Saturday, June 7, 2014

Thoughts on The Fault in Our Stars

By now, it seems like most of the world has come to discover The Fault in Our Stars. After all, a critically acclaimed and longstanding New York Time bestselling book and wildly popular movie featuring teens facing illness and disability is bound to stand out against typical teenage fare. While I am so excited to see so many people touched and moved by this amazing story, witnessing the flurry of excitement surrounding the story this week and seeing the movie has inspired me to break my silence on this blog to simply write my thoughts on the story and what it means for me.

I found TFIOS (as I'll abbreviate it) shortly before its publication date in January of 2012. Back then, I had no idea who John Green was, who Esther Earl was, or even if I would like it. After all, when living as a full-time "professional sick kid" (from TFIOS), I wasn't sure I was ready to escape from my world of appointments, procedures and my mystery diagnosis into the world of childhood cancer. Nevertheless, I ended up preordering it and was hooked after a couple of pages (read my review from back then here). What drew me in so entirely was Green's ability to look past the main character's diagnosis to portray them as vibrant, living people- not pitiable teenagers held on the pedestal of "illness."  But what also hit a nerve with me is his observations about what it is like to be living with illness but having no clear direction as to it's course, treatment, or effect on loved ones. While it's easy to write a clear decline for a character who is ill, it's almost unheard of for them to be living in flux as Hazel (the main character) does given no clear prognosis as to her decline. As someone who still has yet to know the extent to my condition, reading about another girl my age in this no man's land of perpetual waiting made me feel like I had found my first friend who completely understood the part of me who is always hidden beneath my smile and outward persona. Green was able to capture the constant struggle to remain "normal" when normal as one knew it will never again return and a chronically ill teen's deepest fears about pain, losing loved ones, and leaving behind those we love the most. 

After reading, and rereading TFIOS both in good times and bad, I found comfort in Hazel's voice and reached out to her when I needed that one person in the whole world who understood me. But in getting drawn into her world, and subsequently John Green's, I had the privilege to meet another incredible girl who completely understood me- Esther Earl. Unlike Hazel, Esther was not a work of fiction, but a beautiful and brave girl who very much alive in our world. Unfortunately, I could not meet her in person, and instead got to know her as I did Hazel through the pages of a book. Written using her own words and those of the friends and family who loved her, This Star Won't Go Out (my review here) was published this year as a celebration of her life and legacy. Even more so than Hazel, Esther inspired me with her heart and humor when facing the toughest of life's challenges head on. We shared many loves including John Green, Harry Potter, and writing, which allowed me to once again feel a friendship beyond the page. 


As the world now knows, TFIOS is now a movie that is taking the world (and box offices) by storm. In the months leading up to its release, I knew I wanted- no, needed- to see this movie come to life. Going into it, I knew it would be different than the book, but that was okay. Without completely typing a dictionary-length post, I must say I was completely satisfied with the movie and its handling of the story. For the first time, I was able to go see a movie that unashamedly portrayed the main characters with physical disabilities and limitations. I cried, as many other did, but this time feeling all the more kinship knowing I, too, am facing a condition that is an "inevitable by-product of evolution." No, not cancer, but a mitochondrial disorder. I'll explain more in later posts when we learn more about the scope and impact of the condition. I cried as Gus, another main character, fought to maintain independence and autonomy despite his increasing dependence on others and a wheelchair as his condition worsened. This struggle is one I have on a daily basis as my impatient "I can do this" retorts echo as others step in to help me out.

Emerging from the theater, I was exhausted but fulfilled. Everyone did their job and preserved the heart and soul of the film. I cannot thank John Green or the Earl family enough for their openness and willingness to put down these stories into print so that they can stand as a validation that a short life is not an insignificant one and leaving a legacy at any age starts with love, pure and simple. 


