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).

Off The Map Goes Sustainable

Ruth Young, a reporter for Madison Wisconsin's Isthmus Daily Page interviews me about my journey and my stop at the Speckled Hen Inn, a sustainable farm.

http://bit.ly/OTMSustainable

The Story Behind The Story

Me and my scooter's big flying cousin, the Piaggio Aero,

at EAA AirVenture 2010, Oshkosh.

Okay, I wasn’t going to talk about this—and I still might not. I have an editor for my blogs, he makes sure my verb tenses match and breaks up the occasional run-on sentence while leaving the language my own—but he also offers his opinion on things, like a partner on this project. And we both agreed before I started this project that one certain topic was going to stay out of the game and we were going to stick to the main points, which are: I have severe fatigue, I'm on a whole host of medications as a consequence of being in the ICU, and I’m missing my abdominal musculature, something you really need to do most of what a person wants to do. I must constantly assess my physical condition. In my everyday life I need deep tissue massage to help me unravel all the kinks I've put into stray areas of my reconstructed body, after using it in ways for which it wasn’t designed. And on this journey with the additional stress of riding the bike against the winds and sudden gusts and drafts of the semis, I find I need a recovery massage about every three days instead of every other week. The biggest challenge of this journey is fatigue; I'm only able to ride about 150 miles in a day and I need breaks every few days to recover.

BUT... that isn’t what I’m talking about here. This is the something more, something else altogether, and a topic that I tend to not talk about - the taboo Hidden Disability.

I’m Bi-Polar Type II.

I was diagnosed when I was 29, put on medication, and was fortunate in the sense that it didn’t take too terribly long to find a medication that brought my life into some semblance of balance. It didn’t make me “normal.” I described the experience of adjusting to my meds as “taking the edges of the intensity away.” I still tend to experience emotions stronger than a “normal” person, but now with the proper medication, people have stopped saying, “She is so bright, it is so sad that she can’t seem to get it together.” I still have to be certain to get enough sleep, because lack of sleep is a sure-fire trigger back to my old chaotic, painful, disappointing life. So I manage it very carefully.

Unfortunately, statistically I’m one of the fortunate ones, because 80% of Bi-Polar patients are what is called “Non-Compliant,” meaning they don't take their medication as directed. These patients also don't have the benefit of the stable life that I have gone on to lead, with a marriage of 16 years, a house we built together, and a couple of large scale photography projects to my credit, despite being Bi-Polar. In the early days after my diagnosis, life was so dramatically improved that it hadn’t occurred to me that I would be restricted from doing anything I wanted to do—even flying a plane.

When I was 10, I flew with my Uncle Dennis for the first time and I was captivated. The weather got a little dicey so we had to fly by instruments, but he “gave me the controls” and told me to keep her on course until we got near the airport, which I was able to do it even though we were being knocked around by turbulence. I was sure that someday I would learn to fly, so as part of my undergraduate program at Northeastern Illinois University’s University Without Walls, I chose Aviation Ground School to meet my Science Requirement. During this time I began taking flying lessons at the Tri-Cities Regional Airport in TN/VA as well as taking practical flying lessons. I was a model student. One day I even had an American Airlines pilot as my instructor and he encouraged me to become a commercial pilot because, he said, I had excellent judgment and he believes that to be the most important factor in being a great pilot.

It was five weeks into my lessons before I realized I was going to have trouble passing the medical exam. There was no way to avoid it, and my medication was on the FAA’s “No Fly” list. So of course I failed the medical. Now I understand that not every Bi-Polar person has the stability and consistency of judgment to safely fly, which is why these laws are put into place, but I also believed that I am an exception to that assumption, and I just wanted to be evaluated. All of my instructors, as well as my psychiatrist (who had been seeing me for almost four years at that time), agreed to attest to my fitness.

When my notification of denial came from the FAA, my husband Michael, who is always the first to believe in me, said, “Ara, this is one of those fights where you may just have to stand up for those who cannot stand up for themselves.” So I called around and found the highest profile aviation attorney in the country and he took on my case Pro Bono.

