Reflections on Life Changing Events (an abridged set of journal entries)
4/6/2004
Arteriovenous Malformation…the words that have ruled my emotions over the past week, and will most assuredly change my life forever. I’m in excellent health, aside from this tangle in my brain…and to think I’ve had this all my life and stumbled onto it as a fluke. People keep telling me I’m lucky to have caught it, but I have to wonder if it would’ve ever caused me a problem. It’s completely possible that I could live out my entire life and never have a problem…then again, I could pop - bleed - game over.
I’m a collage of emotions…fright, anger, frustration, sadness…and yet, a strong sense of contentment and happiness for the way I’ve lived my life. You know how they say that your life flashes before your eyes just before you die? Well, that’s mostly correct. In all reality, it begins flashing as soon as you believe you’re about to die. Events like this generally make people reevaluate their lives and learn to savor it more. In my case though, I have always tried to live every moment of my life to the fullest, consistently stating that, “some things are worth staying up for.” That being said, I was very pleased to reflect on my life and feel that I have very few regrets.
The way I’ve always loved those around me has been a blessing to me in this past week, as my support network proved to be phenomenal. LeeAnn came in from Chicago, Ayla visited me in the hospital, despite her CFS, Ray told his boss that he was leaving work as soon as he heard what was wrong with me, and my family has been taking care of me every step of the way.
4/14/2004
I hate how this medical situation has put my life into a form of stasis. Over the past few months, I’ve walked the path to getting a place of my own. I’ve been approved for a loan and was all set to sign on a house, and now I won’t. Who knows what’s going to happen to me? I could die, suffer any level of brain damage, or become in some other way incapable of working…which would mean I couldn’t make house payments.
I HATE THIS FUCKING MALFORMATION!!! Even though we’re taking our time to do this thing right, making sure I take every test possible to help ensure it will go well, I can’t escape the reality that I need to plan for the worst. I need to give my parents the power of attorney and name them patient advocate. I can live every day to the fullest, but at this point, I can’t afford to look any further than that. It’s a nagging reminder that I can’t ignore…that I have to deal with it…and accept that even though I’m still alive and well, I need to start planning my funeral.
12/19/2004
I haven't written since mid-April; that's horrible! At the time, I had been reflecting on life in general and all my relationships within it. You know, they say that your life flashes before your eyes right before you die. Well, that's mostly accurate. It actually happens when you realize/believe that you are about to die. In my case, I had time to think about it long enough to realize what I regretted in my life. It was March 29th, and I went into the hospital for dizzy spells...then found out about my AVM. To say the least, it scared the shit out of me, and the way the doctor put it, I was freaking out even more. The way he was talking, it sounded like I was going in for brain surgery that night, with a large likelihood of complications due to the size of my AVM.
Lucky for me, the doctors decided not to rush things and take their time with the appropriate testing consultations. Thus, over the next month and a half, I had numerous tests and a whole lot of anxiety. One thing that I did find out is that stress really does cause a person to put on weight. Between March and July, I put on a good 15+ pounds. Anyhow...due to the fact that I still wasn't comfortable with my situation, there were very few people that I actually told about my condition. For every new person that found out, that was one more time I had to tell the story, causing me to think about it more than I wanted too, and thereby contributing to more anxiety.
The one thing that I was truly grateful for was the love and support that I received from my friends and family. I had people take off work, come in from Chicago, and go out of their way to help me out. The two people that I owe the most gratitude to are Eva, my former co-worker, and her husband Tim. Eva is my angel. During the last month and a half of the school year, and all of this semester in the new one, they have graciously allowed me to live in their home with them. This is the greatest gift that a person can ever receive. To bring another person into your home shows a level of friendship, trust, love, compassion and generosity that compares to no other. I will never be able to fully show my deep appreciation for everything they've done for me. They're amazing people, and deserve all the goodness the world has to offer them.
12/19/2004
Needless to say, I’ve been thinking a lot about my life since I found out about my AVM. I always try to go with the ‘everything happens for a reason’ mentality. That being said, it made me think about why this happened to me, and why it turned out the way it did. Right off the bat, I should state that statistically, I have been beating the odds in a huge way. Given a normal life-style, a person with my condition, as old as I am, has only a 36% chance of still being alive. Now, given my Kanar and SCA experiences, I think I’m even luckier than that. And then you can factor in another 20% risk for making it through my two brain surgeries. Thus, the probability of my still being alive and well is 26%. Realizing this, I have to ask, “Why? Why has this happened, and why have I managed to pull through it all?” The only answer that I could come up with is that it’s not my time to die yet, and more importantly, I needed to realize that I have some greater purpose in being here.
