The Story

   It's easy for me to compare my life against everyone around me. I get into this rut where I think I should be better, should have done more with myself. I'm very competitive and I never feel my shortcomings as deeply as I do when I'm reading someone else's story.

   I get wrapped up in fictional works. TV shows, movies, books; they all appeal to me as a place where I can leave reality behind for some alternative. It's a place where I don't have to face my own failures. I don't have to look myself in the mirror and hate what I see.

   But their story is not mine. It never will be. I can't live my life crammed full of what-ifs. What if I could have gone into acting or music or art at a much younger age? What if I'd gone to college and gotten a traditional education? What if I'd been more outgoing, taken more chances, been a braver person? Could I have been or done something great?

   I could do this my entire life and never amount to anything; just a pile of regret and bad memories. I could burn out like this, dreaming of everything I could have been, should have been. In the end, none of those dreams of grandiosity will amount to anything.

   The person I am now was created through fire. I wasn't born brave or outgoing. I haven't always been willing to stand up for myself and fight for what I want. This being is scarred and imperfect, but it's all I have. I can't get back the past thirty years. I'm not sure I would if I could. I have a unique perspective on life that can only be brought about by pain. The person who is willing to sell everything and leave all they've known behind is not the same person of ten years ago, or even five.

   The lead in my story isn't attractive. They aren't in shape, and although they're always trying to improve, they know they will never be Hollywood material. They will never be the best at anything. A wise man once said "There will always be someone better; more talented, better looking, more experienced. The only thing you have to offer is yourself; if you spend your time trying to be someone else, you're giving up the only thing that makes you stand out from the crowd."

   Unlike fictional stories, I can't control the beginning. I can't predict the ending. But in between is a whole pack of blank pages for me to fill with my story, and I'm just getting started.

The Darkness of the Unknown

   One of the books I'm currently reading is Jim Beaver's "Life's That Way." Jim is a Vietnam veteran, writer, film historian, and actor who has been in many films and TV shows but is probably best known for his roles on "Deadwood" and "Supernatural."

   In 2002, Jim's wife, Cecily - an avid health advocate and non-smoker - was diagnosed with advanced-stage lung cancer mere weeks after they discovered their daughter was autistic. She died in 2004. Writing helped Jim cope during this time and he sent out regular emails to a mailing list of friends and family detailing Cecily's and his fight against her illness. He later compiled many of these emails into a book that became "Life's That Way."

   I've been putting off reading the book because of my ability to empathize with the position of caregiver and significant other to a cancer patient. A few weeks ago I finally picked up the Kindle version on Amazon, but I still find that I need to read it in small doses. It's a very intimate, personal struggle and forces me to absorb it in pieces I can handle.

   Near the beginning of the book, Jim has a quote from the memoirs of Edward Teller, a theoretical physicist who was involved with the Manhattan Project and fathered the hydrogen bomb. It's a quote that I initially found somewhat at odds with what I knew about Teller, but on reflection and a little deeper study, both sums up the man and where I am in my life now.

   After Randy died, I continued on autopilot. I had been a caregiver for so long that I didn't know what else to do. I took two weeks off from work as "funeral leave" but I didn't spend them mourning. Instead, I went home and immediately sorted his belongings into keep, donate, and toss. I kept very little.

   I had everyone fooled into believing that I was coping perfectly - even myself. I truly believed that between the counseling, the medication, and my own self-awareness, I was right on track. I mapped out my recovery with the precision of a master draftsman. I researched the five stages of grief and planned out how long I could afford to spend on each one. I knew I could make it through this; I was doing everything right.

   Everything except actually grieving.

   I'm not sure how long it took me to realize that something was wrong. The detachment I felt the first two weeks continued on through the following months. I sometimes teared up thinking of Randy, but those one or two tears were a luxury. I knew it wasn't normal, yet I had read so much about the individual processing of loss that I figured this was just how I was going to deal with everything.

   Looking back, I realize I should have known better. When I get a cold or the flu, I don't tend to stay sick for very long. Instead, I get violently ill for a very short period of time. It's like my body is aware that we have such a limited time here, it's best to get any inevitable unpleasantness out of the way as quickly as possible.

