4:21 P.M.
There's been a change in plans. The UW IPE is ordering me to go home.
Of course, I don't want to go home, my professor doesn't want me to go home, my parents don't want me to go home, and the other kids on the trip don't want me to go home, so I've been put in a very unfortunate situation.
Sunday was a doozy. It was a pretty chill day in general, except I had two seizures in one day. I'm fine - one occurred in the shower and the other occurred at the dinner table - and the only injury I have is a slightly gnawed tongue from the second one, which isn't even that bad. My mom is on her way to come and pick me up... I believe she is flying to Guam right now.
This is too bad... I've put a ton of effort into this course and I never foresaw not being able to finish it due to a cluster of seizures. Although I haven't had two seizures in one day, I have had two seizures in one week, so something like this is not unheard of. Nobody who is making the decision has asked to talk to me, and although my teacher has been given orders, he has not had the time to express his opinion, nor have any of the other students who witnessed the seizures and want me to continue staying on the trip.
I don't believe hope is lost. Publishing a brilliant scientific research paper whilst working my way through all this crazy UW bureaucracy would not only be a win for me... it would be a win for epileptics everywhere. You can't let epilepsy prevent you from doing the things you love, but I cannot prevent other people from trying to do so in the name of safety. If they were truly concerned about safety, they'd ask how safe I feel and my plan for these next few weeks instead of forcing me to sign an emergency medical evacuation form. I didn't sign it... the agreement said that "I have consulted appropriate legal counsel prior to executing this Release Agreement," and I don't have time to find a lawyer in Micronesia.
Yesterday was interesting. At first, the UW IPE said that I was not allowed to leave the hotel for 24 hours when it was perfectly safe for me to do the day's activities (I may or may not have participated in all of them... I still had a bit of a headache), but then they told me to go to see a certain Dr. Bryan Isaac in Kolonia to run some blood tests and take my weight. Me and the trip co-leader and a graduate student in Oceanography, Ashley, set off on our adventure to go find this man. Ashley was supposed to be leading students on a sampling expedition in the Kapwalap Estuary, but she stayed behind with me instead.
First, we went to the Genesis hospital, which is the largest private hospital in all of Pohnpei. They said that they didn't know a Dr. Bryan Isaac, so we headed over to the state hospital across the street (I don't understand why they would have two hospitals affiliated with different organizations on different sides of the street, but whatever works, I guess). When we asked the guys at the front desk of the state hospital where Dr. Bryan Isaac was, they laughed at us and said "Bryan Isaac?!?!? This is the STATE hospital! trolololol!"
Thankfully, a kind Micronesian woman that we knew was in the hospital, and she led us to Dr. Bryan Isaac when she could. Dr. Bryan Isaac was a doctor for a family practice. We sat in the waiting room and waited for the doctor, who took a blood test and my height and weight. I guess he was looking for anything terrible in my blood or to see if I had suddenly ballooned up to 243 pounds. In any event, he was a very nice guy. He had a big, bald head that looked as though it could be used as some sort of wrecking ball and these thick glasses. When the blood tests came back, everything was alright, except one thing.
The potassium levels in my blood exceeded the maximum value his instrument could read. This means that he likely lysed the blood cells in the preparation. Therefore, he sent us to the state hospital to get another blood test and an EKG.
The state hospital was unlike any state hospital you would find in the U.S. It was crowded with people, with huge lines and not enough chairs. Since we were told by Dr. Bryan Isaac that we needed to get some tests done, we headed to the place where tests were done and waited in line. When we finally got to the front of the line, the man in scrubs looked at Dr. Bryan's notes and told us that they were incorrect. We lacked a test form.
We called Dr. Bryan. The last thing we wanted to do was go all the way over to his place and lose our spot in line. He told us that we needed to go to the X-Ray department. So we went to the X-Ray department, and to our relief, we had finally reached the right place. A big, beefy, cheery man led me to a room, put some stickers on me, and gave me an EKG. This was the first thing that had gone right. My EKG looked normal.
Then, we went back in line to wait for a blood test. The wait wasn't horribly long, and I got my blood taken safe and sound. But the worst part was yet to come.
The blood-takers told Ashley and me that they would scan the results over to Bryan Isaac as soon as possible. "Great!" we said, and we headed back over to the kind, stumpy man with a head like a wrecking ball. He told us that the hospital hadn't faxed over the report yet, so we waited.
And waited.
And waited.
After two hours, the results were finally sent in. Everything was fine... except my potassium and sodium electrolytes were a little low. So the doctor prescribed me a banana and a teaspoon of salt, and we were on our way.
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I'd never really thought about how epileptics were treated and about being some sort of activist. Now, I can't think of anything else. This whole experience (I don't want to talk about the week before the trip, but I felt manipulated, demoralized, and defeated, and it's a wonder I gathered up the strength to even go on this trip in the first place after that week) has really made me think about the way we treat people with disabilities. Yes, I have epilepsy. Yes, I risk death every day (my first seizure on Sunday took place in the shower, but I had turned the water off while I was scrub-a-dub-dubbing, and this simple action could have prevented a much worse outcome.
But I must live my life. And the people on this trip LOVE me here. My mom flew all the way from Seattle to San Francisco to Hawaii to support me on this trip, and now she is on the plane to Guam. After an overnight layover, she'll head to Pohnpei and stay in the same hotel as me.
The students won't, the teacher's won't, and I won't go home without being heard. You can't always win, but you can always try.
Fingers X'ed.
Charlie
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