Normally, I like to kid around as much as I can when I’m writing these blog posts, but what I want to talk about today doesn’t have a lot of humorous aspects baked into it. The reason I want to talk about it is because I think I probably have a fairly unique perspective on living life after having a stroke – not a ton of people have had a major stroke and come out on the other side in good enough shape to talk about it. I thought it might make for an interesting read (or not😊).

I had my stroke on August 3, 2006. Specifically, it was on a Thursday night around 10 o’clock while I was sitting outside on our deck, 10-20 minutes after we’d come home from visiting my sister and brother-in-law. Thank God it didn’t happen while we were still driving home! When it struck, my body went completely rigid and straight and it must’ve looked like I was “planking”, I clamped my teeth down on my tongue and it felt like I bit it in half. Luckily, Jen hadn’t gone to bed yet, so she was able to call 911 for help. I’m positive that I wouldn’t be here today if that hadn’t happened. I need to remember that the next time we have a disagreement or argument!

Anyway, fast forward a couple days – in that time I was hospitalized (obviously), was in and out of consciousness for the first several hours, got operated on to have the blood clot in my brain stem broken up and apparently spent a day or so in a coma (from what I hear). When I finally came to on Saturday, I was still pretty out of it.

The first thing I noticed about my condition was that I couldn’t move a single thing in my body, except for my eyes up and down. It was pretty awful. Other things that were pretty awful were my inability to see straight or focus on anything and the entire left side of my body seemed to be completely numb. Talk about WTH?! But the most awful thing about my condition that I quickly discovered was my inability to speak. If I can’t talk, I can’t communicate. For me, and probably most people, communication is high on the list of things you wanna do, like breathing air or eating food.

Not long after that, Dr. Zazulia, who has since become a friend of ours, came into the room and helped me with that. She wanted to determine if I was “in there”, cognitively speaking. To do that, she asked me some simple Yes/No questions. If the answer was “Yes” I was to look up, I was to look down for “No”. I’ll never forget one of the questions: ‘Is George Bush President of the United States?’ That’s how long ago it was!

I don’t remember now how long it was, maybe a couple weeks (?), but eventually I could voluntarily blink my eyes. We used that to work out a way for me to “speak” so I could get my thoughts out. Basically, whoever was speaking for me would (patiently) recite the letters of alphabet, then I would blink my eyes two or more times when the correct letter was reached. As you can imagine, it took quite a while to say even a simple word like ‘C-A-T’!. Soon after that, we cut the alphabet in half (letters A-M, then letters N-Z) and then I would indicate with eyeblinks whether the letter I wanted was in the 1^st half or 2^nd half. This sped things up considerably, but it was still pretty cumbersome and tedious for everyone involved.

Sometime after we got home in January of 2007, Jen and I came up with a way to speed this up even further with this grid of characters:

Spelling grid
Vowel:             a, e, i, o, u, y
1^st line:            r, s, t, w, d, f, h
2^nd line:          p, b, c, l, g, m, n
3^rd line:           j, k, q, v, x, z
Number:         0, 1, 2, 3, 4, 5, 6, 7, 8, 9

The way it works: To get her attention when I want to say something, I start blinking. She then says, ‘Vowel, 1^st line, 2^nd line, 3^rd line, Number?’ and then I start blinking if the character I want is on that line. She then recites the characters on that line. When she gets to the one I want, I start blinking again.

Examples:
          ME:    blink-blink-blink
          JEN: ‘Do you wanna say something?’
          ME:    blink-blink-blink
          (The letter I want is “c”.):  
JEN: ‘Vowel, 1^st line, 2^nd line’
ME:  blink-blink-blink
JEN: ‘p, b, c’
ME:    blink-blink-blink
JEN: ‘OK, c’
          (The digit I want is “4”.):
JEN: ‘Vowel, 1^st line, 2^nd line, 3^rd line, number’
ME:    blink-blink-blink
JEN: ‘0, 1, 2, 3, 4’
ME:    blink-blink-blink
JEN: ‘OK, 4’

From doing this a lot over the years, we’ve gotten pretty fast. She can usually guess what word I’m spelling after a letter or two. Like most married couples that have been together a long time, she can even finish my sentences for me quite a bit! It saves us both a lot of time.

