Opening the Door

Today marks the tenth anniversary of the day I failed to die. I call December 12^th my “life day” and have celebrated it, in my own quiet way, each and every year.

But “life day” is a phrase that fails to capture the full import of that time: it speaks of victory, of a foe vanquished, of death avoided (well, to the extent we all avoid it.)

But that’s not the whole story.

Yes, my life day is the day I cheated death. But it’s also the day the person I once was started to die.

The details of that day ten years ago are probably about as interesting as any conversation where one person regales another with the trials and tribulations of their health, so I’ll cut it to the bare minimum:

Endoscopic sinus surgery

Hyponatremia

Cerebral edema

Seizure

Aspiration pneumonia

Hypoxemia

Coma

It was a rough time. So were the following ten years. There were days when I thought I wouldn’t make it. But after all these years, and the unending love and support of my family, one thing is clear:

I’m still here.

While the things that happened over the course of those ten years is a story I’d like to share, this is not the time for that.

Instead, now is the time to let the people in my life know why I disappeared, and how I’ve changed.

Why did I disappear? Shame, mostly.  It started off as nothing more than taking a breather after being laid off at work. I was so tired. But when days turned into weeks, and weeks into months, and I was no better (and in many ways getting worse), it was clear that the life I’d had was slipping away from me.

We all have pride about some aspects of ourselves. For me, the first thing was my mind. I may not have always been the smartest person in the room, but I could usually follow others’ thinking, and even make relevant contributions occasionally.

I was also proud of my ability to keep up with the pace of two fast-moving startups, even if I did have a decade (or two) on most of my coworkers. At my last job, they called me Captain Obvious, which might sound like a putdown. However, I think it was a nod to the fact that this old guy had seen more than his fair share of technology that had gone pear-shaped, and could draw on that knowledge to help the latest technology fail in new and exciting ways instead of old and boring ones.

When it became obvious that my mind was no longer as clear as before, and that the pace at which I could now do things was slow, and spotty at best, I was left with one cold hard fact:

I could never go back to my old life.

And I felt shame. 

Shame at no longer being able to do what I had once done. Shame at feeling like a burden to my family instead of a provider. Shame that everyone I had worked with would look down at me with pity—or worse—the blankness one reserves for those things (and yes, people) that are not worthy of notice.

Irrelevant.

So now, ten years later, what is my life like?

Well, I look the same, if a bit thinner and grayer. On good days, I can mostly move in the ways that an average 57-year-old can move. I did have a neuropsychological evaluation that observed some degradation in my manual dexterity, but it’s something I’ve never really noticed. I sound the same. I still have that same odd sense of humor. I have my memories from before and (mostly) after.

But there are differences.

I have a hard time learning new things. I’ve tried my hand at some new technological stuff (Arduino, Raspberry Pi, AWS) and find I easily get confused. I used to be able to take a new technology and figure it out with a minimum of help, or read through all the available documentation one day, and dive right into using that knowledge the next. No longer.

My ability to pay attention for any period of time is gone. Many days seem to consist of breakfast, planning what I want to do that day, and then somehow it’s now 5pm and I’ve accomplished nothing. These days are blurs; sometimes it’s a week or more before the blurs stop. It used to be months.

I can still read, but it’s difficult. I’ve been subscribed to several magazines since my teenage years, and used to devour them the day they came in the mail. Now, I have ten years worth of these magazines sitting mostly unread. It takes so long to read them, and moving from article to article disrupts my train of thought, so I often just set the magazine down, and never pick it back up. I probably should throw them away and cancel my subscriptions, but I just can’t bring myself to do that.

Writing is also hard. I’ve been working on this post since late October, and it’s gone through more drafts than I can count. The days of firing off a first draft, letting it sit for a day or two, and then quickly polishing it seem to be gone. Oh, and my spelling, which used to be quite good, now sucks. Words that look “wrong” are actually spelled correctly, and vice-versa. Oddly enough, the one spelling problem I had before (dyslexia regarding the ordering of “ie” and “ei” in certain words) is markedly improved. Go figure.

