All posts by chrisgreymatters

Brainstorm – Part One

By now, I hope you have noticed one common theme in all of my entries – if you haven’t yet, you’ll have to wait until part two of this post for the revelation…

At the age of 8, I began playing the piano and taking lessons. I grew up with the piano that my mother took piano lessons on and which I learned to play. Those of you who know me, you can attest to the fact that when I put my mind to something, I am determined to do it and do it well; it was the same way with my piano lessons.

After returning home from Rhode Island in May of 2008, I began writing an original composition. When I played the song, my parents asked me what it was and I replied that it was a song I was writing but that needed an ending. My family proposed some names and ideas, but none of them were what I was looking for – I needed to brainstorm.

As Stephen touched upon in his toast at my wedding, one day in late August, the doorbell rang and it was our good family friend, Caryl. Sadly I say that I do not recall much else about Caryl’s visit other than me playing the piano for her. But looking back at it, I am beyond grateful she asked. Up to that point, I had not played too much as I grew far too frustrated with myself and my inability to play. But she did not care – she knew I had it in me and just believed in me. With Caryl and Stephen watching and waiting for me to do something, I sat down at the piano and took a deep breath and began to play. I managed to play as much of the song as I had written. I’m sure it was chock full of wrong notes and whatnot, but I had done it. A major accomplishment? No. But an accomplishment for me? Absolutely.

The date was sometime in late August 2008 and things were still going downhill for me. I was making absolutely no progress in my recovery. My ventricles were still clogged from debris where the tumor sat and the hydrocephalus was acting as a crux in my quest to recover.  After all, that’s what hydrocephalus is – a condition in which cerebrospinal fluid (CSF) builds up in the ventricles. Thus, the time had come to decide whether we would pursue the implantation of a shunt.

If you’re wondering what a VP shunt is, fret no more. The easiest way that I can describe it is as a device that allows excess CSF built-up inside the skull to drain into the abdomen.  One incision is made in the back of the skull to insert the reservoir and valve deep within the brain and then one incision is made in the abdomen to place the drain where the CSF would release. Tubing was implanted under my skin to connect the valve to the drain. So, to connect the dots…when the pressure of CSF builds inside the brain, the valve opens, the excess fluid flows down the drain through my head, into my neck and eventually drains down into my abdomen. Brain juice!UntitledDecision Time

Up to this point, my biggest decisions were what I would eat and which couch I would lay on for the day.  When it came time to ultimately decide whether to pursue the shunt operation, I made my voice heard. I was yearning to break free. I knew this was my only hope and the best option.  However, my parents had some remaining questions….

On the Saturday before Labor Day, I had a call with Dr. Piepmeier.  Karen and I were debating back and forth the pros and cons of the potential shunt surgery, which had been whispered about since the initial surgery.  The concern was that when Chris was initially admitted to Yale almost 8 weeks ago, he was already suffering from hydrocephalus.  This was the most puzzling part of the situation to the medical staff…how was he even functioning?  After 6 weeks of rehabilitation, almost no progress was made and the latest MRI showed that the ventricles were blocked and swollen, and the hydrocephalus was still present.  Dr. Piepmeier and I then discussed the options, which were: (1) stay on course to see if the healing process would correct the situation or (2) to have the shunt inserted.

We then talked about odds and percentages.  After insertion of the shunt, approximately 80% of the patients will see improvement in their cognitive function within 6 months to up to 2 years…15-20% regain total cognitive function within 6 months…and a very small percentage, 1-2%, has an immediate cure overnight.

We also discussed the potential risks.  We were advised that there was potential for the development of a blood clot in the brain, swelling in the brain, infections and seizures. In addition, we were also told that there is a risk that the shunt could malfunction at some point and also that the shunt system would need to be replaced once, twice or even three times throughout Chris’ life.  But just what if, in a miracle circumstance, Chris was the 1-2% case and the procedure worked without any unintended consequences and aided his recovery process?

I then asked him what I still believe was the right question: “if Chris was his son, would he do the surgery?”  His answer was an immediate yes.  My vote was now to do the surgery.

With all that I had been through up to this point, I felt that I had nothing to lose. I considered this to be the easiest decision I had been asked to make up to this point. I understood all of the risks and was realistic that even if the procedure went without any issues, it would still be a long road ahead. I knew that it was likely that no results would be seen for quite some time, but I knew my body better than anyone. The flash cards, ABC chart, workbooks full of addition and subtraction problems, the paper we all used in 2nd grade to practice writing in between the lines, etc. were simply not working. But more importantly, I was getting tired of being trapped inside my own body.

