When I was 12 or 13 years old my brother Jerome gave me a 35mm camera. It was a film camera, a Kowa Setr with a 50mm 1.8 lens. He said he bought it in Ethiopia when he was stationed there in the Army. I loved that camera. Because it was completely manual, I had to learn how to adjust the aperture and the shutter speed using the meter inside the camera. I learned photography at a young age at a level at which isn’t required today because the nearly all cameras are automatic.
I didn't realize it then, but learning to use a camera left me enthralled with time. A moment, captured by that camera, was everything to me. I started carrying a camera as much as possible. Today I still have thousands of negatives in the basement that comprise moments from my life through high school, college, and include family, friends, acquaintances, strangers, and events. I have thousands of digital photos stored on my laptop. Little did I know how important these photos would become.
2016 is widely regarded by most of you as a horrible year because of the celebrities we lost, the brilliant minds, and the utter viciousness and lack of decency displayed by our leading candidates during the presidential election cycle. It wasn’t helped by the blowouts experienced by our beloved Nebraska Cornhusker football team. Personally, 2016 was a tougher year in many ways than 2015, and as most of you know, in August 2015, I was dead for a bit.
I spent the first half of 2016 fighting severe headaches on a daily basis. They were bad enough that I had to stay in bed about one day a week. I used to be one of those people who thought that migraines were just a bad headache. I now know that they are crippling, making even the easiest, most commonplace activities we do like driving nearly impossible. In June, I was diagnosed with a brain injury.
At first I thought it was because of the blow to the head that had occurred during my heart attack. Over time I learned that I had two types of brain injury, the traumatic brain injury from the blow to the head, and an anoxic injury that occurred because my brain was without oxygen for too long while I was dead or being resuscitated or whatever happened during the event.
At our first meeting, my neurologist, Dr. Min Park, a wonderful young Korean woman who looks like she might be about 16 years old (what a cliche’), prescribed an anti seizure medicine, DivalProEx (Depakote), to help with the headaches. It did its job and since June I haven’t had to stay in bed one day a week. I surprised her by saying “neuroplasticity” (the ability to create new pathways in your brain) before she could, and we discussed how to move forward.
I met with a speech pathologist and began therapy to learn how to better control my headaches and how to handle fatigue. I found that I was ahead of the game because I had read several books on brains (neuroplasticity!) and had learned about mindfulness before I got to therapy. Mindfulness is a form of meditation that allows you to rest your mind, and in my case it helped me to get through days in which I was struggling. More on this will come later - it deserves its own place.
I took a vestibular test which is a test of the inner ear, and was subjected to balance and dizziness testing. I also took a hearing test. All of these tests came out fine, leading Heidi, my wife, and my youngest son Isaiah to realize that I am not hard of hearing, but I am mostly ignoring them.
By far the most fun test I took was a neuropsych evaluation. This consisted of a several hour session that included an examination of all components of cognitive function. I won't go into the details here, but instead save that for later articles about brains that I'm sure you will find so fascinating you will be on the edge of your seat in anticipation. Cognitive functions include things like verbal and written memory skills, ability to deal with complex problems, attention, vocabulary and motor control (this is only a partial list). The purpose of the evaluation was to determine the functional integrity of my brain.
The neuropsych evaluation was so much incredible fun that at one point I asked for a break, at which point I walked out of the examination room, sat down next to Heidi and cried, partially because of the sheer pain I was in, but mostly because of the frustration a person has when they’re trying so hard only to realize that their wheels are spinning in the mud.
A couple weeks later I met with a neuropsychologist to discover the results of my evaluation. I was given a report and he told where my brain was deficient. I'll save the full details of that for later as well, otherwise what possible reason will you have to come back and read about me throughout the off-season. I will tell you that the report contains (not making this up) several references to the fact that I swear a lot, that my voice is "loud and excitable" and that I made sarcastic comments to the examiner to the effect that she was purposefully being cruel to me. I was not aware they would include those comments in an official report that became part of my medical history, but I wasn’t about to deny them either. I am me, and I understand that being around me can be tough at times, and I will not apologize for it.