I occasionally get lost in familiar surroundings. I worked in the RTP area for about twenty years, and a couple years ago got so lost, moving along streets I’d traveled hundreds of times before, that I had to use a GPS to get home. I always had an innate sense of direction, but the events of 2006 took that from me. Thankfully, over this past year I seem to be doing a bit better. That said, I try not to drive if I don’t have to, and have to carefully plan out the route if I do. Virtually driving the route to a new place in Street View helps, and there’s always Waze if I get lost.

I get overwhelmed easily. Large crowds, noisy places, lots of people talking all at once, and things moving quickly are all very disorienting and exhausting. My wife and I go grocery shopping once a week. It’s something I have to work myself up to doing. Once I tried to help bag our groceries as the cashier was ringing them up. I couldn’t do it; everything was moving too fast for me, and I just froze. Sometimes it’s not too bad; other times, I’ll excuse myself and head to the restroom to get away from all the chaos for a moment.

At first, I was sleeping maybe two or three hours a night, and never felt truly rested. It turned out that I was no longer getting any REM sleep. Now, with the help of a neuropsychiatric specialist, I can usually count on 4-6 hours most nights, including some sweet, sweet Rapid Eye Movement. Better living through chemistry, indeed.

My digestion has been pretty much destroyed. I used to be able to eat nearly anything, and really enjoyed experiencing different foods. Now I’m reduced to a diet where I eat the same three meals every single day. I can eat four proteins, six vegetables, and one grain. Going much beyond that gives me terrible gut pain, food malabsorption, skin rashes, and itchy, open sores. I might be able to be “bad” for a little while, but eventually my dietary indiscretions come back to haunt me. Sometimes I also have severe joint pain to the extent that it’s nearly impossible to walk. Strong emotions can send me down this path as well.

I’ve had frightening levels of depression. It was so bad at one point before I’d lost my job that, every day, I had to talk myself past the four-story tall open atrium at the office to keep myself from jumping. I made all sorts of suicide plans. The only thing keeping me from following through was knowing how it would hurt my family. I still feel down from time to time, but have never sunk to those depths again, thankfully.

I have good days, and I have bad days. Have you ever tried to open a jar with a lid that was just a little too tight, and the jar was just a little too big for you to get a solid grip on it? And you were sure that you’d be able to open it with no problem at all, if only your hands were just a little bit bigger? That’s my brain on a bad day. On bad days, I know what I need to do, and I even know how to do it, but I just can’t quite make it happen. On bad days I’ve learned to just let go, and try again tomorrow. Fighting my brain on bad days just makes it worse. I used to have a lot more bad days than good; now it’s about even.

I’m more emotionally vulnerable. It’s like I’m an open wound. Any emotion I’m exposed to immediately overwhelms me. Joy, sadness, hate, anger—they all affect me deeply. This past election with all its hate and divisiveness was a misery; its aftermath has been personally devastating. I feel the impact of every hateful word or act just as much as if someone had punched me in the gut. Sometimes songs or everyday moments express emotions that are just too powerful for me. I cry a lot more.

Deb rightfully points out that there is also an upside here.  I have more empathy for strangers. I have a softer heart. I love more deeply. If there’s a blessing to everything that’s happened, it is this.

So that’s what’s been going on. I have a life, but it is a small, quiet one. I mostly stay at home, concentrate on trying to improve my digestion, and take the occasional walk (when my joints aren’t overly cranky). I do laundry, load and unload the dishwasher, and try to search for meaning in my life. Part of me finds the monotony soul-deadening, but the other part of me knows that routine is what grounds me. Centers me. I hate it, but I need it.

To be clear, I have not written this looking for sympathy. I have written this to state openly and clearly that this is who I am now, and that, while I despise my new normal, I will no longer be ashamed of it.

My name is Ed, and I have a brain injury.