In a Sea of Chaos, Find the Lighthouse

I never would have guessed the title of this post would be so appropriate when it floated up from the depths of my brain to present itself, but we'll get to that later. (For clarification's sake, this was written after the rest of the post.)

I guess we'll start with the biggest piece of news. I'm almost at the end of the fourth draft of my memoir. Only things left after that is a read through to try to catch spelling and grammar mistakes and selecting sections for eradication to get the work count down further. If it goes according to plan, the fifth draft should be the last one. (For more updates on this and other projects, keep your eyes out for new posts on my writing blog: Make a Write Here) I thought I would be more excited, and maybe I will once draft four is done and dusted. But at the moment it's more of an anxiety trigger, probably because next I'll be moving from the thing I know, writing, to the things I dread, marketing and networking (both of which involve interacting with humans...egad!). I've marked out several avenues of approach, but that hasn't taken care of the Titanic in my stomach. I'm hoping that, as with other things that make me apprehensive, once I get to it I'll be fine. Now I just have to convince my brain that will be the case. Good luck, me.

Maybe that's not the biggest piece of news. Maybe having joint specialists tell me that the increased pain in my knees and ankles over the last couple months isn't going anywhere is bigger. Maybe seeing one of the top AVN (avascular necrosis, which is the bone disease I have that has caused many of my joints to collapse) specialists and having him tell me that there isn't really anything I can do to try to fix my crumbling bones other than replace them is bigger. Those are what dominate my thoughts as of late. That the only real solution is more joint replacements down the line when the pain becomes intolerable. The singular light in this pall of darkness is that the pain is manageable for the time being. But how much longer does that last? A year? Five years? Ten years? Ten months? Five weeks? Tomorrow? It's literally anyone's guess. It'll happen when it happens. I've started doing low-impact exercises to strengthen the joints and my body in the hopes it staves off surgery a bit longer. If not that, then at least the exercises should grant me a bit more muscular strength and support to draw from during the recovery process, which might make recovery progress more quickly. So that's good, right?

In my last post I talked about pushing harder to be social and how it was getting easier. In this post, we talk about backsliding. I've become increasingly reclusive over the last few weeks, and am only now starting to fight it again. It's another case of sticking to what I'm used to, even if what I'm used to isn't really all that great, like, say, surgery. There's comfort in familiarity, simplicity in what's already been established. It's such a constant theme in my life that I should probably think about shoving it into a book title or write essays about it. "The Siren Song of Familiarity." "Comfort in Stagnation." "Doctored Bundy, or How I Learned to Love Surgery." But moving away from that and back to listing off reasons for craving reclusivity (which sounds a lot less clunky than "reclusiveness," and I love words that whisper like liquid silk into my brain), I know my reluctance to engage in human contact is in part to do with the conditions of my joints, which has been become an increasing stressor lately as pain ratchets up and options diminish. I don't want to talk about it, because then I have to think about it, and when I think about it all it does is remind me of where I am and what sort of future appears imminent. I dunno, maybe I'm just trying to find excuses, reasons to explain and justify my lack of effort.

I think I just realized why I haven't written a blog in a while: because there doesn't seem to be much to write about other than more bumps in the Unmerry-Go-Round called My Life. Because I'm feeling particularly morbid and exhausted with looking for what's good when all I can find is more dismal news. I really have no idea what to talk about. Do I try to paint a cheery picture over the bleak canvas? Or do I leave it bare, the naked truth for all to see? I want people to see the truth, but I don't want to discourage people and make them pity me. My life isn't miserable, but when I try to look for  events worth writing about, I can't seem to find anything positive. It's in those little moments, getting into a pun match with my family, watching funny TV with a friend, inventing a word or phrase that tickles me, listening to music in the car and not caring who watches me sing and play air instruments, reading about space and Pluto, those are the moments with seemingly little importance to life's progress, and yet give life the color and pleasantness that keeps me going when all I want to do is implode and hide. Finding pleasure in the small things is what keeps the crushing weight of the Colossus of Bad News from squashing every bit of life out of me. It's what kept me (relatively) sane in the hospital when all I had to look forward to was toxic sludge and vomiting and oxygen masks. It's a revelation every time I remember this obvious, simple, yet transformative bit of insight.

Pluto

I started off this post with a title, which I quickly removed because I had no idea why I wrote it. "In a Sea of Chaos, Find the Lighthouse." It just came up, completely without context or reason. Maybe it's a lot more appropriate a title than I gave it credit for initially.  It's certainly a hell of a lot more fitting than I could have known when my subconscious floated it up. Freud might have been onto something.

