They Call Them "Twisties"!

Me and one of my new pals, "Extreme Ed" (aka "Freak" to his

St. Louis buddies) at the Bixby Country Store in Bixby, MO.

Photo by Brian Eaves

DISCLAIMER: The screaming in my mind while riding with the St. Louis Scooter Club is not in any way a reflection on the Club or it’s members.

What do I mean by screaming? For example: OH MY GOD I CAN’T STOP THIS BIKE I'LL NEVER MAKE THAT TURN I'M GOING TO GO OFF THE CLIFF OH MY GOD I CAN'T STOP THIS BIIIIIIKE!!!

From my perspective, I'm careening straight down a very steep hill and somehow I'm supposed to make a sharp curve right in the middle of it.

Two days before beginning this 3,400 mile journey, I met with my brother and we evaluated my braking technique. I'd been taught one thing in my safety class and now, just before leaving, everybody was offering their opinion about what were the safest braking practices. Having only logged a few hundred miles on a simple Vespa scooter the previous summer, I had crammed 1,000 miles of training into the two weeks before departure. On top of that, I was now riding a Piaggio MP3 250, a peculiar scooter with two wheels in front and one in back. So I needed to know once and for all if I had to adjust my braking style, two days before leaving.

My brother used to race motocross, and when he climbed on my scooter and raced around the high school parking lot, he made it do things I'd only seen on the Piaggio website, performed by professionals. My heart was in my throat as he whipped the bike from side to side and came within inches of dragging his knee on the ground. He rode back to me and calmly said, “It's pretty top-heavy, and the two wheels in front give it a pretty different balance." He explained that it would be easy to lock up the front tire if I applied too much pressure to the front brake, and the back tire could skid out of control. "In the end, I think you actually should brake the way you were taught.”

The general wisdom is that in a panic situation, we do what we're used to doing, only harder and faster. A more experienced rider can use more subtle pressure, called “feathering,” to brake; but we didn’t think there was much room for it on the Piaggio and anyway I didn’t have time to get more experienced. So, we made a rule, which I had practiced for the 2, 700 miles leading to St. Louis: in turns, rear (left) brake only.

But now I was pulling my left brake with all my might and I was still flying straight ahead while the road curved sharply right. I screamed out to John in my mind, “I have no choice, John! I’m gonna go easy!” I didn’t really think I had time for easy, and I was past the turn before I could evaluate how I did. I couldn’t tell you how much I used that front break for the rest of the ride.

Maggie Madonia, the leader of the St. Louis Scooter Club, always leads the ride. The novice rider goes behind her with another experienced rider bracketing right behind. Two days before, she and Pete rode 40 miles out of St. Louis to meet me and ride me into the city. Now, this has it’s own kind of stress, because there are other riders to keep track of, keep an even distance from, etc., but these two worked seamlessly as a team to keep me safe. Maggie would signal that she was going to change lanes, I'd look behind me, and I'd see that Pete had already changed lanes and was holding the traffic for me. Working together they created a kind of shield around me, and it was amazing. I was beginning to understand what it might have been like to learn to ride under their tutelage, instead the way I'd learned, out on the road all alone.

Me and the St. Louis Scooter Club peeps at

Sandy Creek Covered Bridge.

On this journey to Bixby, MO, Maggie was at the lead, then me, then Pete, then about eight others from the St. Louis Scooter Club. It was a wild mix of scooters and Harleys, truly a "come one, come all" attitude. Our stop at the Sandy Creek Covered Bridge was my first chance to talk to some of the riders that I'd only seen for a moment at our safety review before we left the hotel that morning. I was blown away by that first segment of the ride. At this point, I thought my arms were going to fall off. They felt like they had the first week I started riding, but now each turn was coupled with elevation and either braking or driving throttle. On the first incline when we took a curve I realized, “Whooooooa, that is a CLIFF there! No barrier, just road, a few inches of dirt and then trees lacing a CLIFF.”

That was the last time on the ride, though, that I had enough time to even think a complete thought. The mantra-prayer sentence I'd been reciting throughout my tour, whenever I was stressed (when I was first learning to ride the gentle wide sweeping turns at higher speeds, the foggy three-and-a-half hour ride from Sault Ste. Marie to Paradise, the ride through a near tornado into Wausau, Wisconsin) was reduced to a single word: “LIGHT!” I could not even speak the word. I shouted it in my mind, just once, at that first curve when I saw the cliff. After that the prayer had to become an action, and time and space were compressed.

I closely watched Maggie up ahead — in part to stay a safe distance behind her, but also to observe her ride. I could see that she had an easy, even rhythm around the turns. When I could mimic it, I could feel the road in my body and it was bliss — it was no longer me and the bike in the environment, we became the environment. During most of the tour my time and attention had been so focused on developing my skills that, I confess, I hadn’t had much fun when riding — but suddenly I thought "Ah, I can see why people want to ride!" It was sweet, that roll to the right, then left , then right, again, and again.

