December 17, 2016 was when my husband and I unknowingly had our last sip of alcohol. The funny thing is that I can’t even remember what it was. It could have been wine, it could have been cider and for him it could have been a beer or a mixed drink. If I had know it would be the last one I probably would have had a memorable martini but that is normally not the way life happens.
December 18, 2016 my husband and I had a nice day planned down in Newport, RI. We were going to go to the tower we had wanted to get married at and that our engagement revolved around, get lunch and a drink, then do some shopping before heading home. Unfortunately that was not the plan the universe had for us. Instead on our way down we stopped in Providence to pick up a RISD sweatshirt for one of Lilla’s Christmas presents as it is her dream to go there and then stopped to get some gas. That is when it started. My husband said he was having his deja vu feeling again. Not uncommon as he had been having these frequently for years (decades even) but every time we brought it up to doctors it was brushed off so we really didn’t think much of it. Sometimes we thought it was anxiety, sometimes we joked it was paranormal. By the time we got to the tower it had intensified. He tried his best to take the pictures with me but was having a really hard time keeping it together so we left to do some walking around. Unfortunately this routine that normally made it better wasn’t working. He eventually ended up losing all color in his face and throwing up. At that point I declared it was time to go home and thankfully something told me to grab the keys from him. As we left it just got worse and worse. I had to pull over for him to try to throw up and when I started driving again he had his head out the window like a dog saying over and over again “what is going on?”. Then came the sound. I don’t think I will ever be able to get that sound out of my head. It was like a pterodactyl and I looked over to him convulsing and foaming and bleeding from the mouth. I just remember screaming his name as I pulled over and scrambled to call 911. I would just like to add that trying to call 911 on a smartphone in that situation is ridiculously hard. If you have had to, then you know. That is about the time the first person came over to help and about the time his eyes rolled back and he stopped breathing and turned blue. I remember calling my in-laws and a kind women opening my door to get to me when I got off the phone. That is when, by the grace of God, a doctor walking by saw the crowd around my jeep and got him breathing again. I remember looking up and seeing his eyes still rolled back and he started snoring. As thankful as I was that he was breathing I remember all the years of him being an EMT and telling me something about snoring and brain trauma. I remember the fire chief introducing me to the police officer that would escort me as “his girlfriend” when I firmly corrected him that I was his wife. Funny how that is a detail that stuck with me.
Once he arrived at the hospital all the tests started. He couldn’t tell you where he was, what day it was or what happened but he knew who I was and that we had three kids. When they informed him that he had a seizure he looked at me and asked if that was true and if I was okay. I told him yes and just looked down. They whisked him off for more tests and then they let me visit with him. As he was trying to make sense of things I saw his finger start twitching, then his eye, then chewing his tongue. I asked if he was ok and he couldn’t answer me. I yelled for help and as soon as the nurse arrived and asked if he was ok he looked at her with a scared and confused look. Then came the pterodactyl noise, convulsions and he stopped breathing again. I ran out of the room. I ran out of the er. I started to panic and went into survival mode pacing the waiting room. I remember my in-laws coming with our baby. I remember the much needed hug from my mother in law, I remember my parents being there for support I very much needed and I remember this one lady that much have been there for some psych reason coming up to me asking me questions when I just needed to be left alone.
That was the start of his 3 day ICU stay, a lot of stressful and sleepless nights and the beginning of his Epilepsy diagnosis. We later found out that during development he formed scarring on his temporal lobe and all those deja vu moments were actually focal seizures that had been going untreated for over 10 years. However I would like to say that although I have sworn off returning to Newport for obvious reasons, I can not say enough wonderful things about the ICU nurses. They comforted me when I needed it, tried their hardest to make me laugh, let me stay the first night (mainly because my voice was the only one he was responding to) and they shared their food with me to make sure I was eating.
So back to quitting drinking. Like many people in the epilepsy battle we have had trouble with medications and keeping the focal seizures under control. We obviously want zero chance of these happening again so we made all the changes needed, as a team. In fact on his most recent medication you can’t drink at all so it was good that we already have that under control. If you know us in real life you know we have tried to use humor as best as we can during this time but one recent situation still has us laughing looking back on it.
We were at my husbands cousins wedding recently and we knew there would be drinking however we don’t drink. I had been drinking alcohol removed wine for a few weeks at this point so we had it in our hotel room. At the reception my husband and I wanted to feel normal so we started plotting out a plan to sneak in a bottle of alcohol removed champagne. So here we are, in our 30’s, sneaking in alcohol removed beverages. It was like life working in reverse after being teenagers who were sneaking alcohol in.
We actually have come to enjoy getting creative with our alcohol free life and still having fun. It may have been a lifestyle change but there is so much more to life…