We went nose to nose with the FAA. Round 1: Denied. We regrouped and went after them again. Round 2: Denied. The process took almost three years, but after two denials it was over; they would no longer look at my case unless I was no longer on these medications... the very medications that allowed me to be safe, stable and exercise good judgment.

During that time I acquired 80 hours of flight time, twice what is needed to solo, and with an instructor successfully completed every skill, including night flying and my long distance flight (from Chicago to St. Louis and back). But with no medical there would be no solo flight.

The B-17 I rode in at AirVenture.

Now time and the denial of a medical has not dampened my love of planes or flying one bit, so when I was planning this tour and realized I'd be able to hit AirVenture/Oshkosh, The World’s Greatest Aviation Celebration, I was ecstatic! I made plans to ride in a B-17 on the morning of the first day, and then I planned to stop by The International Woman’s Pilot Association—The Ninety-Nines—just to see what cool information they might have on early women pilots.

When I reached their tent, I was approached by a woman wearing a kind of camping hat with a flower on it, and with a bright smile and a big spirit she said, “Are you a Ninety-Nine?”

But the only way to become a member of this organization is to be a licensed pilot. But I had been asked by about forty guys all day how many AirVentures I’d been to—"My first!”—And I would ask them how many AirVentures they had been to, and their answers were everything from "28!" to—"My first!" I would ask them what part of the Aviation industry they are a part of, and they would tell me everything from electronics to General Aviation to Aviation History.

And then they would inevitably ask me what I fly... like what plane. And somehow, that question didn’t catch me up. I would tell them I couldn’t get a medical, so I fly with others and ride a scooter. And we would talk a bit about the medical process… they would encourage me to fly light aircraft... (where no medical is needed) and we would move on....

But when she said, “Are YOU a Ninety-Nine?” with that bright and smiling face, I heard, “Are you part of the club? Are you one of US?” I was stopped short. Telling her I couldn’t get my medical just felt hideous, but I was on the spot and I couldn’t come up with anything else.

“Me?... Oh no, ah... um... well, I’m unable to get a medical.”

She took a breath, I could see it coming, just like all the men earlier in the day, with the solutions: “You know the EAA offers help with trying to get a medical,” or, “For the new sport license, you only need a driver’s license.”

And I would say, “True, but that only works if you’ve never been DENIED a medical, and I’ve been denied three times.”

After that there is nothing to say.

(Although one charming fellow said, “How fast does your scooter go?” “I know where you’re going with this,” I said, ”it goes 77 and it only weighs 450 pounds, it just needs wings.” We both laughed.)

But looking into this woman’s bright eyes, I couldn’t laugh.

As some of you may know from reading other parts of my story, I went through the in vitro process to get pregnant (stay with me, this is going somewhere). At that time, I was friends with a number of women who were all going through this process and we would all communicate with each other online. And I suddenly remembered how so many of them were tortured when they had to go to yet another sister or friend’s baby shower. At the time I understood it intellectually, but I didn’t feel that pain in the same way they did. Now, I got it—way deep down, I got it. This was my baby shower.

I changed the subject. “I was just stopping by to get some information for my blog.” She kindly directed me to the magazines on the table and then I slipped out the back of the tent. I found a corner in the shade and sat down on the concrete and let the tears fall down my face. There is no amount of therapy that is going to take all that loss away from me. I can still enjoy flying with friends, but I’m definitely not going to any more baby showers. That was excruciating.

So—that's the experience I had at Oshkosh (although, the B-17 ride was out of this world, and there is a video about that forthcoming!).

But, in closing, I feel I should say why I didn’t want to talk about being Bi-Polar in the first place. I was concerned that this adventure, a woman with no abdomen, riding across the Midwest on a scooter, would just look like a concoction of a Bi-Polar person and be dismissed. The truth is, it is the concoction of a Bi-Polar woman—I do tend to think big—but I’m still well medicated, so I plan very thoroughly and carefully. It took many months to:

• plan a route with a 50 day day itinerary,
  
• research safety options and find a global tracking device that provides real-time tracking,
  
• find and figure out an SOS button, which sends a signal to my Base Camp and to two people in Europe and a Satellite Phone if I should get into trouble,
  
• envision the design and creation of a complex website along with the creation of all the media materials, and
  
• structure the itinerary to plan for whatever challenges I might face, and carefully determine what my body could handle.

