Monthly Archives: January 2014

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

1 Comment

disoriented-bewildered-lost-confused-unclear-perplexed-540x358

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

2 Comments

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

Leave a comment

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

6 Comments

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.

graduation

ashley_chris_403

What A Wonderful World

Image 2 Comments

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…

ashley_chris_647