Tag Archives: The Diving Bell and the Butterfly

Take It Easy

Following the shunt insertion surgery, I had to find myself in the world again.  As I touched upon in a previous post, I was released from my cognitive and physical therapy programs immediately, but I was not prepared for a return to law school just yet.

I needed to work on myself.  Beginning on July 1st and continuing through September 7th, my days were spent in emergency rooms, operating rooms, the ICU, rehabilitation centers and in my house.  At all times of the day, I was trapped in my mind and head.  In a previous entry, I mentioned  that my therapists said my story was reminiscent of Jean-Dominique Bauby and The Diving Bell and the Butterfly.

For those of you unfamiliar with the story of Jean-Dominique Bauby, it is a fascinating and moving story and I recommend reading the book (or even watching the movie) if you are interested in learning more. Imagine waking up in a hospital after suffering a massive stroke only to find that you can think and reason but you cannot communicate with the outside world.  You are now paralyzed.  Yet, you can still hear sounds, smell, taste and feel emotion.  Essentially, you are a prisoner inside your own body.  Bauby was left only with the ability to move his left eye.  Blinking was now the way he communicated with the world.  Nevertheless, even though his body was immovable, his mind and spirit to think were free.

I too, was locked inside my own body until September 9th.  As miraculous as my recovery was, there was still much work to be done.

Now, I know what you are thinking – I obviously recovered because I’m writing about my story . But it wasn’t that simple.  As I mentioned above, I had gone over two months without doing anything of any importance and if I wanted to pick up where I had left off and move forward with my life, I would need to put in some serious work.  My surgeon and medical staff, while in amazement over what taken place, could not predict what my recovery process would be like, nor could they predict how I would function in everyday life.  If they could not make any assessments, you can rest assured that I too had no idea what was in store.

Could I comprehend what I read?  Write a brief?  Advocate for a position?  Sometimes my ambition and drive gets the best of me, so of course I felt the need to start testing myself immediately.

“Immediately” is the key word here.

Not less than a week after getting back from my Rhode Island adventure where I felt I was destined to soon return, I went straight back to working for a law firm.  Too FastOn September 21st, I walked into the office and headed up the stairs.  The last time that I was walking up these stairs was on June 26th – the day that I knew I was not okay.

At that point of the summer, my parents were driving me to and from work because of the double vision and in fear that something was not right.  However, their fears did not stop me from wanting to work and so they agreed to drive me with an understanding that I would call them if something were wrong.  No later than the time I had gotten up the stairs, I got on the phone and called.   As I walked up the stairs, I felt extremely dizzy, light headed and queasy.  I stopped on the landing halfway up the staircase and leaned up against the window.  After mustering up the energy, I slowly climbed the rest of the stairs, sat down and called home – and you know the story from here.

Let’s try this again, shall we?  On September 21st, I returned to the office and headed up the stairs.  This time, I made it up with no trouble whatsoever and was feeling great.  My employers were thrilled to see me back and doing well.  I was eager and willing to do whatever task needed to be done, even if it meant standing at the copier machine all day pressing “start” or typing out a word document for an attorney.  Over the course of the next three months, my progress improved greatly and I was being assigned more meaningful tasks. With each task that I had completed, I was beaming in confidence and eager to see how I would perform in the classroom.

Life was still moving nonstop for me and I was on the go 24/7 doing some task to help me resume my life as it had left off prior to my diagnosis and surgeries.  I’m thrilled I was able to get right back into my life.  I wanted it all back immediately and to erase from my memory what had happened to me.

At that point in my life, I did not want to remember any of this but rather, to carry on and move forward with my life.  I never stopped to reflect on the severity of the situation; the pain and emotion that I had felt during the previous months; the impact this all had on my family or just what a total roller-coaster ride my life had turned into since May.

Ashley often told me, and still to this day has to remind me, I never took a minute to grieve over what happened to me and express my emotions.  Six years removed from my diagnosis and years of battling to get to where I am today, I can look back and realize that at that time, the best way for me to deal with what life had thrown at me was to continue life as nothing ever happened.   But hindsight is 20/20.   My situation has matured me beyond my years, and I have now learned that there is nothing wrong with that.  Nothing in life should be taken for granted.  Life is precious and can go by in an instant.   I learned.  I grew up.  But that didn’t mean that I needed to push myself too hard too fast.

For you readers who are undergoing a similar experience, let loose and express yourself.  Don’t let it consume you, but it is okay to acknowledge that something bad has happened to you.  Do not try to be a hero and pretend that everything is okay if it’s really not.  As I said in a previous post, family and friends got me through my battle and you can rest assured that they have your back as well.  Trust me.

Keeping The Faith

Much to my pleasure, my residency at Yale-New Haven Hospital was only temporary.  The morning after watching the Home Run Derby, my parents were there to greet me as they had done for the past fifteen days and announced to me that I would be going home today.  While waiting for the doctors and nurses to finalize the paperwork for my release and setting up follow-up appointments with my doctor, my parents began to engage in conversation with me.  While I love to engage in conversation, it was embarrassing for me personally to have people talking to me, understanding every word that was being spoken but unable to verbalize a coherent response.   In a quest to help me regain my memory, my dad asked me if I remembered what I did the night before.  Well, the short version of the story was that I had no idea that I watched the Home Run Derby with him, nevermind the historic performance that lit up Yankee Stadium.  I vividly recall the distinct look of sadness that overcame his face as he realized that this would be my life from now on.

With the paperwork in hand, I was wheeled out of my room and down the long corridor.  I felt like a celebrity as all of my caregivers that strived so hard day in and day out to provide me a comfortable home said their goodbyes and well wishes to me.  And at long last, there it was.  My dad’s car….my ticket out of there.

Prior to that car ride, I had never realized the beauty of it all.  The sky, the clouds, the trees and the grass.  It was a dream come true.  I knew where I was during the entire car ride home and as I approached my house, I knew that with one more right turn, I would heading down my street.  Pulling into the driveway brought a tear to my eye, albeit a happy one.  As I said before, I honestly never thought that I would see my home again or my dog Chip.  But there it was and there he was, waiting for me to come into the house.   Chip

This was just the start to another chapter of a very long road ahead.   Despite it all, I remained determined to regain my strength, cognitive skills and independence.

For me, I was Jean-Dominique Bauby, the main character in the “The Diving Bell and the Butterfly.”  While I could not appreciate the analogy at the time, the speech and physical therapists that I worked with that summer compared me to Bauby when they told me I was locked-in.  Five years later, I can say they were right.  I was locked inside my body, unable to express myself or communicate.   Yet, I was determined.

For the first few days of being home, I was as equally happy as I was frustrated.  Two months previously, I was writing an appellate brief for my legal methods class and today, I was being shown flash cards with fishes and horses trying to name what I saw and I could not do it.

If nothing else, for the person who was just diagnosed, my words of advice are to stay determined and optimistic as you too will overcome and triumph.  While I had days of misery and frustration, I can honestly say that I never lost the hope that I would be able to live my life the way I had envisioned.  All you have to do is keep the faith.