Amazing Together

My husband Michael and I are opposites in styles and talents. Although he is always quick to add that we share many values and have cross-over interests. But the truth is, we are as different as two humans can be. Over the last sixteen years, we have managed a few big projects together — all of them under duress except the building of our home. Otherwise he runs his half of the world and I run mine. So, I was surprised a couple weeks ago when he jumped in without being solicited, and helped me to get my Vespa Voyages project off the ground. He bought my url, set up my Facebook group and such — I figured he was just being my tech guy. We had our first chance to really talk about the logistics of the trip during our drive to Chicago the other day.

The truth is, he has a motivation for helping me on this project, besides my being his wife and all... When I was just out of the hospital 10 years ago, and so sick that I could do nothing but lie in bed with a laptop on my knees, I drafted a book about my two-month experience in the ICU: the induced coma, what I was able to hear and understand, the delusions, my perceptions, the pain. Besides my husband, there are a number of people that wanted that book published, but when I was finally able to leave the house and go out for anything other than a trip to the doctor or pharmacy, I was done with that book. It did not matter that I had nearly finished that draft. I was as over it as anyone can be, and I believed I deserved a life. I hadn't figured out yet how to have one, but I wanted to spend every second of every day working at moving forward, rather then bemoaning the horrors of my time in the ICU or my struggles thereafter.

When I got the idea to do this trip and chronicle both my preparatory path before the tour and then the tour itself, somehow for me the book came back to life. I was willing to consider the book as the first half to having figured out how to live despite the issues. Now, back then, the issues were practically insurmountable; now they are just ever-present challenges. Life is bigger than the hassle and the pain, as I hope my chronicle here will show. This is what Michael wants told. He has been my dedicated companion through the hell and in creating an integrated life. He just wants the already-written book to be published. I hope that what I write next will be more compelling, but that's just me.

That brings us to the drive to Chicago.

We were driving from our home in Berrien County, Michigan to Chicago. Road trips have always been our best time for working through problems, filling each other in on information and stories, and brainstorming. Although this is our routine way of getting things done, a few trips have been more memorable than others. This one felt electric. I started by telling him that I'd begun to think about the technology for the trip — him being my tech guy.

I was firing the questions and he was firing back answers. Will my MacBook Air be too fragile to take? "No, it doesn't have moving parts. It is definitely the one to take. Either that or one you can drop from a cliff [the Panasonic Toughbook], but we already have the Air."

We talked about the satellite phone ("sat phones," as they're called) packages I found. We discussed inexpensive mini video cameras for diaries and how I might upload them to this blog on the fly. We talked about back-up drives and Internet storage.

Quite a number of people have recommended different cameras. Realistically, I know I don't take many pictures when I am traveling. I want to be in the experience and not interrupt it to pull myself out to record it. I also hate posing people, "Hey everybody come here, we are going to take a picture!" I just can't do it, so I didn't want to buy a particular camera for the job. We decided I could take Michael's Powershot for any snapshots I might want to take. (I pray I don't drop it in a river somewhere!)

We are going to look into a digital recorder and helmet mike for me to record my thoughts while on the scooter. Drives, backups, cloud storage, redundancies, paper journals, and also what software to use as I prepare — all these little details need to be considered and explored. I've been taking notes with TextEdit, and it is already getting chaotic. I'm trying to make sense of the gear I may need, lists about differing laws in the different countries, notes, sources.... Should I use ProCite which I have some experience with, or the new streamlined Google Notebook...

I tend to be very independent in the direction of my projects, so it is surprising to see how easily Michael has been able to jump in on this project without any direction from me and not ruffle my feathers. A few weeks ago Michael, set up a Facebook group for Vespa Voyages and I didn't think much of it as he was providing his usual tech services, but during this drive I could see that something more was happening. The whole sum is greater than its parts thing. Well, I'm beginning to believe we are going to see it here and I don't yet know the outcome. There is no way to know if the two stories will fit together as a unified work. His dream for reviving the first book may not happen, but for now he is happy to have it back on the table. As for me, I'm never better than I am when backed by Michael. Now it gets exciting.

The Workouts. The Food.

I need to get fit. I've fought fatigue since the ICU. My endurance has improved over time but fatigue hasn't gone away. If I exert myself one day (standing too long, walking too far, riding a scooter for twenty minutes, getting too cold) I may find myself in bed for several hours or a day or two to recover, depending on how bad the "offense." My hope is that if I gradually and mindfully work to increase my endurance, I might be able to extend my reach. Walking, the elliptical machine, and swimming are all I am allowed to do. Swimming can't really be done without an abdomen. Pandora.com set to Sean Paul is my friend on the elliptical.

