Tag Archives: hope

Tears in Heaven

Last night, while I took my dog to the backyard, I noticed how clearly I could see the stars.  A night sky like that lends to a lot of thinking.

I had a new blog written for you all this week, but to be honest, I just couldn’t post it at this time.  There are too many thoughts and emotions swirling through my mind currently and I’ve instead decided to briefly share them.

Most of you have heard the news of Brittany Maynard, the 29 year-old woman who ended her life with dignity and courage in the face of terminal brain cancer.  Or the story of Lauren Hill, the 19 year-old NCAA basketball player who, despite having months to live, scored in her very first game.  And lastly, here in Connecticut a young girl by the name of Nina Poeta who lost her battle to brain cancer.

These are all extraordinarily tragic stories that have, quite frankly, broken my heart.  I thought about my time being “locked” in my body and I remember thinking that if I would never recover from it, that I would not want to live. I understand Brittany’s choice.   I remember my dad letting me drive myself to rehab when the doctors cautioned me against it.  It brought me such joy and hope to accomplish that, so I can almost feel Lauren’s excitement when that ball made its swish noise.   And my family’s pain when they thought I might not survive – my heart hurts for Nina ‘s loved ones.

The bright side is that they have brought brain tumors to the forefront – a place they usually don’t see.  I pray that this is only the beginning in spreading awareness of the devastation brain tumors can cause and the research that is so terribly needed.  There are so many suffering whose stories we don’t hear about.  Maybe it’s time that we do and reach out.  Here in Connecticut, we have the CTBTA working tirelessly to better the lives of those living with this disease. Without the support of the hard-working people who organized and run the CTBTA to raise funds for prevention and treatment, finding the cure someday would be impossible.  Hopefully, other support groups follow the lead and someday, every person suffering with a brain tumor has someone to turn to.

When my dog finally pulled on the leash, I snapped out of my thoughts but not before looking up and thanking those lucky stars of mine.

Everybody Hurts

If you have been following my blog, you probably get the sense that I am an overall positive person who has overcome some pretty great adversity.   But life hasn’t always been so grand and happy for me.  During my first semester back to law school in 2009, I struggled emotionally and lived in fear of the unknown.

As I was back in Rhode Island, gone was the comfort of being surrounded by my family 24/7.  Gone was the comfort of knowing that Yale was five minutes from my house.  From January 2009 through May 2009, I was scared.  On top of the possible side effects and the new way I was living, I was constantly worried about all of the what-ifs.  Above all else – I had to find a way to be okay with “my new normal.”

Upon arriving back in Rhode Island, my friends offered their support and assistance with anything that I needed.  But what nobody could offer me during these times was the guidance and calming effect that was provided by my doctors, therapists and family.  I took a full course load, which in retrospect I probably should not have done, but I needed to prove to myself that all would be fine and live my usual life and resume my schedule.  What I neglected to realize was that I couldn’t just jump back in – things needed to be readjusted and put into perspective all over again.

Classes proved difficult.  I had trouble managing my time as the readings took a lot longer than they had previously; reading through the legal jargon just to understand the judge’s reasoning behind his/her decision took hours.  I struggled with taking notes about what I had read.  This became a major problem, as my final exam grade was contingent on what I could absorb and comprehend from these readings.  I struggled and wanted to just quit at times.  Nonetheless, I put a smile on my face and carried on.

What nobody knew is what a dark and difficult time this was for me. Even though I was so happy to be back in school working toward earning my degree, I was struggling and was spending more hours in my professors’ office hours each day to go over the materials instead of living the everyday 24 year-old life I was used to.  Was the neuropsychological testing correct – were my cognitive impairments permanent?  Was I going to fail out of law school?  As the semester came to a close, I panicked because finals were approaching and in law school, final grades are based upon one grade – your score on the final exam.

In addition to this stress, my personality was changing.  I was suddenly guarded about who I was as a person and as a law student and became insecure about my knowledge and skills.  When in class, I listened to my peers recite the case with ease and making it look like a walk in the park.  I grew irritable and frustrated with my abilities (or should I say, inabilities).  There were many moments of loneliness and a feeling of helplessness.  Then, there were moments of emptiness.

