A community of peers created by the Soaring Spirits Loss Foundation
- For weeks, months, or even years after the death of a loved one occurs, the shock of loss continues in a wave of disbelieving aftershocks...On one level you recognize that your loved one has died; on another level you're unable to grasp all the ramifications of that reality -
As part of my formal training for the field of work I had chosen, I was exposed to a new way of looking at numbers and how they are used, and how they were present in nature and in the everyday things which surround us. One area of study was that of the Binary number system; as you may know, in this system there are only two characters, 1's & 0's, the idea here is that they are used to represent the place value of things. In a most simple implementation of it, a light switch is a perfect example of this system; depending on the position of the switch, a light is either on or off, a 1 or a 0. Simple and apparently obvious. But, as with most things of this nature which can start off so seemingly simple and obvious, it can be expanded to apply to many things, and get complicated, fast...in an 8421 number system for example, 0001 would be equivalent to ''1'', as that place value is being represented by a 1 and as being 'on', the number 5 would be represented by 0101, 4+1=5, I found I kinda' like that stuff, I could grasp the on and off, yes and no, the black/white, or hot or cold situations of life pretty good, here, I knew where I stood; it was those gray areas that gave me trouble. I feel like, DJ's death has thrown me head first into the largest gray area which ever existed; and I have not enjoyed it much since I landed. The vagaries of moving through grief are many and varied for me, as it is for many others I am sure. I have found that much of it cannot be dealt with in an ''yes/no'', ''on/off'' or black and white fashion. I'm certain I'm not the only one finding this out, this just happens to be my version of how it is affecting me.
When we were given the diagnosis and the prognosis, DJ and I understood what was at hand; I could grasp that this was a no-go situation, and the outcome could probably not be altered. Our challenge was to determine how to live with it, and make the best of the time which was left. Understanding that one of the next orders of business was to inform the other close family members, we first talked between ourselves about what she wanted to happen, how she felt about things between her and myself. I asked her to tell me what she feared the most, outside of the prospect of dying itself; privately, she said there were only two things that were on her mind, that the children (38, 40, 42) be looked after, and that she not be in pain. I reassured her about the children, and guaranteed her that if I was alive, she would not be in pain...and she wasn't. As tragic as all this sounds, I could absorb it in the ''on/off'' fashion, I could understand what was happening ( I had not dared to think about the aftermath...not yet) ...DJ would be with us for a bit longer, then die. I could understand the fact of it, but I did not like it, still don't.
In digesting that, during the four years that followed, there were not many gray areas...most decisions we made, and the things we did, in a pretty straight forward manner, we understood; we dealt with life that way. Things that previously may have caused hand wringing or long ponderous debates, we handled in an expedient, tho not necessarily reckless manner, we tried to do things which gave the best results with peace of mind, primarily for DJ, but for me and the family too. But as time wore on and I could see the disease actually taking effect on DJ, the gray began to appear; our usual outings to malls, stores, family gatherings and the like took on a different atmosphere. Where as before we would walk through endless aisles of the various stores, now, after one or two circuits DJ would say enough, and the gray edged closer still...the gray invaded my thoughts; is this the day? Will DJ just drop right here in the store? Or at night; it became my habit to awake periodically, look over at her sleeping, trying to determine if her chest was still moving; was she gone? Gray things, things I really wasn't sure how to approach. We didn't speak much about it, but we both knew it was there.
This is how the gray area came to me, and at about three years into this...as I watched DJ begin to slow down even more, still more of the gray invaded. Fortunately she did not have major pain...and what pain there was, we were able to control with the meds, I am very grateful for that. It allowed her to remain lucid and active and to be a part of everything right up until the last couple of months. I did not like being in this gray area, the security and peace of mind of my ''yes/no'', ''on/off'' world was being shaken, and this threw me off balance. It allowed for thoughts which I had not counted on to come in and forced me to play out scenarios which altho had only one end, required many frightening scenes before they were concluded, living out those scenes were pure hell...no, I did not like this, and I could not stop them from playing. My Binary brain was having trouble taking it all in, the subtle and not so subtle changes in DJ; the disruption to what had been our routine for so long, the not knowing what would be happening next...I understand that many of us go through this, go through this struggle with the unknown regarding the various illnesses; and life in it's most basic form had to move on...bills needed to be paid, what business DJ decided to deal with had to be taken care of, meals had to be considered...in the middle of all the gray, we still had to just try and live each day.
Dealing with the effects of a terminal illness does not lend itself to the ''on/off'' system very well, there are just too many variables in both the physical and mental aspects of life...for me, there was no way to be definite about anything, DJ, the illness, myself and the world in general...the gray area demanded a different type of approach for which I was totally unprepared. DJ had made it a point to say she did not want to be treated like she was sick, she said she was past being sick, she was dying, so bring on whatever with that in mind. And, we were told, ''...keep those pitiful ass looks to yourselves, I don't need them...'' she said she didn't need or want them. I tried to oblige...tried to continue my ''on/off'' approach in dealing with her...the way I always had. For the most part it served us well in most things...we have always been straight with each other, tho we were known to lie to the world at times.. So except for the regular doctor's appointments, and her designated treatment days, and a couple of down days after a treatment maybe, life proceeded for us on a different, but somewhat even plane. Of course, when we were alone, sometimes she would breakdown and cry uncontrollably; cry for the kids, cry for me, cry for herself, her mother, here sisters...all of it. Sometimes she would say just how terrified she was of dying, of the unknown; all I could do at those times was to try and remind her that our faith had carried us through so much, and that right now, that was really all she needed to concentrate on, keeping the faith. How much good any of this did, I do not know, I do know that at the very end she said nothing about being scared, only that the rest felt good, and I do know for a fact her last moments were quiet.
