Category: Stories

  • NEAM, Day 2: She said yes!

    Back in 2018, I was volunteering at Camp Oz, a week-long summer camp for kids with epilepsy. Aside from camp counselors, adults volunteer were assigned to help with smaller groups (I was tagging along with a group of about 10 boys in the same grade who were sharing a cabin).

    Volunteers met together at the beginning of the day to get their group assignments and receive a camp t-shirt. I also spoke to someone from EFMN who was in charge of organizing the volunteers and she told me a story from a few years ago about a young camper who was really depressed. He was thinking about his future and believed without a doubt that because he had epilepsy, there was no way that he’d ever get married. The volunteer working with the camper’s group that day? A man with epilepsy who showed the boy his wedding ring.

    Thankfully, I never had to deal with any children suffering from that level of existential crisis. I think the worst thing that came up while I was there was when the group went to the archery range and offered to let me participate—more of my arrows stuck in the ground rather than the target. That said, in a situation similar to that one from years ago, I could have showed a camper my wedding ring as well.

    Being married has truly been a blessing (and not because I have epilepsy). For a long time, I was convinced that I was going to be an eternal bachelor (and not because I have epilepsy). But I met Teresa and that mindset eventually went out the window. I didn’t want to be single anymore—I wanted her to be my wife. I know that’s true because not only did I ask her to marry me, I went the traditional route and first asked her father for his permission to marry her; in both cases, even though I was pretty sure the answer would be yes, actually asking the question was terrifying.

    When I was going to ask Teresa’s father for permission, we were spending the weekend at her parents’ house (they live about three hours away, so it makes more sense to stay for a few nights rather than trying to make it a one-day visit). I was struggling to think of how to bring up the topic with him without just blurting it out over the dinner table. And then a window of opportunity revealed itself.

    Our car had shown a warning light indicating that the air in one of the tires was low. I decided to ask for his help: the two of us could go out to the car with an air compressor and I could ask him for his permission to marry Teresa then. So what happened?

    He told me about a nearby gas station that had an air hose I could use.

    Since that plan didn’t work, I eventually asked him while he was helping me load our bags into the car to head home. I had no idea that so many butterflies could exist in a single stomach, but of course he said yes and gave me his blessing to marry his daughter.

    One question down, one to go.

    But before describing how “one to go” eventually happened, I want to explain that it was a happy event, but the jewelry store that sold us Teresa’s engagement and wedding rings… I’m not mentioning its name for a reason.

    She and I had talked about picking up the engagement ring, then going to eat at a fancy restaurant where I could pop the question. I was at a complete loss about how I might do it, but before going into panic mode, we had to pick up the ring.

    We had worked with a salesperson there named Izzy: she helped Teresa design the engagement and wedding rings, she helped me pick out the big diamond for the middle of the wedding ring… she was thoroughly engaged with us throughout the entire process and we’re extremely grateful for her help.

    Then we got to the jeweler that morning, asked to see Izzy, and were told that she no longer worked at their establishment. “But you can work with this lady who smells like booze at 10:00 in the morning instead!” Thankfully, the design process was over, it was just a matter of picking up the engagement ring that day and the wedding ring when it was finally constructed.

    When they found out we were picking up an engagement ring, someone offered to get a little pillow that I could kneel on when proposing. The lady could have just as easily said, “Do you want to prove to your future wife that romance is dead?” Needless to say, I declined the offer. We just picked up the ring and left.

    Since Teresa had Izzy’s number, we called her as soon as we got out to the car, which is how we found out that Izzy had called in sick earlier that morning because she was suffering from severe back pain. While she was in her chiropractor’s waiting room, she got a call from the jeweler… they fired her over the phone. So yeah, that’s why Izzy wasn’t there to help and they offered us the cheap boozy substitute in her place.

    While that didn’t prove that romance was dead, it still really ruined the mood of the day for both of us. As a result, instead of going to a fancy restaurant, we picked up food from Panda Express on the drive home. And instead of worrying about getting down on one knee in front of a bunch of strangers, I proposed to her while sitting on our bed with our two dogs, which (not surprisingly) wasn’t nearly as scary.

    She said yes!

