Seize (the Day)

Before starting this post I just wanted to let you know that I’ve put links to certain aside references I make (especially pop culture references or medical terms etc…they’ll be underlined) to give people a better understanding and appreciation etc. for the references. Please forgive me if you feel like I’m insulting your cultural knowledge by putting links to some seemingly obvious references, but it has come to my attention lately that there is a wide range of ages and nationalities reading the blog that don’t always have the same points of reference as a lot of us have.

Thank you for all your prayers and encouragement regarding the seizures. I’d be lying if I said having the big one last week didn’t bother me a lot or totally freak me out or has left me in a constant state of paranoia that I may have another one. The truth is that it was a real emotional punch to the gut and for this entire week I’ve been feeling depressed and laying in bed all day (well, for the most part that’s true). I have a new appreciation and respect for people that have to endure these full blown or “tonic-clonic” seizures (as they’re properly called) on a regular basis. I have also come to a better understanding of how hard (and important) it is to stay positive during the recovery process (of any life threatening illness). Before last week I thought I was just doing what anyone in my situation would do, so I wasn’t aware of how difficult it truly is to choose faith and courage in the face of such adversity. I think because everything was looking so positive for me that I wasn’t prepared for a (“perceived”) setback like the seizure, and I believe that I’ve now learned in a “visceral sense” that the EASY choice in a situation like I’m in is definitely to be depressed, dwell in self pity, and lose the will to keep fighting…so I would just like to say a big “THANK YOU!!!” to you for reminding me that “I’m a Fighter!” (OH-oh! “There goes a fighter!). Thank you for texting, commenting, calling, visiting, sending cards, and most importantly praying. You hydrated me on this marathon that I’m running (I do want to point out that before all this I never had any desire to run a marathon. I’ve always thought “that looks painful…why would anyone want to do that to themself?” But as life reminds all of us…we don’t always get a choice. “Ninja Warrior“, on the other hand, looks awesome and something I would love to work towards trying to do someday). Speaking of Marathons…I’ve been told that a one minute seizure is the equivalent of running a Marathon in terms of the amount of physical exertion your body experiences and so it actually makes sense that today (ten days since the seizure) is the first day in which I would say I’m actually feeling better.

Now that I have gathered some perspective, I’ve come to realize that I have a lot to be thankful for regarding the whole incident. When The first “tonic-clonic” seizure happened, (“The New Normal day 1″ is what Amy and I refer to that incident as) I was sitting at my computer and Amy was standing right next to me trying to show me a text message. I started feeling light headed and put my head down then suddenly found my entire body jerking backwards and I quickly blacked out. The next thing I knew, I was waking up in the Emergency Room at St. Joseph’s Hospital thinking to myself “Oh, this can’t be good.”

I created a little diagram to explain the phases of a Tonic-Clonic Seizure. Click the pic to enlarge.

When this latest “tonic-clonic” started, we were sitting down to dinner. My brother Josh chose to say an extra long prayer for some reason and it was in the middle of it, that I got the “aura” feeling (that same light-headedness) and tried diving over to a nearby sofa hoping that if I could lay down in time it would go away (and also hoping that I would get everyone’s attention so that if something was about to go down they would hear me making a ruckus). Before I could make it out of the chair I realized that it was too late… As I stood up I could feel the electricity spreading around the hemispheres — but this time was different…I had entered the “tonic” stage of the seizure but I didn’t black out right away. I couldn’t talk, and my eyes were rolling towards the back of my head (it felt like my head was spinning around just like Linda Blair from “The Exorcist”) but I was conscious enough to hope that my family would notice me and see it as a game of Charades so that they could come help me, and most importantly, CATCH me before I was to fall and hit the floor hard (I could feel my skeletal muscles tensing up which meant I would quickly lose control of everything).

As I stood there with my eyes rolled towards the back of my head and feeling thankful that I wasn’t projectile vomiting pea soup everywhere (another “Exorcist” reference), I heard Amy say, “Honey, what’s wrong — He’s having a seizure!!! He’s having a seizure!!” In my head I remember thinking, “and the winner is…Amy!!! Tell her what she’s won Bob!” as she swooped in and caught me while I headed rapidly towards the floor (She may look like Lois Lane but she is definitely my Super”wo”man!!!). My sister-in-law later told me that when she noticed what was going on with me, she thought I was trying to point at something on the ceiling (and I apparently looked very awkward while doing so). When you’re in the “tonic” stage, your skeletal muscles tense up, often causing “your extremities to be pulled towards the body or rigidly pushed away” so it looks like your striking weird poses (like I’m doing “The Vogue” or something). My brother helped Amy bring me to the ground so that they could get me on my side (another important thing to do when someone is having a seizure so that they don’t choke). Again I was still conscious at this point and I remember moaning to express “Is this really happening?”

