to understand their words as much as possible.
In this way, I perceive myself as being vastly different than my father.

In a recent and rare attempt to connect with him and share about my life, I offer to send him these writings I’ve been doing. He expresses great interest in reading them, and guarantees me that he won’t be bothered by anything I’ve said. And so – I go ahead and send all the pieces I’ve written thus far.

This is a bold move (admittedly, largely driven by the persistent child in me who somehow still yearns to be seen, heard, and known by her Dad).
Excited by his excitement, I spend an evening copying and pasting each piece into individual email messages, and then helping him figure out how to read them.
Eagerly, I leave him to do the reading on his own, and anxiously await his response.

I receive a phone call following his reading of the first few pieces:

Dad: You know – your sister and I have always had a very special connection. She understands me like no-one else does. She and I have always enjoyed things together.
Me: I know that, and it’s beautiful. I’m wondering if you had any thoughts about the writing you’ve read so far.
Dad: Yes. Your writing is very good. It’s down to earth. You don’t use any big words.
Me: Hmm… Any other thoughts or reactions?
Dad: Here’s what I don’t understand. You’ve done so many wonderful things in your life. You wrote music, you danced, you created plays… People won’t know about all of your talent if they read your writing.
Me: Well, Dad, these pieces were not written to be an entire autobiography. I actually already have performances that tell about my whole life. These pieces are about what’s been going on currently. And in terms of what people will know about me – I’m sort of hoping that they’ll think I have some talent as a writer.
Dad: Oh, of course you have talent. You’re a wonderful writer. Nobody could do it better. You know, I had a business where I had to create items. I never went to school for it. I hired people to work for me, and that’s how the business happened. I created so many funny things. Every day I had new ideas. My items could be found in novelty shops around the country…

And so it begins.

A day later, having read some more, the next call comes. He starts by telling me again about his connection with my sister, and how they have always gotten along so well. (I initially react with immediate irritation. Thankfully, over the years I’ve cultivated my capacity for curiosity and compassion. It comes in handy at a time like this.
I pause to imagine how hard it must be to read about his child’s life, and to realize he’s known absolutely none of it, despite “talking” every day. I intuit his unspoken need to feel that he truly understands, and is understood by, at least one of his daughters.)
Then he reiterates the observation that I don’t use fancy language, appreciating that I “tell it like it is” and that I write the truth, with “no bullshit”. (In another moment of maturity, I decide to take that as a compliment, rather than being annoyed at his oversight of my lilting linguistics and witty wise words.)

Another day passes. Here is where the tide turns.
Having finished reading all of the pieces, he can’t handle what he has read.
He doesn’t seem to have any problem with the stuff I wrote about him. The problem is the stuff I wrote about myself.
If you’ve been following this journey from the beginning, you know that my past 2 years have had no shortage of challenging circumstances. Unfortunately, my Dad has not been following this journey – from the beginning or the middle or anywhere for that matter – and it apparently came as a shock to realize that I’ve been dealing with a few things.

The next sequence of phone calls have a disturbingly different tone.
First I hear from my sister that my Dad is a wreck, and that he is coming unglued.
She tells me that he finished reading everything and that he was up all night in a state of overwhelming distress; that he couldn’t handle knowing about how much I’ve been through. She tells me that he is too agitated to function.
Then I hear directly from him. He tells me that he has never felt so depressed, that he can’t stop thinking about my difficulties, that it has gotten into his “kishkas” and that he can’t shake it. He explains that he has always been able to solve problems in his life, and that if he couldn’t solve them, he just didn’t pay attention to them. He expresses his desperate desire to want to fix the MCS for me, his belief that he is supposed to be able to make things better, his disappointment in himself for not knowing what to do, his overwhelming feelings of helplessness. And he admits that it was easier for him to not know about my suffering, to not have to think about it.

My heart softens and breaks open wide. This is how my Dad loves. He wants his family to be well, more than he wants anything else in this world. He cares so deeply that he cannot rest if he thinks about any of us being in pain. And so he has absolutely no ability to sit in the presence of our suffering, with nothing more to offer than his own open heart and loving presence. When I tell my Dad that it is enough for him to simply offer his love, he doesn’t comprehend what I’m saying. He is forever locked in the fix-it-or-forget-it-exists paradigm. I cry for him.

And I cry for me, as I sit with the little girl longing for the one thing that would meet a lifelong hunger – to simply be seen and held in love.