When goals are clear, feedback relevant, and challenges and skills are in balance, attention becomes ordered and fully invested. Because of the total demand on psychic energy, a person in flow is completely focused. There is no space in consciousness for distracting thoughts, irrelevant feelings. Self-consciousness disappears, yet one feels stronger than usual. The sense of time is distorted: hours seem to pass by in minutes. When a person’s entire being is stretched in the full functioning of body and mind ... In the harmonious focusing of physical and psychic energy, life finally comes into is own.
-Mihaly Csikszentamilhalyi

But in the second segment of the ride, there came a moment of sheer terror: I got ahead of myself in a turn and I was skidding off to the very edge of the road. From my view there was only a few inches of gravel, then trees, then — cliff. I didn’t have time to picture what could have been — only to realize that my eyes were on the piece of ground that I was sliding on, and in the last instant to do what I had taught myself in the 2,700 miles of turns before; it was just a moment for me to lift my head, which resulted in what I had practiced: “LOOK UP! at the final edge of the corner and let the bike LEAN to that point!” But this correction required a quick, hard and fast lean and then... I made it. My heart was beating about 240 bpm, and I know what that feels like, because my heart had beat that fast at times when I was in the ICU.

Our convoy through the Ozarks, as seen in Extreme Ed's side mirror.

Photo by Flynn.

Did my practice save me? My instincts? Certainly the fact that I was only going 30 at the final recovery moment helped. If you look at my drive reports (part of my real-time tracking on my web-site), you will see that I was going 30 every single time the tracker located me in that pass. I have Maggie to thank for this. There was a great deal of talk about how I “rode my own ride”; for those of you who don’t ride motorcycles/scooters, this means I didn’t feel pressured to ride above my ability just because I was riding with a group. Now that is partially true - we went super slow for me all day - and the members of the St Louis Scooter Club were angels about it, charming actually, talking about how they had noticed that a certain farm had horses, or saw certain kinds of trees they had never noticed, because they had never ridden this road so slowly (as an aside, I didn’t see anything except Maggie and the road; I knew it was green on either side of me but that was about it).

It took every ounce of RAM I had just to stay alive as they moseyed on down the road. But I believe there was a positive pressure to keep an even tempo. If I didn’t have Maggie ahead of me, so smoothly demonstrating each and every turn, had I been out there alone, I can assure you I would have braked more into the turns and tried to speed out of them too heavily. I’m only talking about 2 or 3 miles an hour more, but I think it would have made my ride jerkier, less stable, and less safe.

The truth is, for all my panicky thoughts and momentary terrors, Maggie and the St. Louis Scooter Club guided me through my first technical ride. Now what do I mean my technical ride? This is the term for a ride that requires skills, not really a ride for a novice rider. If I have anything “bad” to say about my experience with the St. Louis Scooter Club, it is about their cute little term for a technical ride: they call them “Twisties.” It sounds like a treat you might get at the Dairy Corner, right?!

Now just to be clear, Maggie repeatedly said, and I QUOTE, “This is going to be a challenging ride, with higher elevation and lots of twists and turns, which you are NOT used to.” UNQUOTE! This should have been a red flag. I probably should have asked, “What kind of elevation are we talking about, and what degree of turns?” But for some reason, I didn't. And on top of that, I’m a person that usually knows my geography, but somehow I had not put it together that we were talking about a technical ride through the OZARK MOUNTAINS. I was told we were going down the Mark Twain Trail; doesn’t that sound sweet? The lesson here, is DO YOUR HOMEWORK! LOOK AT THE MAP! FIND OUT THE ELEVATION AND THE DEGREE OF TURNS! Even when guided by incredibly safe and careful tutors like the St. Louis Scooter Club, I should have known what I was getting myself into, instead of being shocked out on the road. That was my own fault.

And here is another lesson: had I known what the level of difficulty was, I probably wouldn’t have done the ride. But the fact is if Maggie and Pete, these two experienced riders who had ridden into St. Louis with me the day before, didn’t think I could handle that ride they would have made another plan. Okay so I won’t ever go into a ride “blind” again, but in this case, in the end, I'm glad that I did; otherwise I wouldn’t have had the opportunity to raise my riding level, safely and carefully, with their guidance. It would have been a sadly missed opportunity. And again, to be clear, Maggie repeatedly said, “We will take this at your pace and you will be fine.” Which is exactly what happened. We did take it at my pace, and I was fine.

BUT... the real challenge came in the third section of the ride. As I was finally beginning to get the hang of the braking, the throttle, and the degree of lean needed to meet these turns, I felt a deep sharp pain in my right hip and abdomen. This was a bigger OMG moment, when I realized that this distraction could lead to an error, which could mean a ride off the cliff. I had another moment of terror when I almost failed to navigate my way around a curve. So now I had to stay with the “ride” with my full concentration on staying safe, while managing constant stabbing pains that came sometimes when I was braking and sometimes when I wasn’t.

I knew the pain could mean one of two things: it could be the unthinkable, a severe abdominal injury (which could mean a surgery that my surgeon, the best in the country, has repeatedly said he's not sure how - or if - it could be done again on my body); or, it could just be torn scar tissue, which though painful is not a big deal. I figured I would know by morning. In the meantime, I needed to “ride over it,” mainly because there was no other way out of this terrain. And if I were to stop the bike on that steep, winding road I'd have risked a major accident for myself and everyone behind me. There was no time for prayer, just work: the brake, the throttle, the road, and the lean. I just had to focus on each turn, each moment, each now.

