I am struggling with writer’s block … the words are not coming out quite the way I want them to and it’s like squeezing toothpaste out of an empty toothpaste tube! To let the creativity flow easily, I decided to answer some questions I get asked a lot and integrate them in these entries. This is part one in a series … or whenever this “writer’s block” ends!
Q: How did you spend your Christmas?
After recovering from a variant of the cold virus in about 36-48 hours (which feels like a record time for having no defense white blood cells), I actually got re-admitted to emergency care for the onset of a sudden, moderately severe headache on Christmas Day. It’s the kind of headache you feel when someone pushes your head violently against a blank, white wall – you get a dizzying effect as well as a sharp sensation afterwards that never quite goes away. I called my doctor to actually get permission to take a small dose of Tylenol (less than 500 mg) to ward off the pain temporarily, but since I also had low platelets and fell neutropenic they suggested that it would be safer if I get evaluated and cleared for potential internal bleeding in the brain right away.
I WAS SCARED. There are many vital organs in our bodies, but damn, I thought — not my brain. And on Christmas Day? Shucks. As one of my dear friends said to me with utmost honesty, “You have been dealt an extraordinarily [bad] hand”. However, I would like to think that there is some balance in the universe, and quite luckily, I passed all the exhaustive tests with flying colors. Results came negative. I was ready to go by the end of the 4th hour. For courage and to pass the time, I read a “cliff-notes” version of Nelson Mandela’s biography on Wikipedia.
Q: When do you start chemotherapy again? How many rounds left?
Pretty soon actually. I’m a little delayed on my schedule, because my body took quite the hit from the small cold and it’s struggling to produce the next set of white blood defensive troops! My predictions land somewhere near the first to second week of January. I will begin Round 4 by this time, and consequently I will have 3 left.
Q: What’s it like exposing yourself to the public about having a life-threatening disease? Shouldn’t it be something kept privately?
Leukemia is a very unique type of blood cancer … in the sense that it involves a community of supporters to proactively help save a patient from the illness by searching for a matching, registered donor. I come from a Chinese-American family and we’re traditionally very private about these matters. Then again, who isn’t? How many people will you go up to and say, “Hi, I’m so and so, and I have leukemia.” It kind of leaves a bad taste in your mouth. Before all of this began, it took me a while to convince my parents (while I was hospitalized) that this type of search for a non-related donor requires public exposure, no matter how much we treasured and valued privacy.
Q: Do we gain a full understanding of your situation through your blog? All the ups and downs?
I would say not entirely, because I only reveal 5% of myself to the public. I save the other 95% for my family and friends who do know me. I still hold steadfast to the tenets of privacy and protect them aggressively.
It’s been such a long time since I’ve kept a journal. I used to maintain a public blog throughout high school joining the ranks of my friends as we disclosed and poured our thoughts, dreams, and aspirations into these websites, following the xanga trend back in the heyday when its popularity was comparable to today’s social networks like mySpace and Facebook. After reading a friend’s blog, however, I was inspired to write again, but this time for all the right reasons and with outstanding purpose.
Maintaining a public blog breaks the sacred curtain of privacy. There were times when I’d read a couple and think, “Why would you make all of this known to the public eye? Isn’t that desecrating?” One of my favorite explanations for the importance of maintaining your privacy comes from Czech writer Milan Kundera’s Testaments Betrayed:
“…that we act different in private than in public is everyone’s most conspicuous experience, it is the very ground of the individual; curiously, this obvious fact remains unconscious, unacknowledged, forever obscured by lyrical dreams of the transparent glass house, it is rarely understood to be the value one must defend beyond all others…Private and public are two essentially different worlds and that respect for that difference is the indispensable condition, the sine qua non, for a man to live free; that the curtain separating these two worlds is not to be tampered with…”
I created this blog as a personal outlet, but one in which it is safe enough to share certain experiences and perspectives to the public eye. It is a miniscule snapshot into my life, more of a collage or scrapbook really than anything else. Nothing is in chronological order. It’s not a reflection on what I did each day. It’s really more of a quick glimpse into certain, extraordinary moments in time that I’d like to remember.
As for the name, “Autumn in January,” it’s a combination of one of my favorite seasons of the year along with my birth month. My mother named me “Janet” after the month of January and it has stuck with me ever since.
To truly understand the situation, you’d honestly have to step in my shoes and be diagnosed with acute leukemia. That’s the only way you’d get the full, complete picture. And I don’t want to necessarily lend these shoes out on a whim, even for a brisk walk that you’d like to take in them, because it’s a painful journey.
Q: Will this affect your employment prospects?
There’s a pretty good chance I will have a hard time finding a job if I gain full recovery, and not because I’m incapable of working. Future employers may have heard about this grassroots movement; it’s a little aggravating to find your name easily searched through Google and synonymously linked to leukemia. I may be discriminated informally by a health pre-condition, no matter what innate talent and skills I can offer to the table. But that’s a sacrifice I’m willing to take if it means this particular story can get more registered donors for other patients. I’m assured though by the fact that the adversity of finding a teaching job in this economy won’t be nearly as difficult as fighting against a blood cancer. You can call it stubborn, you can call it just plain stupid or heroic … I just feel as if it’s the right thing to do. Sometimes, it sucks to have your life guided by an unwavering moral compass
Q: What do you want to tell people that they didn’t know already?
I enjoy doing decent work without being recognized for it in any fashion or form. I don’t need accolades or awards to echo in my ear. If they can increase the legitimacy and credibility of a cause or the work that I do, then all right. If I have to show future employers what I am capable of accomplishing, then okay, that’s probably something I need to earn in due time. But singing praises wasn’t something I was raised to chase after for the pure purposes of stroking my ego; I usually like to do a lot of behind-the-scenes work and not get any acknowledgement from it because I don’t prefer the limelight. From a young age, my parents taught me humility and modesty to keep rising egos in check. I was more acclimated with receiving constructive criticism than anything else. And holding a nice second place in any type of competition I entered whether it was piano, choral, speech, business … the whole slew of high school trophies that have slowly collected dust. I liked hiding under second place and NOT getting the winning position. It felt comfortable, quite honestly. Perhaps this is why I can be very self-deprecating if you get to know me; friends use to ask why I would make fun of myself so much, and it’s really a way for me to feel grounded and not something rooted out of low self-confidence.
I tend to quote Nelson Mandela a lot, but what I need to say in the end can easily be summarized from one of the most well-respected leaders of our time:
“It is better to lead from behind and to put others in front, especially when you celebrate victory when nice things occur. You take the front line when there is danger. Then people will appreciate your leadership.”