I was surprised when the neuropsychologist indicated that I showed signs of depression and apathy. He recommended I see a psychologist. I asked immediately how’d they’d come to the conclusion that I was depressed. The answer - that was what the tests showed. I’d read so many books on brains and analysis that I was at least informed enough to know that they are PRETTY DAMNED GOOD at what they’re analyzing, but I looked at the doctor and said, very clearly, “I don’t know why it shows I’m depressed. I have never been less depressed in my life. I’ve been dead. I know what death feels like, and I will tell you right now that it’s the most peaceful feeling one can ever experience. You cannot understand how much burden is lifted from you when you, as a human, have no fear of death anymore.”
He looked at me, emotionless, and said “if that’s the case, then perhaps you’re fine”.
No reaction whatsoever. The man is a pro.
I left and I thought that maybe it was my own stigma against psychologists that would keep me from seeing a shrink. There are still moments at which I wonder “Why did this happen to me?” I didn’t fit a single one of the items on the list of warnings that predicate heart attacks. I didn’t smoke. I didn’t have a family history. I don’t mind eating salad. I was active. What the hell?
And there was the problem of apathy. I’d already been dead. I now have a deeper understanding of life’s meaning - to love and let oneself be loved - than everyone else, so why work so hard? Why struggle so much? Who gives a damn about anything after that?
At some point in August, I decided that my goal would be to finish therapy and doctor visits by the end of the year. I would learn as much as possible from my speech pathologist, and then move on. As fall came my appointments with my speech pathologist were frequently canceled. At one point, I’d driven all the way to downtown Minneapolis only to be called before pulling into the hospital to be told that my speech pathologist wasn’t available, that she was ill. I wondered what the hell was going on.
I loved meeting with my speech pathologist. It amazed me that she could pull out a puzzle, and send my brain into sheer pain and frenzy, then tell me why exactly that happened and then teach me how to avoid it. In November I learned she was diagnosed with a frontal lobe brain tumor. She is a beautiful young woman, and by beautiful, I mean wonderful to be around, to talk to, and good at what she does. I hope like hell that she is okay (so Julie, if you happen to read this, thank you, and you need to be okay because there are more patients who will need your care).
In the last session I had with my neurologist, I expressed my wish to cut down on the anti seizure dosage. I felt that it was making me dull, that it was partially the cause of my apathy, and overall I don’t want to be taking these drugs. She agreed. Since then, I have reduced my dosage in half. I feel more alive, less dull, and less apathetic. I hope going forward I can eliminate the drug completely, but I haven’t taken that step yet.
Going into 2017, I still get fatigued by my job. Every day I get home around 4:30-5:00 pm, and the dog, Esther, has gotten so accustomed to me taking a nap that she gets upset and barks at me if I don’t go upstairs and lay down with her. The lack of energy is frustrating. The good news is that 10-minute naps are pretty wonderful and you can train yourself to fall asleep incredibly fast. Over the past year I’ve discovered that many of my memories are missing, and many more are a jumbled mess. I coached all three of my kids in soccer, and was a Scout leader for both my sons, yet I constantly confuse which kids played on which teams, and which went on various adventures in scouts.
The thousands of photos I’ve taken throughout my life have helped. I have gone back through many of them, and seeing them again has helped rebuild memories that weren’t really lost, but not connected. Seeing them again, I remember taking many of them, and it reconnects the context of what was happening at the time. There are times my wife and kids will talk about a trip we took when the kids were young and I will have no memory of it.
This past weekend Heidi and Isaiah were talking about when we brought our cat, Max, the smartest and most laid back cat in the world, back from western Nebraska. He had a cat box in the back, and when he used it, the whole car stank.
“Was I there? Did I go?”, I asked.
“Yes, you were there”, Heidi responded. “That was when you always drove so I could entertain the kids.”
I formed a mental image of my kids sitting three in a row in the back seat of our Saturn Vue, while Heidi sat in the front next to me, turning around to make them laugh. Then I pictured Max climbing into the back to poop, and the kids wrinkling their noses at the smell. I’m not exactly sure what their ages were, so I guessed, and I formed the mental images of them from the photos I’d taken of them when they were young.
I’d re-created a memory, and then I put it into what I thought was the proper context of place and time in my head. Maybe it wasn’t true to form. Maybe it wasn’t a real memory. But it’s what I have, and I’ll take it and move forward from there.