In a preview of things to come, here's a snapshot from opening night of the TFIOS movie. In it, you'll see a special guest and my date for the showing- Locke, my new service dog and constant companion. Although we've known each other five weeks, our bond has solidified into one that I can only describe as star-crossed. Already he has changed my life by giving me new-found independence and hope which has helped me gain confidence and courage to face each day. In the picture, though it may be hard to see, I'm making a heart with my hands. Why? Well, every year on Esther's birthday, the nerdfighter community rallies to celebrate love and life on Esther Day. In leading up to the August 3rd holiday, the organizers of the event want to celebrate the every day leading up to the event in a variety of ways (find out more here.) One such way is going to a showing of TFIOS and snapping a photo with a hand heart to celebrate love. This small gesture is my way of remembering Esther and making sure her star won't go out. 

Saturday, May 17, 2014

A Slight Delay

If you've wondered where I've been the past few weeks, I just wanted to write a post to say that I have been super busy racing to the finish line of my senior year of high school and in full-time training with my new service dog (who I will introduce as soon as the match is finalized). While I had hoped that I could keep up writing during this exciting time, I have been flat-out exhausted each night when I go to turn my computer on. 

So far, service dog team training has been the most incredible experience of my life and I am so proud to be pared with an beautiful, intelligent dog. I know my life is forever changed and opened up to new possibilities thanks to his training and the connections I've made with fellow classmates and all the staff who make this possible. 

Although I wish there were more hours in the day, I will probably be delayed a few more weeks while I sort out and finish up everything on my to-do list. As soon as I can free up some spare time and energy, I cannot wait to come back to Small Steps and pick up where I left off. 

Thursday, April 17, 2014

I Couldn't Be Happier

In the Broadway musical Wicked (which I highly recommend), the second act opens with Glinda (the "good witch") surrounded by the hustle and bustle of the Emerald City. She has her perfect man, political power, and everything she ever wanted. Or so it appears. In the closing lines of her song of celebration she ends with these perceptive lines:


"That's why I couldn't be happier
No, I couldn't be happier
Though it is, I admit
The tiniest bit
Unlike I anticipated

But I couldn't be happier

Simply couldn't be happier

Well - not "simply":
'Cause getting your dreams
It's strange, but it seems
A little - well - complicated
There's a kind of a sort of : cost
There's a couple of things get: lost
There are bridges you cross
You didn't know you crossed
Until you've crossed
And if that joy, that thrill
Doesn't thrill you like you think it will
Still - 
With this perfect finale
The cheers and ballyhoo
Who wouldn't be happier?
So I couldn't be happier
Because happy is what happens
When all your dreams come true
Well, isn't it?
Happy is what happens
When your dreams come true!"
From "Thank Goodness" from Wicked. Lyricist: Stephen Schwartz.

What is so powerful about these lyrics is that they ring true for all of us. In life, we go through and gather new experiences and seek what's always just out of reach. There are times when it feels like everything is coming together into what it should be, but in an instant, it can all disappear as if it was a mere illusion. 

This post is the culmination of my experience writing Small Steps and the compounding of events happening in my life right now. If you are a fairly frequent reader, you've probably noticed my posts have been irregular at best over the months. So much has been happening "behind the scenes" which I haven't shared through my posts. The problem with being a blogger, is that I write to uplift myself. I share my success and hope, but often hide my insecurities and fears, not wanting to reveal the whole truth. Although I have every intention to write, sometimes writing a post feels like a confessional or that I am revealing an unseen part of myself, which is a nerve wracking feeling. I want to write the truth, but the truth sometimes is a little more complicated that it seems. This scary prospect has deferred quite a few posts recently.

