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.