On November 2002, I woke up thinking it would be like any other day.
By that I mean, I’d get up, shower, have a few ‘juvenile’ seizures (I’d been having them for years), get dressed then go to school. Little did I know my doctor had forecasted that morning a month before.
I never made it into the shower that morning. As a matter of fact the next time I opened my eyes I was in the emergency room. Apparently, I had a full on black out seizure. To this day, my heart pains for what my parents experienced that morning. I wasn’t there per se, but they’re experience was possibly worse than mine.
What was it like for me? I woke up feeling like I did 8 hours of capoeira…on my first day. Every muscle hurt. I had a huge bruise on my forehead from where I kept hitting my head on the tub, and my tongue ached from where I almost bit it off.
Long story short, that day began 10 years of yearly tests, daily medication, random bone pain and constant memory struggles. It also coincided with the start of college in a few months. At first, I almost didn’t attend but my parents in all their awesomeness pushed for it despite their own fears.
However, the medication that worked best for me felt like a chemical lobotomy. I went to all the tutors, studied for hours, but still could not keep up with the engineering program that I had gotten into. Eventually, I somehow graduated and managed to get into graduate school but learning was always a struggle. It felt like I was in a constant haze.
Fast forward to 2011. I’d been working for some time in DC, feeling I wasn’t reaching my potential, saving up to one day quit and focus on my health. I was tired of that life. But, in the meantime, I had to get a prescription refill to tide me over until I was able to quit.
Then I got the wake up call. Mistake number 1? Deciding to stay local instead of going to the neurologist that treated me back home. In hindsight, he acted like Dr. Spaceman. The paraphrased conversation with him: “The medication you’re taking is bad for your kidneys and bones and you can’t have kids. I want to switch you to a new one. We have two options: one will transform you into a moody person the other can cause a rash.” Lucky for me, my friend mentioned that it’s not just a rash but rather necrosis where you can lose limbs. Naturally, I decided to chemically turn myself into the Hulk. I still had to save up my pennies and he refused to give me another round of the old prescription so there wasn’t much of a choice to make.
Well Dr. Spacemen made my dose too high. When I called to tell him how I felt his response was simply: ‘Ah yes, you’re intoxicated. Stop taking it immediately.’ Nice. Of course, there was 0 trust left when he suggested ‘Let’s try the rash med. I’ll just give you some cortisone if you start to feel bad.’ Further research showed that I was at a higher risk of said rash.
That experiment left me with weird symptoms for some time. Fortunately, I had truly awesome people in my life and after some encouragement I decided that it was time get off the medication. For reals. My doctor and I had tried and failed in 2007 but I figured it was time to try again. So I quit my job and moved back home.
This was the turning point. I took my last pill on October 1, 2012. What I thought was the end was really the beginning. I went through the standard withdrawals (panic attacks, depression, skin crawling) and stopped sleeping. This would have all been fine if the epilepsy symptoms (or something like them) also went away but they didn’t. I then managed to get a high fever at a time when all of the Tri-State area was at a standstill (Hurricane Sandy). Long story short, it was a dark and twisty few months.
But when you’re going through hell you keep walking. I found that Benadryl helped me sleep enough such that I could get a job in March (savings were running out). I stopped drinking caffeine and eating foods that triggered bad feels. I figured out how to organize and focus my thoughts now that they came at warp speeds. Then I discovered Buddhism. By the time I moved into my own NY apartment on October 1, 2013 I was sleeping better and pretty much rid of most symptoms. By October 1, 2014 I felt well enough to start capoeira. You see where this is going.
But I couldn’t have done any of this without some lovely hoomans:
1. Dr. D.B. – Who treated me for free since she knew I wasn’t working. She also took my calls whenever I was freaking out and assured me that I’d be just fine. There are doctors and then there’s her.
2. My parents – My mom for those nightly massages that helped me sleep even though the lyme disease made the process painful for her. My dad for driving me everywhere and anywhere. Both for the support and strength they provided.
3. My niece and nephews – For saying ‘I love you’ (randomly) at the moments when I needed it most.
4. My siblings – For trying to find ways to make me feel better and keep me busy.
5. My friends – For waking up at dawn to see how I’m doing. For saying ‘WE can’t give up’ at the precise moment when I felt most alone.
October 1, 2017 marks 5 years from the start of that journey. I sometimes recall the days I couldn’t get out of bed and marvel at how much has happened since. It’s incredibly mind-blowing and for that reason, this year’s celebration has to be huge.
With that said, I present to you this year’s theme: