All posts by chrisgreymatters

Somewhere Over The Rainbow

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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

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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?

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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

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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.

Mama If That’s Movin Up Then I’m Movin’ Out

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Have any of you ever had a day where you feel like you have no purpose in anything you do, go to bed and repeat?  Well that was my life every day in the ensuing months post-operation.  Despite the many moments that made me just want to cave in and succumb to this new lifestyle, I refused to give in.

“Purpose.  Must find purpose.”  I was determined to not live my life by simply waking up, spilling food all over myself, wandering from room to room forgetting I had just been in there or asking myself “why” I walked into that room, working on my naming skills, trying to read and write simple words learned in kindergarten, watching some TV without any idea as to what the show was even about, sitting at my piano attempting to play just one bar of music, going to bed and repeating. It was a nice thought but reality set in.

After being released, I was still battling a deadly infection and this meant that I would need medication and additional care.  When I saw a car approach the house and two nurses come walking to the door, I thought to myself  “Are you shitting me?”  Luckily they only came to put in the port for the IV and teach my parents how to administer the medication intravenously for the next two weeks.  I couldn’t be happier when they left.  “See ya!  Bye, thanks for coming!”  Wait though – I’m supposed to let my mom handle giving me medication through an IV three times a day for two weeks??

As if I hadn’t known already, that summer reinforced upon me what an awesome mother I have.  She was meticulous in giving me the IV and doing it at the same time every day…yet, I think she was around the nurses a bit too much as she started asking the typical questions such as: “From one to ten, what level of pain are you in?  Do you have a headache?  Do you remember what you had for breakfast?  Can you tell me where we are?  What is your name?”

While it was great to be in the comfort of my own home and surrounded by my family and friends, life was difficult and I was going nowhere fast.  I had moved out of the hospital but not out of the woods.  Something as simple as taking a shower became a hassle.  In order to protect the IV port from getting wet, my poor mother had to cover the port with a medical sleeve, but then for extra measure, she would wrap my arm inside a plastic bag, tape the bag tightly and then cover it all with saran wrap.  Yes, I’m serious.  I felt like Randy from “A Christmas Story”…”Can’t put my arm downnnnn!”  Oh, the triumphs and battles I endured.

At the end of the day though, I didn’t care.  I was alive and I felt that my brain was getting stronger every day even though it was not showing to those on the outside.  While I could never express it, I felt alert and oriented to my surroundings and cognizant of the activity that was taking place around me.  My purpose became clear – I was to smile and enjoy the little things in life, simply because I could, and that I did. 

 

Keeping The Faith

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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.

The Great Escape

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Today is July 14, 2008.  Day number 14 of being in this bed. The bright sunlight shone through the window, waking me up at my usual early hour on a warm, summer day.  In my semi-conscious state, I thought about what errands I had to run and what plans I had made with friends and family for the day…

 

BEEP.  BEEP.  BEEP.  BEEP.  BEEP.

 

The nagging loud noise that would drive any person mad quickly snapped me back to reality.   Not two minutes later, a nurse came in and began with the daily entourage of questions.

 

“Good Morning, how are you today?  Can you tell my your name?”  I looked at her blankly.  Of course I know my name.

 

“Ch…. Ch….. Ch….”  Why couldn’t I just say it?  Just spit the damn name out, I told myself, this is ridiculous.  The nurse patiently waited for the correct response, but I just couldn’t do it.   My tongue and vocal chords just would not cooperate with me.   Oh forget it, I give up, and with that, she handed me the menu to order breakfast. 

 

I want “pan….pan….pan…”.  The nurse paused and remained patient, so I tried again.  “Pan….pan….pan…”  Luckily for me, either my mother or father were by my side and knew that I was trying to say “pancakes” and placed the order for me.  But this was absurd.  Why the hell couldn’t I just say what I was trying to?  To further complicate matters, I was fluid restricted so I couldn’t indulge myself too much with a beverage.  As if the brain thing wasn’t enough of a problem.  I was trapped inside my own body – unable to communicate with the outside world and confined to the bed. 