12/22/2004
Being able to drive again for the first time in months reminds me of how disorienting it was to stop driving in the first place. Before my surgeries, I drove all the time and saw so many different people all the time. I regularly saw Gary, Ray, Sean, my co-workers and various others on a fairly regular basis. I would also to swing dancing and SCA fighter practices weekly. But once my surgery happened, it all changed.
I hate depending on other people; I've always been so self-sufficient. So needless to say, I only said something when it was something I knew I didn't want to miss. That basically means that I only asked when someone had informed me of an outing that I didn't want to miss. This was rather unlike me as well. All my life, I've typically been the social coordinator. I would think something up, call everyone and their mother, and then make it happen. Once my driving was taken away from me, I couldn't do it. In general, I couldn't hang out with anyone unless they were willing to pick me up, which I didn't feel comfortable doing.
Well, now I can drive again. I no longer have to be a charity case that has to be carted along everywhere. I no longer have to live under someone else's roof and be overly conscious of their rules and level of comfort. I no longer have to feel guilty about calling up my friends to hang out. It's amazing how liberating it is to drive again...and how crippled I felt when I couldn't.
3/21/2005
I really think I need to talk to people who knew me fairly well before I underwent all my medical issues, and have them evaluate how I may have changed. There are some things that are extremely obvious, which are the physical conditions and limitations that are a result of everything. I went bald for a while, lost some mobility and sensation on the right side of my body, had seizures, had to stop fighting in the SCA, got laid out last summer and remember very little of it, and I couldn't drive for six months.
I've done a lot of thinking back on what things were like before my medical issues and what happened during them, but I haven't given a whole lot of thought to who I am now, and how I may have changed. So, now that most of my medical issues are dealt with, how have I changed? What outlooks on life are now different? What about my demeanor? The way I relate to people? I don't really know. I think that I may have slowed down a bit...possibly became a bit more serious. But if that's true, I don't know how I really feel about that. I know that there are times to get down to business, but I want to be free, fun loving, and bordering on childlike at times...but I can't seem to remember the last time I really had a Great Laugh, or was glowing with happiness or contentment. Perhaps it's because I've gone into scholastic overdrive...but I feel like I was happier before all this happened to me. Humph...
3/29/2005
I realized something earlier today, and it's really had me thinking. It's been exactly one year since I found out about my AVM. It was the day that everything in my life got thrown out of sorts. I woke up in the morning, thinking that I was just sick, possibly with a case of really bad vertigo; three hours later, I found out that I was lucky to even be alive. In a very matter of fact way, the doctor told me what was wrong with me, and informed me that they were getting a bed ready for me at a different hospital where I might be undergoing brain surgery that very night. I remember sitting there in the ER with my dad when they walked away after telling us what was going on. We sat there silently for a minute trying to process everything, and then without a word being spoken, tears just started flowing from my eyes. I can honestly say that I had never been more scared in my entire life.
When I discovered that I didn't have to have surgery that night, I was very relieved, but at the same time frustrated. In a sense, I just wanted to get it over with, as I knew for a fact that it had to happen eventually. But, as so many people wish when they realize that there time has come, I had my opportunity to make sure I told everyone everything I needed to tell them.
I had to look at things from a perspective that I might actually die. When I was at Botsford, they were telling me of the risks of open brain surgery, and my chances of living, at least fully functionally, seemed dim. So I spent a lot of time writing, crying, scarred, and talking to my closest friends. It actually pissed me off when people that I wasn’t close to found out and tried to talk to me about it. In a lot of ways, it seemed like people were more curious than anything... It was in this way that I discovered my true feelings about where people fit into my life. I realized a lot of things throughout this experience; I realized that teaching was what I was meant to do, as I adamantly wanted to get back to work immediately, even after all my surgeries when the doctors were telling me to take it easy. Hell, being unable to use my right hand at all, I quite literally taped the chalk to my hand to finish teaching the school year…now that says something.
I remember going swing dancing on May 26th, the night before my first surgery. All night, Carolyn, my girlfriend at the time, kept me distracted and having fun...and then on the way home, I broke down. I started hyperventilating and crying at the wheel, forcing me to pull over on the side of the freeway. Carolyn switched seats with me, took me home and put me to bed, rubbing my back as I laid there, in the fetal position, surpassing my fear level back in March.