I couldn’t just hop on my scooter and take off; this trip took meticulous planning, both before and while on the road, as I continually need new supplies sent to me, and I’m sending discs of the videos I make back to Base Camp for editing.

I get anxious when I think I will be categorized as the kind of Bi-Polar person I was in my old life, and as a result I’m pretty undercover about being Bi-Polar. This is one of those Hidden Disabilities that has a huge stigma, which keeps people from seeking help, because they too don’t want to be perceived as “crazy!” But over the last couple of days, as I’ve considered my experience at Oshkosh, thinking I wouldn't be able to share it with you, I realized I wasn’t helping matters by keeping quiet about my own disorder.

The truth is, it's okay to be Bi-Polar, and it sucks to be crazy. I am a huge advocate of getting assessed, sticking with your doctor, sharing with him/her everything about your experience for however long it takes, so that together you and he/she can work out just the right cocktail. There are so many new drugs, even some that have come out in just the last year, that it is even worth going back to the doctor, if you had a bad experience in the past. And if you need guidance, or just more information, contact the National Bipolar Foundation, at nationalbipolarfoundation.org—they should be able to either help or point you in the right direction.

So, I said it... I’m Bi-Polar. I take my meds. I’m sane. I live a rich and full life now, I’m not crazy and I don’t drive my friends and family crazy like I did in the old days. I'm able to finish things, like the two large scale photography projects I did over the last couple years, which I could never have done without medication. I’m having a great adventure, which I dreamed up, and I’m doing it very cautiously and safely, like an overly concerned Bi-Polar Person should.

And that is the story behind the story.

Scooting Across The Mackinac Bridge!

Mackinac Bridge, a.k.a. "Mighty Mac"

Image taken from 50statesproject.wikispaces.com.

I'd only gone a few miles from The Gables in Cheboygan, Michigan when I looked down at my dash and noticed that my trunk light was on, meaning my trunk was open. This was a pretty big bummer, because I was pretty overheated having already spent half an hour at a Shell station, getting the tire pressure corrected and managing a problem with the helmet camera, and now I would have to unwire the camera and take off my pack and get all disconnected from the monitor just to close the trunk. Regardless, I had to pull over; but when I did -- the trunk would not close. Now, this trunk has always been temperamental and has required a good slam to get it to shut properly, but this time the latch just wouldn’t engage.

I once again called the Vespa dealer in Grand Rapids, looking for a dealer close to me, but this time they told me what I had expected to hear a couple days earlier when I was in Gaylord, Michigan: “There isn’t one in over 100 miles. You could go to Detroit.” Well, Detroit was not on my way to Sault Ste. Marie, so I sent up a tweet asking if anyone could point me toward someone who might be able to fix it between here and there.

In the meantime I talked to Michael, my husband, who chastised me for not taking the duct tape. I explained that the roll had been too big, but it gave me the idea that I might be able to get a piece of duct tape between where I was and the bridge (The Mackinac Bridge). I was having visions of the wind tossing my critical possessions into the lake as I scooted across.

Before too long I came to a small town, Indian River, where I stopped in an oil change place. Again I had to go through all the gyrations of getting unhitched from the helmet cam, and just as I finished I looked up to see a rather tall smiling man looking down and me. “I have to ask, why do you have a camera on your helmet?” he said. I answered, “Well, I’m delighted you did ask, because then I can tell you that I’m riding 3,400 miles on this scooter to raise awareness about Hidden Disabilities." I pause for the puzzled look on his face, then explain, “This could be any disability that you can’t tell by looking at a person, such as a person who's deaf, or autistic, or has MS.” He whipped out his wallet and said,”Let me give you five dollars.” I was taken aback! People have donated on the website but no one had ever just opened their wallet in front of me and handed me cash. “My name is Ara, and who are you Sir?” “I’m, Pat, Pat Allor.” He must have detected my surprise, because he said, “You are trying to raise money aren’t you?” “Well, yes... usually it's through the website... but this is great, THANK YOU!" I then explained that I was there hoping to find some duct tape. “Now what would you need a piece of duct tape for on a rig like that?”

