Remission, Just a Fools Game, part 3

Part 1
Part 2

After spending a whole day bemoaning the return of unwanted interbody hostilities, where I rejected even the most basic notion of getting out of bed, I used Friday to find some sort of escape for the weekend. I wound up at a monastery, where I shed my ties to the modern world and grasped held of the positive energy there to help me rise above the crushing wave of despondency.

It was hard, but I did not drown.

Through lots of meditation and inner inquisitiveness I reacquainted myself with the concept that allowed me to leap into life saving mode before: extra time. I looked around me and realized had I given up at the beginning of 2010 — which had a serious appeal at the time, like how one often wants to touch a flame — had I not opted for the nuclear option, I would in no way have experienced most of the ups and downs of the past year, if not two years.

I kept hearing my at the time doctor’s voice telling me “if you do not do this I don’t think we will have a doctor/patient relationship a year from now.” He was not trying to fire me as a patient. He was telling me I would soon die without agreeing to change my treatment. A few weeks later I agreed and we scheduled C-Day. And because it worked, because I did not give up, did not quit, I am still here.

So I view anytime after February 2010 as extra time, life I would not have had access to without making a change. And this last weekend, I actually made myself laugh out loud – so hard that I both startled and embarrassed myself – when i realized that I allowed this moment, all this dread, this despair at my current state of health, to occur. Not giving up, jumping into the unknown, was necessary to get me to this state that echos where I was two and a half years ago. I find this incredibly funny.

After I stopped laughing, and it took a while, I really started to consider exactly what it means to have had this extra time. To have chosen to live over the alternative. I have been allowed to travel, to much of the world that only existed in pictures/books/movies/etc. I have meet amazing people that I never would have had the chance to enjoy. I was able to fall madly in love.

It also allowed me to expunge the the toxic, corrosive self that even I spent far too much time numbing my mind to get away from. I got to understand there is joy in just being alive, something that escaped me entirely in my 33 years prior. And it allowed me to invest my time in others, help where I was able and basically become someone that I am proud of. Before, I was never proud of myself. I loathed myself, often not so silently. That has dissipated.

I have become a better person in the two and half years since. In the time I both coined and experienced extra time. So the question now is how do I keep this trend going. I used this to buoy me, anchor me, assure I was not swept under the typhoon of despair that tugged me down this weekend. I looked at last time I was faced with impending doom and saw I was able to stay afloat, so I looked inward for my personal flotation device, and I began to tread water. But how can I keep this as an anchor as I continue to progress away from it?

There is a myth about me. That I am strong. That I can weather a storm sans raincoat and have none of my strength erode, even if that storm spews from a volcano. I am sure I have done much to cultivate this myth. For the longest time I even believed it. I thought that I did my best work under extreme pressure. That not folding under pressure was sort of my super power. But I have always folded. Given up things when they became hard, demanded I struggle to achieve them, rather than just get them. But all the same I have heard so many times “you are the strongest person I know” or a facsimile thereof.

I bring this up now because even though I found a fulcrum, a maypole, to attach my hopes on — that I will get better, that I can beat this again, etc… — I feel hopeless. Like my flotation device is a tauntly filled balloon now, but ready to become that sad flimsy balloon that you find behind the couch three months after the party is over. I feel deep within me that this is where I plunge over the waterfall. Even with all the positive thoughts I have cultivated in the past year. Even with an anchor as strong as extra time, I feel like I have used up my “do overs” and am back to having to deal with reality, that my extra time is finite.

I have always know this. But like any sensible person I choose to bask in the possible rather than the probable. I saw the developments of the alternative therapies I found in India as being the start of something new. Something better. I thought I had found my yellow sun, my green ring, my speed force, the cause of my ever desired superpower. But, and this is a big but, I found time to be me, to exist in a bubble where things looked promising. And well, I sort of have the feeling that this life is not supposed to be about promising. That there is a lesson I need to be learning, but I am ever so obtuse and incapable of seeing what it is.

So while I will continue to use the notion of extra time to enjoy every moment I still reside on this giant orb, I also must say that I scared shitless about what comes next. In two days of this round of Tibetan medicine, I have felt no shift, no tremendous momentum that I felt the last two times I used them. I am not counting it out, I am just expressing my disappointment.

Once again, my future seems ambivalent. And while I can certainly see where some might see that as inspiring and even great, I have spent too much time caught in this well to see it as anything than walls closing in on me. I do not currently have the energy to even contemplate what this means. For the past two and half months I have spent an inordinate about of time just lying in bed. Even when I was doing my TEFL class last month, I spent far more time lying down than I did in the months preceding it. My body has been telling me it is suffering since I visited Ankor Wat. I just was tuned to another channel. I forgot to listen.

But at the same time the only light I can see from this well is up. And I must try and climb. Or else the great strides I have made over the last few years will all be for naught. Only, I have no ladder, no rope, and I have never been known for climbing. I need help.

The myth of my strength is that I could do it all on my own. when asked how I could get through something? How I could deal? I would tell them that I had little choice. That not dealing was failing, or something quite similar. I would say it with a pumped up chest, and if I had tail feathers they would be aflutter and spread out for all to see. But I never believed it. It was simply a pose. An act.

I always had help, even when I would disguise it from others.

But now…. Now I need that help. If you have ever met me, you know if I am asking for help, well I sure as hell need it, as I never do it. I am finally at the point where I can no longer trudge against this alone. But that is what I am, even with the people I have met here.

So while I concentrate on the extra time I have given myself and the person I want to stay (not the person I am afraid that I might become). I ask all of you to send as many good vibes my way. A rope, a ladder, or even a golden lasso would be ever so appreciated too. I know where ever I am I am not alone, just sometimes — the dark times — I need to be reminded of this.

About Randy

I'm just a guy trying to out run his dying kidneys and live life as vibrantly as possible. Until I can't. I grew up in Tejas. Went to school in Vermont. And currently live in Brooklyn. But not for long....
This entry was posted in disappointment, lupus and tagged , , , . Bookmark the permalink.

3 Responses to Remission, Just a Fools Game, part 3

  1. Erica says:

    Complete honesty and vulnerability always takes ten times the real strength that putting up a strong facade does. Anyone that can pull it off gets instant superhero status in my eyes.

    Sending ten thousand golden lassos through the cosmos and over the seas to you.

    You are never truly alone.

  2. michael whitcher says:

    you, me and all of us, each of us, is known. we have always been—known. our innermost thoughts and feelings—even before we ourselves know them. no one of us is truly alone, even though there may not be humans who are contacting us. mike

    • Randy says:

      yes, i agree with this 100%
      and if we are not open to the contact, we shrink into non-existence far quicker than if we listen intently.

      hopefully these darkest days are over. crossing fingers.

Leave a Reply

Your email address will not be published. Required fields are marked *