Flow tends to occur when a person’s skills are fully involved in overcoming a challenge that is just about manageable (emphasis added). Optimal experiences usually involve a fine balance between one’s ability to act, and the available opportunities for action. If challenges are too high one gets frustrated, then worried, and eventually anxious. If challenges are too low relative to one’s skills or are perceived to be low, one gets to feel apathetic. But when high challenges are matched with high skills, then the deep involvement that sets flow apart from ordinary life is likely to occur. The climber will feel it when the mountain demands all his strength, the singer when the song demands the full range of her vocal ability, the weaver when the design is more complex than anything attempted before, and the surgeon when the operation involves new procedures or requires an unexpected variation.
-Mihaly Csikszentamilhalyi

When we stopped at the Country Store in Bixby, MO I let the photographer/motorcyclist on our two-day film team ride my scoot the final 15 miles into Salem, MO. I told the St. Louis Scooter Club that I was fatigued. Only my crew and my husband would know about the potentially disastrous situation I was in. I'd just have to sweat it out until morning...

...and low and behold, in the morning, after no significant pain in the night, I knew it had only been torn scar tissue, which I'd experienced when I first started riding the scooter. "Whew!" would be an understatement. I’m truly thanking God on that one.

Me and the amazing Bridget Bohac, Queen (and Owner) of the Bixby Country Store.

Photo by Brian Eaves

So, there we were in Bixby, MO at the Bixby Country Store, a general store I had heard so much about from Maggie... and it was that much more than she had described. When I first walked in my eye was drawn to the ceiling where a toy train ran along a suspended track. I heard someone yelling, “Please turn on the train! Turn on the train!” There was candy, amazing food, a wild selection of drinks, and an incredible mixture of paraphernalia from the past and the present. As we were eating in a back room one of my photographers captured video of around six hummingbirds dining simultaneously outside the window.

I knew that meal was my last chance to talk to my scooter club friends, because I was moving on and they would be heading back to St. Louis. I'd met several of them the day before at Maplewood Scooter, but it seemed I'd had so little time to talk to them before this unforgettable ride, this ride where they held me to my own line, the day I learned to ride with a group, the day I became, in my own mind, a rider -- the first day that I met the edge of the road, with fear, and recovered. Of course it was just another day for them, another ride to a beloved spot, Bixby; but for me it was my first technical ride. They can call it a “Twisty” if they want.

When we stopped just after my “near incident” I sheepishly said, “I’m sorry about that you guys,” because I knew that if I had blown it and gone down I would have put every bike behind me at risk too. The guy we called “Extreme Ed,” a big Harley rider with a shaved head and a helmet decorated with a grinning skull, calmly said, “You were okay. That is the hardest turn in the trip. It has a double apex. You had the first one, then you were too high for the second one, but you figured it out and got yourself down.” Each time we stopped he'd had something encouraging to say to me. He added, “The Rule is: when in doubt, LEAN. If you're in more doubt, LEAN more.” I hope I hear his words the next time I’m in trouble.

At the hotel, just before we embarked on my first "Technical Ride."

I wouldn't have looked nearly so sassy if I'd realized what was coming!

Photo by Brian Eaves.

Just... perfect!

Fresh fruit provided by Lori and Donna, my generous hosts for AirVenture OshKosh.

This is a blog entry I wrote from Oshkosh, before I went to AirVenture, but with everything that was going on I didn't get to post it before the B-17 entry -- so I'm posting it now! Slightly out of order, but definitely worth sharing…

Back when I arrived in Oshkosh, all I knew was I would be staying in the private home of (follow me closely here, it gets a little convoluted) a neighbor of a woman who had listed her home as a place to stay for people coming to AirVenture Oshkosh. I had originally called a woman named Patti, whose listing stated that she had Alpacas (fun) and would be giving rides to AirVenture (convenient). The latter would mean I wouldn’t have to risk my life in stop-and-not-go traffic for miles on my way in and out of AirVenture, while everyone in the cars was watching planes in the sky instead of the traffic. Sounded like a good deal, but... her house was full. So, she referred me to Lori.

Lori said she had a room. I explained that I would need a couple gallons of water a day (to keep up with my medication and the heat), which she was fine with, and she offered a light breakfast. I over-nighted a check and prayed she didn’t have a cousin who was a rapist that would be visiting while I was there. I figured in the worst case scenario, I had my scooter and I could high-tail it out and beg someone in a camper at Camp Scholler (the campground at AirVenture) to let me sleep on their floor. I would figure it out, but I assumed that Lori’s place would most likely work out.