I explained about the problem with the trunk so he took me inside to get some duct tape, but it turns out he didn’t work there, he was just stopping in there on his lunch break. He took a look at my broken latch and figured he might be able to fix it at his shop which was just down the road a couple miles. I figured I had nothing to lose so I headed over to Tri Rivers Collision and Pat and his colleague, Dave Cooksey, took it apart and messed with it until they got it working again. They aren’t quite sure why it stopped working and they don’t think their fix is permanent, but it is working for now. Pat helped me get all suited up again, as well as tightening the strap on my helmet, and I was off.

Now here is when things started getting weird. The nav had me traveling south, but I knew the bridge was north of me. I have the settings to take all back roads, so I thought it was possible I needed to go south for a bit to meet up with some other road that would take me north, but it was carrying on for just way too long. I stopped a couple different times and expanded the map and it was in fact taking me up to Sault Ste. Marie, so I tried to chill and just go with it, but again, I was heading farther and farther south and it was getting later and later in the day.

Finally, I was getting too exhausted to carry on much more, and if I had to I was just going to get on the real highway and get going north. So, I called my buddy Jim Picard and asked if he could figure out why the nav was taking me the way it was. It didn’t make any sense to him, and the bridge was now about fifty miles behind me. I asked him to give me an address at the base of the bridge and I would put that in the nav and start over. This managed to get me heading north and moving toward the bridge.

Mackinac Bridge, a.k.a. "The Big Mac"
Image taken from prklevans.wordpress.

Once the bridge was in sight, or the tips of the top of it, I pulled over and turned the camera on because I didn’t know what the traffic would be like once I got closer. Now for months everyone I asked told me no matter what I do, don’t drive on the grates on the bridge and I would be just fine. Well I ended up at a peculiar on-ramp, and I couldn’t figure out if it actually went onto the bridge or not, so I just jump on it and suddenly I'M ON THE BRIDGE!!!!

Mackinac Bridge (pronounced "MACK-in-aw")
Image taken from yoopersteez.com.

There I was, it was actually happening. I didn’t see the grate that everyone was talking about so I was kind of puzzled, but being on the bridge was glorious and beautiful and fun. I was rolling along in the left lane enjoying the view when suddenly just ahead, about forty feet in front of me, was the grating I'd been hearing so much about, and to the right -- was a truck going about 15 miles an hour. Fifteen miles an hour, especially in the wind, is not a good speed for me, so I had to pass him -- but I had never passed anyone before and I had to pass him before the grate, aaeeeiieieieieieie!!! I just made it.

So, I’m cruisin' along the beautiful bridge and it is like I am flying over this huge expanse of water. It was exhilerating. "Absolutely brilliant!" as Ewan and Charlie would say (Long Way Round). I screamed and hollered with delight the whole way over and then.... there was construction and they funneled me over to the grates!!!!!!

I shouted, “I’m glad I didn’t know in advance this was gonna happen to me. I’m just gonna have to pray that my Piaggio MP3 is gonna keep me safe.” It did in fact pull and lurch one way and then the other with no predictability, but I relaxed into it and I was okay. I just treated it like I treat the rough winds. I think I rode the grates for about a mile or so and then I was back on the pavement for another mile and then it was over.

Once on the other side, I attempted to put the final destination back in the nav but it gave me the same confusing error it had given me that morning, saying the route was too long to calculate. Well it turns out there are two Days Inns, both in Sault Ste. Marie, one in Michigan and one in CANADA! So the nav had been trying to take me on some crazy roundabout route to Canada earlier in the day - ack! Well... I won’t fall for that one again.