It’s Go Time!

On September 8, 2008, I underwent surgery for the implantation of the VP shunt. The surgery was scheduled to take place early in the day which meant prep for the surgery began very early and which also meant I had to begin fasting the night before. As luck would have it, the procedure continually got bumped as other cases had taken priority over mine…I was getting restless…anxious…and extremely hungry. Finally, around 4:30 in the afternoon, I was wheeled into the OR…

 

Hey Brother

In keeping with the tradition of having a family member write an entry, I turn this over to my brother Stephen.  However, as you can see, I did not ask him to write an entry.  Rather, I have decided to post his toast/speech as the Best Man at my wedding.   Give him another few years and then look for him on the Grammy’s.

“The water is sweet but the blood is thicker.”  At first glance, my brother Stephen may seem like he cares about a few key things: food, sleep and music.  But quickly you learn (and as you will soon see) that he may be the deepest of all our family members, and I love that about him.

A special thanks to Lenny for capturing this moment!  And I can’t thank you enough Stephen and Mary for this tribute.

You Raise Me Up

One of the joys for me in sharing my story with you is allowing those who have been there with me, through the ups and downs, to share their own story – from their point of view.  As I alluded to a few posts back, my inspiration through my own personal battle was my mom. 

A breast cancer survivor herself, she never missed a beat and always had the most positive outlook on life.  While always keeping a positive attitude and outlook on life, she never stopped being an amazing mother to her three children and wife to her husband.  When I was diagnosed, I could not help but to relate to her and use her positivity as my own inspiration.  I can never say it enough – thanks Mom, I love you. 

As Chris’ mom, I cannot write my version of the story from one moment.  All of the moms out there know that we pretty much all live in the moment or the day that we are in.  So my story and memories are spread out over almost 6 years, and there is not a day that goes by that I do not remember what Chris had to endure through those years.   Actually, I should re-phrase that – it is not only what he has been through, but also what he must go through for the rest of his life (Moms never stop worrying). When we are blessed to have children they are truly in our hearts and our thoughts forever.  From the time they are born to when they are fully grown, we coddle them, protect them, guide and support them, reinforcing the positives, avoiding the negative – as my husband always said “trying to never put them in a position for failure”.  But then, life throws you a curve ball you didn’t see coming, a health problem, a large one, and you realize that you can do nothing to help your child other then pray.

I am so thankful that Chris’ DNA make-up is how it is…he has been through so much adversity and yet with every new issue and problem, he handles it with such a calmness, patience, and confidence that the end result will be fine. 

I could write many different entries in detail about Chris, beginning with the initial symptoms, to being diagnosed, being hospitalized, surgery, rehabilitation, home care, more surgery…here are a few memories that I would like to share.  

Chris began to have headaches around Memorial Day 2008.  As June rolled forward, he began to experience double vision.  After numerous eye exams with doctors who were not concerned, he continued to work throughout the month.  One week prior to his diagnosis, Chris and I drove to Newport to meet with realtors to look for apartments for him to rent while attending law school.  We saw 4 apartments, walked around the town, talked, laughed, and contemplated what we saw…all the while, I knew he had double vision and was not feeling that good.  When I continued to ask him how he felt, he said, “I’m fine, let’s keep looking.”  

Just one week later, the staff at the emergency room at Yale could not understand how he was even functioning.  Their thoughts were that he had an unbelievable tolerance for pain and that his body and brain had compensated for the tumor…the crooked smile, the slight lean to the right when he walked, the double vision…in retrospect, this was the way his body compensated and allowed him to push on and never miss a beat until that scary day of the diagnosis.   The morning of the initial surgery as he hopped up on the stretcher that was going to take him to surgery he showed no fear, just confidence.  “I have to do what I have to do”.  He smiled and said “I’ll see you later “…strength, courage, and determination.  He makes me proud that I am his Mom.

After two weeks spent in the hospital following the two surgeries, Chris was released from the hospital with strict medical procedures that had to be followed at home.  If I did not agree to them, he would have been in the hospital for at least 2 more weeks.  Chris had developed a very serious, potentially deadly, infection and he needed powerful antibiotics that had to be administered 3 times per day intravenously.  The visiting nurse came to the house the first day to show me how to administer the medication.  My routine began at 7:00 AM, then again at 3:00 and finally at 11:00, for 30 minutes each dose.  The medication regimen was supposed to be for 2 weeks, but again the curse of the summer of 2008 kicked in and his blood counts were not good.  Two weeks became four. Per usual, Chris never complained.  He went along with it all. 