 

For everyone who works from 9-5, do not fret.  There is absolutely nothing on TV worth watching during those hours…unless you

watch SportsCenter repeatedly, over and over, or are a woman who has an interest in daytime soap operas or Maury’s latest paternity results reveal.  For me, SportsCenter always won.  At all other times, I was in a holding pattern.  On occasion, I would walk around the hospital room with the assistance of nurses, even if it were only a few steps.  Today, the nurse came and asked if I wanted some fresh air.  Of course I did.  My parents were awarded the privilege of wheeling me outside.  I call it a privilege, but was it really?  Being wheeled out of a hospital like an invalid at the age of 24?  If only I could have gotten out of the chair and ran for the car and headed home or expressed my desire to them that I want to go home – that would’ve been the pinnacle moment for me.  I can dream.  But if nothing else, it was an experience to sit there and watch the hurried businessmen scurry off to work, undoubtedly worried about being late or the phone calls they needed to make.  I was one of them a few weeks ago – it’s amazing to me how insignificant those daily work worries are to me now that I am here.  How did  I get so caught up in it all? 

 

The fresh air was nice, but reality sank right back in once I returned to my room.   A speech pathologist entered, smiling and telling me that we were going to work on my naming ability.  Maybe today would be better.  I should be improving soon – no, I need to improve soon.  Attempting to pry words out of me, she showed me flash card after flash card.  I could rehearse a Shakespearean soliloquy in my head, but verbalizing the image of the dog or the umbrella was still virtually impossible.

 

I.  Am. A. Complete. Failure. 

 

I remain patient on the outside, but inside I am screaming and terrified that this is it – this is my new life.

 

Despite my fears, the home run derby at Yankee Stadium is on and Josh Hamilton just smashed 28 homers.  As I watch, I feel a sense of normalcy has been momentarily restored to my life.  At the same time, I realize it’s been two weeks here and I feel like I’m spiraling down into the abyss.  The only other thing I can think of is that I could bounce around from floor to floor, or hospital to care center, but I may never see my house again.   Yale New-Haven Hospital is my new home and I must learn to embrace it. 

I Am The Luckiest

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When I went out to Rhode Island to begin law school five years ago, I was alone and determined to begin my quest to achieve my dream and make new friends.  But little did I know that I would spend most of my off-time with my best friend and the girl I would wind up marrying.

Ashley, my amazingly supportive wife, wrote this next entry.   But for law school, there is no chance we ever would have met each other as we lived two-and-a-half hours apart.  But as destiny would have it, we lived on the same street during our 1L year and were in the same section for classes that year.   I can go on and on, but I’ll tell just this one story – maybe some foreshadowing of what was to come?!

As finals were approaching in May of 2008, my roommate, Ashley and I went to a bar for one last good time out and we  played darts.  Ashley and Joe both nailed the board and of course, my dart is way off to the right.  The two of them are cackling and I’m trying to figure out how to explain this.  Well…when I used to have too many “sodas”  at the bar, the double vision would return and thus the reason my dart almost took someone’s eye out.  So I explained it to the two of them and looked at me like I was crazy.

Real crazy, huh?!  But I digress…

I haven’t heard him shuffling around the house in a while.  He hasn’t had a seizure downstairs has he?  I picture him passed out on the floor, or worse yet, he could have hit his head on the way down.  I find an excuse to go downstairs to check on him.  Was that a facial twitch?  Did he just slur that sentence?  Why doesn’t he remember that I told him that story yesterday?  It can’t be growing back, can it?  Is it genetic?  Should and will we be able to monitor our kids for it?  Is that a red line on his chest, could his shunt be malfunctioning?  Does he have his shunt information in his wallet?  What if he has a seizure while he is driving, what’s my plan of action to take control of the car?  Should he be driving by himself?

I am a survivor’s wife, and these are the thoughts that flash through my head on a daily basis.

I have never told him about the extent of my concern (though I suppose now he knows – hey, hi!).  Granted, I am a worrier by nature, but I have to imagine that most spouses deal with similar fears and thoughts.  When the fears come rushing in like a bullet train, I force myself to slow down and think back…

Chris and I met during our first year of law school in the fall of 2007.  I doubt that the well-dressed, Yankee-loving Italian guy thought he would end up at the altar with an Irish-freckled, Boston tomboy donning a Red Sox hat…but life is funny like that.  The lines between friendship and something more had just started blurring when Chris was diagnosed with his brain tumor that summer.

