Somewhere Over The Rainbow

As part of my ongoing quest for positivity, I never stopped believing my life would resume where it had left off prior to my diagnosis.  Even though it was now late August and my peers were in week two of classes, I was determined to get back there with them.  But not only was I determined, I whole-heartedly believed that I would be back at some point to resume my law school career.  For those who know me, this belief, or what some may call “stubbornness”, should come as no surprise as I have always been persistent and one to argue a point even when I know I am wrong.

At my request, a meeting was set up with my parents, the Assistant Dean of the law school and I.  The purpose of the meeting was to inform the dean of my progress and basically let her know how I was doing.  All along, I fully and firmly believed that law school was still a possibility for me and that after I can make some progress, I would be back.  Not so fast.  I walked into a conference room and was unable to say a word when she was talking to me.  “Maybe it is just nerves and I need to relax?” I thought to myself.  Nope.  The entire meeting was full of confused and muttered responses…as well as no responses at all.  On top of my cognitive deficits, the nerves and anxiety of my surroundings left me completely unable to make a positive impact and prove that I had what it took to make a recovery and return to school in pursuit of my dream.

Suffice it to say that it did not take long for the dean to ask to speak to my parents in private for a moment.  I did not have the mental capacity to even process what they could have been speaking about, but I knew that it had the potential to be bad… and it was.  When they came back into the room, the dean broke the news to me that I never expected to hear: based on my deficits and lack of progress, my pursuit of earning my juris doctorate degree was officially over and that I should return home to live a comfortable life.

I wanted to jump up on the table and rattle off the elements of negligence and go into a long-winded spiel reciting my oral argument I gave three months earlier.  I couldn’t though and I watched as my parents’ faces had turned from pessimistically optimistic to completely hopeless and sad.  All that I had worked so hard for over the years was gone – the tumor had robbed me of everything.  The two-hour ride from Rhode Island back to Connecticut was full of tears and sorrow by all of us.

It was déjà vu all over again…

After graduating cum laude from The University of Connecticut in 2006, I sat for the LSAT and applied to five schools.  After rejections to four schools and being waitlisted by UConn for the entire summer before learning on the day classes were to begin that I had been rejected, I felt completely helpless.  One of the schools I applied to was Roger Williams University.  Prior to receiving an acceptance or rejection from the school, I was being inundated with mail from the school regarding financial aid, the pro bono work done there and letters from the Office of Career Development.  Given my low LSAT score, acceptance was a long shot but all of the mail left with an ounce of hope.  The Assistant Dean of Admissions invited me to come up and see the campus, go in for a tour and meet with the career development office and you better believe that I accepted it.  With my mother, the two of us made the drive up to Rhode Island.  On a good day, the drive is about two hours but on that particular day, due to the pouring rain and wind, the drive turned into three.  Figures.   Pachaug Trail - "Welcome to Rhode Island sign" at Beach Pond, Hope Valley, RI

During my meeting with admissions, the dean wanted to discuss my low LSAT score along with my high grades at UConn.  “How do I describe the disparity” he wanted to know.   I couldn’t.  Well, the answer was buried in my brain but nobody knew at that point nor were there any reasons to inquire.  On the drive home, my mother and I both recapped the meeting and tried to find any positives to take home with us, but there were none….except that the rain had stopped and over the highway, a full rainbow had developed.  My mother took this as a sign that though things had not been working out for me, that rainbow was certainly an omen of good things to come.

Unfortunately, a short while later that summer, I received a small envelope from the school and inside was a letter from the Assistant Dean of Admissions notifying me that I had not been accepted for that year but encouraging me not to give up hope.  Well fortunately for me, I did not give up hope and remained determined to master the LSATs.  I spent the year working for a law firm in a variety of roles and then went full-steam ahead with an LSAT preparation course.  My hard work had paid off and I improved my score immensely.  I reapplied to all five of the schools, but the moment I received my acceptance from Roger Williams University, I notified them of my acceptance and could not have been happier.