A Tuesday in August – it was going to be a good day.  Our visiting nurse from the Veterans’ Nurse Association came to the house in the morning as she always did once a week to check his IV port and change the bandages.  Once complete, she initialed and dated the new bandages.  That evening we had plans to go to our town green for the weekly concert.  It would be perfect for Chris – we could bring dinner, sit back in our lawn chairs and enjoy the music.  We were going to attempt to do something not medically-related for the first time in 6 weeks.  How we were all looking forward to this!  But before we could do that we had to take Chris to his scheduled MRI.  This was the first MRI done since being released from the hospital.  There were forms to be filled out and as he was in no condition to answer this questionnaire, I filled it out for him.  I signed my name as his guardian to whom questions should be asked.  My husband took a conference call in the lobby as I waited patiently for him to come out to the waiting area after his MRI.   I will never forget the way he was smiling as he entered the room (not sure how after another long head-banging MRI).  I rose from my seat and started walking towards him when I noticed his arm and asked “where’s your IV!?”  He calmly replied “She asked me if I needed it anymore, and I told her NO, so she took it out.”  I’m a pretty calm person, but at that moment I lost it.  How could the nurse ask him that question when she knew his state of mind, not to mention that we were there waiting for him?  I immediately marched back in with Chris only to be told that they were sorry for their mistake.  We were instructed to go across the street to the hospital emergency room where the doctor would meet him and replace the IV Port.  I actually thought that although it would be close, we could possibly make the concert, but in the summer of 2008, not much went the way we expected.  Once again, Chris had to be admitted to the hospital and stay the night, where the next day a surgical team in yet another sterile operating room re-inserted the IV Port back in his arm.

Another night in the hospital, the follow up MRIs, the constant questions, rehabilitation, steroids (that made him want to eat non -stop) and then the round the clock intravenous medications, all of this became our life.  I was no longer just his Mom, I was his caregiver, his nurse, his watchful guardian, and in the state that he was in it was as if he was again my little boy of 6 years old.

One of the joys that summer for Chris was to take a shower, as this was just a simple task that he was actually able to do on his own.  “It’s time Mom, wrap my arm up!”  Indeed I did.  He loved it and I dreaded it, but this was truly one of the joys of his day!  I would wrap up his IV Port in gauze bandages, saran wrap, then plastic baggies.  I feared water would get in.  My wrapping routine paid off as I guess I did a good job – no problems!  But, who would ever think that I could be a nurse?  I’ve always said, “What we will do for our children!”

This was the most difficult period in my life.  Watching my intelligent, well-rounded, happy and most determined son who at this time should have been in law school pursuing his dream, and instead I would watch and listen to him as he sat on the front porch with my husband trying to read 1st grade level books.  I would give him spelling tests for simple words, Stephen would attempt to help him find the middle C note on his beloved piano, I would try to help him as he would struggle with the keyboard on the computer to simply find the letter ‘a’ as he was so determined to write to Ashley.  His speech and words came fumbled and slow.  When I would pick him up in the afternoon from rehabilitation, he could never remember what he had for lunch that day.  I would say some possible choices and his answer was always, ”Yeah, I think that’s what I had.”  Yet, through all that frustration and the private tears shed, there was something about him that I knew, somehow, someday he would be back to my Chris again. Maybe it was his determination, struggling every day trying to re-learn and get better.  But for me, my sign was one afternoon as I was preparing to give him his medicine – he looked right into my eyes and said, “Could you please hurry this up today!”   WOW.   That was my Chris.  So clear, so quick, so witty. 

He was definitely coming back.

Me and Mom“While we try to teach our children all about life, our children teach us what life is all about.”  Angela Schwindt

Sitting, Wishing, Waiting (Reprise)

After a long day at Yale-New Haven Hospital, the results are in and Ashley and I have decided to share today’s news in a joint post…

Waiting.

It always seems like we are waiting – in line at the grocery store, for a much-needed vacation, for work to be over.