A few days later, my Dad magically moves on and puts the whole thing in that virtual vortex of memories to be forgotten. He stops speaking about the writing or our prior conversations. He is back in his regular routine, his “kishkas” seemingly settled down for the moment. When I call him at my Mom’s room in the nursing home, where he still spends his days, he reports that she had been waiting for hours for someone to respond to her call bell so she could be taken to the bathroom. He tells me that nobody came, and that he had tried unsuccessfully to help her himself, but that she couldn’t make it. Now an aide had finally arrived, and was cleaning up the aftermath. He adds that her lunch was never brought and that his efforts to get her meal delivered were also futile.

I have stepped back from the phone receiver. Something in me shuts down. I can’t stand listening to these words. I am completely helpless to prevent or correct the negligence that she faces every day. And I notice that I don’t want to hear it. It is just too hard.

In that moment, I recognize that the differences between my father and me are perhaps not all that vast.

I know the terrible frustration of being unable to comprehend what the person on the other end of the phone is saying.
I know what it’s like to comprehend all too well what the person on the other end of the phone is saying, and to wish that I hadn’t heard it at all.
I know the longing to be seen as smart and creative and talented and competent.
I know the tenderness and vulnerability of a human being yearning for connection and trying to get it by telling autobiographical stories.

This man whom I have perceived to be my polar opposite is very much my mirror.
Once again, my heart softens.
It’s hard to hear. And it’s hard not to hear.
And somehow the love at the center is larger than all of the hardness.

And subtitles are really good 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.

miracles

My parents are still alive.
This is quite miraculous.
Over one year ago, we got the news about my mother’s lung cancer. Visiting her in the hospital, during my Florida trip at that time, the doctors told my sister and me that she likely had 2 months to live. Apparently, the doctors were incorrect. She got through the radiation, she got through the temporary delirium, she got through the aspiration pneumonia, she has gotten through the medical neglect that comes with daily life in a painfully understaffed nursing home, and she is currently doing her best to get through yet another bout with pneumonia.
She is quite a fighter. And thankfully, her short-term memory is so deficient that she does not remember how much she has suffered prior to the current moment. Two days ago, when feeling extremely ill and unable to breathe, she told my sister that she was not going to make it. The following day, she had no recollection of having spent 12 hours in the emergency room, and reported that she was “tired for some reason, but doing well”. Short-term memory loss clearly has its perks.
Memory is not my mother’s only area of cognitive confusion. Sometimes she is crystal clear and at other times not so much. Today when we spoke on the phone, she sounded weak and reported that she was “too winded” to talk. When I asked if her oxygen was on, she said she didn’t know. (She is supposed to be on oxygen at all times.) When I clarified, and asked her whether there was a tube on her face that was inserted into her nose, she said “No”. I told her to ring the call button and ask for staff’s help putting it back on. She said “That’s a very good idea” and ended the conversation, with no evidence of translating the very good idea into action.
Thankfully, my Dad was there with her. Although he – of course – hadn’t noticed the issue, when I gave him instructions he did ask a staff person to hook her up. This is noteworthy for many reasons, not the least of which is that he not only heard what I said, with only 3 repetitions of screaming the words, but he actually listened and followed through. Had he not gotten on the phone with me, my Mom would have simply gone without oxygen for God knows how long, until eventually some aide or nurse would presumably have noticed. (During a return trip to Florida several months ago, I met with the nursing home administrative staff – on an almost daily basis – to report various grievances, such as the frequency with which the oxygen tank that sits by my mother’s side is not in any actual connection to my mother. They validated my concern and distress, and guaranteed me it would not happen again. That’s kind of like being told “I guarantee you’re gonna love this” when you’re served a garlic avocado peanut butter pineapple smoothie.)

