It has been eleven years since I posted on this blog. I have only remembered it today because it turned up on a search I did for my username. And although I probably have few if any readers either from a decade ago or now, just coming across this blog, and it's last entry date was startling… and it also hurt.
And here's why.
It was in May 2010 that my life, my dreams, and my ambitions ended as I remember them. Beginning the last months of 2009, I began slowly developing a late onset congenital neurological condition caused by an arterial vascular malformation on the left side of my brain. It led to irreversible nerve damage to the trigeminal nerve on the left side of my face and head. I also developed a similar problem on the same side of the head as a result of nerve damage to the Occipital nerve. This thing all began slowly at first with my left eye and from there progressed to my brow, forehead, cheek, top of head, rear of head, neck and eventually my left shoulder. At it's worse, it had affected the left side of my body down to my big toe.
Go figure.
In any case, the pain was unbearable and by the end of May 2010, I was bedridden for approximately ten months prior to having two craniotomies — the first in February 2011 and the second in November 2011.
I won't go into the long sordid tale, or belabor over all the inconceivable changes in my life that inevitably resulted in my being reduced to poverty, on SSD, alone, and living a reclusive life (out of necessity). The solitude, actually, was welcome, and I have no real issue with it, as it is necessary. My home, my days, my life, it's all arranged to live in quiet and alone. This is to help reduce if not eliminate extraneous stimulation from triggering nasty pain spasms and at it's worse days in bed. I usually keep my eyes closed when in uncontrolled or new situations, particularly when interacting with unfamiliar people. It is automatic and seems to help keep the pain spasms in my eye and head to a minimum. And although the doctors assume I do this because of bright light, it is actually sound that is worse.
The official name for part of this condition is Atypical Trigeminal and Occipital Neuralgia. In short, it means constant nerve pain behind my left eye, face, and the left side of my head, etc. There are other congenital neurological issues not worth mentioning, as I've forgotten the details since then. It's also not worth going into all the other problems that have developed as a result… Really it isn't.
So, to get to the point of all this, I am in no way the same person I was before this happened, neither physically nor emotionally.
Yes, I lost quite a bit… But, in many ways I've gained quite a bit too. One very important thing is that I've come to understand myself better than I ever thought I had before. As a result, I have also learned a great deal about others. I have also come to accept that in those areas, no matter how much I think I know there is ever so much more I really do not.
Another rather important aspect to this is just how important it is for me to not allow my own circumstances, pain, hardships, or even my state of mind, to burden others. Yes, I admit, this becomes increasingly difficult as the years pass, but it is very important to me.
Over the years, I have seen too many people use their problems, as a way of garnering sympathy, attention, or as a way into or out of peoples lives or situations. This, I find highly manipulative and reeking with the stink of game playing. But most of all, it is selfish. And yes, I am very aware that we are all selfish in one way or another, but there are some who take this whole me, myself, and I, thing, well beyond its tolerable limit.
The truth is, I've never suffered those gladly who use their troubles; real or imagined, as an excuse to mistreat or take advantage of others. Therefore, I do my best to avoid falling into that same behavior. I have come to believe that two important things lacking in this world are kindness and compassion. So, far be it from me to give in to the already existing cruelty just because it seems so prevalent.
And so, I have come to recognize that Kindness is my God. And although these past ten years have been rather unbelievable, there is and always has been an unbreakable stream of kindness weaving its way through them. Sometimes that stream was just a wee brook, and other times a raging river. But whatever shape it took, I could always realize its presence, even if in those times the tributary I found myself in seemed dry as a bone.
There was the kind and patient nursing attendant who gently washed my hair while I was in the hospital. This was because I had not been able to do it myself during all those months of being in too much pain to even touch my own head.
There was the young caseworker for a local not for profit who came to support me and my partner for the SSD examination, thus witnessing the cruelest display of a medical professional she had ever witnessed.
There was the intake worker with DSS who honestly explained what I was up against yet, with sincere compassion, proceeded to help me navigate a social safety net system purposely set up to be adversarial.
There was and still is the generosity of all the volunteers with a local not for profit meals' organization struggling to make deliveries during a pandemic, yet never dropping the ball when they had few volunteers available.
There is my dedicated home care assistant and friend who, despite the personal danger, promised he would not abandon me when the city had to officially declare the building I lived in a public nuisance. All because the slumlord, a wealthy former pro-football player now lawyer, chose to ignore the horrible conditions that he himself was responsible for creating.
Kindness even revealed itself in the chatty, pleasant, conversations with the Medical transport taxi drivers who brought me back and forth to numerous doctor's visits.
Believe me when I say it that this list is far from total. Just trust that I encounter and recognize Kindness everywhere, if only I allow myself to.
As for the original reasons I began this blog, they were partially to chronicle my ambitions, my continued education, and hopefully any fruits that came of them. But you know how it is sometimes, you hit a bump in the road, you fall down go boom, and eventually you regain your bearings, and move on. However, I was never able to find a way to move on. I couldn't find the means to do so or the will to even if I had.
So, there will be no more music, no more art, and no more desire to even pursue them. It takes too much effort and pain. Oh, boy… I can hear them now, those obnoxious advocates of hustle culture declaring that I gave up, gave in, and allowed my condition to beat me. And perhaps there is some truth to that, but then there is also the bigger truth that I just don't see the point anymore. The world has passed me by. And let's not dismiss the truth that none of it interests me anymore — not in the least. All those things that drew me to the process no longer do so anymore. And without that interest, well…
Another truth is that I am quite content as I am now. I may not be happy, but I never considered happiness a permanent residence anyway. It was always just some quaint island off the coast of reality that you were lucky to visit from time to time, but never allowed to make your permanent residence. So, thinking is my occupation these days, and I have plenty of time for it. And even more importantly, I can do things like read again! It took a few years, experimentation, and eventually the doctors determining the right way to go about it, but every four months I go in for a procedure. The doctor freezes the only nerve that responds to any treatment, and it temporarily reduces the pain in one small area of my head. So whereas before when reading, computer time, and even videos were off limits, now I can do those things. Although, reading and moving images are still the most difficult for me to tolerate.
So, if you have stumbled across this blog and reading this last entry and may be wondering what this is about or why I am bothering to write this, well… The truth is that this last entry is more for me than anyone else. I just cannot stand unfinished or dangling loose ends. I am neurotic that way, and always have been. My life is very much like my home, I don't like messes, dust, smudges, or things out of place lol. Some might even accuse me of being a bit OCD, but I would tell them no, not at all. I just like things neat, contained, and in order. Beginnings have endings, and endings lead to new beginnings. But few beginnings have a chance if an ending has never sufficiently taken place. So, this is my official ending to a long abandoned chapter of my life that had been left swinging in the breeze, a book waiting all these years for me to finally and officially close. And up until now, I hadn't even known it needed closing, or would have known how to go about it unless this old blog of mine turned up unexpectably today.
What I needed was to simply declare it. Ring the bell, close the book, and snuff the candle.
So, what more is there to say but farewell and so long to the past, right? And for those who knew me in the past as I was and fairly well, I gently tug my ear to you, and leave this last corny but sweet refrain…
I'm so glad we had this time together,
Just to have a laugh, or sing a song.
Seems we just got started, and before you know it,
Comes the time we have to say, 'So long.'
Ahh, you just have to love Carol. :)
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