In March (2016) I will have made it 5 years since surviving a massive stroke in my late twenties. I’v tried multiple times to tell my story but each time I sit back to read what I wrote, I feel it’s too long. I discovered that there really is no short way to tell my story.
In 2010 I quit my job in pursuit of a better future for my son, Skas. I went back to school and started learning medical billing and coding. Within six months I was pregnant with my youngest, JJ. Things were already tight within our small one bedroom apartment with Kasper’s (my husband) low paying job and our three year-old’s growing needs. I found school difficult which caused me great stress. I could hold most of the information but when it came to reading the case reports to find everything to bill a patient for was like traveling through a maze using a map written backwards. This is when the first signs of unexplained confusion started. I’ve always been easily confused but I’ve always been able to find my way back and start over, reaching my destination after a second attempt or two. With this new type of confusion I was unable to un-see the twisted version of information my brain made of what was provided to me.
My pregnancy with Skas started with a migraine that felt like I was being slowly stabbed in the brain with a white hot metal rod. Nausea, dizziness and blurred vision took me out for a little under 48 hours. The vomit looked how morning sickness was always described to me: thick, yellow-ish and kind of foamy. I treated this episode as a small stomach bug before eventually finding out I was pregnant at 7 weeks. That pregnancy was relatively normal. I gained over 55 pounds of weight and I loved it because for once I was not a narrow pole with clothes on.
Aside from heartburn and surprisingly clear skin, one thing that really stood out about my pregnancy with Skas was the constant neck pain and headaches. El Jefe, my Ob/GYN, said these were tension headaches and recommended I take baby Tylenol at the onset of each headache. I didn’t take the Tylenol because I hate pills and instead decided to “tough out” each headache. The headaches didn’t end with the pregnancy. They lessened but they hung on.
Unlike with Skas, I was ill with JJ from the start. I had morning sickness right away which was bearable except that it didn’t have a set time of day to hit me. I became concerned almost immediately with the headaches despite my attempts to explain away the symptoms and comfort myself. El Jefe said they were, yet again, tension headaches. I still refused the Tylenol. During the middle of that first trimester I started seeing black spots and the morning sickness turned to seemingly endless amounts of vomit. The day I filled the toilet and had to jump to the sink because it wouldn’t flush fast enough was the first day I was convinced something was really, really wrong. I remember staring at myself in the mirror and rubbing my tiny belly and crying over a sink of vomit while repeating “something’s not right; this isn’t right.” I thought it was the pregnancy but a small part of me started considering the possibility it was actually me. I stopped taking my prenatal vitamin after noticing I threw up more within two hours of taking them than at any other point in the day.
The afternoon my vision was obstructed by large shimmering black orbs, I tried to blow it off. It was humid, it was muggy, we were hiking on a trail through an alligator park that begins where the city’s botanical gardens ends. I was tired and needed a break. A two story, wooden look-out perched at the edge of “Gator Bay” looked like the perfect spot to rest. I encouraged Skas to run ahead up the stairs so I could follow behind. Halfway up I lost my vision and felt my head spin. I had to sit but to keep Kasper from seeing, I climbed blindly up the rest of the stairs and followed the railing to a bench.
I seriously thought I had a brain tumor. It made sense, right? Headaches, dizziness, vomiting and pressure in my head that wasn’t always related to or sign of headache? But who goes around saying they have a brain tumor without knowing for sure? I felt ashamed about my fears and kept them to myself.
Mom and my sister come to visit. We don’t get along but family is family and I did what any family would do. “Sure, the 6 of you can stay for almost two weeks in our tiny cramped apartment where we have barely enough food to feed the three of us” (my medicaid had barely kicked in and we had not started receiving SNAPS yet); thankfully I finished my finals the day they arrived and courses wouldn’t resume until after they left. The headaches were worse than ever and I begin commenting that it’s odd they are always in the same spot: right side of the head, to the right of my hair’s center part, and slightly back from the top of my right ear. This is known as the right parietal lobe (I’ll learn this a few months down the road). Kasper is great, he rubs my neck every night and works hard to not condemn me for refusing Tylenol.
