Monthly Archives: May 2014

Free Fallin’

7 Comments

Frozen.  Locked.  Helpless.

These three words epitomize the feeling I felt one night in March 2009.  My mind froze and my body suddenly and without reason locked up.  The signal of communication between my brain and body were lost.

In talking about my first semester back in my last post, I told you “about halfway through, I was mentally done.”  This was the moment that I was referring to: my life’s latest curveball and the topic of this next entry.

To set the scene, I was reading my family law cases and the time was just about 6:50 according to my roommate.  A couple of minutes later, I noticed that the words on the page began to blur and when I tried to yell for help, I couldn’t.  I could not move my arms, let alone highlight the passage that I had just read.  Within seconds, I was standing next to my desk, spinning in circles uncontrollably and then all consciousness was lost.  My body was jerking and I was having uncontrollable spasms.  My heart was beating faster than I ever heard it and I was sweating bullets.  I felt my eyes rolling to the back of my head and the drool pooling at the corner of my mouth. Eventually, the twitches ceased and I slept.

When I woke up, I was on the ground with the upper half of my body in the closet.

“How did I get here?” I wondered.  Alone and afraid of the unknown, I rose from the floor and walked into bathroom where I threw ice-cold water on my face.  When I looked up into the mirror, I noticed a massive egg in the middle of my forehead.

I tried to recall the events that took place but was unable to remember anything after my manic spinning. I assumed that I was trying to find a place to sit down but lost my balance, fell and landed in the closet.  There were no words; no feelings that I could use to express what was going on in my mind.  It could only be summed up in one word: terrified.

I walked down the hall to my roommate’s bedroom and was greeted with an abrupt “what happened to you?!”

“I don’t’ know”, I replied.

I called home and my mother answered.  I heard her talking and asking questions, but I could not answer any of them.  “I do not know what happened” I continued to tell her.  She asked questions to gain information such as “what was I doing” or “when did this happen?” Again, I had no idea but my mom said to me: “You need to find out how long you passed out for.  It is 7:05.  What is the last time that you looked at the clock?”

Wait, holdup. It was only 7:05?  That means that I had only been out for a few minutes?  Why did it feel like I was in the deepest sleep for days?

I feared the worst.  I thought, “did the shunt stop working or worse yet, did the tumor grow back in a more aggressive manner?”

At the same time that I called my parents, my roommate was on the phone with Ashley to let her know that something was wrong.  Within minutes, Ashley arrived and began asking questions.  Unfortunately, I could not answer any of them. Still, I had no clue.

Now, to think having to be seen at the hospital was a hassle, Ashley brought me over to Rhode Island Hospital for an evaluation. I was without any of my records or past MRI’s and there was really no way for me to explain what happened other than “I was reading, felt weird and passed out.”  The doctors were completely unfamiliar with my medical history and the treatments that I had been through and they had to take my word on what I was telling them.  Fortunately, in my wallet, I carry my neurosurgeon and clinical coordinator’s cards for situations like these.  I remembered that I had them in there so I took out the card, handed it to him and directed him to call the number.  The cognitive exams and strength tests were normal and he assumed it was a seizure and pumped me up with anti-seizure medicines and fluids to hydrate me.  I was kept for further observation and finally released around 3:00 a.m.

The next day, I was back down at Yale for an appointment with my neurosurgeon.  Following the regimen of questions and my responses, he prodded a little further and sent me for a precautionary scan.  Finally, and to my great relief, the cause was confirmed – I had suffered a grand-mal seizure.

Unfortunately however, there was no telling what caused the seizure, but it is not uncommon for someone who has undergone such traumatic brain injuries as I had just been through to suffer a seizure.  But again, I could only wonder and ask myself “why me?”

With my prescription for Dilantin in hand, I was back on my way to school and headed back to classes.  But like any traumatic experience in life, I had conditioned myself to fear having another seizure.  Any evening that I sat my desk reading a case or outlining for class, I was reminded of my incident and felt the fear of “what if?” It’s completely irrational but I was uneasy thinking that something else would derail my quest and cause me to land back in the hospital.

After another email to my professors letting them know of the latest episode, they took it easy on me and I did not get called on the remainder of the semester.  But yet, exams were quickly approaching and I had to control my emotions and pull through.

However, if a seizure was all that I had to deal with, life isn’t so bad I told myself.  I told myself “It’s just another chapter to a great book.”

Or perhaps I’ll need to devote a couple of chapters to this topic….

Back to School. Back to School…

1 Comment

…to show my dad I’m not a fool.  Ohhhhhh, back to school.