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!

Night One: Sleeping On A Sub!

USS Silversides. Decommissioned sub, museum, and place to lay your head,
in Muskegon, Michigan. Image from glnmm.org.

USS Silversides at the Great Lakes Naval Memorial & Museum

Well it's the first night of my Midwest Training Tour and I'm spending it bunking down in a submarine, a real submarine! The USS Silversides, commissioned December 15, 1941, just 8 days after Pearl Harbor was attacked. To get the lay of the land (so to speak), I took what was without question the coolest tour I’ve ever been on!

Electric Room.

But wait -- first let me make something clear: I’m really not into war. I’m freaked out by the Bomb, internment camps, all that stuff -- but seeing the movie in the museum here, and experiencing the hour-long tour of the sub itself, I certainly got some insight into the culture of that time and a sense of how life was on a U.S. sub.

Some of my sub buddies from Boy Scout Troop 264.

The tour I took was lead by Gary Reynolds and joined by Retired Officer Dan, with Boy Scout Troop 264 from Griffith, Indiana. It began with a solemn ceremony in which the Boy Scouts (guided by Gary) lowered five flags, appropriately folded them and handed them off to him with a salute. I don’t need to have served in the military to have been touched by the honor of it.

An underwater Underwood.

The tour itself was amazing! It included information about how submarines work, the military practices on the ship, the history of the patrols made by the USS Silversides, and the stories of some of the men that served on this ship. It was honestly fascinating. Here some of the interesting tidbits I learned:

Burial at sea aboard the USS Cobia, 1945. Image from ussflierproject.com.

• How was a person “buried at sea”? The body was wrapped in a tarp and weights were added to prevent the enemy from finding it, giving away the location of the ship. A special ceremony would be performed with all officers on deck, in uniform. The body, with a flag draped over it, would then be placed on a board. The board would be tilted so the body would slide out from under the flag and into the sea, leaving the flag behind.

• Mike Harbin, Torpedo Man Third Class, was the only serviceman killed on the Silversides. He was hit by enemy machine gun fire on her first war patrol in May of ‘42. Rumor has it that his ghost still haunts the sub. (Boy Scout Collin explained to me that the ghost usually appears early in the morning or late at night, when you feel the hairs on the back of your neck stand up or a rush of cold air; he thought that with all of us on board there was probably too much activity for the ghost to appear tonight.)

• The propellers are called “screws.”

Ward Room that once served as a makeshift
Operating Room. Image from ussflierproject.com.

• A ship’s pharmacist, Thomas Moore, with only improvised instruments (he used bent spoons as retractors) and an anatomy book, once performed a successful appendectomy on the table in the Ward Room. This scene was reenacted in the 1943 movie Destination Tokyo, starring Cary Grant.

Lobby Card for Warner Bros.' Destination Tokyo depicting

the appendectomy scene. Image from carygrant.net.

• The nickname “Pigboats” came from the odor that resulted from the fact that purified water was used first for the engines, then cooking and hand-washing, and then bathing. Officers were allowed a shower once a week, but the enlisted men could only shower once every 13 days. (Scouts Daniel and Anthony helped me with fact checking on this one.)

• This sub had its “screws” removed because the U.S. has a treaty with Canada saying there will be no active warships in the Great Lakes.

• The USS Silversides is 80% active. The engines are run on Memorial Day to honor the 3,600 men who died on U.S. submarines in World War II.

• On a side note, I just read that starting in 2012 women will begin serving as official crew members on U.S. submarines for the first time.

Something else I got from this visit: I guess I'd never heard much of Roosevelt’s “Day of Infamy” speech, beyond that opening declaration, until seeing the museum’s movie. It becomes clear why so many young Americans were motivated to enlist, and risk the ultimate sacrifice.

In FDR’s own words:
“I believe I interpret the will of the Congress and of the people when I assert that we will not only defend ourselves to the uttermost, but will make very certain that this form of treachery shall never endanger us again...we will gain the inevitable triumph - so help us God.”