In my last post, I shared some of the positives happening in my life- obtaining a service dog, going to college, and having renewed hope on the medical front thanks to the dedication of a new doctor. As easy as it is to only write the good chapters in my life, like Glinda, I still have moments when I stop and look around and sense there is something missing. It's hard to reconcile all the positive happenings in my life with the knowledge that I am still fighting to even make it through the day sometimes. The physical exhaustion incurred by my body's fight and the mental and emotional exhaustion incurred by my constant loneliness, tiredness, and burn out from giving 100% of myself sometimes to causes I love and commitments I make. I am not a perfect person, nor do I pretend to be, but sometimes I think when I try too hard to put all the pieces together, I am haunted by the shadow of the girl I once was and no longer can be. I want to be more and do more than ever before, but at the same time, I have to accept that I am limited and will be for the foreseeable future.

Compounding everything is the eerie reminder that this Saturday, April 19th, is the three year anniversary of my first ER visit, which was the spark that started this leg of my journey of subsequent hospitalizations and ER visits. A lifetime ago, it's easy to forget that life as I know it hasn't always been this way. I think moments like these and the conflicted feelings I feel are all part of the healing cycle for chronic and life-changing illness. At times, I marvel that I have come so far physically and emotionally, and at others, I desperately attempt to push my body past its limits to see if I could just do a little more if I "tried" harder. It is in these moments that I still grieve my old life. Although I know things can never go back to how they were, it doesn't change the fact that a small part of me wishes this were true. As much as I know that I am worthy of happiness and having the chance to love my life as it is, I can't allow myself to be happy sometimes. This is all part of the mourning process when living alongside chronic illness, but it doesn't make it any easier.

I guess the point of my rambling thoughts is that despite all of my doubts and fears, I am moving ahead. I am not giving up on myself or my ultimate happiness. Small Steps will remain a log in which I will write my story on my terms. Though I may be in and out at times, I do want to keep it going because it has kept me going. Thanks to those of you who still tune in and lift me up, it has meant all the difference. 

Saturday, March 29, 2014

When It Rains... It Pours

For the past few weeks, I've felt like a bird cooped up in a cage. As a high school senior anxiously awaiting the chance to put all the pieces of the "college" puzzle together, this time of year can incur a range of emotions from elation to disappointment. Added to that the still unknown status of my medical condition, the omnipresent knowledge of the barriers before me is almost as frustrating and exhausting. 

However, there are days when the glacial pace of day-to-day life accelerates to a breakneck pace that seems to put many pieces in play. This past week has been one of those wild weeks that has left me breathless and exhilarated simultaneously and has renewed my hope that things are shifting for the better. 

The first piece of news I'm excited to share is that I will soon be welcoming a service dog into my life. Although I won't meet or train with my future partner for a little bit longer, the mere fact that the the stars have aligned and provided this opportunity has given me hope and something to look forward to as I now constantly dream about how life will change with a four-legged friend at my side wherever I go. 

Other news worth sharing is that my medical journey has taken (yet another) turn towards an unexplored area that is offering great promise of long overdue answers. Although two muscle biopsies and a third spinal tap later, my body isn't too thrilled about the new leads on the case, I am encouraged by the pursuit and the promise of a fresh perspective from a new doctor. This comes after being told by some of my local doctors that there was nothing more they could do for me, I will take this twist in stride, knowing that it may mean answers, it may mean none. 

Although these positive points offer great hope and possibility, I am constantly reminded of the fragility of these hopes. My service dog, though a great asset for accessibility and an exciting opportunity, will mean a lot of work and exertion- two things that my body sometime struggles with. Likewise, the medical tests may ultimately pan out, leaving us with nothing more than false hope, and the task of answering the omnipresent questions: when or if we will ever reach answers, much less a treatment or cure. 

This is when the perceptive words of one of my favorite poems echoes once again in my journey: "the start of something new brings the hope of something great." 

Small steps, always small steps will get me there, closer and closer. I have come this far and know that with each step, my path will unfurl before me and reveal what is meant to be. 

Sunday, March 16, 2014

Look Who's Two!

It's hard to believe that two years ago today I decided to set in motion Small Steps. Frustrated, isolated, and no longer wanting to hide behind my medical condition and its struggles, I created this blog and never looked back. 

