In 2018, I won the lottery.
It wasn’t the kind you want to win...
Sometime in mid-September, I had an ordinary day. A board meeting, followed by a board dinner. The only thing that stands out as unusual, was that I asked for tea and received a pot of coffee instead.
If you know me, you know I don’t send things back to the kitchen. I don’t complain. I don’t find any joy feeling upset, but rather peace in keeping quiet and moving past it. So I choose peace every time.
I worried that I’d stay awake and that I wouldn’t be able to sleep...
That night when I tried to sleep, sure enough, I couldn’t. My head started hurting and I started sweating. I cursed the coffee. A migraine. Great.
I had fits of sleep, the weirdest dreams and early in the morning I awoke to what I can only describe as a full blown panic attack. I never experienced one before. I hope I never do again.
I’ve never sweat so much. Not even in Phoenix, Arizona. I knew something was very, very wrong. This wasn’t like any migraine I ever had before. Damn coffee.
I called my doctor and she asked me to come in. They put me on an IV. Gave me pain meds. Nothing really felt better. Just shades of better and then worse.
They did blood tests and everything came back normal. I was having monthly hormonal migraines and this fit the pattern. However, I was afraid to be left alone, so I asked if I could go to the hospital.
At the hospital, I mainlined some Benadryl, compazine and Tylenol - they affectionately called a cocktail for migraines. It knocked me out and they released me after I woke up.
I felt ok for a few hours and then I wasn’t able to eat anything. My head just hurt, sounds hurt, light hurt.. it all hurt. This went on for days. 8 days. No food, just ensure drinks if I could handle them and water.
I started asking Dr. Google about migraines and apparently you can get them for months at a time. They can even be untreatable!
Convinced I had a migraine and I just needed to hunker down, I hid in a room, only emerging by crawling to a shower or to get water. I started questioning everything in my life. Was I stressed? Where was this coming from?!
One afternoon, on September 24th, I started having seizures. The right hand side of my body would become momentarily paralyzed. If I stood, sometimes gravity would take me.
You don’t ever want to know what it feels like to have gravity take you. It isn’t the same as falling and having your muscles somewhat engaged. No, you just fall. You can’t resist it. You are just a mind in a meat sack.
I called my doctor and she told me to head to UCSF because they have a world class neurological team. The only problem was I had to get through triage somehow in order to see someone.
I was instructed to tell them it was “the worst headache of my life” and I’d be seen faster. I did this and four hours later, I was slumped over in a chair, still waiting.
Then a woman, with an African accent came and put her hand on me and said, “I’m going to put down you are having left side weakness and you need a CT scan. You don’t look good.” I thanked her and she squeezed my hand and said, “We are all human.”
Human. She was my angel.
Suddenly things kicked into gear and I was getting a CT scan and I had a bed to lay in the ER. I hid under my sweater to shield myself from the lights while listening to the moans around me, a man fantasizing about Judge Judy and beeps.
The results came. My CT scan was abnormal. They asked if this ever happened before.... No.... So, for good measure they did another one with contrast.
A doctor came in and she held my leg as she delivered the bad news. I had sent my husband home to sleep, so I was alone. I’m so thankful she held my leg. That small gesture meant the world to me and kept me strong and together enough to listen.
They told me I had blood clots in my brain. A stroke of sorts called DVST or CVST. It was a miracle they found it in time or at all, because the condition is also rare.
They put me on heparin right away and told me I would be in the hospital for at least a week, if not more. On September 25th, I was admitted.
There was a lot of hushed talking outside of my door. I could hear some of it. When they saw me, they downplayed the extent of the clotting but in the hallways I heard them discuss it and how lucky I was.
I started seeing double vision and lost my ability to walk. My hearing was reduced to this horrifying whooshing noise.
I did everything I could to keep a positive attitude, including making fun of my stroke. Pretending I forgot things and didn’t know how to do them anymore just to make myself laugh.
I was eventually released with a pirate patch for my eye and a walker. Maybe some people would have been ashamed of these things, but I used them with pride. Btw, there aren’t any beautiful walkers out there. They are all ugly, so with the help from friends we blinged mine out.
My bed was moved to the living room so I didn’t have to climb any stairs and people could look after me. I slept for weeks. The days blurred into one another.
However, when I was awake... I marveled at the simplest things in life. Like when I was released from the hospital and took my first few breaths of fresh air. If I had died without ever knowing that... to the avocado toast or the sunlight on my face.
I nearly died. I almost walked out of the emergency room because I was tired of waiting. My angel saved me. I don’t know how much longer I had left. My mental facilities are back, I can walk now and I can see. My hearing still comes and goes, but I’ll take it.
We are surrounded by beauty, we just lose the ability to see it. We take it all for granted. I am so, so, so thankful to be alive and to get another chance at marveling at all of the insanely wonderful things around us.
I was private about this until I was healthier/better. Some people knew. I’m sorry if you didn’t know. I still have several more months of recovery and blood thinners to take before the clots are gone. I will pull through this though.
As to what caused this? We don’t know exactly, but I do have elevated Factor VIII (new discovery) and I was on estrogen. Only 5 in one million people have this happen to them. So, I won the shitty lottery. I also won the one where I survived.
Maybe I also won the rare lottery of the type of thankfulness that’s incredibly hard to grasp or achieve because it comes with such a high price.
Oh and I haven’t touched coffee since that board dinner even though it has nothing to do with what happened. I have a negative association that I can’t yet detach from the experience.
