Today is April first, and in true New England fashion a Nor’easter is headed our way. Thousands of feet of snow (or something) are predicted for a few miles west of me, while flooding rains and damaging winds will be having their way with my city home and my little, barely-framed future home on the tip of Cape Cod.
Nevertheless, we had a couple of days of nicer weather over the weekend, cool but at least sunny, a break from the never-ending rain.
The daffodils are coming up.
There are a few, tentative leaves budding on the trees.
The college students are wearing shorts and T-shirts with their wool hats and boots.
All of this can only mean that spring is on the way, and with spring comes my annual wish to ride a bike.
It was about six years ago now that I took my bike out and ended up on the pavement. Twice. I could turn left, but when I turned right I’d fall over. Something was funny with the steering, or the wheel, maybe. I took it to the bike store.
“There’s something wrong when I try to turn right.”
“It looks fine to me,” said the expert, “but it’s really old and heavy.” He sized me up. “Maybe you need a lighter bike?”
So I bought a very expensive, folding bike that I could easily put in the back of the car to ride anywhere. It also had smaller tires that were kinder to my stiff, knee replacement leg when getting off and on.
After two rides and two falls I went back.
“This one’s pulling right, too.”
He looked at me, hopped on it and took it for a ride. He adjusted a few things and handed it back to me.
“Here you go.” He didn’t make eye contact.
I thanked him and went home. The next day I took it out for a ride, turned right and fell.
I was too damned old to be falling off bikes, even then. I called a friend and asked her to come over and try the bike. She did. She did not fall.
Hmmm.
I bought an adult-sized trike. I did not fall over, nor could I ride it. It pulled so hard to the right, ironically, that neither I, my son, his girlfriend, nor my bike-riding friend could do anything on it but turn right.
It had come all the way from Italy. I took it to the bike repair place and wheeled it in.
“Let me guess,” said the guy, “it pulls to the right?”
“But not just for me!”
“Uh huh,” he said.
I’d been going to a neurologist regularly for significant migraines, and at the next visit I told him about the issue.
“Did you stop all caffeinated beverages like I told you to?”
“Yes, for a few months, but I didn’t feel any better so I started again. I told you I didn’t want to stop drinking tea, and that I needed other solutions. And I seriously doubt tea is making me fall off of bikes.”
He had me close my eyes and march in place for 60 seconds. When I stopped and opened my eyes, I’d turned 120 degrees to my right.
‘Well that seems bad,” I said.
He shrugged. “I’ve seen worse. If you’re not going to stop caffeine and try to lose some weight, I don't know what more I can do for you.”
I asked him, in all seriousness, what exactly he’d done for me so far to make the “more” in that sentence count.
There were three more neurologists after him, all of whom, thanks to their advanced training and positions at Man’s Greatest Hospital, diagnosed me as being female, overweight and a caffeine taker. One of them also suspected I was eating onions.
Firing neurologists is kind of one of my hobbies.
I decided to try one more at the urging of my doctor, who recommended him as “not an asshole.”
This guy was different. He ordered an MRI, and when I got out of the machine I couldn’t walk due to the intense spinning. I had to wall-crawl to the lobby to sit and wait for the magnetic vertigo to fade.
“Good news!” the new guy told me. The MRI showed I did not have a hole in my skull behind my ear. Having never considered this, it was a mild celebration.
Had the MRI made me dizzy, he wanted to know?
He asked me if I typically had extreme side effects with medications. I did. He asked me if I’d been exhausted lately. I had been, like for years. He asked if I’d been waking with severe muscle spasms and cramping. I had. He asked me about the migraines, and if they were always the same. They were not. Could I be a passenger in a car without feeling sick? Oh god no. Boat? Nope. What happened on planes? Two or three days of feeling like I was hurtling forward. Any nausea? Frequently. And then a few episodes of passing out cold, and flashing lights behind my eyes, and other such merriment.
He secured me into a NASA-style chair and big goggles and hurled me around in the dark. He put me on a tilt table and shot hot and cold water into my ears. He strapped me into a belt suspended from the ceiling and told me to stand on a painted platform that moved in sudden, random patterns. There was a hole punched through the backdrop, and when I asked him what had happened he looked sideways and said, “Oh, an intern didn’t do very well when he wanted to experience the exam.” I sat through a couple of hours of hearing tests on torturous plastic chairs designed to force confessions out of prisoners of war.
“We need to talk about your definition of “not an asshole,” I said to my doctor during a check-in phone call.
Then came the big meeting.
You have Vestibular Migraine Disease. The muscle spasms were from your lizard brain1 thinking you’re falling all the time, and tensing without your regular brain2 knowing about it. The vertigo and nausea is the migraine, though so are the headaches. All those other things are typical symptoms, though you’re lucky—you’ve skipped the major anxiety some people get with this.
“Oh, I’m feeling super lucky right now,” I said, “But here’s what I want to know. Can I ride a bicycle?”
He looked at me. “How do you feel about falling?”
“Not great.”
“Then no, I wouldn’t recommend it. Because that’s what you’ll mostly do.”
After many months of medication trials, this time with a guy who understood that even quarter-doses might affect me strongly, things stabilized, and with a couple of years of vestibular physical therapy under my belt I can ride in a car and on a plane with just a little pre-dosing. I no longer fall out of bed while in a deep sleep or get the spins when I lie down. I no longer need a cane, except under rare circumstance, or fall when walking, and I’ve learned which environments are likely to set off my wonky gyroscope3 and cause trouble (I’m looking at you Pena Palace, with your dark and light, cool and hot, winding, curving, arching stone treachery).
But I still can’t ride a bike.
The trike was unfixable, apparently. The Italians did not refund my money.
I still have the dream of biking around Provincetown, stopping to grab an iced coffee as I watch the boats in the harbor.
Insurance would no longer cover me going to the guy who helped me. My hearing was too good, and he specialized in aural-neurology. On our last appointment he wrote up several pages of notes for my doctor to help with medication and other treatment suggestions moving forward.
“I notice you haven’t told me to stop having caffeine.” I said to him, “That’s pretty much all the other guys talked about.”
He looked at me. “Does caffeine make you feel worse?”
“No,” I answered.
“Does anything make you feel worse?”
“Alcohol.”
“Stop having alcohol,” he said.
I guess I can walk to the coffee shop.
Or maybe I’ll try another trike someday. If it ever stops raining.
Morning Teaistisms
Back to reality. The temperature’s dropping like Truth Social stock, and dreams of summer walks on the beach will have to wait while the scarves, boots, and heavy rain gear come back out.
Might as well go all in and pour some Winter Spice tea from Fava. It’s got dried oranges, sweet almonds, cardamom and star anise, but isn’t terribly bossy in flavor. Perfect for a cold, not-really-spring night while willing the warm weather to arrive.
That’s paraphrased, because his way of saying it is boring.
OK, not exactly his words
Also not technically a medical term
I’m sorry you’ve suffered with your spins and falls but glad you finally found help. But you are so funny and able to take life experience and make people laugh. That’s a gift. Keep up your writing about what life throws your way.
Marjie -- you have a knack for tea and migraines. So sorry about the migraines but you are a champ when it comes to perseverance. Glad you have wrestled back some control. I love your blogs.- Rene