During their visit I start experiencing strange occurrences with my senses. Everything smells differently yet it all smells the same. My cigarettes taste funny and some food has almost no taste at all while others are one explosive bite after the next. My vision is off. Everything is bright, too bright and then it suddenly feels like someone threw a dark sheet of fabric over the lamp, covering my world in the thin shadow of my concerns. We take the (5) kids out to Peter Piper’s one night. I notice a couple of former co-workers a few tables over. Because I had learned almost a decade earlier how to deal with my social anxiety I had no issues with walking briskly over to their table to converse and catch up. I must have been there a solid five minutes before I realized the heel of my left hand’s palm was completely immersed in some poor kid’s birthday cake. I didn’t even feel it. We all laughed then talked about how I was only a couple weeks shy of entering my second trimester and was already showing.
The next few events are kind of mixed up. Before my family left for their home thousands of miles away, we go out to a few local shopping centers then go downtown where they can see the Gulf in February, in the middle of a city, on a warm beach. I didn’t feel right. I can’t explain now 5 years later exactly why I felt like something was wrong but I know I felt a lot of doubt about leaving the house that day. I know I thought/hoped a lot of my issues were related to allergies or my sinuses even though there had only been a few minor issues in my past regarding them. I know that it was bright and windy that day. I felt weak against the wind and the light from the sun seemed to coat my eyes, seeping into my head from the sockets around them and filling me with a sense of “wrong” heat. That’s how I remember it but what I actually felt that day I can’t recall. I know there was nausea and very mild flu-like symptoms but I also know I brushed them off as pregnancy related.
The day they left I was heartbroken. For the first time in 13 years, I wanted to move out of Texas and go back east. I missed my family and hearing them describe life “back home” uncovered a hidden well of homesickness in me. I’ve been back once since I moved and I left there glad it was only a visit. My homesickness only seems to exist while on good terms with “The Evil Duo.” Our relationships are like treasures wrapped in barbed wire. There’s some gaps where it’s only wire and it’s safe to touch and hold but the rest is too risky to bother with; the more you try to examine, salvage and save our relationships, the greater the risk of injury thanks to those pesky rusty, old points. The day they left, Valentine’s 2011, we were between those painful twists of wire.
I cried for a couple of days. It hit me deeply that these people, as horrible individually as they are, are all I have in the world outside of those in my house. Kasper did his best to comfort me and within days we decided that together we would figure out the best way to bring me closer to the part of me he dislikes the most. One night a week or so later, I woke up crying and feeling completely alone. I missed my family dearly and though I thought it was odd for me to experience this much emotion even while pregnant, I continued to dismiss the possibility this was yet another warning of my “secret tumor.” I ended up eating an entire bag of Sour Patch candies while watching Hope Floats around 3 in the morning to keep from crying more. By the time the sun was sitting happily above our apartment building I felt like a little guy with a mallet was inside my skull, beating on that part of my brain always affected by headaches. In waves it came from sharp to dull to long heavy thuds. My bruit yelled and howled until I eventually closed my eyes and went to sleep curled up in the chair.
A few nights later Kasper and I had mind blowing sex. The second he came I felt a white light explode inside my head. I felt weak and instantly delirious. I slid off to my left, curled up and went to sleep while holding my head and grinding my teeth to keep from crying. I didn’t want Kasper to think…I honestly don’t know why I was hiding it.
I believe it was after this that I told el Jefe about the black spots in my vision, the constant headaches and neck pain , and the theory that my prenatal vitamins were making me sick. I told him about the experiment I ran with mom during her visit to prove why I thought it was the vitamins. Within 15 minutes of taking it, I threw up clear-ish, black-ish water. It looked like I swallowed the contents of an ashtray without the butts. Black, grainy flecks floated in the charcoal tinted center of my “vomit.” He brushed off my concerns and prescribed me a new vitamin that I refused to take.
I’d say it was within the next week or so I woke up on the floor of my bedroom wondering why my left side wasn’t cooperating without actually understanding:
Hey my left body is not listening to my commands at all.
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