   It wasn't until six months after his death that the pain finally hit me. My world came to a screeching halt. I stopped eating. I stopped sleeping. I'm not entirely sure how I continued to make it to work, to be honest. For about two weeks I mourned with everything in me. A very close friend asked me to set up an appointment with my counselor (whom I had previously seen but no longer needed regular visits with) but I refused. I told her that this sorrow had been there all along, waiting until I was ready, and there was nothing to do but batten down the hatches and ride out the storm.

   I survived but coming out the other side of this process I felt my world had shifted. I could no longer stay in the same place doing the same job and living in the same house, because I was no longer the same person. A core part of me had changed. I realized it was time to move on. In doing so, I threw the metaphorical dart at the map (the details of that decision were actually a little more scientific) and decided to sell everything I own and move to the West Coast to pursue my first love of the arts.

   I am terrified. This is everything I know and I'm putting it behind me for an uncertain future in music and acting. It's the first time in my life that I've made a conscious decision to go where I want to go, rather than letting circumstances pull me along. I'm struggling not to get overwhelmed by the details of selling the house and finding a new job and let them talk me into staying in my comfort zone. I'd be lying if I said I don't doubt my own sanity at times, but there is a fire in my gut that says this is right, and I'm going to follow it wherever it takes me.

   “When you get to the end of all the light you know, and it’s time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: either you will be given something solid to stand on, or you will be taught how to fly.”  - Edward Teller

  

The Cost of Privacy

   I'm not an outgoing person by nature. That's not to say I'm antisocial; I just prefer more intimate settings than loud, busy gatherings. I came across this comic a while back where the artist described herself as sitting in the kitchen making friends with the household cat while the party carried on in the other room. It made me laugh in a slightly self-conscious manner. I was as amused at how well I relate as I was the comic itself.

   For the longest time I was content with being an introvert. I observed at social events but rarely participated. Wallflower was my comfort zone. I saw no reason to leave it because most people didn't have anything in common with me anyway and introversion was an easy way to avoid awkward small talk.

   Eventually I realized I had it backwards. It wasn't that I withdrew because society had nothing to offer me; it was because I felt I had nothing to offer back. Why should I open myself up to a stranger's critique and criticism over nothing of import?

   A few years ago I attended South Dakota's annual Technology & Innovation in Education, an ed tech conference and expo that brings educators, presenters, and vendors together for three days of breakout sessions and cool gadget freebies (let's be honest here, the freebies are why we show up). As a ten-year IT veteran, it's sometimes a struggle to find a breakout that is more on the technical side, so I occasionally end up sitting in on a session because it interests me personally.

   I couldn't begin to tell you the speaker's name or the title of this specific session, but I do remember him emphasizing how important it was to have a public presence in our current age of technology. This was a novel thought for me. I had been of the opinion that privacy was a default state of being, and being available to the public was reserved for those wealthy enough to afford a PR agent. In my mind, no one could be both social and genuine; the stress alone would kill you.

   In March or April I started watching a cult show with a dedicated, loyal fandom. I won't go into details on the show itself here, but I was impressed with how open the cast is towards their fans. They are active on social media, interact with the public at conventions, and go out of their way to reach out to followers who are struggling in various ways. For the most part, that respect is returned by the fans who are as likely as not to chide one another if they feel a member of the "family" has stepped out of line and imposed on a cast member's privacy.

   Recently one of the actors was involved in an act of violence that resulted in him being hurt enough to warrant a trip to the hospital to treat minor injuries. The instant outpouring of love and concern for someone most of these people only know on screen was incredible. It was awe-inspiring. And to me, it was also slightly terrifying.

   It had me reflecting on the risks these actors have taken on in opening up their internal lives as much as they do. These are intelligent people; I'm sure they've weighed the pros and cons. And yet they have done so much for others through their willingness to sacrifice a measure of privacy; in some cases, a significant measure.

   It finally came together for me. I'm not here to absorb what the world has to offer while I sit quietly in the corner making the acquaintance of a house pet. There's give and take, but even more than that, I'm worth something to others. I have something to give. I can learn to open up, and actually do so authentically, to those around me because I have something to say that they want to hear.

   I discovered I'm not actually an introvert; at least not in the classic definition. I began to put myself in social situations where I knew my boundaries would be tested. And every time, the payout has been incredible. And awe-inspiring. And also slightly terrifying.

