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.