What bothers me most about this premise is the precious time we squander while we impatiently yearn for the cashier to just hurry up.  All that time in between rushing from here to there or waiting for something you are looking forward to may feel mundane, but it’s our time.  Chris and I learned at a very early age that time, mundane or not, should not be wasted.  In any event, it seems to me that often times the built up anticipation while we await “the next big thing” is better than what we were waiting for in the first place.  So why do we wish our lives away?

My favorite religious concept is the Buddhist idea of mindfulness. Essentially, it teaches that as people, we should strive to enter a mental state of present consciousness – to be aware of what is going on around you at that moment and to be at peace with it.   Let go of the past and don’t worry about the future – and when you reach this state of mindfulness, you will be happy.  This notion makes perfect sense, but I am admittedly one of its worst violators.

Today was a huge day for Chris.  As he earlier alluded to, a small regrowth of his tumor led to a gamma knife radiation procedure, which the doctors hoped would prevent any further growth and eliminate the need for surgery.  Today was his 3-month MRI follow-up, which would determine whether or not the gamma knife surgery was a success.

I’ve become accustomed to waiting in the hospital now.  It’s a perfect example of mundane time that I wish away – worrying about the results and just wishing to get out of there as soon as possible.  Today, while Chris underwent his MRI, I sat around and was a complete nervous wreck.  Besides the fact that I was trying to prevent a full blown anxiety attack from the loud noises emanating from the MRI machine, I was consumed with worry about the test’s results.  I knew that regardless of the outcome, we were equipped to handle it as we have in the past – but the thought of this not working and continuing to battle regrowth was just a terrible thought I was having trouble shaking.

But after all of those negative thoughts, a positive one finally emerged.  What if it did work?  This truly could be the end – well, it will never be the end because we will monitor this the rest of our lives, but as far as the initial tumor and procedures, this could be it.  I smiled.  I decided for the rest of my time waiting for the MRI to be over and for the results appointment thereafter, I would consume myself with the positive thought that there was a possibility that his tumor is at bay, not that the procedure didn’t work. In that moment, I understood mindfulness and how it can amazingly affect your experiences.  I didn’t want to let the present go, because my present thoughts meant there was hope.  For the first time ever, I embraced waiting.

And now I hand the reins over to Chris, because I think it’s his place to share the news with you…

As I stepped onto the elevator and headed up to the eighth floor where I would learn the results, mixed emotions ran through my mind.  While I was always confident today would bring nothing but good news, I had my doubts.  Let’s face it, we all have doubts.

But today, I just knew.  After taking my temperature, blood pressure and weight (oh yea, and the nurse also asked to see my ID bracelet just be sure I was who I claimed I was for the umpteenth time today), I was brought into yet another waiting room where Dr. P would walk through the door on the adjacent wall any second.

Not a minute later than the nurse walked out, the door re-opened…

A thumbs-up and a big smile.  “We got it!” he said!  My surgeon was genuinely excited and began telling me how well everything looked on the scans.  He eagerly brought me over to the computer where I saw the MRI comparison from December to today.  To my great relief, I saw but a small remnant of what the regrowth had been late last year.  Looking at the two scans, side-by-side, I could not help but to simply smile.  Although I will have to be monitored for the rest of my life, it was the first time, in five long years, that I feel like this road through hell has met its demise.

As the news was broke, I reflected back on the road I traveled to get to this point and the travesty that was brought into my life – the ups and downs, the laughter and sorrow.   And while I am realistic and recognize that this will be “my” battle for the rest of my life, I could not have asked for anything more than having such a fantastic medical team who truly has my best interests at heart.  But what is more, I have the best and most supportive family and friends a 30-year old can ask for.

champagne

Sitting, Wishing, Waiting

For the benefit of my readers who are fighting this battle and after mulling over whether to do what I’m about to do, I have decided to fast-forward to the current date…but only for a moment.  As a very brief overview and a story that I will later write about in full, at my six-month MRI last October, a very small regrowth of the tumor was discovered.  My team of doctors huddled and determined that the best treatment option was gamma knife surgery, a targeted radiation treatment, which took place in December….

So why did I decide to tell you this now and bring my story up to date?  Because tomorrow is the big day – my three month follow-up to ensure that no regrowth has occurred.  I have been feeling great and am confident that the doctors tell me there is no new growth.  But if I have learned anything, it is that no matter the outcome, you can never lose hope no matter.  I’ll roll with the punches just as I have for the past five-and-a-half years.  It’s just like the poster in my office says – “We cannot direct the wind, but we can adjust the sails.”

