Remission, Just a Fools Game, part 1

There is a song, that I am sure most of you have heard, by Bonnie Tyler called It’s a Heartache. I feel these lyrics infinitely capture my last week:

“It’s a heartache/Nothing but a heartache/Hits you when it’s too late/Hits you when you’re down
It’s a fool’s game/Nothing but a fools game/Standing in the cold rain/Feeling like a clown”

And not because I am still nursing a shattered heart, but because my Lupus is back.

And as much as I understand this song is about the soul crushing loss of a lover, I keep coming back to this line: “It ain’t right with love to share/When you find he doesn’t care for you/It ain’t wise to need someone/As much as I depended on you,” and thinking it maybe the easiest way to discuss how I currently feel about my body.
My body the traitor.
My body that aspires to eat me from within.
My body, who after years of self abuse and my flagrant disregard for, I thought we had come to a peace, where our desires could coexist.

Alas, I was wrong.

One of the biggest lessons I learned after my trans-formative adventures in chemotherapy was that the great Marshall Mcluhan was absolutely right: “the medium is the message”. Or that it is impossible not to mimic the self destructiveness that your body exhibits. See, for the first 34 years of my life i learned from my home life and my body that self destruction/sabotage/wtfever were normal, if not required actions. When your own body is attacking you, eating vital organs, feasting on your life, it is impossible to ignore – even when you are unaware this is going on.

This is your body, of course there is a connection. Just think how floored you can be when you are tired, have a headache, or the flu. It affects everything you do. It influences your actions, all of them. When something is amiss inside, it manifests itself outwardly. So as my body devoured my kidneys before, my behavior became unacceptable. I learned from it that I was not worth being healthy. And from there the snowball mounted, pushing me further into belief that I did not deserve the important things in life: happiness, joy, love, etc. And as someone that seriously believed this, let me tell you, once you start down this line of thinking, you begin to actively blow up any path that even looks like it might lead to anything other than misery. So much in fact that I wonder if the self destructive nature is that elusive machine of perpetual motion that seems unobtainable.

I bring this all up now because the past two and a half years has been the story of me exiting this pupa of misery and becoming a person that actively cultivated a desire for happiness, joy, & love. And often times even found them. Yes it has been trying at times, but where I in the past would destroy the chances I had at any of those things, now I consult maps on how to get there quicker. Hell, I catch myself smiling all the time now. Not just when I look in reflective surfaces, but I can feel it on my face. And when I do I do not rush to bury it in a frown or a flat stoic expression as I did in the past. I enjoy it. I enjoy this tiny reminder that I so fundamentally shifted myself that I can now enjoy things rather than slicing and dicing them open to find any and all imperfections to complain about.

The news that my lupus has returned — that remission was just a matinee feature — has filled me with dread. But not exactly from the health concerns. I mean really, I have gotten to the point where I am on point with what is happening with my kidneys. Sure I was able to prevent them from dying as quickly as was predicted, but just in the nature of me being alive they are dying. And unlike most of you, mine will not outlast me. The nature of all kidneys are to die. They do not regenerate like the liver. This development most likely will bring about that death faster than I would prefer, but… I have made my peace with this. It is what it is.

No the dread is about how scared I am that the self destructive nature of Lupus will build, become insurmountable, and take me with it — erasing the person I have worked so hard to become. That this dread feels so omnipresent only goes to confirm this. And would I even be able to live with myself if I slip back into the kind of person I was before. That person that seems to loom on the horizon like a cresting storm…

There is that heartache again…

Here is my favorite version of It’s a Heartache done ever so wonderfully by the very under appreciated Wellington International Ukulele Orchestra:

(The next two posts will detail my options and how I am trying to reassert and anchor my positivity.)

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....
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6 Responses to Remission, Just a Fools Game, part 1

  1. sudaca70 says:

    Hi Randy,

    I’ve been reading your latest posts. To say that it is unfair “your” Lupus is back is more than an obvious statement; for what I’m able to see you are one amazing being in search for a great, different way of living. And -I’ll be obvious once again- you deserve to find it no matter what.
    I don’t know why exactly but since I’ve read what you’re going through lately, I can’t help thinking about a record from an Argentine musician. The record is called “Kamikaze” and the musician/poet name is Luis Alberto Spinetta; I wish there was a way to translate some of the lyrics but translating has never been my forte… Anyway, there is one song that you should listen if possible, “Águila de trueno” (Eagle of Thunder, more or less). Here’s the link, hope you’ll get it
    Take care.

    • Randy says:

      thanks so much dear, i used google translate to help. as always with the google, i feel it missed a bit of it, but i definitively got the idea. it is a pretty great one.
      when i find that great new way of being, i am pretty sure i will scream about it here.

      thanks again.

  2. Pingback: Remission, Just a Fools Game, part 2 | A life in 5 years

  3. Erica says:

    Above all else, you are a survivor. Your fears of becoming that darker person again are completely understandable, but I believe you’ve come far enough along that that can’t happen again. I don’t think you will allow that. Your soul has already evolved to a higher place and continues to evolve even with this diagnosis (sorry to get new-agey on ya, but yeah, that’s how I see it).

    My immediate thought was that the lupus came back after the stress of heartache and traveling (though maybe less the traveling). In any case, now your body is once again in a fight with itself that I think your mind and spirit will ultimately win. The best parts of you will still survive. And if remission happened once, can it not happen again? Sorry if I sound ignorant, I’m not quite sure how it all works.

    • Randy says:

      i would be remiss if i did not say i needed to see this. new agism and all.
      yes, i am a survivor. above all else. and i come from a long line of them.

      as for my lupus coming back after the heartbreak. while it may have exacerbated it, we were tracking the possibly of it long before my heart was shattered. I have known it was possible for awhile now. I just spent a large amount of time ignoring it. trying to will it away.

      and since the the chemo did not work as a long time remission instigator, my doctor believes this is quite virulent strain and future remission while certainly the goal, may be very hard to get to. in the original trials, the chemo has kept people in remission now for 7+ years in 60-something percent. That is a huge number.

      I thought I would be ensnared in that percentage.

      alas, i am not….

  4. Pingback: Remission, Just a Fools Game, part 3 | A life in 5 years

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