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...

Rollercoaster (Featuring Claire)

If you want to look at it from a glass half full perspective, then this recent reclusiveness was a lot shorter than the last one. A month and a half versus five months? That's better. If you want to look at it from a glass half empty perspective...then keep it to yourself. Or myself, since I'm the one struggling NOT to look at the glass as half empty.

Speaking of struggling...

These last few weeks have been extremely difficult for me. At times I've felt like I was on the verge of losing control like I had in January, although I am happy to report that this week has been substantially better than the last two or three. I'd actually started writing this post over a week ago and the saved draft I had was wildly different from what I'm feeling now. I think it really sums up just how much of a roller coaster this year has been for me.

There are two big events that I can cite for my increased anxiety and reclusivity (I need to get this word in the dictionary, I don't care what anyone else thinks). Firstly, I've run into another major hurdle with my health: knees. For those who don't know, I've actually replaced parts of my knees before, back in 2012 (right) and 2013 (left). When most people think of joint replacement, they think of the total joint replacements that involve fitting an artificial device where the puny organic joint used to be. But for me, the doctor and I decided that we would approach it from a different route: allograft. Essentially an allograft can be explained as a bone replacement. It appears to have a better lifespan than the artificial joints and, being younger than most recipients of new joints, it made more sense to do an allograft so I would not need to undergo surgery again for a longer period than I would have if I'd scored myself a total knee replacement. However, the allograft didn't replace the whole joint, just the most damaged parts (although the doctor did say that the allografts were looking really good, the best part of the knee actually). There is still a large amount of AVN (degeneration and dead bone) in my knees, and over the last few months I've noticed an uptick in the amount of pain experienced in both joints. I saw the doctor about a month ago and he couldn't exactly pin down what was wrong, but he basically said that there wouldn't be any major fix for the pain except to just scrap the whole knee and put in a shiny new artificial one. Needless to say, I was extremely displeased with this news. I'd just finished up getting both my shoulders replaced (both total joint replacements) and thought I was in the clear for at least another 5-10 years (when the artificial joints put in 5 years ago might need to be replaced again). Several months of no physical problems left me cautiously optimistic, because I'd pretty much replaced everything I could replace, but I can't remember anytime in the last 8 years when there hadn't been some major complication at least one or two times a year, so I felt overdue for something. So when the doctor said "Probably have to replace the whole thing," I was both shocked and unsurprised.

I took a couple weeks to decide whether I wanted to replace them or not, after all, the pain isn't debilitating yet. But what really drove me to say yes was the fact that he wouldn't have any surgery openings until the end of September. I didn't trust Murphy to play nice (I suspect my life is guided by Murphy's Law, as discussed in the blog post A Murphaic Victory). Rather than wait until the pain became debilitating and unbearable (assuming it ever did), I didn't want to wait until the pain got that bad to schedule the surgery and then be forced to wait several months in agony while I waited to get fixed. By scheduling it now, I have a safeguard in place in case they DO get worse, and if they don't I can always cancel. It all sounds solid, but for some reason that no matter how hard I try to explain, nobody really seems to be able to fully grasp (which is understandable, seeing how my situation borders on being unique) why making that call and scheduling the surgery was so difficult and painful for me. It feels like giving up. And at a time where I'm just starting to come back into the world and maybe even look forward to what the future has in store for me, it all comes (potentially) crashing back down to Earth and the same cycle of replacements and surgeries and setbacks all rushes back into place. Stuck. Scheduling the surgery makes me stuck. I won't pretend very many people will understand why the two-minute phone call undid two months of exhausting mental work at Cognitive Behavioral Therapy (CBT), but I'll leave it out there in case someone does manage to figure it out.
Summary (in case none of the above makes sense): My knees, which had already been partially replaced, are now beginning to hurt again. The doctor told me the only real solution would be to completely replace them, so I scheduled a surgery for the end of September as a safeguard for if the pain gets worse. It's stressed me out a lot.