The drive down there from Iron Mountain was arduous. There was a lengthy piece of Highway 47 that was under construction with no detour offered. I drove on an alternate route quite a fair piece, but when I came back to 47 it was still under construction. I called a friend of mine, Jon Sorenson, who has helped me in the past with navigation issues when I’ve been in a car and when my nav had me turned around when driving toward the Mac Bridge (user error). He went right to work figuring out where the construction was/wasn’t, but meanwhile I was cooking in the sun. And then, as has happened to me so often, I was saved by the kindness of an unlikely stranger. Out of nowhere came this teenaged surfer-looking dude! I don’t know what a surfer was doing in the middle of Wisconsin, but the kid drew me a flawless map with right, left, right, a jog, a left, and several more turns to get me to Black Creek, where I could drive illegally the wrong way for one block through town, on the gravel (“You’ll be fine,” he says), and then reconnect to Highway 47, where it’s clear. I was so grateful, and greatly relieved, because I didn’t have the energy to continue riding around trying to figure it out to no avail.

Flooding in Oshkosh. Taken from mitchpond on flickr.

I knew that when I got to Oshkosh there would be road closings, because they had been hit by very serious rain: 7 inches in two hours the day before. One of the closings was Highway 41, which would be part of my Route... again there was no continuous detour offered. At that point I had driven for about five hours in the heat, so I bit my lip and jumped on the freeway, which looked like it was going to get me back on track and save me a few miles. I immediately regretted it, because though the highway was also under construction, even the semis were speeding through it and past me, blasting me with winds that wanted to knock me over, or worse. Luckily it was only about 5 or 6 miles. Then Jill (the name of the American English voice on my Garmin Zumo navigator) weaved me through, I swear, every little neighborhood on the way to Lori’s house.

A van abandoned in the water near Highway 41. Taken from mitchpond on flickr.

Arrival -- finally! All would be well. I was met by Donna and a very warm welcome. She said that she had been watching the real-time tracking on my website, so she was able to arrive about three minutes before I did - which is exactly what it was designed for, so that was great to hear. She also helped me unload the bike, which was a huge relief, and something I hadn’t experienced so far on the road.

It just kept getting better. That night Lori and Donna took me to their local fish fry at O’Malley’s, where Connie the proprietor makes this amazing, very lightly breaded and extremely flavorful Walleye which I tried (along with some shrimp and perch) on Fridays. The place was hopping and it seemed as if everyone there was a neighbor of Lori and Donna's, and Lori was even taking orders for one of the of the tables that couldn’t get to the counter. She continued to monitor their table for drink orders throughout the night. I was made to feel like I’d been away from home for a long time and was just being welcomed back.

In the morning there was a note from Lori asking if it would be okay if we had sphagehtti for dinner (now you may remember that the deal was for a light breakfast) -- well, those who know me well, know that spaghetti is my No. 1 comfort food. When she came home she had nectarines in hand and I accused her of calling home (my home) to find out what my favorite things were, but she hadn’t -- it just worked out that way.

Now the deluge was actually devastating AirVenture. Normally for several days before the Monday the event begins there are hundreds of planes flying in, but the ground was so wet that there was no place to park them. So the sky was quiet, which was kind of eery and sad. I couldn’t help but think about all the people who spent five years building a plane that they were finally able to fly to Oshkosh, and then couldn’t. Not to mention all the aviation businesses who are dependent on this enormous event, with an attendance of 800,000 people, for the majority of their businesses’s income. Then there are also the Oshkosh businesses that are built around Airventure -- I couldn’t imagine the how far the ripple of impact was reaching.

As for me, since there was “nothing happening” for the two days prior, I decided to lay low and let my body recoup. My back was in pretty serious pain on the ride from Iron Mountain and when I woke on Saturday I couldn’t even bend over. Because it was the weekend, it was impossible to find someone I could see that day and Lori was calling to tell me that she had struck out finding anyone as well, when a co-worker of hers said, “Hey, I can do it.” Kelly, who does massage in her free time, ran home, grabbed her table, and came over to do my massage in the living room. She took care of the pain and I decided to move very cautiously the next day in hopes of restoring my body in my sleep.

Lori, who is a stylist, and I were talking about hair color. I had mentioned that mine had turned blonde over the summer. “What color was it?” she asked. “I like my grey/silver hair,” I said. She stood up, saying, “Well, let’s go put it back.”

“Seriously?”

“Sure, why not?" she said. "I can do it. It just needs some more toner!”

I was delighted. “Okay then, why not?” I said back.

So she and I and her extremely camera-shy dog Oscar (you have no idea how hard I fought to get a good pic of this dog who would run away at the very scent of my iPhone!) went to the salon and she restored my hair.

The elusive Oscar.

My last night there they made for me my favorite kind of BBQ and invited over the AirVenture guests from Patti’s house (remember Patti, way back at the beginning of this story?). Then Donna gave me an envelope with a very generous donation from her co-workers: “The Metalist Clan.” An enormous thank you to: Joel, Dick, Dave, Debi, Lori, Jenny, Jan, Donna, Amy, Tim, and Jeff!!!

The truth, is we just hung out. How many times does someone say, “Just make yourself at home,” and even if they mean it you can’t really do that, certainly not if you just met the person, cuz if you did it would be rude? But this really was like that. I felt like we were first cousins that hadn’t seen each other in awhile, but cared about each other a great deal. I’d certainly never conceived that I could feel so welcome in a stranger's home, or that I wouldn’t want to leave, or that I would miss them so much already.