In more ways than one, I think it saved my life. 

Writing each new post, whether serious or silly, has been a therapeutic exercise which often provides me deeper insight into myself and others. I start a post one with an idea of what I want to write about, but it always seems to veer towards what's on my mind or what I need to say. In doing so, I have often written what I cannot express to any one else. Although my posts are scattered- sometimes many at once, sometimes spread apart- they are there for me when I need them. They remind me not of what I'm up against, but what I'm living for. 

I want to thank you, the reader, for hanging in there and following each small step. Your support has given me confidence to keep on writing in the hope that my words can transcend this blog and the confines of my computer screen.

Looking ahead, I hope to encounter more answers than dead ends and to assemble some more pieces of the puzzle of life to get a more clear glimpse of where I'm going and who I'll be. I thought I'd share a quote from my very first blog post in a reflection on the small steps that have carried me over these years:  "I truly believe that on the road to recovery, and of life... small steps may not change things immediately, but they are progress in the right direction. Which is a lot better than in the wrong direction."

Monday, March 10, 2014

Book Review: This Star Won't Go Out

Image credit: Goodreads
If you are a long-time follower, someone who is seeing this page for the first time, or someone in between, you probably know that this isn't really a book review blog. After all, there are a precious few books that I really recommend for understanding chronic illness, disability, and being a teenager dealing with both. I often joke that real life is often stranger than fiction for teens juggling life-changing medical conditions with hospitals, doctors, and tests juxtaposed with school, friends, and our insatiable desire for independence. But this joke is not really funny after a while because the isolation and ever-present fear that persists with medical conditions can soon lead to fading friendships, and the nagging feeling that there's no one who really "gets it."  

However, thanks to a newly released book entitled This Star Won't Go Out: The Life and Words of Esther Earl, I had the rare, but wonderful opportunity to "meet" a girl whose condition was far different than mine, but seemed to understand everything I've been through and the suspended reality of my life. 

The book is a collection of Ether's journals, letters, drawings, and fiction that is complemented by reflections and essays by her family and friends which together tell the story of her remarkable outlook on life and how she used her passion for life to transcend the horrors of the cancer she battled. Although she ultimately lost her battle at age 16 in 2010, her spirit is alive and well in the pages of the book she never lived to to see realized in such a beautiful fashion.

What really hit home for me when reading the book, was her astute ability to put the mixed feelings of being chronically ill into words. I have long tried to communicate the darkness of pain, guilt, and self-doubt that are my constant companions each and every moment of the day. However, she defied this darkness through her writing and wholehearted passion for her various interests. Without inhibition, she discloses her fears and deepest thoughts about existence and the meaning of life. Like her, I want to make a real difference in the world despite my limitations and disabilities and to render my pain and suffering into something that transcends the cruel claws of illness. She refused to be defined by anyone but herself and despite the fact she was not perfect, in the words of one of her friends, "she was the epitome of how to be imperfect."

Over the course of reading the book, each new voice instantly felt like an old friend. The loss and grief her friends and family expressed in the wake of her passing really hit me and has stayed with me from day one. I join among the thousands who will never meet her in person, but will be forever changed by her message of love and hope. As long as there is one, the other can always be found. The title of the book, This Star Won't Go Out, celebrates her namesake (Esther means star in Persian) and her family and friends' mission that Esther is not forgotten, nor will they cease to raise awareness for the disease that took her prematurely. From the moment I closed the book, I became a living representation of this mission, and will carry Esther's memory wherever I go. 

Trying to assemble words to adequately describe the life-changing experience of reading this book, I cannot recommend it enough for teens facing any medical challenges as well as their loved ones. Yes the subject matter is difficult, but the book is not a sad book. On the contrary- it's the opposite. This Star Won't Go Out is a celebration of life and inspires one to face their fears and make each day count. 

