Too much to even compute. Let's do an instagram timeline... I'm not going to proofread this and I use Swype text so this could be interesting.
Late September: I had a seizure on a Tuesday morning which meant that there would be more to follow throughout the day but I forced my way through a cluster because I had a Board Meeting that night. I woke up the next morning still having seizures so I took that day off instead of the more important meeting date. I was reprimanded and written up for taking the day off. When I came back and found out that my supervisor and HR Director had to advocate for me and talk the CEO out of firing me for "not looking sick"... I spent the last 2 hours of the day essentially weeping, no, ugly crying, at my desk. While I had dealt with this ignorance before since my diagnosis, this time was different. I really felt safe here since I was in the health field with an incredible mission. I thought the ignorance was just something I'd find in corporate America where managers are too stressed to be good human beings. This day... was when I fully grasped that no matter what I do for a living I will NEVER escape this. No matter how much I disclose, don't disclose, educate, etc., people will have their assumptions and I can't really do anything about it. I paced around my desk crying because I felt so alone. I thought about just walking to BIDMC to talk to a neurology unit case manager. I asked Steven to come up for the night because I didn't want to be alone. It was literally the worst I've ever felt in my life. While I knew this was all completely illegal on her part, I knew I had to leave that job. I couldn't have the "you'll be fired if you take another day off" looming over me. That day I ended up staying at work late to make sure my eyes and face got less puffy before coming out of hiding from my desk... I got home and still looked like this. Still red and puffy faced. Not my finest look:
The weekend after that I still had my last long run to do for the Marine Corps Marathon. The few days proceeding were pretty intense. I started printing and documenting everything I could in the case I'd need it or would inevitably decide to take legal action. I even received an email accusing me of bullying because I made sure to have a doctor's explanation of disability in my file.
On my long runs I'm usually pretty concentrated on skylines, focusing on what my body is doing, being present... but for the first few miles I couldn't stop thinking about what had happened and that the last time I dealt with ignorance almost at this level I was told "some people just don't belong in corporate" (although the projects I managed and/or created were by far the best reports, events, systems I've ever produced.) I thought about that and thought about how I knew I'd be leaving my job soon and then about 3 miles into my run, I just cried. Openly. In public. While running. Only it wasn't sad this time. It was just cathartic. It's hard to feel as incapable as people are trying to make you feel when you're able to run 18 miles in preparation for your 4th marathon. Only strong. Really really strong. That run was one of my favorite runs I've ever been on in my life.
October: I worked the next few weeks while sneaking out to go on a bunch of interviews and take more phone interviews than I can even remember. I ran that fucking marathon. Did i make my time goal? HELL no. But I finished and I wasn't thinking about anything but finishing. When your "being present" is running with extreme discomfort because it's 80 degrees out and you're hitting a hard wall 18-19 miles in with a strained diaphragm? ...It makes you feel weirdly human. Only a person who has run a marathon or 2 can fully understand that. Regardless of me breaking down into my friend Rachel's arms when I unexpectedly saw her just before mile 19, that "It's so hard" while being in the present is what drives me. So I finished.
November: I had a cluster a few weeks after the marathon. I had to take a day off. I came back half knowing there'd be hell. I was correct. Long story short: I quit that day. I hadn't secured a job yet as planned but I didn't even care anymore. I had to grab as many things off my desk, throw it all in a bag, and burst into the HR Director's office to resign while the CEO walked into the building. It was dramatic. My co-workers, including many of the senior leadership, knew I was looking to leave weeks before and advocated for me. They helped me out when I needed to leave for interviews. One cried when I told her I'd be leaving when I found a new job. Actually saying goodbye to them as I made my way down floor by floor that day was extremely hard. I never had a chance to say goodbye to a few others. I honestly didn't want to leave that place. Other than the person in charge, it was a good GOOD place with really good people.
I've been told by many people to take legal action. Trust me... I'm well aware that I had grounds and should have. It still eats away at me. A part of me feels like as an epilepsy awareness/invisible illnesses/disabilities advocate, I've failed those who have also struggled with this or will eventually struggle with this as well. I just couldn't fathom the stress that would have ensued because I know her and I knew the drama/lies she would have created and fight that would have happened. I was too tired this time. My seizures were getting worse. I decided to focus on me.
After 2 weeks of the leftover interviews I had already arranged while I was working, I decided to switch gears. Ive known for a long time that I've wanted to work in fitness. So NOW I'm currently studying to be a certified personal trainer and I applied for a job in membership at a fitness club around the corner from my apartment and got it. I'm only on day 3 tomorrow.
I got to spend the holiday season hanging out in Starbucks, working on my fundraising efforts for this year's Boston Marathon, and relaxing.
Health-wise, unfortunately, my seizures aren't as predictable as they used to be. I'm hoping it was/is stress related. At my last neurology appointment we put surgery back on the table š Stay tuned on that. It would be a long process before the actual surgery would take place. Plus, I'm still waiting to see how things go with the neuroendocrin, and I was also forced to come off one of my medications because insurance companies are the devil.
I'm running Boston regardless. So... help me out and donate or else the only thing that's getting in the way is money. I can run through marathons with seizures but if I am unable to run this race because I haven't raised enough money? NOT. COOL.
Here's the link. Anything you could give would help a bunch! http://bit.ly/2hXH04C
However, this isn't another fundraising effort. Just an update on where I am and what's going on. I feel pretty good about what's happening in my life right now. Ive never really been a "everything happens for a reason" kind of person. I'm annoyingly logistical. However, I really think that situation was my final straw in my less than 8 years of dealing with this condition, that pushed me toward where I should be.
