Since the response to my last post, Sign Language, was so positive, I thought I might write something of a sequel this time around, expanding on some of those ideas and adding new thoughts. Then, sometime around last week, I decided that that could wait because I wanted to write another post about music to coincide with new releases by Dream Theater and Anterior, which I have listened to extensively since I got them and have concluded that they are quite awesome. However, something came up on Monday afternoon that is having a pretty large impact on my life. The idea here is more of a spiritual successor to Sign Language than a direct sequel, and it will be good catharsis for me to get it out, so once again, I’m not writing about my original idea. Typical. Whatever the case, here’s this:
As I’ve mentioned before, from February 28 to September 7 of 2010, I was very sick with a serious kidney disease. Thank God I recovered and went into remission, but I was still required to remain on the medication for another year to prevent a relapse. Having just completed that year, I met with my kidney specialist on Friday to discuss a schedule for tapering me off the meds. Going into that meeting, and for the entire year prior to it, I was under the impression that the taper plan would have me coming off the meds in mid-January. My doctor confirmed that belief at our meeting and set up a schedule for me, but she just wanted to check up with the top FSGS specialist in the country (whom I had had a consultation with in April of last year and have since remained in contact with) on the particulars of the plan, and she would call me after the weekend to confirm everything. Then Monday afternoon rolled around and that’s where things started to go awry.
I got a call from my doctor and the long and short of it was that the FSGS god wanted me to do a reeeeeallllyyyy slooooooowwwww taper and I’ll probably come off the meds as next year’s birthday present. Just in case you were wondering, my birthday was YESTERDAY! So now I’m going to be on this stuff for ANOTHER WHOLE FREAKING YEAR! Yeah, it’s really really reeeeally annoying but that’s not what bothered me the most about this whole episode.
The one thing that characterized this disease best was the uncertainty associated with it. The basic synopsis is: first it was a virus, then blood tests, then waiting for the blood test results, then it was a kidney disease but they didn’t know which one, then more blood tests, then a biopsy, then a week of waiting for the biopsy results, then the emergency room, then a whole lot more blood tests, then it’s a different disease, then the emergency room again, then the medication I was taking doesn’t work, then the hospital for two weeks, then it’s chronic, then I get better. The doctors seemed to be basing their diagnoses and my regiment of pills on pure conjecture; they had never had a case with as many complications and variables as mine. In the end I got really lucky and something worked. The whole thing was just a bizarre and very unstable situation, and it was that instability that really messed with me psychologically.
Then, after having gone into remission, there was a year of relief, where all I had to do was stay on the meds in a holding pattern. There weren’t any surprises, changes, or random complications. That post-remission year replaced the prolonged chaos that I had just been experiencing with stability, and having just gone through the most turbulent year of my life, it was an absolute godsend. There was a concrete plan, a path I was to follow, and there were no expectations of anything other than that. I just mentioned it a few lines ago but it’s impossible to overstate how psychologically and emotionally important that stability was/is to me. Yet now, after a year’s worth of that, everything is getting jumbled up again. So when I say there’s more to this than the simple lengthening of my taper, I’m referring to a more psychological/emotional context. It sucks when you think you have a handle on things and then everything gets turned upside down, and that is where this post begins to connect to my last one.
There was a prolonged discussion in the comments below Sign Language during which it was asked by a reader named Yael, “What steps should we take in the face of the frightening realization that our worlds can crumble at a moment’s notice and if they do we will be powerless to stop it?” My situation is less dramatic than what we were discussing at the time but the sentiment is similar. This news has, in effect, turned my world upside-down, inside- out, and front to back, completely reshaping what this next year looks like for me. And of course, there’s the psychological impact of knowing that the thought that I was out of the woods was just an illusion.
The situation seemed pretty bleak for the rest of the day but on Tuesday I had a conversation with a close friend of mine that really set me at ease. I’ll paraphrase the hour long vent-session for brevity’s sake: I learned so much about myself and the world during the year of my illness. There’s really nothing more perspective changing than not being able to walk for about seven months and then coming out on the other side of it with full mobility. You begin to appreciate things differently and look at life differently after going through something like that. As a result of that total paradigm shift, I was changed in a way enabled me to accomplish the things that I’ve accomplished over this past year in the social, personal, and educational realms.
What I concluded about this hiccup based on that was that I’m not done learning yet, and I still have more work to do. This doesn’t contradict my Sign Language theory though; in fact, if I can say this without coming across as extremely arrogant, it’s a perfect example of what I was talking about in that post. After the initial struggle and frustration, I have accepted that there is a purpose for this experience and I don’t know what it is, but I do know that it may be revealed to me in time and what I am to learn can only take place in that setting. It took about 24 hours, but I have come to peace with it.
However, while I know I don’t have much metaphysical control of my life, I do have control over a few things. One of those things is the length of this post, and so here it will end, lest I ramble on eternally, which I am apt to do when it comes to things I am passionate about. But not to worry, endless rambling is what the comments are for! So write something if you want to talk more and we can engage in a wonderful discussion of ideas like the one from last month under Sign Language. That being said, I’m done here for now, and since you won’t be hearing from me until after Rosh Hashana and Yom Kippur, a happy new year to everyone and may this next year be filled with happiness and good times for one and all, amen!
Song of the Day: Slanderous – Machine Head