I'm fortunate in that I have an old elliptical by our bathroom and it overlooks the marshland in front of our house. The first month was agonizing. Starting out with 5 minutes, then 7 minutes, for a couple of days, then working up to 12 minutes, with several day breaks in between. When I finally made it to 20 minutes, even at a slow pace, I was down for five days after. It is three months later and I'm able to work 20 minutes every other day for a few days before I break for a few days.

I so desperately want the steady pace required for results. At three months in, I feel like I should have it by now. But I'm doing the best I can and I am grateful that at least some progress. So I might get it yet.

And then there is the diet/nutrition/weight --- ugh. I have a reputation for eating small portions, so I figured if I just cut back a little more and recorded what I ate I would lose weight for certain. Not so. After two months I went to see a nutritionist and was put on the hideous counting calorie plan. To be honest, I couldn't do it if I didn't have help from Michael with the looking up, the figuring and the counting. After 10 days on this plan I've finally lost two pounds. I have another 28 to go. This isn't going to change the distorted shape of my body, but I will no longer be dragging around weight that isn't working for me.

Workout programs and new eating plans are supposed to have slow results, but unfortunately for me they are even slower. During the presidential race I had a button that said Obama = Sanity. Although it doesn't say this exactly it conjured up an idea for me about how Obama was playing his own steady game, doing what he knew was right and not being bandied about by all the chaos around him. I put this button on my elliptical as a reminder that is is my game. I've set the course and I set parameters and I'm the one that I decides how I'm going to go about this, but I need to do this from a level-headed place not a crazy-headed let's get this job done head. I know I need to do a slow and steady wins the race, just like Obama. This is not my "natural" or old style, but it is the only style that is going to get me to France or get me home safely.

Is it safe for me to ride the MP3?

Mystery solved.

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

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

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

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



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

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

Medical Team

Photo: Steve Williams: vespalx150.blogspot.com

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

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

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

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

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

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

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

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

Random

I've started reading Lonely Planet's "Cycling France: GPS Coordinates/119 Days/6000 km of Rides." This seemed like the closest I would come to the situation of being on my scooter . . . hopefully cluing me in to the roads I would be allowed or safe to use with respect to temperatures.

Here is some of what I have learned so far:

If one is planning to stay at a B&B in the country it is important to call ahead. If they don't have any reservations they might just pack up and take off, so I might find myself with no place to lay my weary head.

Emergency Numbers are all different in France.
National Emergency: 112
Ambulance (SAMU) ("There is usually somebody on staff who speaks English."): 15
Police: 17
Fire: 18

Even bicycles are not allowed to ride down a one way street the wrong way unless there is a bicycle path. It is illegal (I have a feeling that will count for me too).

Okay, I'm going to cut to the good part. It is recommended that in the country one be cautious about roaming dogs and PIGS. I swear I read that correctly. Sure, I get it about dogs, but PIGS? I have to watch out coming over the top of a hill, because there might be a few PIGS just STANDING THERE! Random pigs! I don't know what to do with this information! It is both scary and amusing, and I have told quite a few people about it. Then a couple days ago, my brother tells me, "Oh yeah, right out there by you that happened, a German Shepherd grabbed a small pig and darted into the street in front of a Harley guy and totaled the dude's bike."

Image courtesy of AP

Apparently, this is a local problem I was unaware of, not just a French one. I still don't what to make of Random Pigs, regardless of where they might appear.

Shocking First Step

Today I called up to the Vespa dealership in Holland, Michigan where I bought my scooter. My hope was to meet with Stew who sold my scooter to me to see if they could support me in finding the unique gear I will need to make this journey. Turns out Stew was gone and hadn't been replaced. I had just spoken with him four days earlier. I was put on the phone with the general manager who reluctantly explained that a decision had come down from on high to close the Vespa department.

He explained that they could get a Vespa for someone who wanted one, they just wouldn't have a Vespa department. Suddenly, I realized this meant that their service was gone as well. When I asked about Aaron, the amazing scooter service person (who brought my scooter back to life after it was totalled) the manager said he was sad to say Aaron was gone as well. Now I don't know what the dynamics are of this decision at Fox Lincoln/Vespa. What I do know is that Aaron was extremely enthusiastic about his job. When I first met him a year ago he told me "I love fixing scooters. This is my passion. There is nothing I would rather do." It is so rare any more to find someone who feels so passionately about their work. I have felt heartbroken all day for Aaron. I don't know where he is or what will come next, but I pray Aaron finds his way into another scooter shop somewhere even if it means he has to pack up and hit the road to find the right job.

As for me, I was directed to Grand Rapids which is two hours away - the same distance as Chicago. I don't know my way around Grand Rapids but I certainly know my way around Chicago. I suspect I know who will win that toss. Grand Rapids is reported to have a great scooter club, so we will see.