To order the book, click here to visit its page on Amazon.

For more information about Esther's story and the foundation created in her memory, click here.

Saturday, March 8, 2014

Suddenly Sleepy Saturday 2014

Which one is the real sleeping beauty?
The past week has been extraordinarily jam-packed with a myriad of awareness and advocacy events that I have been excited to promote: Rare Disease Day (Feb. 28th), National Sleep Week (Mar. 2-9), and Spread the Word to End the Word (Mar. 5). All of these causes and campaigns have special importance and significance to my life, but today's Suddenly Sleepy Saturday has a extra resonance because it raises awareness for narcolepsy- the catalyst that turned my life upside-down and changed my life forever. 

Narcolepsy is a chronic sleep disorder whose hallmark symptoms are excessive daytime sleepiness (meaning the inability to maintain wakefulness despite maintaining normal sleep pattern) and sudden sleep attacks that occur without warning and send a narcoleptic person into REM sleep in a matter of minutes to seconds. Other defining symptoms are cataplexy (a sudden loss of muscle tone), sleep paralysis, and hypnagogic/hypnopompic hallucinations (occurring shortly before or after sleep). Contrary to some misconceptions of the condition, it is not caused by seizures, depression, lack of sleep or fainting, but instead by the brain and body's inability to regulate sleep cycles. One challenging aspect of the condition is that it's onset is normally in young adulthood (ages 10-25), and is often written off as "lazy teenager syndrome" which can delay diagnoses on average 3-15 years from the commencement of symptoms. For more information on narcolepsy, check out Mayo Clinic's resources and narcolepsy advocate Julie Flygare's website. 

I consider myself lucky in a way because my "personalized version" of narcolepsy was definitely acute-onset. Over the course of a week, I went from a wide awake, active teenager, to one that fell asleep throughout the day and could barely function due to exhaustion. After having what we now know was my first cataplexy one evening when I couldn't move or communicate for an extended period, I was rushed to the hospital and admitted for a few days to no avail. Cataplexy and exhaustion persisted and after another round of multi-day hospitalization, no answers emerged except for one suggestion tossed out that I should get a sleep study for lack of other options. Off to a local sleep specialist, my initial evaluation resulted in a sleep study appointment a couple days later. 

For those who've never had a sleep study, it is one of the strangest, most surreal experiences I've ever had. Basically, one is hooked up to seemingly a thousand wires which monitor everything from breathing and snore volume to brainwaves and heartbeat, and is instructed to sleep throughout the night. Depending on the tests a doctor orders, a sleep study can go well into the following day during a series of monitored naps every couple hours. I received this "deluxe" package of sleep tests, and after the conclusion of my final nap in the mid-afternoon. Normally, one would schedule a secondary appointment to receive results and an interpretation of them, but in a surreal twist of events, my sleep specialist made a point of catching me on the way out to tell me that I most definitely had narcolepsy and that my results were "very impressive." In most realms, "impressive" could be a compliment, but that day, "impressive" was a very scary prospect. 

For most with narcolepsy, the next step following diagnosis is often a merry-go-round of medications to try to treat the symptoms. For me, the endless parade of trial-and-error drugs was a dizzying dance of side effects and sleepiness. Before long, it was very clear that the assorted cocktail was not working. Finally, I found a medication that worked wonders for me and slowly but surely I began to find my "sea legs" and confidence to navigate the peaks and valleys of life with narcolepsy.

Narcolepsy can be an isolating and debilitating condition, but it is not a moratorium on living. With careful maintenance, medications, and a daily routine, narcolepsy can be wrangled and controlled so that one can take back control of their life. It is possible to be happy, healthy, and successful after diagnosis. Although there's no cure right now, I dream of a day when narcolepsy can join the ever-lengthening list of diseases eradicated through modern medicine. For now, I will continue to stand up and speak out about this condition with the hopes of fostering greater understanding and compassion.