The Singer

   I came across this video yesterday. The patient being operated on is professional singer Ambrož Bajec-Lapajne. He comments in his video description that the surgery was to remove a GBM tumor. This is the same kind of tumor and surgery that Randy had, although his was so close to the surface that they didn't have to wake him mid-surgery.

   I don't have much to share other than the video itself. I think Ambrož says it better than I can.

  

The Song

   A friend of mine has a toddler son who is enthralled with my iPad. He even has his own folder on it with age-appropriate games. I'm just as likely to be greeted with "Can I play on your iPad?" when I go to see them as I am with my name.

   I mentioned a while back to her that an old smartphone would work as a tablet for him and that way when I move he can keep some of the games we played together. I promised I'd take one of our old SG3s and wipe it out, then help her load it before I leave. It kind of got tucked away in the back of my mind and before I knew it, several months had passed.

   Tonight I remembered it and decided to get Randy's out since it had seen less use. I started to run a factory wipe on it when I realized I'd never looked at it to see if there was anything on the SD card like pictures or videos.

   There was a handful of pictures taken before he was hospitalized; mostly landscapes, a couple of some snow we'd had (he hated South Dakota winters - it was a testament to how much he cared for me that he stayed up here), and then they got a little...weird. I knew why. I'd seen him begin to struggle with technology in the hospital as he started to forget how to use it. They were all from the same day, September 9th, 2014. There were no more taken after this date.

   The pictures, however, weren't what caught my attention. There was a video. It was short and there was no visual content, only audio. It was the last 20 seconds of a song.

   I didn't recognize it immediately. I had to run it through Shazam, a song-identifying app. It came up with a result in a matter of seconds.

   It's Brad Paisley's "Who Needs Pictures."
  
   I checked my calendar. I believe the date is the day after I went to Fort Meade and took twenty pictures of our family and friends to hang on a board in his room, along with some autumn decor to brighten up the place. He still knew who I was and recognized the people in the photos. They were everyone he loved, everyone who loved him and had been there for him. I'm not sure if he heard the song on the radio and wanted me to hear it but forgot before he could share, but he remembered everyone. The song was meant for them as much as it was meant for me.

There's an old Kodak camera in my dresser drawer
I ran across it just this afternoon
And I realized that I don't ever use it anymore
In fact last time I did I think it was with you

When we were down in Cozumel
We had the whole beach to ourselves
And it's crazy now to think
That it's all there on that film
And I could take it to the store
To be developed, but what for
I can still see everything just fine
And who needs pictures with a memory like mine

Standin' there I couldn't help but think about
Everything that might be on that roll
I think it even has another trip we took
I guess that must've been at least three years ago

When we were down in Baton Rouge
And there wasn't much to do
So we drove into New Orleans every afternoon
And I swear that you would think
That it was only yesterday
'Cause I can still see everything just fine
Who needs pictures with a memory like mine

Somewhere in my closet
There's a cardboard box just sittin' on a shelf
It's full of faded memories
And it's been there ever since the night you left

Oh, just forgotten photographs
To remind me of the past
Oh, but I can still see everything just fine
Who needs pictures with a memory like mine
Yeah, who needs pictures with a memory like mine

The Note

   One year ago today, Robin Williams killed himself. Two days later, I was in a tiny cube of a doctor’s office at the Fort Meade VA Hospital being told by our oncologist that my partner’s brain tumor was growing rapidly out of control, and there was nothing left to be done. In that instant, we went from comparing treatment options to discussing “comfort.”

   I take a rather odd sense of pride in resisting celebrity worship. I try to remember that celebrities are humans, too, and most of the time I feel I’m rather successful at that, but Robin’s death hit me hard. He was my favorite actor, my favorite comedian.  Stand-up comedy had become such a central part of Randy’s and my coping mechanism. I can remember long, so very long, drives back home after a disappointing oncology visit when all we could do was turn on XM and listen. We laughed at the cancer that slowly ate away his soul with a sense of morbid inevitability – two pawns in the most depraved game of chess.

   What struck me the deepest after Robin’s death was not, I think, the truly devastating loss of a talented actor and comedian – he was much more, of course, but these were the only roles in which I’d ever get to know him – but it was the overwhelmingly uneducated reactions to depression and suicide as a whole I read on social media from people I thought knew better. Every little dig at Robin was, in my mind, a dig at me.

