The Glitch

Watch the video first: 

(Video Verbatim –

“Here’s the story,

Of a troubled Amy,

Who was thinking of some stuff to change her world,

All of them did not unfold, last October,

The dumbest one unfurled.”)

I didn’t know I had a story in me to write, but after reading outside on my deck about a writing contest from my favorite magazine on my nephew’s seventh birthday three months ago, these words just spilled out of me. Talk about writing therapy! Five short days later I submitted the final copy of the best non-fiction tale I’ve ever written, one week before the deadline, so here it is & maybe you can learn from my mistakes.

The Glitch

Any semblance of normal I am not. I mean, what other person able to graduate college with high honors & win first place in their university’s creative writing contest, was stuck living at home with their parents? That would be me.

My worst fear was being trapped – at least that’s the way I saw it – in my parents’ house after finishing college. That’s because back in July 1997 at age 13, I was diagnosed with Acute Promyelocytic Leukemia & my world turned upside-down.

“This is the hardest thing in your life that you’ll go through,” I was told by many well-meaning adults time & time again. I was blessed with remarkable parents & two supportive older sisters. With them behind me every step of the way throughout my combatting-cancer years, I endured four merciless & heartbreaking relapses, each one stronger & more difficult for doctors to control. My team of doctors resorted to guessing which medications to use on me because they never before treated a patient with the same horrific & complicated health crises I had. My neuro-opthalmologist Dr. Trobe even brought up my complex case at a conference in Sydney, Australia, to no avail. Miraculously, God gave me strength to simultaneously conquer eight years of brutal forever life-changing cancer treatment & graduate with high honors from the University of Michigan in April 2007.

I’ll always remember, however, my life in what I dubbed the “cancer world.” Every day when I look down I see the cane always by my side as an unavoidable result of battling leukemia. Looking in the mirror to see my permanently bald head reminds me of another side effect I live with.

“We only continued treating you because of your positive attitude,” a physician on my bone marrow transplant team informed me at an appointment following my second unrelated bone marrow transplant.

“A bone marrow transplant is like being run over by a bulldozer & trying to recover,” a different doctor told me before my first BMT at age 16. Boy was he right! My hospital stay lasted a whopping 76 days due to complications. Following the failure of my first three rounds of chemotherapy at age 13 came the first transplant; following its failure, I was given 60 ruthless rounds of the investigational drug arsenic.

“Stop taking the drug!” Dr. Mody my primary oncologist called me at home & yelled partway through the trial. Other patients receiving the trial drug were dropping dead.

The patients turned out to have different backgrounds than me so I continued with arsenic; the devastating failure of arsenic led to my second BMT two years after the first.

“You’ve had the human body’s limit of chemotherapy & radiation,” Dr. Yanik told me seven years after my leukemia diagnosis. What he really meant but didn’t want to say was that another relapse equaled the end of me. He also joked, “If you commit a murder, blood at the scene of the crime would be difficult to trace to you.” (Many years of countless blood, platelet, & transfusions of other blood products – as well as two bone marrow transplants that both changed my current blood type – led to that “sick” attempt at humor.)

I was sure that after college God would answer my prayers to open doors for me to fulfill my lifelong dream of becoming a successful world-traveling writer. Why wouldn’t He?

Fast forward eight years after college to 2015 & find me still sharing an address with the people who raised me. The other people, the ones who told me years ago that fighting cancer would be the hardest thing I faced in my life, were wrong. This was. I desperately sought to find my own little niche in this world where as a physically disabled cancer survivor, I no longer fit. Unlike most young adults, I never got the chance to get a job & move out on my own. Or go out with my friends as a teenager. I was way too busy in a war to live. I felt cheated out of so many things. I deserved a chance to venture out on my own, didn’t I?

That is why in October 2015, I left. Sneaking behind their backs & lying to my parents’ faces, people helped me move out & into a vacant condo on an afternoon my parents were away. Everything – from my bedroom furniture to the stool I sat on in the shower when my joints were weak & collapsing – was taken. I even stole some toiletries from under my Mom’s bathroom sink & a silver cup from her kitchen cabinet as well as a lot of “my” food.

“You’re still in the honeymoon stage of living on your own,” I was told after declaring how much fun I was having. Showering whatever time I wanted without worrying about waking people in the next bedroom, not having to deal with anyone else – I was on cloud nine! For a few days.

Then reality set in along with boredom & an overwhelming thought of, What in the world will I do because I don’t have anywhere close to the energy needed to take care of this place & also live the life I want to enjoy living? Unable to drive anymore because cancer treatment side effects damaged my vision & joints, I was very isolated & unhappy.

“I didn’t know what I was doing,” I sobbed on the phone after calling my parents the seventeenth day of my hopelessly failed endeavor. “I hate it here, I am so sad. I thought I wanted to live on my own but I didn’t know it would be like this. I don’t wanna be here.”

That night my parents, who until that time weren’t aware of my location, came over to the condo for a short visit. I cried, sinking to the floor, as they prepared to leave. The seemingly endless night was miserable & dragged on. My Mom called the next morning. Astonishingly, my forgiving parents graciously opened their hearts & their home to let me move back in. I couldn’t believe it!

Never would I blame the individuals who aided me in my quest. I take full responsibility for my divisive actions. It’s all on me. My biggest regret is hurting my parents beyond measure. Later I learned that they returned home the day I left to find my bedroom door closed & assumed I was sleeping. It wasn’t until a while later when my Mom opened my bedroom door that she was shocked to see I had vanished without a trace.

In hindsight, I realize I wasn’t following God’s Perfect Plan for my life, but my own. I think I needed that awful yet eye-opening moving out catastrophe to occur for three main reasons:

  1. I never would have learned the difficulties of everyday living, like regularly emptying garbage, cleaning the house often, & being conscious about everything from the price of groceries to electricity, if I hadn’t tried doing it all myself.
  2. Never would I have gained a strong newfound respect for my parents, which causes me to treat them better as an adult daughter with a new perspective & grateful to be living in their house.

& MOST of all,

  1. I trust God to fulfill His ways in my life because I’ve learned that trying your own way inevitably leads to despair. Just like the Bible says in Proverbs 19:21: Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.

Nowadays, my passwords for all my accounts at various places are changed to one that reminds me how thankful I am to live with my Dad & Mom. And the fact that the deck they had built off our house right after moving in 12 years ago allows me, despite my mobility issues, the freedom to walk outside on it to read on a sunny summer day. Or the bathroom they had completely redone to accommodate my needs, like the little red bench to sit on after showering to get dressed & the sturdy metal rails to grip to make showering standing up a possibility, instead of always having to sit on my white plastic shower stool. Even the kitchen underwent a makeover with new drawers that rolled fully out to allow easier access for me with my weakened joints & compromised balance.

So glad I am to now be able to fully appreciate the blessings I had before I foolishly left my parents’ house!

My life has been riddled with an abundance of side effects popping up over the years following fighting leukemia. But forget my need to walk assisted by a four-point cane due to neurotoxicity on my brain stem causing imbalance. Or forget the side effects of both a chronically dry mouth & eyes. Or facial paralysis. Or chronic bronchitis. Actually, the latest side effect in my life that I wholeheartedly embrace can be summed up in one simple word.

Content.

The End

In the words of Meredith Grey in Episode 6 of Grey’s Anatomy (that I just began watching in mid-August 2016 on Netflix & in this quote have replaced the swear word with a less intense term): “Even the biggest failure, even the worst, most intractable mistake, beats the heck out of never trying.”

2 thoughts on “The Glitch

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s