~Andrew

The Good, the Bad, and Pluto

Over the last few weeks I've been thrust into the battle between my desire to move forward and my trauma trying to hold me back in a familiar place, rather than go out into the world and risk more hurt and difficulty. Even if I want to side with moving forward, it's hard to overstate the power of the trauma-induced fear in paralyzing me. It's one of those ugly truths about the whole experience of cancer, that cancer doesn't end with a pat on the back and an "Atta boy" when you get the beautiful news of remission. It stays with you, sometimes for the rest of your life. Whether it's an amputation or the scars of surgery or needing assistance or waking up screaming or crying when a memory is triggered, the experience tends to stick with you like a needy koala toddler to its mother. The last year has been especially rough, with the paralysis nearly choking the rest of my will to move forward to death. But, with a lot of work and both the desire and the need to push through the anxiety, I'm finally beginning to make headway in a couple areas. I'm hesitant about being overly optimistic, but I'm starting to think this might be the first few steps in the direction I have been wanting to go in for years now, it's just been that life is content to throw a googolplex detours my way.

Perhaps the most important thing, to me at least, has been the work I've been doing on my book. I mentioned before that I was waiting for my editor to get my memoir back to me, and only a few days later, she did. Her report and her notes on the manuscript itself were absolutely astonishing and very touching and meaningful for me in so many different ways. Personally, I believe that her kind words and belief in my story and my ability (the terror of wondering if her notes would come back as a mighty hand to swat down the pathetic insect that laughingly thought it could write kept me from opening her notes right away, but even before the end of the first paragraph I felt relief in a way that I don't think I've felt since...probably 2012, when I was the closest I've ever been to reaching that semi-normal life I've been craving) have been key in lighting a fire under me not just in working on the fourth and newest draft of my book, but also in other areas of my life. Getting a bit of confidence in one area seems to have been contagious, and it might be the first contagious thing I've been happy to catch. There's still a lot of work to be done. I'm a third of the way through her edits (plus edits of my own that I'm making after hearing her general thoughts on the book and what areas to focus on more or reduce) and hoping to finish within the next few weeks. After that, assuming the length is more reasonable than it is now (Currently I'm 20,000 words over the maximum "limit" for a memoir. Although there obviously isn't a real limit, the usual length for one ranges between 60,000 and 120,000 words), it's onto the marketing and networking. I've got a lot of trepidation about that, but the more success I have with the book and in life, the better I think I'll be at tackling these sort of problems. I believe victories in life help to give me confidence, especially when they've been so rare and tainted with bitter irony or followed up with crippling defeat. For now, that's not going to be much on my mind, I choose to focus on getting the edits done first. One thing at a time.

The other big thing I've been working on and have begun to find some success in is being more social. When I get overwhelmed I tend to shut down and shut away to decrease the amount of stimulation and unknown variables that my brain says will only make things worse. Even if I don't want to, the anxiety of having to face other living entities becomes a daunting challenge that my mind refuses to attempt. I've been wrestling with the comforts of reclusiveness for the last few months. It's comfortable for me, in much the same way I actually preferred being in the hospital after my ordeals with Graft vs. Host and the side effects of the bone marrow transplant. I hated the hospital, much as I hated reclusiveness, but there was a kind of serenity and comfort in them, they were predictable, and so there wasn't anything to be worried about. No real surprises, just maintaining a basic existence was about all I wanted to deal with. Simple things, things I could enjoy or that would pull me from reality and plop me into my head where the world couldn't get to me, that's what I wanted, even as I protested against it. It's been hard to drag my unwilling brain back into some sort of social mode, but I'm doing my best to force myself to contact people and hang out with them. I know that once I am spending time with friends, I enjoy myself tremendously, but in the days and hours and minutes leading up to that encounter, I feel the panic and the desire to call it off get stronger and stronger. Grappling with that is exhausting, but it's worth it when I finally get to see friends and I can forget about it for a time. The more I socialize, the less my brain protests, so it's been getting a bit easier lately, but I'm still wary and making sure I stay on top of the reclusive me so it can't surprise me and shut me back away again. I really do want to be part of the world, especially since the world has space and gravitational waves and Pluto.