My father is also a bit of a medical miracle. He has gotten through 88 years of life with minimal intervention from the medical world, and a general practice of ignoring any physical or mental signs of trouble. This has served him well. More or less.
Some months ago, he suddenly developed bowel incontinence and severe relentless diarrhea. There was no clear explanation for its cause, and once again the shit was hitting the floor – This time it was his own, with nobody to help him clean it up. In typical Arnold Freed fashion, holding onto the humor that has been his lifelong sustaining survival strategy, he told us: “I’m shitting my brains out. Maybe that’s why I’m not so smart lately”.
After some time had passed and things were not improving, he became dehydrated and weak. One night when things looked particularly concerning, my sister brought him to the Emergency Room. When they kept him overnight, we were relieved, thinking he would get an accurate diagnosis and treatment for whatever was causing the gastrointestinal symptoms.
As things turned out, we did not get that diagnosis. What we did get was the report that he had experienced a “cardiac event” during that first night in the hospital, and that they found severe blockages in both right and left coronary arteries. He had to be transferred to another hospital, where they would do a cardiac catheterization and either place a stent or do surgery to open the blockages.
Once again – seemingly guided by Divine intervention, a relatively routine ER trip led to the discovery of a hidden, potentially fatal condition – this time for my Dad. Severely shaken by the news, and grateful to have discovered the problem in time to intervene, I was greatly relieved to know that the necessary steps were being taken. My sister, who lives in Florida for the sole purpose of being close to my parents, was nothing less than an Angel. If not for her, I don’t know if my Dad would have survived.

Shari is her name. I would like to nominate her for sainthood, but Jews don’t have saints. (Also, she apparently would not qualify, given that saint status requires a person to have demonstrated two posthumous miracles. I wonder if she could get some kind of advanced standing credit for all the family miracles she performs daily, prehumous though they may be.) She is severely ill herself, with Chronic Fatigue Syndrome (having already overcome colon cancer at age 31) and a variety of other disorders that greatly interfere with her ability to function. Most days she has great difficulty just getting through the basic activities of daily living. (These are known as ADL’s in the healthcare world, generally referring to things like showering, dressing, doing laundry, preparing and eating food, and cleaning. If it were up to me, the approved ADL list would include: engaging in conversation with someone other than yourself, reading and appropriately responding to your mail within one month of receiving it, and keeping the piles of paper in your apartment shuffled in such a way as to appear organized to the outside observer.)
Shari heroically rose above her own illness, and was there for my Dad every step of the way – when they told us they couldn’t place the stent because the blockages were too severe; when they told us they couldn’t do surgery because the risk was too great; when they told us they couldn’t address the cardiac issues until his GI issues had been resolved; when they told us they had no idea how to resolve the GI issues;when they finally got the GI issues stabilized (turned out to be colitis, which eventually responded to medication); and when they ultimately did successfully place a stent in one of the blocked arteries.
My father, like my Mom, is a lover of life. He refuses to be knocked down by circumstance. (His daily mantra is: “I’ve got no problems. Only solutions.”) As difficult as this whole thing was, with all the pain and suffering he experienced while it was happening, he fought his way through it. When he was discharged, we were delightedly able to have him temporarily transferred to my Mom’s facility for his own rehab. His room was down the hall from hers. He was able to sit with her once again for breakfast every morning. And I was able to arrange my Florida trip to be during this time, so we could all visit together in the same place. The trip also serendipitously coincided with Rosh Hashanah, and we celebrated the New Year with a day-long visit, all four of us together. As evening approached and we lit the candles and sang the blessing, my Dad said,with uncharacteristic tears filling his eyes, “This was one of the best days of my entire life”.
Sometimes, in a fleeting magical moment, the pieces land perfectly in place.

These are the moments that inspire my parents to keep holding on for another day.

These are the moments that inspire my sister and me to keep showing up in the midst of our own challenges and illnesses.

These are the moments that make the other moments bearable.

The Freed family has made it this far, beating the odds again and again.
This is, indeed, quite miraculous.

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.

monumental mess

In my role as Power of Attorney for both of my parents (a role I took on some years ago, with a poignant combination of love, loyalty, rage, resentment, gratitude, and grace), I find myself frequently having frustrating phone encounters with a large and diverse sample of humanity.

When I initially took on this monumental undertaking, I didn’t realize it would be another full-time job. I figured I’d just have their mail forwarded to me, get my name on their bank accounts, and all would be reasonably manageable.

I forgot that my parents are Arnold and Florence Freed.

I should have at least guessed that my Dad’s record-keeping and bill-paying functioning would be severely sub-standard (an under-stated understatement). I can clearly recall him laughingly responding to threats of being dispossessed due to negligent payments: “Let them come seize me! Nobody comes to seize me any more!” And my sister remembers the constant warnings from the electric company that our power would be turned off unless he paid his delinquent balance.
My mother was the responsible one – when she was cognitively clear. She held it all together. When her mental and physical capacities plummeted, so did any semblance of record-keeping, bill-paying, and money management for both of them.

