It's nearly impossible to understand what it feels like to have a stroke unless you've had one. For a caregiver like myself, that understanding seemed crucial. If I could imagine how my husband felt, I reasoned, then I'd be more likely to be patient and supportive.
I thought I understood a little of what he was going through because 23 years earlier I'd had my own neurological problem, albeit a relatively small one. Just as I turned 40 and was lamenting my impending facial decline, I came down with a case of Bell's Palsy.
For three months it felt like an elephant had a foot firmly planted between my left eye and my throat. My face drooped, I had to tape my eye closed at night, and blinking required a distorted twisting motion from the good side to the paralyzed side. I slurred all words that involved my lips and tongue, and had to work hard not to spew out a three-foot stream of saliva every time I opened my mouth to eat. Drooling was my new normal, and swallowing was a challenging one-sided deal.
Needless to say, it put a damper on my social life. Just like with stroke, people tend to focus on what they see in a person. Many ask questions, or look at you sideways, sometimes with a pitying look. Your identity, and the one you want to bring back as the strong person, seem to vanish under the shadow of how others look at you.
Social aspects aside, though, I also found a physical commonality between my husband's stroke and my Bell's Palsy. Think of it this way: If I told you to concentrate on one of your healthy hands, and to focus on the flow of blood there, you'd feel something. That's because your brain is sending nerve signals along a pathway all the way down to your muscles. With stroke, just as it was with my Bell's Palsy, that pathway disintegrates. A brain signal goes nowhere. Dead end. I had no idea where my cheek was just as my husband had no idea where his right hand was.
So, when my husband woke up one day and mentally found that hand, we both knew it was cause for celebration. His brain was working on something. It was healing.
A discombobulated brain is a funky thing. Take, for example, what happens to emotions and personality for many people after stroke. In my husband's case, he went from having a strong, confident voice to one that sounded different to both of us. Initially, I thought this was because he had suffered an emotional trauma, and gosh, who wouldn't feel insecure about being half-paralyzed?
One thing we learned is that emotions are experienced throughout the brain, so of course a stroke impacts sensations and reactions. Just picture one of those water-filled globes you find at a souvenir shop. Shake it up and watch an idyllic scene turn into a blurry blizzard. The little plastic village you previously saw becomes a distant memory hidden behind particles flitting about in random directions.
Although my husband and I are both grateful that his emotions are now back to where they were pre-stroke, it wasn't like that in the beginning. For months after the onset, the wires seemed to be crossed. It reminded me of my childhood when I'd laugh inappropriately after being told solemn news.
Something as simple as a kiss made him burst out in hysterical laughter. When I asked him if it seemed funny, he said no, just that things that felt good made him laugh. On one visit to a restaurant that didn't have the steamed veggies he requested for his side dish, I brought him back a salad and he cried. I asked him about that feeling, too, and he explained that eating any green stuff was just a reminder of yet another joy taken away from him.
Thankfully, recovering from stroke is an ongoing process. If you're hopeful, you'll watch for the signs of change. If you're imaginative, you'll try to understand what it feels like from the stroke survivor's point of view. And, if you have a magnifying glass, a really super-powerful one, you can actually spot the subtle changes that are well worth celebrating.
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