Hope your year has started of well so far,
Ciao

PS: I'm starting a new writing blog, Make a Write Here (I know, I know, deal with it. I'll feature pieces and excerpts from various stories and non-fiction, discussions regarding aspects of writing, and updates on current writing projects. It's online at the moment, but I have yet to post any content besides the first generic "Hi, this is my blog" post. It's also not full formatted, but I'll probably get around to it before the universe ends (maybe).

Guess not...

On the (New) Horizon(s)

Hi blog,

I don't have a ton to add, but I'll see what I can do so this post isn't just two sentences.

School started up last week, much to my surprise. I thought it was starting this week but apparently I have no idea what's going on with that so...school. I was taking three classes: critical thinking, history, and biology. I'm very excited about the first two, they both seems like interesting classes taught by interesting people (I researched the teachers first to make sure I got ones that wouldn't kill me with boredom). All three were at least partially online and the biology course had an on-campus lab that lasted three hours. Now, for those not in the know, I'd attempted to take an on-campus class complete with lab for the spring semester of this year and it went catastrophically. I was away from home for seven hours with only one break to rest and the toll it took on my body put me in so much pain I was forced to drop the class or see my health severely impacted. That was my big concern with taking a lab (when I went on Friday it was about studying snails. This is actually interesting, I swear) this semester, but since it was only three hours, I wasn't as negatively affected. It still hurt, my arm is still tender from the lab three days ago, but it wasn't debilitating. Maybe it would get worse as the labs got more complex and maybe it wouldn't have, but it's a moot point. At the moment it seems like I'll be dropping the class regardless of what it does to my right arm. Why? Because of my left arm, which I shall now explain. 

October 28th, 2014. That's my explanation. Not ten minutes after I left the biology lab I got a call from my doctor's office from his surgery scheduler. Yes, that's when I'm having my left shoulder replaced, in just over two months. If I stayed in the lab I'd be missing out on the last few weeks of class, and after talking to the person teaching him, he said it would be extremely difficult to pass the class if I stopped showing up. Plus I'm going to be wonked out of my mind on drugs, and two classes will be hard enough. Every sensible fiber points to dropping the class, and my disabled student service counselor agrees. The more important focus here is in the surgery and getting better, both so I can move forward in school and in life with as few problems as possible.

Polar bear cubs are the personification of warm fuzzy feelings

Why is that? Because, and I dread saying this because it got me in trouble last time (I said that after the knees and then the shoulders got bad), this will probably be my last surgery for a while. I'm out of joints, this is #8/9 (because the left hip was done twice the numbers are a bit finicky), the only things left after this are redos when the artificial/allograft joints wear out and need to be replaced. I'm actually excited. I don't know many people who are excited to have someone cut them open and tear this joint out only to replace it with something else, but I am one of them. I'm more comfortable with surgeries than I am with most things in my life, I guess that says something. It's their familiarity that really comforts me. The monotony of surgery is part of the appeal. The surgeries may be different on the surface but underneath they're essentially the same. The only uncertainty is with the surgery itself. But once you go under and come back up it's all about the same. The pain is in different places but it's still there. The methods of recovery are a little different but you still go through it. It's one of the few constants I can count on to understand in a maelstrom of uncertainty I'm currently facing. So I cling to it with joyful relief and get spared the looming specter of a cloudy future for a few more months. It's a smidge macabre, but you find the warm fuzzy feeling of familiarity wherever you can (especially in polar bear cubs; see above).

And now for a new segment that is really only taking place today because a bunch of stuff happened...

Today in space:

Yes, Neptune is STILL in space

• Two years ago we lost the great Neil Armstrong. There's a man who has left a mark (literally) on history that very few people will ever replicate. 
• Also today two years ago (although the date is a little more approximation than hard truth, but it's pretty close), the Voyager 1 spacecraft left our solar system, making it the first man-made object to leave our little neck of the galaxy. 
• Voyager 2 performed its flyby of Neptune in 1989 on this day as well, getting a good view of our (now) farthest planet and one of its strange moons, Triton. 
• Finally, the spacecraft New Horizons crossed Neptune's orbit (25 years to the day that Voyager 2 did) on its way to rendezvous with Pluto and then a couple objects in the region nearby. New Horizons should be reaching Pluto in a little under a year.

And just to round things off: I finished up a short story. It's actually a remake of a story I did a few years ago. I'm going to find a place to put it and then link it to this blog sometime in the future probably.  That's about it. 

Your cosmic-minded tyrant,

Andrew