Tap tap tap tap tap tap.  Tick tick tick tick tick.  The sounds of an auditorium style room full of anxiety-filled, Type A law students taking a final exam, typing away at their laptops and checking their watches.  Before my surgery, there was nothing quite like that atmosphere to send me into my own personal hell… but obviously a lot changed after my 1st year.  No longer did a measly exam send me into panic – my brush with death had a way of knocking out those testing butterflies.  Sitting in this room now gave me a sense of pride. I was actually completing a law school final exam only months after being told I may never achieve a mental capacity greater than a second grader.  Submitting the exam when the time was up was akin to what I’m sure a marathon runner feels like after crossing the finish line.

This was one exam that I would forever remember.  A few weeks later, I eagerly checked my grades, and next to that particular class, I saw a “NS”.  What the hell did that mean, I wondered?  I asked Ashley but she had no idea either.

Let’s back up…

As you can probably surmise, I decided it was time to try heading back to law school.  There was only so much research I could conduct, hearings that I could sit in on and reports that I could write to prove to myself that I was ready.  My effort, dedication and work product continued to impress my employers – they too, knew I should head back.  I knew it was going to be tough and unlike anything I had ever experienced during any of my schooling.  But with my one semester leave-of-absence nearing its end, there was one critical obstacle in my way.  At yet another follow-up MRI and appointment with my neurosurgeon, I was informed that there was no further growth and that the shunt was working very well.  My progress had continued to amaze the Yale medical community and without more, I was granted clearance to return to school.

And just like that, I was back into the routine.  I received my registration date and time to pick my classes and off I went.  Being ambitious as always and not wanting to fall behind any more than I already had, I registered for 15 credits.  Call me crazy, insane or even stupid for doing that – but guess what? I did it. Well – sort of.

Those five classes required me more to work harder than ever before and resulted in greater angst in a five-month period than I had ever experienced.  The assigned reading was overkill at times.  As I was still in a rehabilitation state of sorts, I was unable to easily read material the first time and comprehend it.  And to further complicate matters, these were judicial opinions, many of which were chock full of legalese and acronyms galore – thank God for the law school spark notes!  I got called on multiple times and just stared blankly or made up some incomprehensible response.  It was awkward at times.  Again, I was around classmates who I held in high regard.  I wonder what they thought when I was called on?  Then again, after what I just beat, I didn’t really care what they thought.

Despite everything, my friends still stood by me.  Early on in the semester, Ashley and my friends threw me a surprise welcome back party.  photo(5)photo 2It was awesome to see all my friends in one place and to know that they cared. Like law school, this too was a test for me as I was forced to be in a social setting, and like school, I managed.  I was completely surprised and happy to know that everyone came out and showed their support.

The rest of the semester was such a blur.  About halfway through, I was mentally done.  But I dug deep and found the extra energy needed to get through the rest of the semester.  Finally, the last day of classes had arrived and then reading week to prepare for exams. For me, that was crisis mode.  How was I to retain all of this information under the rigorous time constraints?  Even despite what I had just been through, my exams were still administered in a rigorous three-hour window. It was an experiment for me, but it was the only way for me to assess myself.

There were certain classes that I did really well in, far exceeding my expectations.  And there were others, well, let’s get back to that “NS”.

Shortly after seeing my bewildering grade, the emails rolled in and the phone rang. It was the law school calling to tell me that my exam was so poor, incomprehensible and confused that I had earned an F. Earned.  That’s nice.  But seriously, was it that poor?

My professor and the school were willing to work with me.  But there were those who I could hear whispering “I told you so…” Nonetheless, as ashamed and embarrassed as I was, I arrived at the school to meet with the members in Administration and my professor to review the exam.  A quick explanation of law school exams – you are given an extremely long story, with multiple “characters” and events (Think Murphy’s Law style – everything possible can and does go wrong in these scenarios).  You then need to write a coherent essay explaining all the legal issues involved in the story.  Where I went wrong was as clear as day to my professor and perhaps and interesting anecdote for any neurologists out there – all of the legal principles I identified were correct, but I had simply mixed up which “character” did what.

The school and my professor recognized that my exam was not a true indicator of my work throughout the semester and I was given the opportunity to retake the exam over the summer.  Otherwise, all of my hard work, the time that I spent with the professor during office hours, outlining and re-outlining my notes, taking practice exams and reviewing them my professor…not to mention losing thousands of dollars on this course would be gone.  Fortunately for me however, my professor recognized all of this and fought hard.  I recall him telling the school and I that he had previous students with traumatic brain injuries who had manifested the exact same problems on exams.  My professor suggested that I be allowed to retake the exam that was being given during the summer course. After much back and forth, I was notified that I was permitted to retake the exam that was to be administered during the summer session.