   I was diagnosed with chronic depression at the age of nineteen. Looking back, I realize up to that point I couldn’t remember not struggling with this black sea of hopelessness, even as a small child. The psychiatrist told me that this type of depression is typically manageable without medication, although some traumatic events in life may tilt the scale far enough that the chemicals in my brain are off and I need help balancing everything back out.

   This doesn’t mean I walk around moping all the time. Depression isn’t quite so transparent or easily defined. It has become much more of a daily check-in of my mental health, a sliding scale of “Am I more happy than sad today?” Right now I am; however, I knew last year when Randy died I would need help coping and took the precaution of adding medication to the counseling I was already receiving.

   The days before Randy died, he struggled to breathe. It’s known as the death rattle, an agonizing sound that becomes background noise while you wait for someone to die. The doctor will sit down with you and explain that, while it’s disturbing for some to hear it, the patient isn’t in any pain from the struggle. It is simply the body shutting down. They will offer to give the patient medication to soften the noise for your benefit, but that it potentially creates discomfort for them. I refused the medication.

   I wish I could say I’m really as brave as I pretended to be at that moment.

   Sitting by his bed and watching him gasp for air, the thought passed through my mind that I could end this for him. I could take a pillow and press it to his face and in a few moments it would be over and he would be at peace. So help me, I considered it. But I didn’t do it. I couldn’t. Instead I swabbed his mouth with the oil the nurses provide and read to him from the spot he’d marked in the last book he’d ever read, and I held vigil until he breathed his last.

   I’m in no place to judge anyone who makes that decision for themselves. It’s a discussion that Randy and I had, and I told him that no matter what he chose, I would stand by him. In the end he decided to go naturally, and I kept my promise.

   I know how it feels to want to check out. I know what it is like to get to that place, over and over, that is so deep and dark you’re not sure you’ll come back this time. I know what it is like to plan my death; I have written the note.

   I have also torn it up.

The Last Goodbye

   Randy’s mind was pretty far gone at the end. Yes, this was difficult and painful, but the getting there was more difficult than the being there. Being with him as he knew he was dying and every time he’d wake up with some new symptom was excruciating. In a way, we both found some measure of peace once the tumor took over and freed him from the emotional agony he was going through.

   At this point he was on a lot of pain meds but they didn’t want to dope him up unnecessarily, so they would give him the really strong stuff at bedtime. This knocked him out around 7 or 8, but often he would wake back up at 10 or 11 and be talkative. He didn’t make much sense but he would know who I was and that I was in the room with him, so I’d grab my laptop and sit on the floor mattress by his bed (they had him in a lowered bed because he was a fall risk when he could still move around) and we would just talk about nothing until midnight or later. I really treasured these late-night visits. We had minimal interruptions, he was chatty and sometimes silly, and I’d get online and read him supportive messages people had posted for him.

   Our last late-night visit was Saturday, November 8th. He was talking like he always did and I was chatting with a friend online and talking to him at the same time when out of the blue he stated, “Tomorrow is all we have left."

   I stopped typing and turned to look at him. “Why do we only have tomorrow?"

   “Tomorrow night."

   “We only have until tomorrow night?"

   “Yes."

   "Are you leaving me tomorrow night, Randy?"

   He seemed mildly confused by the question and paused for a moment before replying. “Yes?”

   “When?"

   “At dinnertime."

   I had discovered that when he took a while to answer and his speech was slow and deliberate, it was some glimmer of his real self fighting through. I usually left to go back home Sunday afternoons around dinnertime, but Randy no longer had an understanding of time. He had stopped eating several weeks prior so he didn’t even have that as a reference. It was highly unusual for him to refer to a specific time anymore. I wanted to stay an extra night but I didn’t have many days left I could take off from work so I stayed as late as I could on Sunday until an incoming snowstorm forced me to head home around 6 p.m.

   Several weeks before I had started telling him goodnight or that I’d see him later when I left to go back home. He had once become emotional and agitated when I said I was leaving and I didn’t want to cause him distress. He seemed to feel that goodnight meant I was going to be gone for a little while but that I would always come back to him. When I left this time, however, he was already sleeping and because of what he’d told me the night before, I did what I never did anymore. I said goodbye. Three days later he fell asleep and never woke up.

   I believe that Randy knew Sunday was the last time we would speak with each other but in his confusion he said he was leaving Sunday around dinnertime rather than I was, as I did every weekend. I believe that he tried to prepare me for what was to come.