Full of spirit’s melancholy And eternity’s despair

Since there is no way my hand would hold up writing this out on paper, and my writing would never keep up with my brain the way my typing does, once again, the electronic version wins. Skip if you’e not interested in things non-food related.

I remember during treatment that the medical folks (and the counselor types) said that there would be low points – sometimes, there would even be incredibly low points where doubt and other things would take up space in my head. They weren’t referring to the treatment itself, but the mental fatigue that sets in as a byproduct of trying to survive the intentional damage being done to your body in order to remove the traces of the invited guests that have taken up residence. These low points, they said, could come during treatment itself, or even on the upside of healing once treatment is over.

I recall only a couple of points during treatment that I would deem low, since I, like many others going through it, was in such a fog from a couple weeks onward that so much energy was taken up just getting through the day that pondering too closely on anything was out of the question. One moment I do not remember well. The other I do: breaking down completely and apologizing to my mother and one of my sisters because they had to take care of me so much. It’s always been my job to take care of other people, you see.

The past few days, though, have brought another horribly low point for me. I’ve never really been terribly concerned about what people thought of me, but I am a bit more sensitive these days than I used to be, regarding both appearance and behavior. The former for obvious reasons, like the scar that continues to heal, but that is still a pair of angry red lines on my skin. The latter because for the past six months I’ve felt like a stranger in my own body, not always aware of where my body is in space, or how the left side of my body will react when I try to do something without thought – like reach for something on a shelf higher than shoulder level, only to find I cannot do that with my left arm. Or try to turn my head suddenly to the left, only to find pain shooting up from my neck into the base of my skull and radiating down into my shoulder. Or try to say something only to have it come out mangled, a fully-formed but half-realized attempt at communication.

Ever since I’ve been more coherent and back online/back in the world, I’ve been carrying on between one and two dozen conversations with people about a great variety of topics, from history to books to cooking to (yes) dating. I’ve not met most of my correspondents, of course, as that is the beauty of being online, but I’ve met a few. There are benefits to this just as there are downfalls. For the most part, these discussions are benign, slowly developing like bread set aside for a rise.


One person from my past contacted me and said they’d like to get back together, see if something could be built again. They also said that I’d have to change a few things in myself to make it work. I’m not entirely sure why people throw these sorts of propositions out. Why would I change who I am for anyone, especially if they are unwilling to do so themselves? There is a place for demands – you must stop drinking so much, you must not use drugs – and there is a place for compromise – yes, I can see that I do x too often, I’ll work on that. But demanding that someone else change themselves to fit into your life like a round peg in a round hole? No. Being told there is some facet of yourself that you need to change even though you know it’s not really that bad a thing, though, is annoying and a bit deflating.

Worse still are the three who said I was too arrogant, too above it all, too aloof to be someone they’d consider to be more than a friend (or acquaintance). This is one one wrote, verbatim: “I think you’re a great person. You’re nice and kind to people, even strangers, and that says a lot. You’re witty and smarter than anyone I’ve ever met, and it would be really easy to get very serious about you. But it’s scary dealing with someone like you, because it seems like you look over the rest of the world like you’re not quite part of it.” I’ve also been told I treat the world like my “own private laboratory experiment”. Generally, I would discount this sort of thing based on the source, and based on the fact that I’ve never considered myself above anyone (quite the contrary) and never considered myself to be some arrogant ass who treats those I want to impress differently than anyone else (that is, I’m just as nice to the person serving me dinner in a restaurant as I am to the person with whom I am eating). But when multiple people say the same thing, it really starts you thinking about what flaws you have and makes you wonder if at any point you’ll be able to have any sort of normal relationship with someone.

The other day I was speaking to someone I’d met somewhere. I was told that I “moved like a robot sometimes” (referring to my range of motion in the left shoulder/neck area) and that they “had no interest in handicapped people”. Now, I’m quite aware of my shortcomings in this particular area. I work hard to restore what I can of what I lost, cognizant all the while that I will never physically be able to do everything I used to do. And usually I would just dimiss this sort of comment – and this type of person – without a second thought. But coming as it did amongst the other comments people had made, and with my own sensitivity, no matter how unjustified, about how I look and how I’m able to move (or not), this really drove a spike into my ego and pushed me to a new low.

My family sensed there was something wrong, but I couldn’t (wouldn’t) tell them about these things, so I’m afraid I left them worrying about me unnecessarily without something concrete on which to pin it. And so it was that I turned to two people – two dear friends – very close to me, concerned about me, and unloaded on them. Both of them understood the problem my psyche was having with these comments and that the answer was not to tell me just to snap out of it. I’m incredibly grateful to have these kinds of people around me. Thanks to them, and another excursion today to eat (soup) in public, letting conversation flow over and around me like water in a cool stream, enjoying a rare, truly spring-like day with a hint of crispness in the air, I’m back on track and ready to face whatever else pops up before me, demon or not.

2 thoughts on “Full of spirit’s melancholy And eternity’s despair”

  1. Annette:

    You know my story, so it will be no surprise that I celebrate your recovery – even the bumpy parts. You have endured much, survived much, and proven what a courageous, strong and admirable person you are… take heart, there are many of us struggling to be just a fraction of what you are…

  2. Julia, good to see you!

    I know we’ve had this discussion before, and I thank you for your continued very nice and sweet comments. But I’ll say again that people like yourself and the (25-year old) woman I met who had terminal colon cancer are showing the very best of humanity in the face of dire circumstance that has no basis in justice whatsoever.

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