Back to the present day, here I was, back in the car heading home after a horrible meeting at Roger Williams.  But life is funny like that.  I believe that everything happens for a reason, both good and bad, and while that reason may not be apparent at the current moment, it will become evident at some point in time.  For me, the reason I did not get accepted after meeting with the school on that rainy day and the long drive with my mom was that my acceptance a year later allowed me to enroll with Ashley and find my counterpart…the one who lived this battle with me moment I left her that voicemail notifying her of my diagnosis.

So what’s my point, It’s that you cannot give up.  Keep going, keep searching and keep fighting.  Through it all, you will find your rainbow.

Take Me Out To The Ballgame

With a grueling, tiresome summer full of nonstop hurdles and battles, it was time for some fun.  As an avid Yankees fan and it being the final season in the Stadium, I had to get to one last game before the Yanks moved to the new Stadium.  On August 17th, my law school friends Ashley, Joe and Matt made the drive down to Connecticut to pick me up to see the Kansas City Royals take on the Yankees.  Though it was difficult for me to have to face the world in the state that I was in, words could not describe how elated I felt when I saw them actually get out of the car and approaching my front door.  They all knew I was still unable to communicate as a 24-year-old should be able to, but they didn’t let that seem to bother them. 

The whole day was reminiscent of how things used to be – joking, laughing and just having fun in each other’s company.  I honestly cannot remember a whole lot about the game or the afternoon, but I savored every moment of it.  The grass had never looked so green, the organ never sounded so great and the buzz in the air was akin to being at a playoff game.  Yet, not everything was as cheery as it may sound. 

As I sat there watching the game, I could not help but to think about what to talk to my friends about, if anything at all.  We suddenly had nothing in common anymore, but I mustered up the courage and attempted to make small talk.  From what I can remember and by their facial expressions, I was doing okay.  Yet, there is one “conversation” that I, nor Ashley, will ever forget. 

The guys had gotten up to go to the concession stands and there we were – just Ashley and I.   The last time the two of us had been alone together prior to that moment was also in New York City.  To set the scene, the month after school had ended and about three weeks before being diagnosed, I took Ashley to New York City to see Jersey Boys on Broadway and then out for a great dinner.  The entire day was full of laugher and fun and I knew at that moment that things were going to work out between us.  I think we both saw a side of each other that made us realize we complimented one another.  Being in classes together during our first year, we always focused on our studies and we were both afraid to take things any further in fear of losing our close circle of friends.  In the words of Frankie Valli: “Oh what a night, why’d it take so long to see the light?  Seemed so wrong, but now it seems so right.” 

Here I was, finding myself alone with her again – a moment I feared I would never have again upon receiving the diagnosis.  Me being the avid fan that I was, and it being her first time at the Stadium, I figured it would be nice to tell her some things about the Yankees and the Stadium.  With the thought in mind, I pointed down at Monument Park and she followed my pointing finger.  “What?” she said.  In my mind, I was saying “that there is Monument Park!  Do you see the all of the numbers?  Well, those are all of the retired numbers!  And those monuments, those are for Babe Ruth, Lou Gehrig and Mickey Mantle!”  She looked at me and said, “I’m sorry, what are you showing me?  Are you pointing to the Snoopy billboard?  Ohhh, the American Flag?!”  Apparently, I was not making any sense when I spoke so I shook my head no, and with that, stopped talking.  I felt terrible because I knew that she was upset that she could not understand me and I was disappointed in myself for being unable to communicate with the girl I was falling for. 

That was just how things were going for me lately.  While I was still enjoying myself being at the game and was so grateful that I had great friends that drove down to take me there and spend their afternoon with me, I was so disappointed in my progress, or lack thereof.  I dwelled on that moment the rest of the game, the drive home and that evening. 

My closest friends from law school were going back to Rhode Island to resume classes and I was staying behind.  Goodbyes have never been too difficult for me, but that one was particularly rough as the realization of what a long road ahead I still had ahead of me.  How would I ever get back to my old self and is that even a realistic question for me to be asking anymore?  Is this who I will be forever?  My life was halted and I also felt like I was hindering my family and friends who wanted nothing more than to see me flourish and wake up as my old self. 

On the positive side of things, at least the Yankees won, 15-6.

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Hey Pretty Lady Won’t You Give Me A Sign?

The summer was moving right along and the days were creeping closer to my 2L year.  The date was now August 15, 2008 – exactly one month after being sent home. Yet, at the recommendation of my neurosurgeon, I was sent back to Yale for neuropsychological testing.