Another law school friend and myself went to visit Chris right after his first surgery.  We knew he was unable to fully communicate with us, so we weren’t expecting much other than just being able to see for ourselves that he was okay.  Throughout the previous year, Chris and I had a running joke about how someday I was going to make him a Build-A-Bear.  He basically told me that he would rip it up and flush it down the toilet if I ever did.   I figured this was the perfect time to make good on my promise, and I made him his very own bear.  When we walked into the room, he couldn’t say much of anything, but I watched his eyes catch the Build-a-Bear box, and a wild look of anger crossed his face.  I was never so happy to see someone so mad – it meant he was still in there somewhere.

Even though his stuffed animal anger brought me hope, things got worse before they got better.  On our way back to the hospital the next day, my friend and I received an anguished phone call from Chris’ sister.  “Something’s wrong with Chris and he’s having emergency surgery, you probably shouldn’t come.”  We turned around and had the most worried, silent drive home to Rhode Island.  He survived what we later found out was a life-threatening infection.  I spoke with his sister after the surgery and I can still hear what she said to me: “My brother and I had to rush to the hospital to say goodbye because we really thought we were losing our brother”.   Now, every time I watch Chris together with his siblings, breaking each other’s balls and laughing, or when I see him holding his nephew, I think back to his sister’s haunting statement, and it always brings a tear (albeit a happy one) to my eye.

The months after brought a few more visits.  Verbal communication was almost impossible, and the frustration as he tried to say something he was thinking was palpable.  I would tell him stories and although he couldn’t respond, I could tell he understood by his facial expressions.  He called me on my birthday that year and tried to say “Happy Birthday”.  Such a simple phrase, and he struggled for minutes.  I sobbed after I hung up because I was equal parts heartbroken for him and just honored that he would try so hard for me.  I resolved to wait for him, because I knew he would be back…and a few months and a miracle later, back he was.

So when the worry monsters attack, I try to take a big step back and remind myself that I am lucky that I am even in a position to worry about him and the future.  I am lucky he can respond to me.  That he can actually go to work and tie his own shoes.  A good friend’s sister was just diagnosed with an inoperable brain tumor.  I couldn’t stop crying for her.  For everything her family is going through and for the fact that we are so god damned lucky.  I’m not a religious person, but I have to believe there’s a greater purpose for all this – for why Chris pulled through miraculously.   So when I step back and reflect, I realize that maybe my worries are really just blessings in disguise.

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What A Wonderful World

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For the next week-and-a-half, I was confined to my hospital bed, unable to communicate with the outside world, or anyone for that matter.  However, when my parents brought me my cell phone so that I could check my text messages from all of my friends and family who had been texting me, I still knew what to do with it.  Though I could not respond alone, with the assistance of my parents, I was able to send simple replies back to the numerous messages.  The outpouring of support was and still is overwhelming to me.

The date was now July 4th.  What used to be the pinnacle of summer – cookouts and parties with family and friends – was not supposed to be spent in the hospital.  Luckily however, Yale-New Haven Hospital does a great job in providing the utmost care and comfort for their patients.  The nurses did their best to make me at home and bring humor back into my life in this time of despair.  As the night crept in and the sun went down, I could begin to hear the fireworks going off in the near distance but there was no chance for a front row view this year…or was there?

Within minutes, I had the most comfortable seat in the house.  My nurse came in and she turned my bed toward the window, opened the curtains and raised my bed up so that I was sitting upright.  With my mom and dad sitting beside me, I had my front row view after all!  There were no mosquitoes attacking us that year or large crowds to fight for a good seat.  To top it all off, I scarfed down an entire dish of brownies that were brought to me.  I am still told to this day by those who were there with me that the crumbs were everywhere…my sincere apologies to the nurses and cleaning staff at the Yale NICU.

Thinking back to that night and the ensuing visits from my family and friends during those next two weeks, I feel overwhelmed to know there are so many people who care about me.  But there is one person who is deserving of an award for all her love and support then and now – my mom.

