Coming back to the US (Feb 2010) was hectic and stressful. I was a year early. I had no plans. That year was supposed to be spent in Kenya continuing teaching but also figuring out what I was going to do when I returned. At the end of service Peace Corps helps you take your GRE, has readjustment classes… I was not prepared. I was also overcoming major health anxiety. Because of the seizure (see that story here) combined with other common and often sudden PC aliments, I had lost all trust in my body to tell me when I was sick. (I was at the beach all day before I had the seizure – I felt fine!) Peace Corps gave me a medical pass to speak with a psychiatrist about my issues but I was so overwhelmed with returning that it expired before I really realized I needed it. I began having these “de-ja-vu” moments. I would be reminded of something and my brain would fixate on trying to figure out where I’d seen it before, a metallic smell would get stuck in my nose, and I’d start to feel nauseous - I blamed it on the stress. It was almost a year before I became determined to do something. I headed up to Martha’s Vineyard in Feb of 2011 to live with my aunt and uncle and learn to weave from my great aunt. While there, I also got a job at the high school working in the Special Ed department. I went to the World Domination Summit and became motivated and determined to work on Guerrilla Smart. Things were going well. There were no “deja-vu’s” until it got close to the end of the school year and I had to decide what to do next. My aunt got a big placemat order and needed both looms so I could no longer weave. I needed to make a decision, and fast, but what would I do back in Orlando? On the last day of school I woke up in the hospital.
I remember nothing. My aunt and uncle woke up to something thumping and found me having a seizure. I was taken in an ambulance to the hospital. Supposedly I fought with the paramedics. When I woke up I was in such a state of shock I couldn’t really explain anything. My head hurt, I’m sure I hit it when I fell but no one at the hospital ever asked. The doctor told me that the explanation for my seizure in Kenya (an unknown infection) "makes no sense" and told me to see a neurologist when I got back home.
It was actually a nice road trip with mom back to Florida. But of course, the health anxiety that I had started to get under control completely re-manifested itself. I shut down for a while. I went to see a neurologist. Explained what had happened and decided to talk about the “deja-vu” as well. He said, “two seizures, you have epilepsy, you’re going on drugs.” He seemed more interested in the fact that the umbilical cord was wrapped around my neck when I was a child and unwilling to say that anything that happened in Kenya could have caused me to start having seizures. He explained that the “deja-vu” moments were actually what they call “petite mals” or “simple partials” – basically a mini seizure. He prescribed a drug and went into a speech about how “it’s not as bad as they say… babies are usually fine… babies… babies… babies..” I insisted that I have no plans to get pregnant any time soon but he didn’t listen and went on with his lecture. It made me suspicious but I let him schedule me for an EEG and an MRI (remember the 2 MRIs I had in Kenya were said to be normal.)
I went home and looked up the anti-convulsion drug online. Turns out, it is known for causing cleft pallets in babies and epileptic women usually go off of the drug (under a doctors care) when they want to get pregnant. (Hmmm!) And, it is also known to counteract birth control – something he knew that I was on! (WTF?!) So, yes, without knowing that I could have continued taking birth control thinking I was being responsible, started taking this medication and could have gotten pregnant! Isn’t that something a doctor is supposed to tell you! And then my baby could have been born with a cleft pallet!
I learned that this drug is also used for bi-polar disorder, which made me even less happy about all the side-effects this drug could have on my body and my mind. I decided NOT to take the medication. I returned to the doctor’s office for the EEG and also went to the scheduled MRI. At my 1 month check up I told the doctor that I had decided against taking drugs. He immediately went into defensive mode. Told me, "You WILL have another seizure" (it goes down to 60% chance on meds) and "NO doctor will ever approve you to drive if you're not on medication." He also told me he would no longer be my doctor. (He’d already lost my trust but now I knew he was a complete asshole! He did not seem at all concerned with the idea that at age 27 learning you are epileptic could be traumatic. I got the feeling that he might have some sort of agenda to connect epilepsy to umbilical cords.) According to him my EEG and MRI had turned out normal but since I was no longer his patient I picked up my file on the way out of the office.