The crew sleeping quarters; bunking down with torpedoes.

Throughout the tour Gary repeated the average age, 18-20, of the young enlisted men who served on the USS Silversides. Their bunks lie in rows alongside the torpedoes. I could not help but think about our young men and women now serving in Iraq and Afghanistan -- the intensity of what they are called to do, the risks and challenges that they bear, and the ways that it changes them forever.

We only just started this journey and already I'm finding inspiration all around me. I can't wait to see what the road will bring next.

My New Best Friend

I’M ECSTATIC! Now that is a very strong word, so you may think I’m exaggerating -- but no, this is the real deal, full on, over the top excitement!! And what’s crazy is, I’m excited about a product. Not my typical area of intense exclamations.

Before we go any further, I should warn you, my faithful reader, that this product I’m about to rave over relates to a specific bodily function, and I know that “nice girls” are only supposed to talk about bodily functions in private (if at all), but this product is so remarkable, even life changing, that I’m willing to talk about it -- or rather scream at the top of my lungs about it -- regardless of whatever “nice girl” rules I might be breaking.

So, what’s this all about? Well.... peeing. Yes, this is a post about peeing. But hold on for a few more paragraphs and I think you’ll be cool with the topic, and the aforementioned product, and even afore that, the ecstatic part. Just hang with me.

Here’s the deal: I take a medication that forces me to drink somewhere around 7-8 LITERS of fluid a day... notice, I didn’t say glasses, I said LITERS (that comes to about 2 gallons a day), and that number can go up in warm weather. This presents a problem for servers in restaurants who swear they just filled my glass literally 6 seconds ago, but that is a story for another blog. The primary fallout is that I have to pee OFTEN. There is no old fashion version of a road trip where the Dad’s says, “You’ll pee when we get there,” and barrels off down the highway. Oh no, anyone who has traveled with me since I’ve become disabled knows that I’m a constant interruption on the road. This also means when I have to pee, I really to have to go, because I’m likely holding more pee at that interval than most people pee in a whole day. As a result, I can’t say (as many discerning women might), “Oh, that gas station was just too disgusting, I think I’ll hold it until the next one.” I don’t have that luxury. I’m trapped.

Now, we move on to my next challenge. I don’t have an abdomen. For those of you who are new to this blog see (Backstory); all the abdominal musculature was removed from my body, so I can’t do the hovering tricks or other antics that girls use to avoid sitting on a scary toilet.
Again, I’m trapped. If we add the complication of squatting when camping which for me is extremely difficult if not impossible without making a mess out of the whole deal, well, I have some peeing issues to say the least.

As I’ve been preparing for this trip, I’ve been worrying about how I was going to manage having to pee in the outside world for 50 days straight. Now, I had a vague memory from when I was about 12 or so, of there being a plastic sideways funnel for just such a purpose in the Whole Earth Catalog -- but I’d never heard or saw of anything like it since. When I presented my growing concern to my friend Liz Cross, who had just given me a hardcore Camping 101 lesson the week before, she set to work trying to resolve this problem. I am thrilled to say it was she who found the miracle product.

Before I introduce it to you, I just have to say I think that this marvel of ingenuity and convenience is the greatest mechanism of liberation for women since The Pill (hence my use of the word ECSTATIC! at the beginning of this blog)! As soon as it arrived I tested it, and I can honestly say there was not a single drop of dribble-age the very first time, AND I barely had to move my drawers! I’m telling you it is just that simple. Okay, take a look at the video:



A single pack of 5 only costs $4.95. And the thing is, one doesn’t need to be going on some big adventure to make use of this amazing little product. For me, it’s life-changing, a whole new way of thinking about peeing in the world! There are plenty of times when I don’t want to sit on a toilet in a restaurant, gas station, department store, I could go on, but I’m sure you get the the idea. And the cool thing, I was all crazy evangelical BEFORE P-Mate said they were going to sponsor Off The Map. This is an honest to goodness partnership!

The P-Mate is truly my new best friend!

pmateusa.com