While I have never told anyone this before, the entire process of neuropsych testing was my lowest point.  Law school exams had suddenly felt easy – the stakes now were far too high and I was terrified the entire day.  And while I was unable to appreciate at that time the significance of what the testing meant, I somehow knew it was a major point in my recovery if I wanted to resume the life I knew and get back to school in a few weeks – because I was going back.  Maybe I was naïve or I was just stubborn, but I somehow believed this was not just a fleeting thought.

So, what is neuropsych testing?  As defined by the Yale Medical Group, neuropsychology is a “clinical service that provides in-depth evaluations of various brain functions including attention, impulse control, problem solving, memory, language, visual perception, sensory-motor skills, intelligence and emotions.” The entire process is designed to test mental ability and I was being tested to see “where” I was on a cognitive scale.

After the initial introductions and the ice broken, my parents got up and left me…alone….and helpless. I felt like a dog being left behind in a kennel – “please, no – don’t leave me here!”  Well, I reasoned that the sooner he can examine me and I can get this over with, I can go home and daydream some more.

The questions came fast…and furious.   It’s insane though – as he was asking me the questions, I heard every word asked and understood what he was saying, but could not establish the connection between the question and my response.  That was the entire problem and what the doctors were afraid I had permanently lost.  I gave my best effort to answer, but my speech was slow.  The report noted that it was “effortful” and further that my responses contained paraphasic errors.  Throughout the morning, the doctor and his assistant would read an entire page of text to me and then proceed to ask me questions about it, such as “what was the theme?” or “can you repeat the sentence I just read to you?”

I gathered myself for a moment, tried real hard to respond but could not get the words I was searching for out of my mouth.  Once again, I felt like a complete failure.  I loved the timed questions though.  I recall one series where I was told a word and I was asked to provide a word that is similar.  Yes, this is something you likely practiced in third grade, but today, my goal was to practice synonyms.

During my lunch break that day, I was so distraught and upset with myself, and the person I had become.  I called home and just cried to my family.  The sound of concern in my parents’ voice was palpable and I instantly knew that their worst nightmare had come true – I was not doing well and the doctors’ fears were being confirmed.  Nonetheless, being unable to be there and provide a smile and a pat on the back, they consoled me and encouraged me to go back in there and do my best, just as I had always done.  And with that, I returned to the testing area for the remainder of the afternoon.  But today – and possibly forever more – my best was not good enough.

I later learned that after my phone call, my parents had a life-changing experience whereby they knew everything was going to be alright for me.

Do you believe in fate, destiny, do you believe that things happen for a reason, do you pray when things get difficult, do you believe in God?  I do.

After we dropped Chris off, we could do nothing other then think about the testing and the latest chapter of his ordeal.  The word aphasia was always whispered, and now the fear was that the diagnosis was going to be official.  After Chris called that afternoon and cried through his lunch break, Karen and I became extremely emotional and sad and cried for him.  At that moment, our son Stephen came home from his high school football workout and said he was starving.  I composed myself and decided to light the gas grill and cook him some lunch.  While cooking, I began to pray.  I prayed for a miracle…I prayed that Chris would be okay…I prayed that God would give me this cross to bear and take it off of Chris’ shoulders…I prayed for a sign that he was going to be okay.

Moments later, I heard a slight flutter in my right ear.  Glancing to the right, I saw that a ladybug had landed on my shoulder and was just sitting there.  If you believe like I do, she was my sign.  That ladybug sat on my shoulder from 12:45 until I got into the car to pick up Chris at 3:30.  As I got into the car I “released” her and as she flew off, I had an overwhelming feeling of confidence and peace.  In my soul at that moment I knew he was going to be okay.

Back to the testing room, as the sun began to set, the responses to the questions were not coming any easier to me and I was still struggling, if not performing worse.  I had just let myself down when I had the opportunity to shine and prove everyone wrong.  But I guess everyone else was right.