The family held together pretty well, everyone knew what the prognosis was, so we went forward with that knowledge and tried to enjoy...there were still the usual tensions for which my brain worked well under...I still protested going to some family or friend's functions because I had a case against the host...but I went anyway, a simple decision, makes DJ happy, do it; I still had to endure her opinions on whatever was going on between the girls... (and listen without interruption mind you, these were proclamations, not a call for a response from me), about how sisters shouldn't be like that &ct...yes, I have heard it all before; there were still the talks about how we would sneak off for the weekend...stay downtown and act like tourists, but mostly I listened...and thought...and cried inside, and sometimes outside; and loved her for the way she was about this particular notion of how sisters should be towards one another. No gray area here. Sometimes I know the frustration of the entire situation would get to her, and she would lash out at me for no apparent reason, erupting with detailed lists of my shortcomings, and offering proven examples if i needed them...I'm in ''off'' mode here, especially once I realized that the majority of the things she was saying, tho true, had occurred years ago, and that those battles had been fought ...and won...or lost...who could remember now? Who really cared at this point?...she would go on for a while, and finally I would say she was right, and yes I do remember, and I would try to give her a hug to let her know everything was alright. Depending on her mood, it would end there, or she would try to resist, preferring to rant a little longer, at those times I would bring my mouth very close to her ear, if she tried to pull back, I would hug her even tighter, tho gently, refusing to let her go, and I would begin to quietly describe a litany of the most unladylike acts she might be subject to later if she persisted, things which would surely have her mother questioning the value of that good Catholic education she had been exposed to, often she would blush; you may have seen her picture on this site and wonder about this, believe me, she could blush, and I thoroughly reveled in making her do so...this was ''on'' mode. So, life continued...for a while.
At the start of the last 3 months of her life, there was a definite physical change; up till then DJ would be able to get around the various stores on her own, now she needed the electric carts they have...she began to sleep more during the day, tho her appetite remained hearty and her disposition remained on a high plane. The gray was pressing in even further tho, I knew what was happening, but I didn't want to believe it, I could not turn it off...one night at about the two month point, as we went to get in bed, she paused on her side and leaned on the bed, both hands resting on the mattress...she looked at me and said...''...i can't do this, it's too high ...'' ...our bed is somewhat higher than normal, and now it hurt for her to bring her leg up...we set up the lounger with proper bedding and that became her bed. A couple of weeks later as we were coming out of the house, she asked for my arm as we went down the steps, and leaned heavily on me...later that evening she agreed with our oldest daughter that she should probably get a cane. Amazingly DJ managed to remain cheery through these changes, at least on the outside. More gray stuff...about a month before the end, we were watching TV, DJ got her cane and went to the bathroom...I watched as she carefully negotiated the few steps...heard the door shut...about 10 minutes later she called my name, I rushed to the bathroom, she told me she couldn't get up...I helped her up and we walked together back to the lounger...the next day a wheelchair was ordered...now, i was surrounded by the gray...Dj only used that chair 2 or 3 times...most of her time now was spent reclining on the lounger and listening to music...or watching TV with Ms.McKoKo...or listening to the audio books she loved so much.
Now, I was awash in gray...DJ was slipping away right before my eyes and there was not a damn thing I could do to prevent it. The cascade of thoughts was never ending and there were no ''yes/no'' answers in sight; what will happen next, how will, whatever it is, happen...do I go to work today, is it time to call the out of town relatives, does it really make any sense to continue the other, non cancer related meds..there were no ''on/off'' or ''yes/no'' or black and white answers in my Binary brain for these questions, not right now; because I was starting to see the aftermath, and I was terrified. I finally determined that there were no answers regarding many of these things, or the aftermath; I would need to adopt an entirely new way of thinking if I were to survive, not just right then as DJ lay there dying, but the aftermath also. So I embraced the gray...I had to, I needed to be completely in it for anything to make sense, waking, eating, cleaning up, answering the phone, I stopped asking yes or no, I just ''did''...I'm sure there's a name for the state I was in...I haven't bothered to try and look for it, all I know is that I was there and in there, clear cut answers are nowhere to be found. As I attempt to retrain my brain to the new ways of thinking required in the aftermath, I have one last hard and sharp image of an ''on/off'' moment...it's the image of me the counting seconds between DJ's last breaths as she slipped away early one morning; at some point, after counting to about 23 or 25 seconds I stopped... ...DJ's breathing was ''off'', I understood that...I turned out the light by the lounger and laid my head in her lap and cried; there was no gray here, just the pure, natural, blues.
The following 2 or 3 months I was not only engulfed by the gray again, I became part of it I think. Nothing I thought about, did, remembered, or even wanted to do could be solved by my Binary brain, there were big changes in store for my mental framework and I had no idea of them. I lived in that fog I'm sure we all can relate to; a place where hard and fast answers to even the most basic of things becomes a challenge to the mind. A place where long held beliefs are brought to the light of scrutiny, and examined for even the tiniest flaw, and even matters of self worth are brought into question, skirting on the edges of guilt in many cases. For sure it is a strange place, this gray; strangely enough life continues, even through the gray, necessary things are done, questions are posed and answered, plans are made and executed...there are still some ''yes/no'', ''on/off'' things in this different way of living, but not many for me now...but, that may change...somehow, my brain has been able to start reconnecting the old, and identifying the new, fledgling endpoints and at least help me to see the possibility of how I might go forward and live...Yes, grief is indeed a strange and painful journey and No, once brought On the road we do not get Off; If we are fortunate, we develop a new design for living through the gray and although it isn't necessarily easy, or Black and White, it can hold promise and hope that the full color of life will return, and that's something even my Binary brain can understand and appreciate today.