Oscar at rest (though somehow still blurry).

Cheboygan, Synchronicity & Smooth Sailing

Sick Scooter.

Day Four: Fixing up my Scooter (and my Body) in Cheboygan, MI.

The weather report said heavy thunderstorms in the afternoon en route to Cheboygan, so I set about getting up bright and early to avoid testing out my new rain gear just yet. I had already put in a call to my bodyworker back home to see if she could help me find a Deep Tissue Massage Therapist in Cheboygan, because I was hurting pretty bad in quite a few places and I was worried that if I got chilled in the rain, I would definitely be out of commission for a couple of days.

I fell back asleep after my 5:00am wake-up call, but started hustling around 7:35 when I woke again. I was loaded up and on the bike by 9:00 which, although later than I intended, was my earliest to date. I was punching in the address to The Gables Bed & Breakfast in Cheboygan into the nav, the last step in my departure procedure checklist, when the nav powered down. This was weird. I tried to restart it -- no luck. I tried to turn the bike on -- no luck. I couldn’t even get the key out. It was making a funny high-pitched noise. I wondered if I did something to trigger the anti-theft device on the bike.

I called the Vespa dealer “back home” in Grand Rapids (where I bought the bike) and Dan, the mechanic who got my scoot all suited up for this ride, attempted to talk me through getting the key out. I was able to do so, in fact the ignition was stuck between the on and off positions and wouldn’t move. He said he had never heard of this before. He said he figured something was wrong with the ignition, that maybe some of the tumblers had jiggled loose.

My mind was racing. There are a tiny handful of Vespa dealers in Michigan and I wasn’t so sure I wanted to take my Piaggio to a non-Vespa shop for an ignition problem. I asked Dan, “If you were in my shoes which would you do — have it towed 300 miles to a Vespa dealer or take it to a local shop and see what they could do with the ignition?” I was imaging having to get towed to Detroit and wondering how I would ever make up the miles to get back on schedule. He said, “I would wiggle that thing around for a long time.” But it was like Excaliber in the stone. It wasn’t going anywhere.

I asked if he could look up where the closest Vespa dealer was to Gaylord, MI. Now here is the first miracle in the story — get this, the nearest Vespa dealer was in GAYLORD, MI!! NO LIE!!!

Thanks to Chris Maxsom from Total Powersports (Gaylord, MI) for

fixing me up and getting me on the road in record time.

I called and talked to Jeanne at Total Powersports. I was afraid that, given they didn’t know me, they might not be able to squeak me into their schedule -- but she said no problem and that they were rolling out the red carpet. She sent Chris Maxson, their sales manager out to get me. He was there within ten minutes. Once at the shop, Mike Peppler got me set up and Chris Smith started right to work on my scoot, while Mike took my information.

In about fifteen minutes Chris, the tech, came out with the word. Turns out the Piaggio has two off key positions (I forgot to ask why), and if you take the key out while in the “half-off” position, rather than the “full-off” position, the engine is actually still on. So my engine had been on all night which had killed the battery. He gave me a power jump and told me not to stop the engine until I got to Cheboygan, and then use my charger through the night (which was set-up for me before I started this trip by Scott Sternaman: Shoreline Smart Homes).

They then told me they were going to put me on their website and see if they could get their people to follow the project! AND, they didn’t charge me a penny for all their trouble! A big huge heartfelt thanks to Total Powersports, Gaylord, MI!

I took off for Cheboygan without further incident or rain. When I arrived I set about trying to find a body worker. Now given that I don’t have an abdominal muscular structure, the rest of my body takes on an extra load and, given the additional burden of riding the scooter — well, under normal circumstances I need to have body work to undo all the damage I do just trying to live. With the added strain, I was in a world of hurt and needed someone with some medical knowledge and skilled enough to be able to navigate the terrain of my unusual body. When I left, I knew I would need to find people along the way to unkink what I’m doing as I ride the scooter. I’m particularly feeling the additional stress between my shoulders, my lower back, my wrists and my ankles.

The Gables Bed & Breakfast (Cheboygan, MI).

Image taken from thegablesbnb.com

When I got into town, the B&B was not yet open so I sauntered over to Alice’s Restaurant for a snack. I asked my server if she knew of any massage therapists and she mentioned several places, but I figured the one who works with a chiropractor would be the most likely to have the skills to manage my broken body. Dr. Dom’s office gave me her number — Shellie Charboneau.

Now here are the next couple of crazy and fortuitous parts of the story: first, she is usually completely booked on Monday, but for some reason she was open today and was just getting ready to go over to her mom’s for lunch, so she was available. Not only that, but her place was literally next door to my B&B, so I could walk over while my bike was charging (at the realtor’s office -- thank you Jessie and Chuck Knopp). But wait, that’s not all — she races motocross! Now, for those of you not familiar with the term, that means she races a motorcycle. In fact she competed last weekend at Onaway Motor Speedway in the 30+ Class (with all the boys) and took first place!