The 27th was my surgery, and the beginning of my side effects. The entire day was painful. As with any brain surgery, I had the distinct pleasure of being awake for the entire thing. It was a surreal experience. There were three doctors in the room, one of which was navigating the catheter through my brain while looking at the monitor that they had constantly scanning my brain. Every now and then, as the catheter was being maneuvered, I would have extremely sharp bursts of pain. The strangest part of the experience would be the times they would tell me to hold my breath, presumably to inject the glue for the embolization, and then wouldn’t tell me when it was ok to start breathing again…so after 30 seconds or so, I’d start sneaking them in.
When I first came out of the surgery, my right side started to spasm and grew numb, with a complete motor skill loss on my right hand and partial motor loss on the rest of my right side. In other words, even though half of the malformation was gone, it pissed my brain the hell off; the left side of the brain got to screw up the right side of my body. Additionally, it led to some wonderful experiences in the months to come.
The week of June 14th...yeah. So, on the 14th, I went to stay the night with Carolyn. I woke up on the morning of the 15th for a few short seconds as I entered a grand maul seizure. The day of my seizures, from my memory, lasted about a minute and a half: 10 seconds of going into my first seizure, 20 seconds of me pulling on my boxers with paramedics standing over me, 20 seconds of me calling Eva to tell her I was going to miss the graduation rehearsal, 5 seconds of my mom walking into my hospital room crying, 5 seconds of me going down the elevator for an MRI, 10 seconds of me getting back from the MRI and going into my second seizure, 5 seconds of me curled up in my mom's truck on the way home and telling her that Taco Bell would be too spicy for my bit up tongue, and a few seconds of sucking on a cappuccino blast. However, I apparently was quite coherent to the rest of the world, held conversations, and even gave my mother alternate directions out of Ann Arbor.
On the 16th, I'm glad I took pictures of the graduation, b/c I can't remember a bit of it. On the 17th, I had my radio surgery, of which I only remember bits and pieces. I remember getting the halo put on, how difficult it was to eat while wearing it, my dad running to the car to get the camera, and the actual radio-surgery.
Following the same trend, I don't remember most of my summer. There are things that I supposedly did and said that I don't even remember. Just recently, when unpacking after moving into my new house, I discovered a get-well card covered in stickers from Matt, Brandon and Carolyn. Thinking back, I can only vaguely remember them coming to see me after surgery. Apparently, my Aunt and a friend of the family came too. I don't remember any of it. The only vivid thing I remember from that day is what I said to my dad. I can't remember what he said to provoke my response, but I remember saying, "You know, if I could move my hand right now, I'd flick you off. But I can't...so fuck you." ...the things you remember. Anyhow, when I found this card, I instantly had to call Matt, Brandon and Carolyn and give them my appreciation again.
About a week ago, I wrote about how I may have changed. I can't really say for sure. I know that I value life and love to a higher extent, even though it was extremely high to begin with. I know that I've grown to appreciate the things and people I have more. I also know that I've become more driven to reach my goals...why else would I be going to school double time? There are so many things that have happened in the past year. There are so many people that have come through for me...too many to name.
There are so many things that I just don't remember from last summer, and even a few pieces of the fall. I hear about things that I supposedly did or said, and I just have to role with it, b/c I honestly don't know. I guess...I'm just grateful to be alive, grateful that I've managed to live to appreciate all the things that I didn't really notice before, happy that I know for a fact that I have true friends, and I wonder how I can ever truly show my love and appreciation for all those who deserve it. There just aren't enough hours in the day. I am in a complete state of awe. I feel happy...yet I'm on the brink of tears. I have an appreciation for everything I’ve received, but sadness that I haven't truly shown it, and that I don't know if I ever fully can. It makes me want to call every friend and family member I have and spend hours talking to them all. I really want to talk, to love, to wrap myself up into a ball of passion and appreciation for life.
5/26/2005
With every fiber of my being, I try to live a life of passion. My greatest fear in life is to live a life without excitement for what I am doing. Without excitement, without passion, what are we living for? I love to feel truly alive, and I love seeing that feeling in others. It actually pains me to see somebody stuck in a rut, just trying to get through the day. It makes me want to tear them away from their discontent and place them back on their personal path to happiness.
Live, Love, Laugh...then let the rest fall into place.