The legal concepts and theories were still fresh in my head but I still put in many hours of preparation as before because I refused to squander this opportunity.  I was so determined and prepared to nail it.  After it was all said and done, I received word from the law school that I had earned a B.  What followed was a congratulatory message from my professor commending me on my hard work and persistence.

So like you Billy Madison, I proved to my dad and my family that I’m not a fool.  I knew it all along but there were plenty of doubters.  Again though, through adversity and persistence, we can all achieve whatever we set out minds out to do.  The human brain is an amazing, resilient organ.  To think that a tumor the size of a grapefruit was in there which in turn lead me to having to differentiate between a red fish and a green turtle to taking and passing law school exams is, well, mind boggling.  After getting through that first semester back, I was more than happy to bring on more tap tap tapping and clock-watching.

Take It Easy

2 Comments

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.

How to Save a Life

Leave a comment

In our lives, we all have someone that we can rely on to lift our spirits and make us smile.  In the summer of 2008, I realized how lucky I was to have more than someone – I had an entire army of support and caregivers.  So without more, I dedicate this post to my guardian angels.

Dr. Piepmeier, Director of Neuro-Oncology, Yale New Haven Hospital – I do not even know where to begin to thank you and tell you what you mean to me.  From the moment you stepped into the consultation room and we met for the first time, I knew you were going to get the job done.  Your professionalism and courtesy to my family and I during such a tumultuous summer is never forgotten.  I often think of what it would have been like had another surgeon handled my case; fortunately, I never need to think about that.  My family can attest to the fact that, upon receiving the diagnosis, I was scared of the unknown, but after meeting you and hearing the plan of action prior to the procedure, I was at peace and prepared for battle.   Then and now, you provide me with a reassuring sense of confidence that I could not give myself.

Betsey, Clinical Care Coordinator, Department of Neuro-Oncology – When I received my diagnosis and spoke with you for the first time, you had a calming effect on me. I instantly knew that, as bad as the diagnosis was, the team of doctors who were assigned to my case were going to get me through this and back on my feet and doing all that I planned to do in this life.  I feel so fortunate to be able to rely on you as my go-to person to have questions answered.  But more importantly, you provided me the hope that I needed to assure me that things would get better and to keep the faith.  Your smile and positive outlook has had a profound effect on me and for that, I am forever grateful.

Aunt Linda – Thank you. You have truly played such an important role in getting me back to the point where I am at now in my life. Your patience and grace in working with me never goes forgotten. As a 24 year old, trying to re-establish the connection between what I saw and was thinking and trying to verbalize those thoughts was demoralizing.  As you were showing me those flash cards, you never lost the patience and willingness to continue to work with me even as I struggled.  Your emails made me smile and your cards with words of wisdom resonate.  You are a wonderful person and I feel extremely fortunate to have you a part of my family.

Dr. Quagliarello (Dr. Q), MD – Not only are you a great family friend, a father of one of my great friends I met in elementary school and baseball coach of Famous Foods, but you have been a great source of support, care and guidance.  I often flash back to the day I was admitted to the hospital after receiving the diagnosis…knowing my mom called Joyce, who in turn contacted you and you rushed down to the room where I was waiting to see the doctors just so that you could be there with my parents and I.  You were able to provide comfort to me in a time that I needed it the most, but I know that for my parents, you provided them with a sense of hope that I was in good hands at Yale and with Dr. P.  Thank you for always checking in on me during daily visits to Yale and the house, as well as providing support to my family during a tough time.

Ellen, Speech Pathologist at Gaylord Hospital – When we first met, I was in complete disbelief that my life had taken such a drastic turn that I was in need of speech and cognitive therapy but I am happy to have been referred to you.  The alphabet board; the flash cards; the exercises to restore my strength – what was I to do with those, I wondered?  You laid out a plan for me, never grew tired of watching me struggle and never lost faith in my ability – you knew I was in there somewhere and kept prodding and encouraging me to keep trying and practicing.  Sure enough, I did it and I owe a great deal of my recovery to you.  Thank you.

To all the nurses who kept guarded watch of me in the NICU: though I do not remember you by name, I know each and everyone of you cared greatly about me during that summer and I owe a great deal of gratitude to you.

Last but not least – to my tremendously supportive family.  Where would I be without your love, support, faith and comedic relief.  I was but a shell of the person I am today and I owe it all to you – you never gave up on me and continually encouraged me to strive to get better and persevere.