When Josh and Amy brought me to the ground, Amy told Jenny to call 911. Another fortunate thing (just for this particular situation) is that my nephew Jonas had seizures when he was a baby so Josh and Jenny (who is also a nurse) knew what to do. Josh immediately started timing the seizure and Jenny knew exactly what to tell the 911 dispatcher. The last thing I remember is Jenny talking to the dispatcher and Josh and Amy trying to put me on my side and my body not being helpful at all (I had no control over any of my muscles) and again moaning to express to them, “I’m trying to help you but I just can’t do it!” (“I’m giving ‘er all she’s got Captain!”) My brother prayed for it to stop and that’s when I finally blacked out.

Another positive thing was that I woke up in the ambulance instead of the hospital which meant I recovered much quicker this time. After the seizure stops you go into what’s called a “postical state” where you are essentially in an altered state of consciousness. According to Amy, Josh, and Jenny I looked fully alert when the medics got to the house but I really wasn’t conscious. When I first woke up in the ambulance I was in a state of amnesia (I had no idea how I got there). But as I slowly came to, I started remembering what had happened and then heard the super sweet voice (the sweetest voice I’ve ever heard) of my beautiful wife talking to someone in the front seat. One of the medics then asked me how I was feeling and if I knew how I ended up in the ambulance…I slurred, “I’m feeling okay, I guess…and I had a seizure.” He then looked up at Amy, smiled, and said, “He’s alright!” I followed his celebratory declaration by giving Amy a big thumbs up and then immediately started tearing up. The medic rubbed my shoulder and said, “Scary stuff, I know!” As he continued to rub my shoulder I found myself experiencing a series of quick flashbacks all back to the moment the medics got to the house. I remembered looking Amy in the eyes as they got there and just letting out a big sigh. I remembered being extremely difficult with the medics as they tried to put the IV in my arm and the EKG patches on me as well (I was totally out of it and the medics said that it’s pretty common for seizure patients to be difficult like that). Jenny assured them that I’m usually a very kind and cooperative man. Amy later told me that she felt that the medics were Angels. The one rubbing my shoulder gave Amy a hug when they got there and told her that everything was going to be okay. The way they dealt with all of us gave us total peace, so props to Medic One in Seattle for the awesome job they did.

Many of you have asked me what causes the seizures. If you look at the MRI below, the red dot represents the “crater” or the “hole” left from removing the tumor. The irritation from the “crater” causes, at the very least, tiny seizures. They are usually contained to the “crater” area (which in my case is where my left side motor functions are) especially when you’re taking anti-seizure meds. The tiny seizures are unavoidable and a part of the healing process and the anti-seizure medication is supposed to stop the tiny seizures from spreading to the other parts of the brain. But just as every individual’s brain is completely different, what causes the seizures and the amount of anti-seizure medication required to stop them also is different for everybody. It’s a process to figure out the right dosage and the proper cocktail of meds to stop the seizures and even though you’re feeling the small ones you still have to wait a couple days for your body to adjust to any new combination. Trust me, it’s extremely nerve-wracking.

Everyone's brain is different!

On the day of the seizure, Amy and I had spent the afternoon at the zoo with Josh and Jonas right before it happened. Recently, I was going through some of the video I had shot with my phone of our day there and found some footage of us visiting the penguin exhibit. For some reason when I was looking at the footage I flashbacked to my childhood when I would read National Geographic for Kids (I had a subscription) all the time and remembered learning about the “disgusting” process that a lot of animals go through called “moulting” (Honestly, it’s super disgusting…just click on this link to see how disgusting it is). I specifically remember learning about the yellow eyed penguin who usually goes through a 3-4 week annual “moulting” process. “Moulting” is the process in which something is shed and in the case of the yellow eyed penguins it’s their feathers. During the painful process, they are very vulnerable to predation and disease but when the process is over they are stronger than they’ve ever been. In the midst of my suffering, I’m choosing to see this period of recovery as my “moulting” or “refinement” period and know that it’s an unfair, painful, and often disgusting process (I try NOT to think about what my brain probably looks like right now). Amy and I repeatedly say to each other that we’re on the “taking it one day at a time” plan and try to take the attitude each morning of “Carpe Diem” or “Seize the Day.” Something interesting I discovered recently is that Carpe literally means “to pick, pluck, pluck off, cull, crop” (or moult, perhaps?). As I continue to choose to “seize the day” I can’t forget that there is a pretty good sized “crater” in my brain and that it will take a long time to heal, which means I may literally “seize” some days, but it’s just a part of the “moulting” process and one day my brain will be completely healed and I will be stronger than I ever thought possible (i.e. do some “Ninja Warrior”).

Here’s a quick vid of our visit with the penguins…

God is good,

Alex

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