The proof is somewhere in there

Now that the small essay you may or may not have just finished reading is over, I can move onto the second big reason for my increased anxiety and depression: diagnosversary. Sunday marks the eighth year of my leukemia diagnosis. Some years it hasn't been too bad, others it's been the worst day of the year. With my mental state the way it is, inherently unstable and only just starting to recover, perhaps it's more than a little underst
andable that I am what the kids call "freaking scared." The anticipation is definitely one of the worst parts (and I'm sure I've mentioned how much waiting is the worst part of anything medical), but coupled with my very recent recovery and scheduling the surgery, I've become exceedingly anxious about the day. Thinking or talking about it makes me anxious, I just caught myself holding my breath for the last minute and noticed all my muscles were tight and my body felt jittery and flighty. Perhaps why I am so nervous is because of how anxious I am NOW, not even on the actual day. The day is a symbol of a life thrown off the rails. It brings up memories that I've so deeply suppressed that I didn't even know they were there. Maybe the reason it's so bad is because I fixate on it and work myself up into a tizzy in the days leading up to it. In my last day of CBT, I discussed my anxiety and somebody pointed out that the day only means something because I make it mean something. Sunday is just Sunday after all. I think I've known that for a while, but trying to tell myself things that could be helpful for me...well let's just say I tend to discount much of the positive self-talk I attempt. It's a lot easier for me to accept something coming from someone else. I'm really going to try my best to remind myself that it is a day just like any other, that the only power it has over me is the power I give it. Easier said than done obviously, but it's certainly a new approach that warrants a try. I could also reframe it in a positive light: I'm alive. Sure, that day may have pushed me into a life nobody would ever ask for, but I made it through and survived it all. I guess the proof will be in the pudding, although why anybody would bury proof in a pudding is utterly beyond me.

The Old Guard with Mr. Swan

Quick life tidbit: I went to a send-off for my high school drama teacher Mr. Swan last night. I thought there would be tons of alumni there, but it turned out to also be the awards ceremony for the kids at the high school (most of whom are ten years younger than I am. Nothing makes you feel older than being in a room with kids nearly half your age). When I got there, I only saw children and immediately wondered if I had the wrong night. Nick came in a few minutes later, also being a theater geek from back in the day, and for nearly half an hour we thought we were the oldest people in the room. Luckily, there was a group of our peers from back in the day sitting at a table on the other side of the room. Only a few of us "old people" showed up, but we had a raucous good time reminiscing about drama and looking at old pictures of ourselves in plays. It was an emotional night for just about everyone there, but it was really good to see some of the old thespian buddies and to catch up afterward over a beer and talk about all sorts of things (ranging from Chinese words never to say in America to expensive toys to amusing stories from our lives). There is going to be another get together, this time with a lot more of the Old Guard (which is very literal for me, because in both Shakespeare plays I performed in, I played guards) at a restaurant later this month. I'm pretty excited to see a lot of the people I expected to see at the send-off last night.

This last week has been better for me. I think a lot of that has to do with me being extremely busy running around San Diego (not literally, I save that for Nick) to doctor appointments and whatsuch. I've also been a lot more social and have been doing my best to talk to and hang out with several friends of the last week or so. I also forced myself into writing more. I've been reluctant and anxious about finishing a long short story that I am enamored with. I didn't know why I was anxious about sitting down to work on it every time I went to write, but last night I figured it out. When I'm done with this story, I have no excuse or distraction to keep me from getting back to editing my memoir, Life Has No Title. Currently, I'm stopped at the very worst time in my life. This section was not only the most difficult to live through, but also the most difficult to write. At a time where I'm worried about memories being triggered by the diagnosversary, perhaps it's not hard to imagine why I would be finding any way (whether conscious or not) to prevent myself from going back to work on the project that literally takes my most painful memories and shoves them in my face for me to reread and edit. But...I know I have to do it. I've got lots of wonderful feedback from my neighbor (the first professional feedback I've ever gotten to this extent, which was nerve-racking in and of itself) so I will be able to go back into the book with a lot better sense of how to edit it. But holy damn am I really not looking forward to this. I need to force myself to do it though because this is extremely important and I need to face my fears. Not just face them, but overcome them. It'll be cathartic. I hope.

Ciao for now

PS: By the next post I hope to have some pretty exciting news regarding the memoir. Appendages crossed!

PPS: Claire says hi

Return of the Recluse

I'm so tempted to put Episode VI: Return of the Recluse...

Man, where to start...