Shellie Charboneau, Massage Therapist and Motocross Racer,

fixed my overworked body, pained from riding.

Well, Shellie knew exactly what my body needed. She uncompressed my neck from wearing a helmet, pulled apart my shoulder-blades from holding my arms up for all those miles, took the stress away from my lower back and reassembled my wrists and ankles that were hurting so badly (I couldn’t even hang my left wrist limply over the handlebar without it hurting, much less use it to break.) Now I am all fixed up. I’m not feeling pain at all, anywhere.

Inside the Gables B&B.

I’m still amazed at how fortuitous the whole day was; that I would manage to breakdown in one of the few towns in the entire state of Michigan that has a Vespa dealership, that the only referral I would get for a body worker in Cheboygan would be located right next door to where I was staying, and that she would be a biker chick - what a day! If this is any indication of how the rest of this tour is gonna go, then I am smooth sailing!

Tall Ships & True Tales

Day Two: Tall Ships & True Tales (Traverse City, MI)

I can’t stop for more than 30 seconds without someone sauntering over to ask me about my unusual scoot. What a blessing. I had never realized what a lure this three-wheeled ride would be — which then gives me an opportunity to tell people that I’m riding 3,500 miles to raise awareness for Hidden Disabilities.

"What is a Hidden Disability?" they all ask.

My response… Any disability that one might not recognize just by looking at the person. They might be deaf, autistic…

Often, the person interrupts me and starts listing other Hidden Disabilities, like MS… I can’t begin to tell you how many stories I’ve heard in just the last two days.


I'm spending the night at a unique Bed & Breakfast, which takes place on a Tall Ship on the water at Traverse City, Michigan. Tonight I heard from a crew member of the Tall Ship, Jeremiah Bailey. Jeremiah’s brother, who has MS, works on a Natural Gas Rig in Colorado. He’s only 25. Sometimes one side of his body goes numb or his hands don’t work. He will get worse over time.

I’m stymied sometimes by people’s stories. I have so many questions, but they all seem too personal to ask. I wonder if they have insurance, if the person has enough support within their family or community. I wonder what could change in their life that would really make a difference.

At this point, I just want the very first step: I would like to get people to stop and think for a moment. If someone isn’t behaving the way people expect them to — or want them to — then maybe something is going on with them.


I am honored to have these strangers share their stories with me. Together we will figure this thing out.

And on we go!

Up to Speed

As of today, I am 21 days out from departure on my Midwest Scooter Training Tour (hitting the road Friday, July 9th). I thought I’d take a moment now to revisit some of the basics about this project, just to get everyone up to speed: this summer’s trip will act as a training session for my big tour of France, which is next summer. This training tour covers 3,400 miles: 7 States, 26 towns/cities in 50 days. I’m staying mostly in lower cost hotels, with a couple of B&Bs thrown in, but there are about 10 days camping (yikes!) well as a few more adventurous stays like in an overnight on a submarine and another on a Tall Ship.

Now let’s address the bigger question: what is this project all about? Well, I have a Hidden Disability (which you can learn all about in gruesome detail, if you wish, on the new website which I’ll describe in a moment) and I’m doing this project to share my story in hopes of raising awareness about Hidden Disabilities, something I and millions of other Americans deal with every day (see posting with H-P article). Around my depart date there will be a super cool web-site which will include real-time tracking that will allow all of you to follow along with me on my journey, as well as my updates and videoblogs and photos and the works.

In the meantime, you can keep up with me on my Facebook Group: Off The Map: Europe, Twitter: offthemap_eu or meet-up with me through FourSquare.com (ara@offthemap.eu).

The Word is Getting Around

A Tour de France on a Scooter for a Special Girl
Journalist:Mike Werner Normandy, France
Bikes in the Fast Lane: Motorcycle News



Please "Digg" this article. If you would like more information about how to increase visibility for this article please contact me at ara at offthemap dot eu.

Wow, Exciting! Control Tower: France

Image from Alpinebiker.com

I just had my first voice-to-voice conversation with Paul Starmer. Paul has a company that organizes trips across the Alps. I contacted him because his great attitude impressed me. I loved how he talked about making sure that the rides he arranges were within each person's ability so s/he would have a great time. He will assist me in creating a route across France that meets my challenge and safety levels. But, to my delight, he will also take me through the beauty of France's landscapes with stops to discover all the precious art, history and music that is tucked away outside of Paris. I had so many feelings as we were talking, my mind was racing. Let me share with you some of my notes:

Image from Alpinebiker.com

I wound up learning French terms for different kinds of roads, like Route Nationale, which are like our one lane highways that are 55mph.

The Alps temp is 1 degree at the top and 18 at the bottom (he didn't mean Fahrenheit, so I have to look that one up; but I know that's cold). I know there are heated jackets and pants, but the cold is my Achilles Heel. If I get really cold, I'm stripped of all my energy in a very severe way. I could end up in bed for 2–3 days. I need to figure out what temperatures I can handle before departure in order to determine the final route.

To begin to figure out if I can do any of the Alps, I have to go to an open area and practice my 90-degree turns. Go 20 meters and do it again and then again and again. Essentially, I need to learn how to ride this scooter first. My turns are still too wide. I'm a long way from 90-degree turns.