And so I inherited a mess, and diligently took on the challenge of cleaning it up. (See prior chapter for more on this theme)
Seems my Dad had stopped opening his mail at least ten years earlier. There was the little issue of the IRS having emptied out my Mom’s entire bank account due to all the years of not paying taxes correctly, if at all. And that was just the beginning.
There were countless companies to which ongoing payments were being made, for services or products nobody knew about, wanted, or needed.
There was a plethora of unpaid medical, utility, and housing bills with years of late charges.
And this was just the tip of the proverbial iceberg.

Years later, the work continues. Some days, I show up to it more gracefully than others.

In a recent attempt to get my Dad some desperately needed services, I schedule a doctor’s visit so he could get the required medical paperwork completed. I am told at the last minute, by the receptionist who is simply following office policies, that he can not be seen if he does not have his Medicare card. Of course, my Dad has no idea where that particular card might be, if in fact it is anywhere to be found (which is highly unlikely). So I proceed to try and connect with someone who can help me get him a replacement card as quickly as possible. As these things inevitably go, I find myself on hold for 75 minutes, listening to a repeated cycle of music with interruptions every few minutes, advising me that the Social Security office is very busy at this time and that they appreciate my patience.
This insistent message makes me want to scream back at the recorded voice. My patience? Seriously? The only reason I’m staying on the phone is because if I hang up, I’ll have to start this obnoxious freaking process all over again. They could appreciate many things such as my time, my energy, my devotion to my Dad, my surprisingly stable blood pressure, my slowly subsiding sanity, but my patience – not so much.

Back to the point – After 75 minutes of waiting, I finally get through to a live human being. I explain the situation, and he offers to help. As soon as he realizes I am not the person whose card is lost, however, he informs me that he cannot help. Apparently, Social Security “does not recognize” legal Power of Attorney status, and so he is not allowed to talk with me about my Dad. Wondering if this lack of recognition is an early sign of dementia, which would not bode well for the future of Social Security, I proceed to explain the situation to the man on the phone.
I ask if it would be possible to get my Dad in on a 3-way conference call, so that my Dad can speak directly with him. He agrees, and so I make the first of 5 attempts to get my Dad on the phone, each time tremulously praying to not lose the connection with the still unnamed man for whom I waited 75 minutes. (My lack of sophistication and experience with technology is another subject to which I will likely return. For now, I’ll just say that finding the right button to push that would connect me with my Dad, and then connect me back with the man, was nothing short of a major miracle.)

The thing to realize here is that my Dad is virtually deaf. This is difficult to negotiate because he has been selectively deaf throughout our lives, and has only heard what he was interested in hearing. This generally did not include anything involving or causing mental, emotional, or financial distress; anything that would require him to turn his attention away from the television; anything about ourselves or our lives that did not directly contribute to his pride and pleasure. So, now that he truly cannot hear – even when he is trying to do so – it’s maddening when he seems to be ignoring us as he always has.

Of course, he never hears the phone ringing. Generally, the TV is blasting too loudly to hear anything else at all. And even if he could hear, he can never remember where he left the phone, and it could take hours or days before he finds it again. And he also usually forgets to replace it on the charger, so by the time he actually hears it and picks it up, the connection is likely to go dead after the first minute.

This is why it takes 5 attempts before he somehow hears, finds, and answers the ringing phone. The man with no name is willing to stay on the phone with me each time, allowing me to keep trying until we reach him. (Now his patience – That’s something to be appreciated) When we finally get through, all seems well and readily remedied. My Dad answers the questions correctly. (Here would have been a really good time to say “Perfect” in response to him knowing his place of birth, mailing address, and mother’s maiden name. But of course, he gets no such recognition.) Then we let my Dad go back to the TV, and the man continues talking with me.

This is where the journey twists. I give the man the address of the PO box we use for getting urgent mail to my Dad. Since all of the mail that comes to his home gets forwarded directly to me, I want to be sure that the card gets to him in a timely way. I explain this repeatedly to the man on the phone, who seems to be following. He takes the PO Box address and tells me the card will be sent. Hooray! That wasn’t so bad!
Then the man is silent for a while, and it seems he’s working on finalizing something. I wait for him to tell me we are done.
What he tells me, instead, is that he has just officially changed my Dad’s permanent mailing address with Social Security to the PO Box address. I immediately explain that he just made a mistake, and that I need all of his mail to continue being forwarded to me, which will not happen if it goes to the PO Box.

