Card Punched?

My last bike tour ended with a seizure; this tour is beginning with one. I normally have tonic-clonic seizures–I will gaze unresponsively, temporarily forget who I am, where I am, and what I’m doing. Or, I’ll be talking to someone, and my brain hears gobbly-gook, or I’ll speak gibberish.

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I think I was 12 the last time my knees looked like this. 🙂

Occasionally, usually with gaps of 1-2 years, I’ll have a grand mal seizure. This is what most people think is epilepsy. Full or partial body convulsing. Fortunately, I know when I’m about to have a grand mal; I feel odd and yellow-y. It gives me a few seconds to stop and prepare. This time, I was talking to someone who I didn’t feel comfortable seizing in front of, the tremors started, and I tried to make a run for a more private location. Clearly, I wasn’t thinking, you can’t seize and run. LOL. I only managed a few strides before my legs gave out. I vaguely recall landing on my knees and elbow and trying to crawl. Gratefully it was quick, and I didn’t lose consciousness.

It is an intensely personal and intimate experience. I feel very vulnerable; my body and mind are not under my control. Afterward my body feels like I ran a marathon and my mind is foggy and confused. I sob, overwhelmed with confusion and completely disorientated emotionally and physically. It takes about 30 minutes for the fog to lift, and hours to start thinking clearly. It can take days to recover energetically.

Last seizure I ended up with a concussion and two sprained wrists, that’s the reason I had to abandon the tour. If it wasn’t for the injury, I could have taken a few days off and resumed. This time gratefully, the only injuries were deep abrasions on my ankles, knees, elbows, and muscle soreness. I look like a four old who took a tumble off her scooter. Interestingly, my leg muscles feel as if I had run hills. It’s bizarre, and oddly fascinating how my body feels post seizure.

I’m hoping that my seizure pattern stays the course, and I won’t be due for another one for at least another year. Ridiculous as this might seem, the fear of having a seizure that was hovering in my thoughts, has lightened. It’s not logical, but I choose to believe I’ve had my seizure card punched, and I’m done for the year. I’ll still be careful, watch my energy levels, and take the necessary precautions, but part of me feels a bit liberated. Got that out of the way.

It brought to light how much I do worry and think about it, and how self-conscious I am. I had a grand-mal in front of someone once who didn’t respect my privacy and wasn’t trustworthy. It was a bad one, and I was out of it for a while. Fortunately I was in a doctor’s office. The last thing I remember is this person shouting, her mouth gaping open like a bass going for a fly, as the waves started to take over and I went unconscious. The Uruguayan healthcare professionals assumed she was a family member, didn’t realize she was a coworker and disclosed private information to her. She, in turn, acted as the town crier to my coworkers and employer. She recounted the event in colorful detail as if it was a source of entertainment at social gatherings.

It was a violation and left a lasting impression. It’s bad enough to have to manage your life as an epileptic, but, adding the stress of someone witnessing you in a vulnerable, intimate moment and abusing it, adds another complicated emotional layer. Before that experience, people had always been kind, and it never occurred to me that could be an issue.

Fortunately, it’s not in my nature to cower. Though it’s a shadow roaming around in the back of my head, the part of me that is feisty and determined is more powerful. The emotions are jumbled, but the determination to live life fully usually prevails.

I wasn’t going to break out the gray or purple ribbons for this tour: gray for brain tumor and purple for epilepsy, but I am now. My last trip it helped to educate people about brain tumors and epilepsy as well as connect with people who were experiencing it personally. I don’t proselytize– if someone asks about the ribbon, I’ll share my story. Interestingly, the people who ask about the ribbons almost always had someone in their life who were recently diagnosed with one or the other, and it felt good to help ease their fears and offer them support. It’s hard to understand how it impacts your life until you’re in the thick of it. It helps me see that although I’ll never be who I was BT (before tumor/brain injury), I can see the progress I’ve made.

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Gray ribbon for brain tumors.

I’m excited and ready for the trip to begin. I’ll take time to make up some ribbons. Janet’s Roadtrek has returned from the shop and is ready to go. Everything, despite the obstacles, is coming together. Today we’ll pack and prep for tomorrow’s departure. Woohoo.

Long Overdue Update

I’ve put off this update for so long that it’s awkward and embarrassing. The longer I put it off, the more uncomfortable and monumental the task felt. At first it was because I was crushed and disappointed, it felt like a failure, a lack of fortitude and determination.

In reality, however, it was necessary.

Back in December, just shy of the New Mexico border on I-10, I had a seizure. Fortunately, I had zipped up the canine caboose when I turned onto the interstate. Another stroke of luck: I felt funny and stopped. While straddling the bike, I fell back and smacked my head hard enough to crack my helmet. The result was a mild concussion and two sprained wrists.

It is unnerving that despite the steady stream of traffic on the road, no one stopped to help.

(Safety plug: always wear your helmet! My neurologist has a patient who lost his balance while waiting at a stop light, hit his head on the curb, and is in a coma.)

Luckily I had friends who lived a couple of hours away and came to the rescue. Lucky unlucky that it happened where and when it did.

It rattles me to think what could have happened. What if I had been on a narrow shoulder-less road if the caboose door hadn’t been zipped, if it had happened on a blind curve? Lucky unlucky. Before I start out again, I need to be confident that my seizures are being managed.

What makes it especially frustrating — the most challenging part of the trip was over. I was leaving behind the California passes, the Arizona 100 degree heatwave and was feeling fit and comfortable with my steady tortoise-like pace. I had hit my stride, the dogs and I had our routine down, and we were enjoying life on the road.

I try to remember that I managed to cover 863 miles with an elevation gain of 21,086 ft, carrying and towing 150 lbs+ of dog and cargo.

Here’s to next autumn, 863 miles down and 1,850 to go.

P.S.  In January 2015 I bought a Lance 2295 travel trailer with the intention of traveling the country and audition potential towns to set my roots.  The photo was taken when I was a volunteer caretaker at the Nature Conservancy’s Patagonia-Sonoita Creek Preserve.  More on my travels circumnavigating the US and Canada to come.  One and a half years later I landed back in Patagonia, Arizona.  There’s something about Patagonia that keeps calling me back.