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.