Suddenly, the generous helpful man morphs into some other person. Having been told he
did something incorrectly, the whole game changes.
He angrily accuses me of encouraging him to make this mistake.
Him: “Why didn’t you stop me?’”
Me: “I had no idea what you were doing.”
Him: “Didn’t you hear me typing?”
Me: “Well, yes, but I did not know what specifically you were typing.”
Him: “You knew I was working on something and that I was typing in the address you had given me.”
Me: “I think there has been some unintended mis-communication here. I’m so sorry about that, but I never intended for you to have all of his future mail sent to the wrong address.”
Him: “Then you should have stopped me.”

In an earlier era, I would have gotten completely thrown by this turn of tone, and would have either collapsed into involuntary tears or exploded in involuntary rage. Grateful for my newly developing capacity for staying centered in the presence of others’ distressing distress, I soften. I breathe. I remember that this is the same man who so kindly waited through 5 attempts at making a connection with my Dad. I remember that this is the same man who worked with me to solve a problem, rather than ending the call as soon as he realized I was not calling about myself. And I imagine this man’s frustration at trying to do a good thing, only to discover that he unintentionally created yet another problem for me.
And in this state of loving compassion toward him, I stay in the conversation, asking what can be done. He tells me he cannot correct the mistake today because the system will not allow him to do so. He promises that he will make a note to change the address in the system the following morning, which I realize is a generous act.
I thank him, and we say good night.

Yes – I could have had a more peaceful night without the whole encounter.
And yes – I got through it.
And yes – I opened my heart and remembered that in some large way, we’re all doing what we think we need to do.
And yes – My Dad will hopefully soon receive his Medicare card, so the doctor will allow him to come in, so he can get paperwork completed, so he can apply for benefits, so he can have some help at home, so someone can come in and clean up a bit, so he will be less likely to fall over all the crap on the floor.

And we’re back to that.

delirious dreams

Perhaps delirium is under-rated.

My mother is currently living in some alternate universe.
It is possible that this state has been brought about by heavy-duty narcotics being given to her each day. These drugs are working to quiet the cough that has been wreaking havoc on her body ever since the procedure that was supposed to permanently clear the fluid from her lungs.
She did not have a constant harrowing cough originally. She did not even know she was sick. She did, however, get diagnosed with a massive tumor in her lung, quite by accident. And we were told to do this procedure to make her breathing easier.
Now not only has her breathing capacity declined so severely that she requires oxygen almost constantly – she also requires drugs intense enough to sedate the cough, without quite sedating her to the point of no return. This, apparently, is a fine line.

In the very recent past, I was able to have conversations with my Mom on the phone, during which she would ask reasonably relevant questions and I would answer. She would usually recall what we had talked about, and even ask follow-up questions during our next conversation.
That person seems to be missing in action at the moment. Now, she is in some fascinating reality of her own creation, and our phone chats have taken quite a different turn.
Last night, she told me about the lovely festive dinner “they” had eaten, and about the hotel where “they” would be going later, to see the “gypsy dancers”. When I mentioned that dinner had not yet been served, she simply replied “That’s true”. When I reminded her that she is in Whitehall Rehab, she said “Yes, we’re all here together at Whitehall”. I did not ask further about the gypsy dancing, although that was something I would have actually liked to hear more about.
The day before, she reported that the weather there was terrible, and that it was a very “messy”, rainy day. I was informed by my sister that the sun was shining brightly all day long.
Seems sometimes she goes to a better place, and other times not so much.

Am I supposed to bring her back? Why not leave her with the festivities, rain or shine, and let her enjoy the show?

What, really, is “quality of life” anyway? Whose life? And what quality?
The life of an 84 year old woman who cannot do the basics of standing, walking, toileting, dressing for herself, who is getting radiation that further weakens her, and who no longer lives in her own home with her husband – That life is perhaps made better by a bit of delirium.
The life of a 47 year old woman longing to have talks with her mother while there is still the chance to do so – That life is perhaps made better by having a mother who is at least a bit conscious of reality.

And I will do my best to be loving:
to leave her in her delirious dreams when she sounds happy to be there;
to honor my own delirious dream of a mother able to truly connect with me;
and to continue grieving for all of the loss – past, present, and future.

And should I happen to come across some gypsies, I hope to be wearing my dancing shoes.