Come Back

Anyone who has siblings can relate to this next entry written by my older sister, Jackie.  Growing up, we would always get under each other’s skin and annoy the hell out of each other (apparently, I am still guilty of that).  Over the years, however, things changed and we became extremely close.  That summer, Jackie was always there for me, doing whatever she could to assist and while I was unable to express it, I heard the concern in her voice and could see she that she cared.  To those on the outside, it seemed as though I was not in my mind.  Little did they know, I was cognizant of my surroundings.   I just couldn’t express myself – I was still there, the same annoying brother.  I could imagine Jackie saying “come back, come back”.  Funny thing is, I had never left.

It’s my turn to write an entry for Chris’ blog – I have been mulling over what I would write for weeks, preparing for this moment.  I have so many thoughts, memories and emotions…they come in waves and bits and pieces.

I’ll start here…Wayne, Chris, Stephen and I went to see a Pearl Jam concert at what used to be the Meadows.  Chris wasn’t feeling 100% but we went anyway.  I remember Stephen, who was just 16 at the time, point out Chris’ eye.  We all noticed it but no one said anything, all of us secretly hoping it would just go away.  Stephen innocently pointed out how one eye seemed to cross but Chris brushed it off and we left the concert.  Chris assured us he had an upcoming doctor’s appointment to have his eye checked.  Of course, like everyone else, Chris included, we chalked it up to the idea that he needed a stronger eyeglass prescription and he needed it immediately.

Fast forward a few weeks later to what would be Chris’ worst nightmare. I can remember it like it was yesterday – where I was, the task I was doing, the outfit I was wearing (obviously) and the phone call from my father.  I left work within seconds and raced to Yale and could barely process what was happening to my insanely brilliant brother who helped me pass quite a few general education classes at UConn (yes…it’s true).

The next few weeks, Yale became my second home.  I was there every day after work, on lunch breaks and every free moment I had.  I read books, I sat with my parents – we just sat and waited and waited.  We waited for Chris to get better to come back to us.  But things got much worse before they got better.

I can vividly remember everything about the day my parents called to say I needed to come now and see Chris because he wasn’t doing well.   The fear in my parents’ voices resonates with me to this day.  (Ashley also touched on this day in her blog post; it’s funny, until she wrote about it I had completely forgotten I spoke to her.  As I said before, things come in waves and bits and pieces).  After our visit, my head was spinning but I needed to stay strong for my younger brother, Stephen.  We left the hospital, picked up our dog Chip and drove to my home in Branford; after all, Chip was a part of our family and he needed to be with us.  We got out of the car and cried and cried and waited and waited.

We later learned that a subdural hematoma had formed in Chris’ brain, explaining the symptoms he showed of a stroke and thus the need for the immediate emergency surgery.  Though Chris had survived that latest round, he contracted an infection and was released home with a grim prognosis.  In the following weeks, I observed Chris and my gut told me he was still in there but that he was trapped in his body.  He was a fighter and I had to believe he would come out of this thriving.

There were a few instances that brought me to believe this theory – here is just one story I wish to share that assured me that in time, he would be okay….

You might have to know Chris to understand this story, but I will do my best to explain.  Chris, while he is most often serious in his daily life, also has quite a silly side.  He is sarcastic, humorous, slightly annoying (sorry but you are) and finds the most ridiculous and idiotic things hilarious; once he starts his laughing fit he cannot stop.  That summer the epic film (haha), Tropic Thunder, starring Ben Stiller, was released in theaters.  Wayne and I took Chris to see the movie as we thought something funny was just what the doctor ordered.  While Wayne and I were unsure Chris would be able to understand what was going on or follow the movie, Chris certainly proved us wrong.  In my opinion the film was “eh, not so great” but definitely one the old Chris would find hysterical.  I can’t recall what scene it was but Chris started laughing quietly at first and within minutes was rolling into his old uncontrollable laughter, the kind of laughing so hard that there are tears and sore abs the following day.  Wayne and I were right there with him – we went from laughing at the scene in the movie to just laughing at Chris laughing (this was common when Chris had a laughing fit).

With tears in my eyes, I remember texting my parents from that movie at that moment filling them in on our silly movie adventure – Chris is okay.  He is going to be okay.  I just knew it.  It was clear he was in there and he was just trapped…he would be back, I had no doubt.

PIC

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.