Last weekend I returned to Ragdale. I was last there for a 2005 residency with a primordial project that’s now a book manuscript called Reconstruction: First a Body, Then a Life. I thought at that time that the whole narrative would be about my stay in the ICU and would focus on my delusions during my medically-induced coma. Although that original narrative is an important part of the story, the story was really not complete until after my scooter journey last year. That journey didn't give me exactly a Hollywood happy ending, but it certainly left me with a newly constructed life.
Ragdale worked her magic with me once again. When I was there in 2005, I wrote about the two hallucinations that had been hardest to articulate; they required my complete and total concentration. Unlike the rest of the book, these two vignettes remained almost entirely intact after the second draft editing. At this last StoryStudio retreat, I successfully reworked a section of the book that involved translating six weeks worth of emails into narrative and then incorporating missing story elements. I wasn't sure it could be done and was ecstatic when I did it!
The writer’s retreat at Ragdale last weekend was sort of a book-end experience, as we are completing the manuscript that started there six years ago, eleven years after my exit from the ICU. The decade between these visits (along with the ever patient editorial guidance of my husband Michael) grew me into a real writer.
My illness took away my physical ability to perform my choreography and photography. Trapped behind my laptop, I began writing by default. As I prepare this project for a literary agent and publisher, I have been forced to reflect on the last few years. I was surprised to realize that… well, I’ve been doing more writing than I realized. I have written three different blogs (79 posts in all), an article in GET magazine, and an essay in a literary journal.
While back at Ragdale responding to a countless variety of writing prompts, I discovered that I can now write about anything. I had a chance to see that, as a writer, I have a unique viewpoint. I tend to write about things that have meaning for me, things that I hold sacred and the psychology or relational underpinnings of experiences.
Now, my dear followers and friends, you can help me with the next step. I've done my homework and decided that the Liza Dawson Literary Agency is the one for me and this book. So, if any of you know her or know anyone at her agency, I'd sure appreciate a proper introduction. This is important or I'm going to be reduced to trolling the sidewalk outside her office wearing a sandwich board.
Times are hard. This isn't new information. The weekend I returned from my scooter tour last summer, our firefighters were camped in several intersections, raising money for their local charity. As I was stopped at the light, I scrambled for a couple dollars and opened my window. I asked him, "How is it going?"
The firefighter paused and then said, "You want the truth, don't you?"
"I do, actually."
"Well, we aren't doing a tenth of what we did last year, and that doesn't even compare to what we did the year before."
I understood. I didn't raise even one percent of what it cost me to do my Midwest Tour. Without that prep tour I wouldn't have the experience to one day take my dream ride across France, ending at Sacre Couer in Paris (add link to previous blog). I certainly wouldn't have been physically strong enough either; my body had grown progressively stronger over the course of the tour. Although I did my 50-day Midwest tour solo (with the exception of my three days in and around St. Louis), we knew that if I ever became too fatigued to continue my husband Michael or my friend and colleague Dante could grab my Tahoe, with its specially designed scooter rack, and come pick me up.
So now, if I want to continue, I need an angel to cover the Midwest tour and front the money for the French tour -- or I just have to wait. I'm now editing a book about the Midwest tour and all that led up to it. Ten years ago, when I got out of Intensive Care, I was too sick to do much other than use my laptop in bed. It took a decade's journey back to health, including my scooter journey, to return me to some semblance of a normal life.
I am insanely grateful for the wild and wonderful journey this past summer, to every person I spoke with at a gas station, every person who pulled over to make sure I was okay when I was just getting some water, every person who shared the story of a loved one who meets the challenge of a hidden disability (or doesn't), and to the few special people who took me into their home along the way. Of course I’m especially grateful to the St. Louis Scooter Club, and all the motorcycle people on the road who treated me as one of them, regardless of the fact that I was a chick riding a three-wheeled scooter.
I will continue to ride around Southwest Michigan and Chicago in 2011 and share my stories here and @offthemap_eu. So keep an eye out for more news about my riding life, and upcoming news about my forthcoming book and all the rest of life's adventures.
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!
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.”
“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.
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.
I knew yesterday was going to be tough. I needed to get from Iron Mountain, Michigan to Oshkosh, WI. It would be about 140 miles, which is a longer stretch for me, and I would be facing more rain without having solved the fogged goggles issue (the potential wonder wipes were supposedly awaiting me in Oshkosh). I’d also heard that there would be street closings once I got closer to Oshkosh, because torrential rains had caved in some of the roads. I would need to be fairly well rested to manage these challenges, so I didn’t feel I could get up super early to beat the rain, either. So, that’s how the day looked from the onset.