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Since I’m talking about this time period, I wanna change gears and make a hard left, and talk a little bit about my mental health going on then. In a nutshell, it wasn’t very good. From the end of 2006, all of 2007 and for most of 2008, I was basically a basket case between the ears. Any emotional strength I may have had leading up to my stroke went out to lunch for a couple years afterwards. I could’ve used an exorcism. I was “Undiagnosed – but something ain’t right.”

I spent almost six months in three different hospitals. In that time, I bet I interacted with 50, 100, 200, who knows how many (?) doctors, nurses, therapists and techs. I have a huge amount of respect and admiration for healthcare workers. Almost all of them are great people – nurturing, knowledgeable and empathetic. But like in any profession, you’ll eventually encounter a few not-so-great people. For the entire time I was there, Jen was always there with me, 24 hours a day. Even though I was the one in the hospital bed, I  think of that time as: ‘When we were in the hospital.’ Just because she’s my wife and I love her and just because she’ll most likely read this, so I better say something nice about her, I don’t think I’ll ever be able to express enough just how much I appreciated that.

In addition to Jen always being there, someone from my family came every day, for six months, to keep us both company and to give her some relief. Even though I was off on the ledge of a tall building somewhere in my mind most of the time back then, I also loved and appreciated that and could never thank them enough. I shudder to think how some people have to spend any amount of time in the hospital completely alone because they have no one in their lives for whatever reason. Our hearts went and still do go out to them.

One time, my brother was there, and Jen left for a while to go get dinner or something – so we were alone. He knew how to communicate with me, and I wanted to make some humorous or smart-ass comment, even though humor was very hard to find back then. I wanted to say to him this line by W.C. Fields: ‘All things being equal, I’d rather be in Philadelphia.’ But what came out was: ‘All things being equal, I’d rather be dead.’ I don’t really know why I said that. I guess I had so many dark, depressed and desperate thoughts swimming around in my head and they finally found their way out. Suicidal thoughts frequently made themselves a home in my mind back then. Not to be melodramatic, but I felt like I was in a deep hole, and I couldn’t climb out. Even so, it wasn’t like I would ever act on any of those impulses and actually hurt myself – for a lot of reasons. For one, I’m kind of a wimp and actually causing myself pain completely flies in the face of my “no suffering or discomfort” policy, and I’m allergic to pain. Secondly, even if I wanted to do something drastic like kill myself, I couldn’t move a muscle to do it myself, so I would’ve somehow had to talk someone into doing the deed. Dr. Kevorkian was already dead so that window was closed. Looking back, it was probably a good thing I was a quadriplegic, just in case I got any wild ideas.

Back to my brother, after I said what I said to him, he got as angry as I’ve ever seen him get. That is to say, he didn’t seem very angry at all. He’s pretty even-tempered most of the time, I probably spiked his blood pressure up to 145/95. How he responded to me was something like, ‘Are you asking me to pass that on to Jen? I don’t think she’ll like it.’ But what he meant was, ‘What the F-word is she supposed to do with that, A-hole? You’re being F-wording selfish and not thinking about anyone else past the tip of your nose!’ He was right. I was letting my rock-bottom emotions cloud my judgement. Talking with my brother that day, and even though I still felt pretty lousy for a couple more years, that marked the end of my suicidal thoughts.

After we came home, that was when the real fun started. I was basically a shell of myself and wouldn’t start feeling right again until about 2009. During that period Jen was pretty much alone. She deserves all the credit for keeping it all together – her, me, us, our household, her job – everything. Needless to say, I owe her the world for pulling us through that. After those years had passed and I slowly emerged from my funk, we got busy figuring out how to navigate this new life that neither of us asked for.

Well, lookie there, I managed to run this post pretty long, sorry about that.  Once again, I blew right through my 1000-word “STOP” sign, I don’t think I even tapped the brakes this time. Maybe I oughtta start using a YIELD sign, you think?

Thanks for reading,

– Jim