First, I would like to explain my nearly half a year absence. After I had my left shoulder replaced, things quickly went downhill. Physically I was doing well (we'll get back to that later), but mentally something had happened that I could not fully explain. All I knew was that I was feeling disconnected, anxious, depressed, and extremely unhappy with life in general. Then in January, I hit rock bottom. I began to have nightmares, sleep paralysis, and suffered from extreme paranoia that made me jump at every little sound or even something as simple as an object in my peripheral vision that I couldn't immediately identify. I felt like I was going insane, that I'd finally suffered that long-term nervous breakdown that I knew would be coming for me at some point. I've had some breakdowns before, but none lasting this long. I was in this state of agitation for over a month and knew that I couldn't live life like that. So I sought out help and my therapist recommended that I try doing some mindfulness meditation (we'll get to that later, part 2). Shortly after I began the mindfulness, I started to feel better, also buoyed by an anti-depressant that I've been on and off since I was 8. It took me a while to figure out what was going on, but I figured out that it was my PTSD that was causing me to freak out and turn into a quivering shadow of myself for several months. My best guess is that this was all brought on because I no longer had any surgeries to worry about (or look forward to, if I'm being honest the thought of surgery has been more comforting than distressing, because I know what to expect) in the near future and my path was, for the first time, open for me to do as I pleased without having to worry about a very possible disruption from Murphy to derail my plans. However, I still have that fear of the future, moving forward is scary. Change is scary. I'm so familiar with what I have right now, even if I'm not satisfied with it, that to change and move on with my life and put the past behind me...it's terrifying to me. So that is where my life is now, at the precipice of an uncertain drop into the future. Behind me: solid ground, the past. Down there: black uncertainty, the future. So much of me is screaming not to take that leap, but I know I need to if I am ever to make all of my suffering and the suffering I've caused to those who care about me worth something. Now in my life comes the hard part...moving out of the label of survivor to thriver.

I suppose I should also discuss how my physical health has been, because that's important too. After the left shoulder was replaced, I began to use my right shoulder a great deal more (obviously) and as a result both shoulders are doing exceptionally well. I didn't have much doubt that the left shoulder would be anything but fine, and I was right. The left shoulder progressed even faster than the right, and now they are about the same, with much better ranges of motion and a lot less pain than I was having since the surgeries. Although the shoulders are doing well, my knees have been real asshats. I've been dealing with more general pain in both knees (the right one is worse), as well as random spurts of flaring and sharp pain that crops up at random times. I'm calling my knee specialist in the next couple days to see if I can get an appointment and find out what's going on. At the same time as the mental breakdown, I starting having a severe migraine storm (hurrigraine, as I have not-so-affectionately called them) where I have bad headaches on a daily basis and bad migraines a few times a week. I'm on a new medication for that now, hopefully it will calm that down shortly.

I don't really think I need to add too much more to what's going on mentally for me. Besides the depression, PTSD, nightmares, sleep paralysis, high anxiety, fear of the future, and completely shutting myself away and becoming hyper-reclusive, there's not much going on. Most of that I'd already discussed, and I am happy to say that a lot of the paranoia and nightmares have almost completely gone away. I'm no longer waking up screaming every night or nearly pissing myself if a box is left in the hallway and I see it out of the corner of my eye. So that's good. The depression and PTSD and anxiety are all still there, but I've been going to a Cognitive therapy group that has given me a few tools and insights in the three weeks I've been attending it. Mixed with the mindfulness mentioned above and it has been very helpful in getting me off my back and into a sitting position, with the goal of getting back on my feet closer to being within my reach than it was since my first shoulder surgery. (I identify that first surgery as the genesis of this breakdown, with the second one being the thing that helped break me completely)

Sadly, I haven't been doing much writing, but that's really not terribly surprising considering I've been totally drained of energy for the last five months or so. Depression does that to you. It's one of the hardest things for me to overcome at the moment, because it's still there, festering like an infected wound that I can't quite reach to clean it out properly. And the anxiety of trying to move forward in my life doesn't really help out too much either. But I am doing my best to fight against it, even if it often feels like a losing battle, because I know I can get through this just like I have everything else. I just need to push through and pull myself out of this deep dark hole I've dug for myself.

I think the only person I've seen with any real regularity is Nick. He and I are continuing to work on our books and are both in the editing phase (which means different things for him and I, but that's all just semantics). I'm around 1/3 of the way through my second draft of my memoir Life Has No Title, and Nick and I continue to make good progress when we meet up at least once a week. I would like to start doing some editing outside of those sessions, I know I should, but it's really tough. I think it's so tough because the Cognitive therapy lasts for almost five hours (half an hour drive both ways with over three hours of therapy) and I am completely exhausted mentally, emotionally, and physically by the time I get home and all I want to do is lie down and read or watch TV or anything besides push myself harder with going through the pages of a book that were excruciating to write. However, as I get better, I anticipate an uptick in my production and I have currently set the goal of being finished with the second draft by July 1, 2015. We'll see how it goes.

I think that's about it for now. I will likely go into more detail about the Cognitive therapy and Mindfulness and maybe even my mental health in other posts, but the fact that I'm even writing this is a good sign. It means I am trying to come out of my self-imposed exile and wish to stop being reclusive and attempt to be social again. It's hard, really hard. It's comfortable to be disconnected from everyone, but I know it needs to be done. I have a message that needs to get out and I can't do that sitting in my car driving between doctors and staying at home and picking away at random projects. This is what I need.

Welcome back to my blog, let's hope I can be consistent with the posts like I was before. Fingers (and everything else that's flexible enough) crossed.