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...

End of Absentia

Hello all,

I guess I'm back. I mean, I am back, but the question of whether I shall remain back has yet to be answered. I suppose we'll all find out together.

The good news is that the surgery discussed in the previous post (I will end up getting to the Coming Soon section, but not now) went very well. It turns out that, in addition to the bone spurs, one of the screws from my ankle allograft in 2010 was loose, so that was taken out during surgery as well (I told him that another doctor said it might be loose, "I've known for years that I've had screws loose, but this is the first I've heard about the one in my ankle"). That was early November. It's been healing up very well, the pain is down and the flare ups of pain have become much less frequent. I'd call that a success. It has been good enough that I did a lot of walking on our family vacation to Oahu this last week (by the way, we went to Oahu), although my ankles weren't particularly pleased and I did spend some time in a wheelchair because of how painful and swollen the ankles were getting (see right: wearing a tight ankle brace does not really mesh well with very swollen ankles/legs). I'm planning on sitting and icing my ankles for the next couple days, that way my ankles return to normal as soon as possible.

After the surgery, I started to feel like I was returning to the mental state that had plagued me at almost the exact same time a year ago. It felt like my mind was beginning to slip again, and fear of pushing myself too hard and taking on too much led me to pull away from the world and try to keep my stress and anxiety levels as low as I could to avoid having another total nervous break. I'm hoping that I'm more stable now, and that this three-month hiatus can be broken without too much worry that I'm overreaching. It really bothers me, I feel like more of an invalid than I ever did with the physical problems, having my definition of "overreaching" be talking to people, writing, and taking a couple classes to finish up community college (which also bothers the intellectual in me, but after two failed attempts at UC schools due to bone collapses, I just don't want to go through the hassle for a third time until I'm in a much better physical, mental, and emotional state). But I've learned over the years that I can't compare myself to anyone else, or, at least, I shouldn't compare myself to anyone else, which is nearly impossible I'd like to add. It's a hard lesson, harder still to live by, but I'm doing my damnedest to follow it and take care of myself to the best of my ability, even if it feels a lot like failing (I just need to ignore that, it's hard, but I'm trying).

Inspirational metaphor goes here

Despite all this, I've been able to take some measure of comfort and hope from my memoir (Life Has No Title). A few weeks after my surgery, I decided that I'd spent enough time trying to save money by chopping bits out and sent it off to the editor. Soon, I hope to have it back so I can take a look at the notes and start with the finishing touches to have the writing and editing portion of this project complete. Then I'll be able to turn my focus toward marketing and networking, which is something I'm a bit antsy about, but at least I have faith that the memoir can do a lot of good and it's my hope that knowledge will help get me through potential rough spots that might come up in the final stages of completion. It also helps a great deal that the editor has already somewhat eased the anxiety about how good my book actually is by being kind enough to let me know that she likes the voice and the content and thinks it could be helpful to others. The narrative tone was my biggest worry about the writing aspect of the book, so that's a bit of a load off my mind. I'm really looking forward to reading her notes and starting work again on this project. I've been doing some writing in the interim, although more dabbling than anything else.

I think that's a good-sized post for now. I'm getting weird vertigo while looking at the screen, so I'm thinking this is a good stoping point. Hope all y'all had a good (insert preferred winter-related holiday here) and will have great 2016s.

~Andrew

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.