The report notes that “the nature of his language deficits (e.g. non-fluent spontaneous speech, word finding difficulties, poor confrontational naming, impaired oral and written expression) in the context of relatively preserved oral and written comprehension and intact sentence repetition abilities is consistent with the syndrome of a non-fluent, transcortical motor aphasia.”  And there it was – everyone’s worst fears right on paper.  Widely suspected but not confirmed until today, I had aphasia (a condition affecting brain injury and stroke patients’ ability to use or understand words).

How would I get through this and where do I go from here?  The ride home felt like an eternity and I had never felt so defeated before in my life.  How did this all happen to me?

A few days later, a copy of the report was provided and my parents broke the news to me…Untitled

…I was not going back to law school.

ABC, Easy As One, Two, Three

So I had my purpose and with that, I tried to find myself again.  I knew that my old self was locked in my body somewhere and it was my hope that the physical and mental rehabilitation would help.  But my steps were baby steps.  I was physically and mentally unable to do anything on my own.  The initial meeting with my therapists did not go well at all and I wanted to permanently escape from the therapy center.  I had nowhere to go though – I was stuck in this world and my regimen was three times per week from 9:00-3:00.  I was to alternate between cognitive therapy to relearn to speak, read, write and think and physical therapy to regain the strength I lost on the right side of my body.  My face was distorted and the entire right side of my body was practically useless.

Walking into the group room and meeting the group I had been placed into was absolutely terrifying and jaw-dropping.   I was the youngest patient by, I’d guess, 20 years.  I was with other brain tumor and stroke patients.  As the new kid in the group, I was asked to introduce myself.  As you can probably guess, I was unable to do it.  Well, maybe I’d be able to tell the group a little bit about myself, such as how I just finished my first year of law school and my career goals.  Couldn’t do that either.  And that’s when it hit me.  Within a matter of a month, I had lost all that I worked so hard for over 24 years of my life.  Gone from my life was socializing with my family and friends, aspirations of earning my JD and practicing law and rekindling my relationship with Ashley.  Defeated and in search of hope, I optimistically looked at the therapist and thought to myself “you can help me, right?”

Following the group session, I was ushered into a room where I would have some one-on-one time with the cognitive therapist.  To assist me, I was given this alphabet boardABC's

I looked at her, she looked back at me.  She had to be kidding, right  – I had to be able to at least know my ABC’s. While I recognized the letter “A” as such, I was unable to communicate that to anyone.  In other words, I could not say what I was thinking at the time.  At that time, the pathologist did not realize the extent of my deficits and moved on to the lowercase letters that you see on the board.  Again, I sat there, unable to say what I was thinking even though I knew that it was the letter “A”.   Sorry Michael, it looks like those ABC’s were not as easy as one, two, three.

Every day, when my parents would pick me up from therapy, they would ask me questions about my day such as: “what did you work on?” or “what did you have for lunch – did you have ham?  did you have turkey?  did you have soup?” They waited for a response, but I did not answer because I could not remember.   More troubling though was that this was all just within minutes of being picked up.  I later learned that my brain was so compromised due to the hydrocephalus and infection that it was feared I could remain in that state forever.   I was left with persistent neurological liabilities, specifically as they relate to the processing of information and the management of language and memory.

The weeks that followed offered little hope to my family, my doctors, therapists or myself.  There was absolutely no progress being made.  With my difficulty in performing simple tasks learned years ago, I began to manifest symptoms of anxiety in social situations.  It was terrifying for me to have someone approach me who did not know what I had gone through or attempt to engage me in conversation not realizing the full situation.  In the grocery store one day with my father, I was just standing there watching the people hurry down the aisles filling their shopping carts and recalling a time that I used to do that.  Not intending to stare awkwardly, I could not help but to reminisce.  As I watched someone go to the beer section and place the six-pack in his cart, I hear a guy say to me “hey kid, is there something wrong with you?”  My father intervened and we walked away but I couldn’t help but to dwell on that moment.  I was going nowhere any time soon.

Yet, without the tireless effort and dedication of therapists, brain tumor patients like myself would never be able to resume their life and share their stories.  Even in the darkest of moments when all hope seemed to be lost, my therapists always smiled and offered me hope.   Day in and day out, they strived to assist me in getting my life back and restoring normalcy in a world only other patients and survivors can understand.  I remain forever grateful to those therapists who worked with me and the effort they each put in to help me get to where I am today.