At home I read over my MRI where the technician clearly states, “There are a few punctate areas of abnormal signal intensity in the centrum semiovale and corona radiata of the frontal lobes, the etiology of which most likely is ischemic (? migraine disease or vasculitis).“ Whatever that means! But I read that as being NOT normal, so I took this to my primary doctor and together we applied for worker’s comp through the Federal Employee’s Compensation Act since it all started in Peace Corps. When the seizure on the Vineyard happened, I was still covered by Peace Corps insurance but it expired shortly after and my new insurance would not cover a pre-existing condition. Luckily, my claim was accepted by FECA and anything seizure related will be covered. A huge relief!
However, my emotional struggles were not (and may never be) over… I went through a period of screaming and crying about how I was broken and needed to be returned. I became very bitter - Casey Anthony was getting away with murder and I had permanent brain damage because I volunteered in Kenya! I had just gotten a new car but no longer had the right to drive. To top it off, my driver’s license actually expired that summer so, instead of admitting the seizures to the DMV (in the midst of me accepting it myself), I gave up my license completely and asked for an ID card. But the biggest thing was that I had to figure out how to change plans for the future
I had visited Portland a few times - for my 27th birthday (to make up for my 26th birthday in Nairobi hospital getting a needle in my spine) and for the World Domination Summit. I knew I wanted to move here. But, my idea had been to drive across the country with a friend and Fiver (my dog), maybe stop and camp a few places, and visit a few destinations on the way. No longer a possibility. But staying in Florida wasn’t really an option either. You can’t get around in Orlando without a car. I don’t qualify for disability. From what I understood, I couldn’t get unemployment in Florida either. By deciding not to go on nasty anti-convulsion/ personality changing drugs, I was screwed. Portland became even more necessary but, a bit bittersweet (now it wasn’t just my choice – I needed the public transportation.)
So, now I’m in Portland. I’m still determined not to take daily meds for something that doesn’t even happen once a month (partials) and full seizures have only happened twice in 2 years. Although my time in Portland has been extremely stressful searching for an apartment (signed a lease today!) and a job, I’ve only had one “deja-vu” episode but it was the worst one I’ve ever had. I believe the brain damage occurred during the 3 weeks it took me to recover from the lumbar puncture (for 3 weeks it felt like there was a vice grip wrapped around my head like a head band) but there is no way to prove it. In 2 weeks I have an appointment to see a neurologist in Portland. I’ve heard good things. It shouldn’t be hard for her to keep my trust when compared to my last doctor but, my hopes are high and I feel like disappointment is inevitable.
After reading about the drugs I found a book called Treating Epilepsy Naturally, I took it in to the other doctor but, when he became so defensive and denied me as a patient, I didn’t bother bringing it up. I’m hoping this doctor will be more open to alternatives and even motivated to see what FECA will pay for. Since it all seems to be effected by stress, I’m hoping that some things that help manage stress will be approved. I also read about aromatherapy and since my partials are accompanied by a metallic smell it makes sense to me that this would be helpful. I’ve already made myself a sachet of lavender to keep in my purse (and next to me when I sleep since they usually happen at that time) and it seems to help refocus my mind. So my hopes are very high! But, in a country that doesn’t want to pay for basic health care, it’s probably unlikely that I will ever be approved for aromatherapy massages or acupuncture. However, I am determined to deal with this my way!
At no point did I ever blame Peace Corps for any of this. Although I did become extremely bitter that I gave 15 months of my life to volunteer in another country and returned broken, I constantly remind myself that I don’t know what would have happened if I had stayed in the US – I could have gotten in a car accident, I could be dead. The alternative to going into Peace Corps does not necessarily mean that I would be problem free. Peace Corps was an amazing adventure!