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.

My 7th Birthday

Hi blog,

Apologies for the gap. I've been trying to get a handle on everything and it's been frustrating and draining to say the least. The closer the surgery gets the more things seem to pop up to deal with. I'm definitely going to be looking forward to a nice, relaxing, pain-filled break after I get my shoulder replaced in exactly two weeks, let me tell you.

I was going to put a picture of a knee with AVN, but then I
decided this was a much better option. Don't you think?

Well, I suppose you're waiting to hear about the knee. I am too, I only just had the MRI on Saturday so I won't be learning anything from that for another few days probably. However, two days before that I went in to see my knee specialist (the first guy I saw was my general practitioner, who also does sports medicine) and the x-rays looked about normal, same as before. But then he pulled up a knee MRI I had done back in May (I didn't even remember having it) and he showed me the inside of my knee. It wasn't pretty. The majority of the interior was made up of necrosed (dead) bone. To be fair, this isn't exactly news to me. I've known that there was a lot of necrosis for a while, because of my Avascular necrosis (a degenerative bone disease caused by steroids. See here for details), but as long as the dead stuff stays inside the bone and doesn't penetrate to the surface, it's not going to cause any pain. Well, there was a tiny tentacle of necrotic (just using all sorts of variations of the word today aren't I?) bone snaking down through a big patch of it and had just barely breached the surface. There was only a tiny spot exposed, and my specialist thinks that might be what's causing the knee pain.
Theory: Because the pain only really shows up when I bend my knee at certain angles, that small dead spot is rubbing against something at that certain angle and causing the pain. When I get this newest MRI back I'll learn two things. A) Whether or not the little spot has grown any, 2) What can be done about it, assuming something needs to be done about it. Obviously there's a lot of speculation here, and that in itself is driving me up the wall. As accepting as I am about the shoulder surgery, the possibility that I might need another replacement (if the necrosis is spreading in the knee and the pain continues to get worse, my specialist might recommend surgery again) after that has done nothing to improve my mood. Frankly, I'm pissed. Murphy, always Murphy.

But that's neither here or there now so I'm trying not to think about it too much (and not doing a very good job). The book editing has been coming along, not great or fast, but it is progressing at least. Unfortunately there are more pressing things to do than editing my memoir. I'm not happy about it, because this memoir is literally the most important thing to me, but what can you do?

Let's talk about something pleasant. I feel this whole post has had a somewhat sour tinge to it. But now for something uplifting and cheerful! (Kinda) Two days ago I had my 7-year rebirthday (and I think I'm having a regular one in a few days too). In some ways, I am seven years old. This me, right now, is only seven years old. It's when I got my bone marrow transplant from marrow harvested from my brother Chad's hip bone (the needles look like something out of the Spanish Inquisition).  October 12, 2007 is when I got my new life, a new chance.

Excerpt from Life Has No Title:

When you receive an infusion of bone marrow, the staff up at City of Hope calls it your “birthday,” the day where you’re given new life and, in a sense, reborn. October 12, 2007 is my oncological birthday. The doctor for the day, Dr. Pawlowska (spelled right the very first time!), came in with a nurse carrying a bag of what I at first believed was blood. I had known that my mom was organizing people to donate blood for after I had my bone marrow transplant, and thought that before I could receive it I would need to bolster my cell counts, but I was mistaken. Instead, the ruddy-colored viscous liquid was the bone marrow! This piqued my interest a great deal, insofar as someone who is hopped up on a staggering amount of dilaudid can do anything to a great deal. I had been paying as much attention as possible, learning what I could about this and that, gaining as much knowledge as a second-year med school student in the process. If I had the energy to focus, I would listen in on conversations and pick up some odd terminology or medical explanation for whatever god-forsaken side effect I had picked up that day.

“How are you today good sir?” Dr. Pawlowska asked in her thick-accented way. It was the same question every time she saw me in the morning. “How are you today good sir?”

Most days I would respond with, “Okay I guess.” Or “Not too great.” I was a master of understatement. But today, I gathered up a smile and told her, “Excited. That’s the bone marrow?”

“It is. We’ll just hook this up and you’ll be good to go.”

“Wait…how does it get into my bones then?” I asked suspiciously. As far as I could tell, there were no nanobots lurking in the substance ready to transport the bone marrow from my bloodstream into the centers of my bones, where they would thrive and drive out the remnants of my treasonous cells.

Dr. Pawlowska offered up a tentative smile. “To be honest, we’re not entirely sure. I could tell you all about the different theories and everything, but nothing has been proven definitively. They sort of magically find their way into the bones.”

Magic. One of the last words you want to hear when a doctor is explaining such an important medical procedure to you. “Magic,” I repeated slowly, not entirely sure if I had misheard her in my drug-induced haze.

“Magic,” she reaffirmed.

We looked at each other for a long moment, then I shrugged and lay back in my bed, too exhausted to argue and knowing that the good doctor knew what she was doing, even if she wasn’t sure about the exact nature of the procedure. “Good enough for me. Let’s get started.”

So there you go. Chad saved my life. I wouldn't be here if he hadn't donated his marrow. The poor kid got stabbed by a thousand saw-toothed needles, woke up so groggy he couldn't figure out how to properly use a straw and had a sore hip for several days. I have him to thank for this second chance and the ability to continue to live and enjoy life, all the things I love: writing, space, science, friends, family, space. I'll never be able to repay that, but at least I can pester him with interesting space facts the next time I see him.

