A POST-STORY EXPLORATION OF DEX BALAGON AND MY CANCER ADVENTURES...
Thanks for reading this "interview" of sorts after reading (or before reading) my first attempt at writing fan fiction. I know I'm not a brilliant writer and hell, I'm probably not even a good writer, but I enjoy writing and I find it therapeutic as I walk through my days as someone being treated for Multiple Myeloma. I hope you enjoy my words and will go on my journey with me. (You can follow my Multiple Myeloma blog here!)
A LITTLE BIT ABOUT MY CANCER...
I was diagnosed with Multiple Myeloma, a blood cancer, in December 2014. At the time, the oncologist advised me that the average life expectancy was roughly ten years after diagnosis. At the appointment where this was revealed to me, my doctor also told me that my immune system was compromised and that my bones were weak. He also gave me some other information and asked if I had any other questions before he continued. I immediately responded "yes, I have on my calendar a Star Wars convention in Anaheim. That's in April. Will I be able to fly and be around all of those people? I really need to go because these are my friends and I only see some of them every couple years." Dr. Kevin was taken aback by the casual tone of my inquiry and laughed as he responded, "Yes! Yes, you can. You'll be far enough along on your treatments to be able to travel and you'll definitely need this trip by then." Pleased by this answer, I let him continue.
Additionally, Multiple Myeloma cannot be cured. It's a treated as a chronic disease and each time it comes back, it mutates, gets more aggressive and becomes harder to treat. As it is, I am difficult to treat and the disease is difficult to track, so I'm pretty amused by the hand I've been dealt.
A LITTLE ABOUT MY FAMILY...
My mother, who is from Japan, tells me about my grandfather, Saju Sakai. He was a bank manager and a city council person in Fukushima Prefecture. During the war, he was a major thorn in the side of the Japanese government--organizing protests, demonstrations and addressing the overall stupidity of Tojo Hideki and the complacency of Emperor Hirohito. My grandmother would often prepare their kids by telling them where grandpa was and that we'd know he was okay if he was home the next morning. He was a rabble rouser and I, apparently, followed in his footsteps (according to my family).
Additionally, and here's a little background on why my religious views are as loose as they are:
- Mother: Shinto/Buddhist/Catholic > Christian > Presbyterian > goes to a Methodist church
- Father: Quaker > Christian > Presbyterian > Jewish
The Force is with us.
WHAT'S IN A NAME...?
As a part of my self-mental care and personal emotional therapy, I found comfort and escape in the Star Wars universe. I used a lot of imagery and imagined a lot of potential scenarios in that universe to help me heal or even deal with the stressors of treatment and pain.
Because of this, my mind created an alter-ego--a character, if you will, to go on this journey. As such, I started to craft a real life version of who I was inside my head and became interested in costuming. An extension of these "stories" and the realization of this character in the analogue world led me to dabble in writing my first fan fiction adventure based on this version of me. It made sense because a friend who happens to be a legitimate writer had been encouraging me to write something... anything that helped me tell a tale. She believed in me. Thank you, A.A. (you'll find these initials in the story if you read or plan to read it).
In order for this character to be a character and not just something stuck inside my head, he needed a name. Where do you start when you look for a name? For me, I didn't have to look much further than one of the standard meds that we Myeloma people take: Dexamethasone. This drug is a steroid that we take to help us combat the disease and tolerate our weekly chemo. The unfortunate side effect of the drug is that we cannot sleep, we become agitated, we become manic and it causes some people to overeat and gain massive amounts of weight. This drug is not our friend, though we refer to it affectionately refer to it as "dex".
Around the same time, I became familiar with and amused by the word balagan. Balagan, borrowed from the Russians, is used daily by Jewish people. The word translates to "mess" and "chaos", which is actually a pretty good word to pair with Dexamethasone. Since Balagan was too literal, I Star Wars'ed it up by changing it to "Balagon" and thus, Dex Balagon was born.
Feeling that Dex should be a nickname, I looked to more earthly occurrences of the name and found it to be a derivation from Declan, I name I have long liked. Also around the same time, I found myself engaged in almost daily Twitter exchanges with the actor Mark Deklin (who is a very nice man and human, I might add). I liked the spelling of his last name, so I went from Declan to Deklin, which again, looks more "Star Wars".
Deklin "Dex" Balagon was born.
For those of you who've taken a moment or many out of your lives to join me on this tale, I thank you for doing so. I am really doing it for me, but I do hope that others may take something away from it. In getting to know Dex, you get to know a little bit of me and I enjoy that. Our lives are connected by the very fact that we share time on this planet together. Know that you're loved and I support anything that fulfills your desires, makes you happy or contributes positively to the lives of others. It can be your secret or it can be made public. Either way, it is yours and it helps define you as you grow and will carry you to the end of your days.
XOXO