Backstory

For those of you who don't know the backstory, in 2000 I was in the ICU for two months. I had necrotizing fasciitis as the result of a surgical procedure to remove an ectopic pregnancy. Surgeons performed daily debridements to remove dead flesh from my abdomen. They did this for three weeks until the 30 muscles of my abdomen were entirely removed. During this time I was in a medically induced coma because the infection was so severe that the medical team believed they needed all of my body's energy to fight it. Every hour in the ICU my family and friends did not know if I would live. When I got out of the ICU I spent another month in rehab which I busted out of and then I spent the next year and a half at home unable to conceive how I could ever do something I believed in again. Six months later I had the largest abdominal reconstruction that has ever been done. This had quite a few consequences.

For 18 months I was suicidal. I could not comprehend how not having the strength to open a can or the endurance to make it to the bathroom more than once in a day was supposed to add up to some kind of life. I'm not saying I had no enjoyment in my life because that would be untrue. But I was struggling to create a way that I could contribute to the world in a meaningful manner. Through several tedious and frustrating years I eventually came into being a new self by combining my skills and talents to work as a director. The truth, however, is that I am able to (do this work) direct, because I am surrounded by professionals, as well as a number of friends and family who jump in at every turn and make me look as if I am doing everything all on my own.

So now the adventure begins. Now I will be doing a real journey, one for which I am not in the least prepared. I will need to enlist the help of strangers in a foreign country. The good news is I love the French. Granted, I was only in Paris eleven days in 2006 but for all the nasty talk between the French and Americans, I love the French and they seem to like me just fine.

I have so much to figure out. I need to determine the logistics of getting my scooter to France. Like any other trip I need to make plans carefully considering my disabilities. I will talk more about this as I begin to plan and prepare. Right now I have it on my mind that I have to figure out if there is some kind of backpack that can be broken down into pieces that would be about 10-15 lbs. a piece so that I can carry each piece into my lodging individually. I'm also thinking about how I'm going to be able to relearn French with the cognitive losses I've had since my time in the ICU.

Now I need to catch you all up. I've been working on increasing my endurance and managing my fatigue for a month now. I have a long way to go. When I first got the scooter last Spring, I found I could ride her for about twenty minutes. Then I passed out for several hours. My hope is that my efforts on the elliptical machine will have me in better shape by the time scooter season begins.

There is a great deal more to prepare for, to figure out and to train for, let's go.

Take Off

An outstanding adventure is brewing in my imagination. I want to ride my Vespa from Paris through Western France and down to Southern France to Nice to explore the Chagall Museum. When I was a teenager I read a whole slew of biographies of artists and scientists and noticed that many of them came into their own around 45. They made their greatest discoveries, created works that were truly unique or found it within themselves to challenge themselves in new and amazing ways.

In my case, the challenge isn't the challenge itself but navigating the myriad residual physical consequences from my two month stay in the ICU in 2000 and the major surgeries that followed. I have friends and family that are horrified that I would attempt such a feat and wonder how they could get me tailed by an ambulance with my surgeon inside. I've been said to be, "unstoppable," "resourceful," "passionate," and again let it be said, "unstoppable!"

The truth is no one is more concerned about my safety than me. It has been ten years and I've learned to adapt to a number of my disabilities in such a way that they have become hidden - sometimes hidden because my husband or a friend jumps in and helps me. This adventure is going to require extensive planning. The biggest factor may be physical training, to see if I can increase my endurance enough to make the ride possible. I will need to figure out a way to pack gear that breaks down so that I can move it and not exceed my 10-14 pound carrying limit. I will need to practice rides of various durations here to see if I would even be able to count on making it to a specific location by a reservation time. In my current life managing fatigue is an ongoing balancing act.... I will need to know in advance exactly what those limits are.

If I could learn French before going it would make the whole experience not only easier, but so much more enjoyable. This may present the biggest challenge of all. Although I seem normal to most people, my closest friends are acutely aware of the cognitive losses I've been struck with. The most maddening is one that happens to the elderly which is called lack of "word recall." It is when you sort of know the word, but you just can't think of it. This happens to everyone sometimes and me quite a bit. This makes learning or relearning a language very frustrating - but I haven't given up yet.

I have a lot to figure out. This is why I'm considering this Vespa Voyage for April or May of 2011. My plan is to record the steps it takes to make it to the voyage which may end up being harder than the actual challenge itself -- we don't yet know.

I would love to have you with me on this journey, but if you would prefer to "unsubscribe" from the email list just send an email to ara@vespavoyages.com and I will remove you, for the rest of you let's go!