PS: Comet Siding Spring will be flying past Mars on October 19 at a distance of 89,000 miles (much closer than the moon is to Earth). It'll be awesome.

Your 7-year-old Master,
Andrew Bundy

A Murphaic Victory

Hello blog,

I know I neglected you all last week, but I was busy doing stuff and needed to rethink my direction with you. Still thinking, but I don't think it's fair that you should suffer because of my reassessment. So, until then, you shall continue to develop a use for one thing or another.

VICTORY! After a couple months of writing about all of 2008 (easily the worst year of my life) I am finally finished! I was extremely stressed the entire time and was nearly convinced that I would either relapse and ruin over four years of sobriety or end up in a mental institution. I am happy to report that neither of these occurred! Honestly, I'm kind of shocked. In fact, I was so shocked and happy that I actually wrote about the whole thing at the end of the chapter. Here's an excerpt from that:

Secondly, I’m telling you this because I…am…DONE! 2008. No more! I am free from the hellish quagmire of pain and misery that nearly killed me multiple times, that destroyed my body and put me through the whole new hell of recovery that you will read about through the rest of this book. If any part of my life was bound to totally undo me and send me to a mental institution with a very clean, snug jacket clasped around me, 2008 was it. But it hasn’t. I’ve come very close to relapsing (in a drug sense, you’ll read about that too in a bit), to crying and never stopping, to slamming my head against a wall until my brains resemble scrambled eggs, to curling up in a ball and never coming undone, to never speaking again, to losing my very essence to complete madness. I’ve been assaulted by memories rising out of the dark crypts where I buried them so long ago, I’ve yelled at myself both in my head and out loud, I’ve told myself to shut up, to stop writing, to give up and give in. But I DID NOT!

Whenever people tell me I’m strong and they could never go through what I’ve been through, I tell them the same thing: “I’m not really any stronger than you are. You really only have two choices. Be strong or die. Most people’s self-preservation instincts can pull them through some of the craziest stuff. I hope you never have to find out though. I hope you’re allowed to keep on believing that you could never make it through what I’ve made it through. I don’t want you to go through what I went through.” I wouldn’t wish it on anyone.

Still, I always diminish my strength because I believe that people are far stronger than they think. If you had asked me if I was strong enough to survive even half of what I’ve been through in the last seven years, I would have laughed and said “No way!” But I have. We underestimate ourselves. There is so much potential strength lurking in every single one of us. You, yes you, can almost certainly make it through what I did. I hope you never have to find out. But I believe in the power of the human mind and its astonishing ability to guide us through times of intense trouble. Sure, we have little hiccups along the way, like my panic attacks or nervous breakdowns, but those occurred after the main body of the danger. In the midst of it, you lose sight of almost everything except one: survival.

That being said, I’m a lot stronger than I would have guessed. When I started writing about my diagnosis, I told myself that if I made it through 2008 without relapsing or ending up in a mental hospital, I would be some kind of uber Superman. I’ve tried half a dozen times before and never made it into the year 2008, the year of hell. Honestly, I’m not entirely sure how I did it. Baby steps I guess. I didn’t look too far ahead, I just focused on one problem at a time. That’s what it takes sometimes. Baby steps.

Of course, my life seems to be watched over like a hawk by Murphy's law. Murphy doesn't like me very much. A couple weeks ago I started having shoulder pain shortly after getting a vaccine and having the nurse hit a nerve bundle. That pain dissipated, but I realized that a much deeper, sharper pain was emerging in my right shoulder. Then it became mirror (with a lesser intensity) on the left side. I have severe bone degeneration in my shoulders, have for years now. And although my range of motion is pathetic at best, pain has never really been an issue, so I haven't seen any reason to get them replaced. But now, I fear that might be my course of action. I saw my general practitioner today and got some x-rays. He looked at them and told me he hasn't seen any joint look that bad from degeneration ever. I told him I would probably make a good case study then. "It looks like it's melted," he told me. This is the image that popped up into my dismayed head:

Yes, my shoulder resembles a melting clock from Salvador Dali's "The Persistence of Memory." The socket is intact, but the head (the "ball" of the ball-and-socket joint) of the shoulder is just a total mess. There's bone spurs and collapse and cracks and fractures running through both shoulders. The right one looks only marginally better than the left. My doctor recommended we try a couple different type of shots, but if the pain persists, I'll have to get one or both of my shoulders replaced. Needless to say, I'm rather upset about this. About a year ago I had my left knee partially replaced (transplanted technically) and I very foolishly made the declaration that "this is probably going to be my last surgery for a while." Murphy must have heard me, because it's not even a year later and now my shoulders are going. The only good thing I can think of is that at least this will complete the set. Eight major joints and none of them mine. There's a lot of words going through my head now, and hardly any of them are printable.

A totally normal left shoulder x-ray

My left shoulder x-ray as of April 11, 2014. Where the arrow is pointing, you can just make out a
thin crescent shape going from the bottom left of the ball to the top middle of it. Everything inside
of that has collapsed. The digital picture looked about twice as bad as this one. There are also a number
of cracks in the bone that can be made out in addition to decreased bone density (more transparent)
compared to the normal x-ray seen above. 

Your relieved, concerned, and irritated master,
Andrew