Before loading up, I went to the breakfast area of the hotel and took a quick peek out the window, just to check on my scooter. I noticed a group of Harley riders getting ready to leave. Now, I had been told, before I started this trip, to be wary and steer clear of the Harley riders in Wisconsin. I was told in Southern Wisconsin there are even parking lots specifically for American-made cars and motorcycles, and that there would be little tolerance for me and my Italian-made Piaggio. In Iron Mountain, I was just a few miles away from the Wisconsin border and the home of the Harley Davidson plant. But I figured, I’m doing this trip to talk to people, so I grabbed my first bag to load and headed outside.
"You can fit all that stuff on that scooter?"
When I began loading my scoot, I was approached by one of the group of the five Harley riders. We got talking, and she was asking me about my project, and before long, they had all gathered around us. They were asking questions to get caught up with the story, and then all of us were discussing the meaning of Hidden Disabilities. We talked about my challenges after I left the ICU, and soon they were sharing about the life of someone close to them who’d had similar challenges when she left the ICU, as well as stories about other people they knew who has faced health issues. We talked about all the times the general public just wasn’t able to understand that someone might need more time to finish a sentence, or cross the road, even though they might look “normal.”
It was a very engaging conversation, and the first time on the tour that I was provoked to talk about the cognitive challenges that I was left with from my time in the ICU: initially being unable to read even a children's book, how I still have problems with word recall and take much longer putting sentences together than I had been used to. We all agreed that giving a person just an ounce of slack can end up making a world of difference. It was a great talk. They offered to put my saddlebags on my bike, which I’d mentioned was the toughest part of my day (the bending over and wrangling them onto the frames puts a lot of strain on my back, which was already hurting me). So, they kindly put the saddlebags on, we said our goodbyes, and I stopped in the breakfast room to slam a glass of apple juice and wolf down a banana. I was ready to hit the road.
....then, just as I stepped outside, all five of them walked toward me with this air of serious conviction. I thought to myself, “My God, what have I done?” They crowded around and the biggest of the guys stopped square in front of me. He said, “There is a tradition among bikers...”
Let me stop right here. I thought long and hard on my ride down to Oshkosh about whether or not it was even appropriate to share this with you. I looked on the Internet and there is quite a bit written about this tradition, so it isn’t the most secret of traditions, and I’ve decided that sharing this story with you, my faithful readers, is more important than whatever hush might usually surround this tradition, and I hope I will be forgiven. Back to the story...
So this very big, tall Harley rider opens his huge hand, and he’s holding a little black velvet pouch. “There is a tradition among bikers,” he says. “You see, you may not know this, but evil spirits sometimes chase bikes, motorcycles.” He empties this pouch in his hand and there is a silver bell. I look up at all of them. I’m holding my breath and trying not to cry, to somehow be a big girl motorcycle rider despite the fact that I’m a little MP3 scooter rider, as I look into all of their faces.
“You see, the evil spirits get caught in the bell and they spin around and fall to the ground and make a pothole,” he said. “It works better if someone gives you the bell, and we want you to have this. We want you to be safe.”
Somehow I managed to keep the tears I was holding inside my eyes, as I held my heart with my right hand and took the bell with my left.
My new (and first) Guardian Bell.
“I don’t even know all your names... doesn’t one of you have a card?” I just couldn’t imagine not being able to acknowledge them or ever make contact with them ever again.
“We aren’t business people,” said one of the few of them whose name I did know. “Well, at least tell me where you are from,” I asked. “Beaver Dam, about forty miles North of Milwaukee.” I felt like a character in a fantasy novel, being given a magical object from the High King and his Wise Advisors. And then, they disappeared, and I was left to continue my journey.
Ara Lucia Ashburne is a writer, artist and director with physical and hidden disabilities. She is booking a reading tour, featuring selections from her narrative (August 10 – November 1 2011). She is also an advocate for International LGBT human rights, a social media votary, nerd lover, and food sensualist.
She divides her times between Berrien Springs, Michigan and Chicago, Illinois.
You can also find her on her Facebook page at Ara Lucia Ashburne and on Twitter at @Ara_Lucia.