Fuel costs, at present, $8.21USD per gallon for regular unleaded. My bratty little scooter needs Premium. The tank holds 3 gals. I'm not yet sure how far it goes on a tank.

We talked about where I would stay. I don't think it is a good idea to stay at a place where there is no one there to help at all, so we are planning on most of the overnights to be at an Association of Logis DeFrance, which sounds like they are usually family-owned affordable lodging.

I will be using a combination of my motorcycle-friendly Zumo Nav and paper maps. Paul is going to send me the maps that I will need for the regions that I will be visiting.

Two days ago, when Michael and I were driving up and down a hilly road near our home, I said to him, "I wish Teasdale was still alive." Wayne Teasdale was a Christian monk I met in the '90s. At that time, I was opening my fine art gallery (more on this another time), and he told me that I was making a mistake. He said I should be making my own artwork, telling my own story in a creative way. He forced me to watch a very boring video of a Japanese artist as he tried to make his point. I just wasn't able to hear him at that time.

Then, this past year when I created We Vow, I thought I had stopped Teasdale from "haunting me," so to speak. But I didn't. We Vow was a mission. It was something I had to do and I have no regrets. I still feel passionately about the We Vow project, but this—what I am doing now—is what Teasdale was talking about.

This is it. This is what I am supposed to be doing. It feels awkward to say, because I realize it sounds like I'm going on some kind of extended holiday, and of course many people wish their circumstances would allow a similar adventure. But there is undeniably something about this particular adventure that is exactly what I'm supposed to be doing right now in my life. If you will forgive me for how hokey this sounds, I feel like the stars have aligned. I think some of it is fulfilling childhood wishes, but it feels like something more, something that hasn't yet been revealed to me. It is yet only a vague knowing, but this is what Teasdale meant. And I met Teasdale before the whole ICU mess even happened! Anyway, I wish now, more than ten years later, I could tell him that I was listening, and that the time has come.

(Image of Wayne Teasdale from Wayne Teasdale's Interspirituality)

Jitters Be Gone! (3/21/10)

I have to get rid of the jitters. I don't have them really badly, and I don't have them all the time, but I have to get rid of them when there is no reason for them to be there.

As I've said, I've realized how very "mental" it is riding the scooter. Having flashbacks of my previous scooter wipe-out (and the accident I was in as a motorcycle passenger) while I'm cruising down the road is not contributing to keeping me—or anyone else—safe and sound.

To that end, I've decided to go through a treatment that I've had before, called, cleverly enough, Prolonged Exposure. It is a kind of cognitive behavioral therapy developed at the University of Pennsyvania for sufferers of post-traumatic stress disorder. The technique is designed to help people process traumatic events and reduce trauma-induced psychological disturbances in their normal lives, so when they are faced with new experiences which they would have previously associated with their trauma, they won't be triggered by those new experiences.

I received the treatment before to try to diminish the after-effects of having been in the ICU and the medically induced coma experience (which I talk about here), as well as for trauma from sexual abuse that happened when I was 19. To say that the treatment is extremely unpleasant would be an understatement. Nevertheless, I called the psychiatrist that helped me before, and we scheduled three appointments to work on my past upsets. After the treatment, I don't expect to be picturing myself wiping out while cruising.

Next, it is my plan to go back up to Kalamazoo where I took my motorcycle safety class from Pastor Freak at Michigan's Safest Riders and see if I can't get some pointers on cornering with this funny little three-wheeled dealio.
 

Steve E. Bensinger, a.k.a. Freak.
Owner, Program Manager, Rider, Coach,
Senior Pastor for Come As You Are Church
(with friend)

Image courtesy of Michigan's Safest Riders

I know my hesitation, and therefore wide corners, are a problem. I think once I shake the jitters, Pastor Freak should be able to help me figure out how to corner with a great tilt and still be plenty safe, because that is what this 3-wheeler is all about. I will finally be in good shape to explore the limits of this gorgeous, unnamed creature—without panicking for no good reason.

Is it safe for me to ride the MP3? (2/16/10)

Mystery solved.

Michael and I just drove up to Holland, Michigan to see if we could resolve the disability challenges with the MP3 250. The "roll out" was what I tried first, because neither of us thought I was going to be able to do it. So, I climbed on, gripped the handlebars, and then slowly used the balls of my feet to push the bike forward. I did the little duck walk and moved it forward about six feet. Michael had taken it off the kickstand and, realizing how heavy it was, worried to see me moving it so fast. He cried, "Ara, wait!" But I was fine! I'm shocked too, but it was for real, I didn't strain and just paddled it forward. It is a little harder to move than my Vespa, but not that much.

The other issue was whether or not I would be able to put my feet on the ground while sitting on the bike. One salesperson had said that, with my height, it was doubtful I would be able to touch the ground at all. There I was with my heels on the ground. This means it is official: I have long legs. I should have known -- Michael, who is five-foot-eleven, and I have the same inseam.

