Dead silence. Followed by gasps of shock from the group surrounding my husband, Guy.
As Guy was leaving the coffee shop, someone flicked the lights on and off. We’ve all heard flashing lights can trigger seizures in certain people.
Guy called out,” Seizure later!” My hubby is quick to be witty. That’s just him.
The problem was someone in the coffee shop had suffered a seizure recently. People were sensitive. After the awkward silence, Guy said, “It’s okay. I can say that… I have a seizure disorder too. I’ve got the brain surgery to prove it!”
We were newlyweds when I first witnessed Guy have a grand mal seizure. I thought I poisoned him with my cooking. Seizures on several occasions in his youth were all dismissed as due to stress or concussions. This time, a CT scan was done. It was called a CAT scan back then. When Guy asked the technician if she saw any cats, he expected laughter. Instead, she was extremely serious.
”No, you have to get the results from your doctor.”
Guy sensed she saw something not-so-good on the scan. He bought life insurance the next day.
The diagnosis was a large AVM–Arterio-Venous Malformation–in the parietal lobe of the brain. A tangled web of arteries and veins. With a 2 % cumulative risk of rupturing each year, causing stroke or death. In other words, by age 50, there was a 100% chance of rupture. The AVM was too deep in the brain to risk surgery.
Instead, different approaches were undertaken. Crazy glue was injected into the AVM with limited success. Twice. The doctors weren’t able to inject into the arteries on their third attempt.
Gamma Knife radiosurgery was done in Toronto at a time when only five other centres world-wide performed this procedure. Stockholm, Paris, Buenos Aires, Sheffield and Pittsburgh. A test done two years later gave us disappointing results. Again, there was only minimal effect on the AVM.
Since the procedure was the equivalent of being under an x-ray machine for two weeks straight, Guy decided “enough was enough”. No more interventions. He didn’t want to risk getting brain cancer.
What’s important is Guy never let his diagnosis get him down. He was a toolmaker at the time of his diagnosis. He absolutely loved his field of work. But, being in a shop around machines was a dangerous place to have a seizure. He returned to school to become a mechanical technologist. Having a seizure at a desk was far safer.
Guy’s driving license was revoked for a year at a time, twice, because of seizures. He couldn’t drive our daughters anywhere. But, he took them for stroller rides way before it was trendy for fathers to be so involved in parenting. He carried the girls–piggyback rides– if they grew tired when walking with him.
Guy never had the “poor, poor pitiful me” attitude. He figured everyone has “something”. This was just the way things were. He didn’t dwell on it. He didn’t let it define him. He saw it as a bend in the road. The road took a turn but it kept on going. Even if he couldn’t drive on it at the time. He’d walk the route and carry on anyways.
The AVM caused weakness in his left leg which led to falls. But, he’d just tell people he was clumsy. He’ll take anticonvulsants lifelong to prevent seizures.
Twenty years after the last procedure, another MRI was performed after an exacerbation of symptoms. The results were truly surprising. The blood flow through the AVM was completely gone. The radiation had apparently kicked in after all these years. Job well done!
The damage from the AVM pressing on the brain remains but there’s no further risk of stroke or death. The symptoms Guy’d been experiencing were dose-related from his anticonvulsants.
A weight had been lifted. Guy canceled additional long-term disability insurance that same day.
People often say,” When life hands you lemons, make lemonade.” Guy’s way of thinking was more along the lines of,” When life hands you lemons, add tequila!” He excelled at his new career path. He was an inventor. How cool is that? Lately, Guy’s acquired a few machines in the garage to keep the “toolmaker in him” happy. Life is great!
How are you handling the lemons in your life?