    And it turned out that none of those strange and somewhat unfortunate circumstances mattered. We got engaged, we got married, and we’ve stayed that way for close to seven years now. So if there are any young kids with epilepsy out there who are concerned that they might never get married, don’t worry about having epilepsy, how many butterflies your stomach can hold, or whether romance is alive or dead. If you and your partner love each other, you’re off to the best start possible.

  • The downsides of distraction

    Over three months and nary a peep from me on here. That’s not to say that nothing’s happened since then—far from it. However, I’ve managed to keep myself busy doing stuff that’s been pretty inconsequential. I think things started going downhill when I found a new game for my phone that I found on the App Store.

    Two things to note: It’s very rare for me to pay money for a game, either to get rid of ads or to get bonuses that help me advance in the game. It’s also very common for me to play a game on my phone to excess, which can enable me to advance just as well as people who are coughing up loads of cash to play.

    That said, playing a game for hours per day takes a toll. I didn’t have as much time in the day to do things; I didn’t have much motivation to accomplish much more than what little I was doing. It’s much easier to see in retrospect that while I may have felt some level of accomplishment because of what I was doing, it wasn’t worth the time I was using to do so.

    Putting aside that feeling of accomplishment, what did I actually accomplish? Not much. Any progress I made is stored in the app; if I never open it again, the progress is basically worthless. (Three times now, I’ve gone through the process of investing a lot of time and zero money into playing a game, then finally deciding that it’s not worth all of those hours per day. Given the level of progress I made, I don’t quite have the heart to delete it entirely, but I tuck the game into a folder several layers back on the second screen of my phone. Three apps that I haven’t opened since I finally decided to stop playing and regain all of that time I was using each day for what was essentially a distraction. Nothing to show for all of that time and effort outside of pixels on my phone screen.)

    Spending several hours a day over a long period of time means there are many days, possibly weeks that I’ve invested into staring at my phone and tapping the screen over and over again with very little (if anything) to show for it. How much of that time can I get back? Zero. Zilch. Nada. None of it.

    Could I have put that time to better use? Most likely. Is it too late to apply the time to said better use? Most definitely. So I have to shrug it off, accept my losses, and move forward. And part of that moving forward means doing a lot of writing in the next two days.

    Why two days? Because on the third day, I’m rising from the dead. Wait… no, sorry, my bad. It’s because on the third day, I’m going back to the hospital for another visit with the neurosurgeon in the OR. Which means I have a lot of stories to tell and not much time to tell them before then, so distractions will be thoroughly unwelcome for the next few days. I like to think that the upside of avoiding distractions will be worth it.

  • Where do our stories go when we die?

    I’m not trying to be fatalistic when I ask that question, but it’s something that popped into my head recently. I spent hours upon hours talking to nurses and nursing assistants in the hospital, telling them stories about different aspects of my life: seizures, times I’ve been in the hospital, all of my years in school, being on Beauty and the Geek… who knows what else? And now that I’m out of the hospital, those same people might hear similar stories, but only similar stories. Mine? Never again.

    When I’m finally gone (hopefully not anytime soon), if they don’t remember any of my extended monologues, said monologues are gone with me. Admittedly, some of the listeners might disagree, but I like to think I was sharing some really good stories with them. So what are my options?

    1. Hope they remember the stories and share them with others.
    2. Hope that my brain survives when me, myself, and I all die.
    3. Share the stories with more people now that I’m out of the hospital.
    4. Let the stories die with me.

    1 and 2 seem unlikely at best, but I can still choose between 3 and 4. The third option has a nice ring to it, especially since I rewrote it multiple times (my first few attempts didn’t ring nearly as nicely). So even though I created this blog so I could talk about my journey toward brain surgery, hoping that maybe it could provide some insight and/or comfort to someone else who is or who knows someone taking a similar journey, I may end up being self-indulgent and write about some other topics in the future. While people reading this blog might not be a captive audience like the nurses and nursing assistants in the hospital, this may be the only way for me to share any stories before they all die with me. Unless someone reading this blog finds a way to preserve a person’s brain after they die, in which case… I don’t know how well my brain might be able to share stories without the rest of me (especially since I don’t think it has fingers for typing on a keyboard), so this may still be my best option. You all have both my apologies and appreciation in advance.