Now we have to wait for the dealership to ship the scooter from Holland to Grand Rapids where they will prep it for a ride. After all this anticipation, I can't wait to actually be in motion on the MP3. It felt like a cruiser to sit on, with its gigantic padded seat and closer handlebars. Now I have to let go of the romance of trekking across France in my more-traditional Vespa, but... oh my, is the MP3 going to be comfortable. I suppose after riding for an entire day, I might be quite grateful.

The reason this change was considered in the first place had to do with the stability of this three-wheeled scooter over the traditional two-wheeled scooter. One review even reported that it was less susceptible to being blown about, because the road grip with the three-wheels is so strong. Now I won't be cruisin' on the highway, but I could tell why that reviewer said this even by sitting on it -- that scooter isn't going anywhere -- amazing what a third wheel can do. It also can take on gravel, railroad tracks and wet pavement with confidence. Don't worry, this hasn't given me the idea of stunt riding, but it could very well put me on a more stable ride.



Leno and a Piaggio representative explain features of scooter and Leno takes test drive.
My apologies for the poor video quality, but the audio has great information.

I'm in for a test drive. Would someone come over here and melt the snow and ice?

Medical Team (2/14/10)

Photo: Steve Williams: vespalx150.blogspot.com

I just returned from Chicago after a blitz of doctors appointments. It was time to get my medical team on board. My two core doctors are my internist and my psychiatrist, both of whom have seen me for about three years prior to the big ICU incident, so they have known me a long time and traveled the journey from near-death to a more-functional present with me. I wanted them to know my plans.

In addition to meeting with my core team, I also had my first appointment with a dietitian. As part of my training regimen, I've documented my food intake for the last two months. Unfortunately, I haven't been able to drop below my current weight for some time now. I have a reputation for eating small portions, so initially it was hard for the dietitian to figure out why I'm not losing weight. Her hypothesis was that the main problem is that I don't eat for a couple hours after I wake up. My boxer brother, Dan, has taken issue with this habit as well, so I'm going to start eating when I wake up, regardless of the fact that it seems like a revolting idea.

Previously, after riding my scooter for twenty minutes, I would be exhausted for three to four hours. My internist thinks that the reason isn't due to general fatigue, but the strain of balancing while riding -- made difficult by the fact that I have no abdominal structure. He urged me to reconsider my current scooter for a three-wheeled model. Well, Michael and I happen to know that the three-wheeled scooters with two wheels in the back are very dangerous, but Piaggio came out with a model last year, the confusing named Piaggio MP3, with two wheels in the front. This model is reported to be extremely stable. One would think this would be a no-brainer: get the MP3, right? However, this scooter is quite pricey, and of even greater concern is whether or not I can push it forward, just to roll or maneuver it.

The most challenging of my hidden disabilities is that I am at great risk whenever I undertake an action that creates any intra-abdominal pressure. This means an action that could blow out my surgery. At the time of my surgery, it was the largest abdominal reconstruction on record. They used the largest muscle in the body (the latissimus) in what is called a "free flap" or free tissue transfer: the movement of tissue from one site on the body to another ("free" implies that the tissue, along with its blood supply, is detached from the original location and then transferred to another location). The plan was to move the latissimus, along with its associated skin and connective tissue, or fascia, across my abdomen to keep my internal organs in. The twelve-hour surgery required six months of preparation. Two balloons were inserted below the skin in my back. These were inflated with saline a couple times a week to expand the skin on my back, so when the free flap was removed I would have skin to close the resultant opening in my back. If I blow out this reconstruction, my surgeon honestly doesn't know what he is going to do to repair it again. My surgeon wrote the only text book on abdominal reconstructions, and if he doesn't know how to fix it, I'm screwed.

Now, I'm not supposed to do anything that would cause that intra-abdominal pressure, such as straining to open a jar, or pushing or pulling on a heavy door. Likewise, I am not allowed to jog or ride a bike. So, when I push on the MP3 with what I have learned is an appropriate amount of pressure, if it doesn't move, well, that's it. Except, Michael just found out that there are three versions of this scooter and we don't know which one I gave my little push to, so come Spring we need to go to another dealership with the smallest and give it another go.

Lastly, I met with my psychiatrist with the hope of adjusting a couple of my medications. I take one medication at about 10:30 pm that helps me to get to sleep. It usually takes a couple hours to knock me out, but then the problem is that it lays me out for about 10 hours. I've been taking this med for quite some time; once we got a combination of meds all working together we were fairly reluctant to change it. Now, though, I find I have a hard time consistently cramming a workout into what is already a busy half-day. I'm doing it, but it would be so much easier if I could be given some time back. Turns out, the manufacturer recently offered an extended-release version of this medication which is supposed to have a slower journey to "the wall" (what I call sleep), a hard kick to sleep, and then a shorter duration of sleep. Now if it actually works this way, I will be so happy and relieved.

Last night I fell asleep attempting to write this blog, mid-sentence. This experience backs up the existence of the purported "hard kick." And I woke up at 9am!!!! One time does not a sample make, so hopefully the next few days will prove to be similar.

If any of you have more gossip on the Piaggio MP3, please comment on this blog and let me know the word on the street.