She came to the hospital every single day and always made sure I was comfortable and offering to get me anything I needed.  Thinking back on that summer, her lovingness and ability to inspire me comes as no surprise.  I watched my mother go through her own courageous battle with breast cancer and this gave me the courage to get through my battle.  She overcame surgery, radiation and chemotherapy and never missed a beat.  At the time, my sister and I were in high school and my brother was in elementary school.  Yet, she managed to keep everything under control while raising three wonderful kids, being a great wife, working, keeping the house in order and living life to the fullest.  Her courage and will to get through such a difficult time inspired me and always will.

Despite all of my difficulties, all it took was my mother’s love to show me what a wonderful world it still was…

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Blinded By The Light

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Freezing and bright.  That is what I remember the operating room being like right before being put out for my surgery to remove my tumor.  Sort of reminiscent of an alien abduction – or what I imagine it would be like.  I’m not sure which I would prefer – the abduction or the surgery, but I do remember trying not to look around too much in fear that I would see the tools and instrumentation that would be used to rip into my skull and remove the tumor.  I was greeted by smiling faces from the doctors and neurosurgeons, giving me reassurances that all was going to be okay.  Within minutes of being there, the anesthesiologist was ready to get started and I was instructed to begin counting backwards…

“10, 9, 8” is all I can remember.  I was confident going into the operation, but I would be lying if I said I was not scared that I would not wake up, so when I opened my eyes and saw my family by the bed, it was exhilarating. Everyone can relate to that moment where they wake up from a deep sleep and you have someone talking to you, but waking up from anesthesia after nine hours of brain surgery was overwhelming.  Despite my joy that I actually woke up, it did not take me long to understand what a hurdle this was going to be.

Within a matter of a month, I had gone from taking law school final exams to trying to string together a coherent sentence in response to the hospital’s favorite question: “are you in any pain?” I felt like responding, “No, no pain at all.  I just had my head cracked open and rummaged in.  I have tubes and a catheter protruding from my head, but no, no pain.”  Normally, I would whip out this sarcastic response in a heartbeat, but even attempting to actually verbalize this response was impossible.  I remained confident and did my best to mutter something, anything.   My naming (ability to identify people and objects) was intact and my strength was average.  However, my speech was minimal and it was clear that I was suffering from hydrocephalus, also known as “water on the brain”, a condition in which the cerebrospinal fluid builds up within the ventricles.

It’s crazy – to me, everything that I said to my family and the doctors at that time made perfect sense to me, but I was later told that what I was saying was not making any sense whatsoever.  I can relate a lot to someone who suffers from locked-in-syndrome.  But I’ll save that for another day.

On the morning of July 6, 2008, four days after the tumor was removed, my father came to the hospital early in the morning to check in on me, just as he had done the previous three days.  One day earlier, the drain that was put in to drain the CSF fluid and the catheter were removed and I was progressing better than expected. The doctors were so pleased with my progress and everything was on schedule for me to go home within a day or two.  And to top things off, my uncle came to visit and brought breakfast – yes, Italian pastries.  I watched as my father and uncle devoured them.  I could only watch.

As I sat in bed reading words that I recognized in the sports section of the newspaper, things suddenly began to deteriorate.  I started having trouble conversing and began having severe headaches, nausea and vomiting, and my heart was racing as if it was going to beat out of my chest.  The room was spinning and I was sweating bullets.  I suddenly could not move the right side of my body.  Thoughts were racing through my mind at such an alarming pace that I cannot even begin to spell them out, but I knew something was drastically wrong.  I heard my father shouting for the nurses and the sound of the brain activity machine was beeping manically.  Within a span of a few minutes, I had lost all of my motors skills and was manifesting the symptoms of a stroke.

At this point, my mom had arrived at the hospital along with my sister and brother.  I saw everyone crying and yelling as I lay in the bed with my body seizing and unable to communicate or express myself in any meaningful way to let them know I would be okay.  I had only wished I had a way to tell them not to worry, even if I did not believe that myself.

As I was wheeled out of my hospital room, my brother and sister said their goodbyes to me because they were afraid they would never see me again.  Both my mom and dad were running down the hall next to my bed as I was wheeled into the OR.  Just as we parted ways, my mom gave me a kiss and told me she loved me and my father took my hand, squeezed it and asked me to squeeze his hand if I understood.  Pathetically, I squeezed his hand and it was at that moment that we all knew I was going to make it out of this procedure and live to tell this story.