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writing for godot

Imagined To Death - Could You Hear Me As You Died?

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Written by Andor Carnes   
Wednesday, 12 August 2015 20:35


In response to: “Alzheimer's is a Thief -- Or Is It” by Jerry Nelson RSN Friday, 31 July 2015

Thank you for the perspective.

Opinion:

I understand what you wish to communicate about re-balancing the fear of the sometimes inevitable and embracing its possibilities. However, Alzheimer’s has still, and indeed, come to be synonymous with the deep, uncontrollable loss of our abilities to retain our long-formed bonds with life and the ones we love –a very intimidating progression for anyone who values their human relationships.

Quiet or violent, a forced trade of control and comfort for loss of autonomy is a terrific and permanent blow to the human spirit. True empathy tells us that the fear of this very personal blow is justified, simply because one’s life quest, finding one’s self or others, will cease to be important –a state that is always, in our cultures, associated with the loss of personal hope. We are yet to be able to quantify if and when personal and familial loss of hope transitions to hopelessness, then to total loss of hope and eventually to the loss of the fundamental desire and need for hope in, for instance, Alzheimer’s patients. Therefore, the mental transitions that a patient with chronic, progressive dementia-related diseases passes through are unpredictable, unknowable in full and form -a very scary unknown at best. That is why billions of dollars are spent on finding a cure and prevention rather than on capitulation or a redirection of end-of-life thinking –hope is easier to sell and is more fundable than the uphill battle for acceptance.

In truth, although on the surface appearing ideal and useful, rationalization about the “beginning” good in a person’s translational into such mental change and loss cannot supplant the visceral fear of losing the familiar and what we have together built to know. For instance, you as a spectator at an auto race, might see a race car careen off the track, through the fence and becoming airborne, heading straight for your seats. Sure, a friend, who might have better seats than you, across from your seats, might see the unfolding accident and have a moment of serene clarity to say, “Well, this will be an interesting beginning, and death will save you from knowing what a horrible accident you participated in was.” Yet, as you see the underside of the car descending upon you, loss –and not beginning, would be most likely on your mind because you are human and have much to lose. If your friend was sitting next to you, they as well might not have had anything but loss on their mind just before the impact. The point being that rationalizing the good result is usually the discretionary option for those who are in fact not going through the traumatic human transition. A chronic brain diminishing disease can be like that fateful trip to the racetrack; everything is fine and fast until it isn’t, with little or no time to see preparation or perspective as options for the victim or loved ones, once the diagnosis is in.

Trading personal relationships for the next step in anyone’s reality is at best a personal choice -based on one’s beliefs and at worst a forced march along a desperately un-summoned path, with everything changing, being traded, for the unknown.

When one is potentially facing losing all they know, in reality or cognitively, the very faculties that made those things important and formative at all fuel the fear of their loss. That fear comes from the very basis of imagination and from being human. In the normal human being, diminishing the fear can also ironically diminish the personal bonds.

Even, as many do, stating the obvious that we should make the best of the “cards we are dealt” perhaps misses the living point that it is alright to grieve for personal bonds lost, or at best inaccessible, precisely because we do not deny they were important and fundamental to our being.

Yes, we can “imagine” good coming from loss and transition, and probably should always consider such. Nevertheless, to compensate for, or supplant, grief and fear with rationalizing away the importance of feeling deep loss, fundamental to our being, is possibly just as damaging as becoming debilitated by the fear of the inevitable affects of an incurable, memory and function-damaging disease.

Is it conscionable to spend billions on trying to live longer and more fully, in the face of so much suffering amongst those who are supposed to be in the prime of their lives? Probably not, if we, as you imply, are seriously diminishing the quality of our prime time on earth by habitually worrying about, and spending toward, any chronic disease and thus slowly diluting our or our loved ones’ present essence and happiness.

Believing that the “end is only the beginning” is a marvelous exercise: making for interesting theatre, literature and personal & religious guidance. However, such notions cannot be mutually exclusive with feelings of loss. Extraction of what we hold dear, in person, memory, imagination or notion, cannot be relegated away or trivialized. Personal losses of loved ones, physically or mentally, are the validators of who we are and of lives lived with connections –the double-edged sword of that “validation” being the pain of the cruel and horrific reality of living with loss. Trying to mentally avoid that loss could easily be as misguided, and bad for our ultimate wellbeing, as trying to cheat, deny or slow aging in any manner.

Because of advances in care and medicine, we pass away in these modern times more often than not from chronic diseases, most of which do not involve accelerated mental diminishment. Modern medicine extends the life of the fortunate and is still not available to most of the populations in the world. Most humans in the world “cash out” in a very rough manner indeed. Many cultures soften this tough blow and suffering, for the family and the dying individual, with deep traditions of personally caring for their elderly right up through the end. Many religions and spiritual beliefs anticipate great ultimate good awaiting the deceased. For all these reasons and more, there is an endless range of possibilities for the passing of a life and the emotions of its acceptance.

Nevertheless, in the human experience, on a universal average, there are generally three categories of diminishment and demise: One -physical breakdown, Two -mental breakdown, and Three –both. All three are tragic for those loved ones left behind. However, when mental faculty is eroded, it can be perceived that closure in death becomes impossible for those left behind because they were never allowed to formally rest the personal bonds they had with the deceased.

Rationalizing in the end that the deceased is better off at the end of their suffering or that being mentally lost to us could be seen as a good thing, are curious exercises in perhaps making the living feel better for the transition. There is no question that for the dying, and their survivors, imagining something better and kinder in death is a comfort. Yet, if the dying cannot imagine a consequence of their death, the question always arises, “ Just whom is the belief in a benefit to death helping?”

Anthropomorphizing for instance Alzheimer’s by saying it “is a thief” or “robs” anything is indeed a curious belief. However, saying that for instance Alzheimer’s might actually be a blessing for those it diminishes is equally as curious. The fact remains that either path of perception or reality requires a lack of choice and control on the part of the patient and of the family, and to act as though imagining that a greater good comes through or out of the transition is perhaps the most un-provable point in our existence, regardless of what side you might fall upon.

It is surmised that the last sense to terminate at death is hearing –for some moments after pronounced death. Many cultures embrace this notion and continue talking to the deceased long after they are technically gone. In fact, long prior to death, in comas, mental diminishment and trauma, there is no way of knowing exactly what the victim perceives or what cognitive path they produce in their brains. Many continue to stroke, comfort and hold their loved ones long after their perceived life force is gone. One knows when the life rubicon is but never where the sensory terminus is. Therefore, to say from our perspective, and perhaps hope, that, for example, a state of any level of dementia is a blessing or a way to ease a life toward an ending, is presumption toward a comforting end for the observer and maybe lesser so for the patient. The unknown is still the unknown, and maybe before we further rationalize away the lack of cognitive and sensory connections in our diminished loved ones, we should consider further exploring the endless possibilities to feed their altered states’ life experiences, as delivered from we loved ones.

Yes, in the end, the treatment and imagination of what is possible, when we become less of our younger selves, is a personal thing, between our loved ones and us. This is precisely why I believe that rather than using our cognitive powers and imaginations to relegate our diminished loved ones to our limited beliefs and understandings of what they face and experience, we should consider so much more for their journey, prior to death and that their diminishment is in fact heralding a difference, not a beginning, and not just a slow, inevitable way to death itself.


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