After a night out at a bar with my friends, we all returned to Ashley’s so the night would continue but I noticed that my friends were happy, loving life and seemingly without a worry in the world.  As I sat there watching, I began to reflect on what had happened to me and what I had been through six months prior.  The magnitude of emotions got to me and I went to an upstairs room, sat on the bed reflected and let my emotions pour out.  Fortunately, Ashley, being my rock and support system, immediately noticed and rushed upstairs behind me.  She did not say anything, nor did she need to.  She tried to be strong for me and to keep me encouraged but little did she know, I saw a tear rolling down her cheek.

My story has had so many ups and downs that are full of laughter, sorrow, inspiration and hope.  But I have never, until just recently, expressed the emotional toll it took.  I don’t know why, but recently I’ve felt the urge to share, in particular because I have been hearing of more and more people undergoing a hardship.  Dealing with a brain tumor, or any illness or disease for that matter is scary and your life gets turned upside down and nobody should have to face it alone.

So while I have shared a lot about the positives of my story, there have also been a lot of emotional times as well and for those of you who are undergoing something similar, you know what I mean.

The Waiting Is The Hardest Part

I had trouble falling asleep last night because I was thinking.  Yes, thinking about tomorrow’s test and results and thus I have decided to write about it.

For some, tomorrow is just another ordinary day.  Maybe you’re going to work or to school.  Maybe you’re going for a job interview.

Oh right.  Maybe you’re waiting for the Connecticut bar exam results to be released…

If you are, I understand the anxiety that you are feeling – I’m anxious for tomorrow too.  As I previously mentioned, three times since 2009, twice on the first Friday in October and once on the first Friday in May, I have experienced great angst.  To the hopeful bar applicants, tomorrow, I will similarly face angst with you.  As I discussed in past entries, I tried and tried and tried to pass the bar exam, all to no avail.  Bar exam results day has been the lowest point of my three times already.

If you took the exam, you’re likely wracking your brain to remember what you wrote on the essays or whether you correctly answered any of the MBE questions.  It’s an anxious feeling.  With this test, there are so many things depending upon the results and you have to wait three months for the results.  You will undoubtedly refresh the website multiple times eagerly awaiting to see that the results have been posted.  When you look, your heart will fall into your stomach and you can only hope that you see your name on the list.

Well, applicants, you’re not alone.

You see, tomorrow I will go in for a test and receive my results.  Right there and then.  However, for once, I’m boasting.  Unlike the myriad of emotions that bar applicants are likely currently experiencing, I am extremely confident that I will get good news at tomorrow’s six-month MRI.

Nevertheless, despite the news that tomorrow brings us all, we need to stay strong and remain confident in our abilities and who we are as people.  If you’re awaiting tomorrows results, keep in mind that you have come this far – you are on the precipice of accomplishing a great achievement and are hours away from working long and tireless hours.  As for me, I am hours away from taking another step toward putting my years of battling the monster in my head behind me.  So no matter what, rest assured that when that list of names is publicized tomorrow for the whole world to see, know that you will not see this:

Screen shot 2014-09-30 at 8.09.14 PM
An image of my brain taken June 27, 2008. The tumor filled the ventricular system and displaced the septum pellucidum, extended back toward the body of the lateral ventricle and was hemorrhagic.

Eager; nervous; excited; anxious.  Those four words best describe how I feel.  I’m sure you do too.  I am confident that tomorrow, we will quickly forget that we feel this way.  Until then, we can only wait though.  I look forward to seeing social media blow up with your exciting news.  I’ll be on social media tomorrow with my results, even if they are not what I hope for.

There is only one difference between you and me tomorrow.  If you pass, you will forever be done with tests.  Me?  I’ll be ecstatic, but it is still the early stages of lifelong test anxiety.

It’s A Beautiful Day

Fall is my absolute favorite season.  Humidity gives way to crisp air, trees transform to an array of stunning colors and then there’s the food… enough said.  Aside from all that, fall serves as a subtle, beautiful reminder of the transient nature of life – all that lives eventually dies.

Lately, Chris and I have heard many stories of people suffering from brain tumors that haven’t fared as well as him.  Hearing these heartbreaking stories leads to such a heavy feeling of survivor’s guilt.  Why did Chris survive and other worthy, amazing people have not?  Was it divine intervention or just pure luck?  I’m not sure what I believe, but I often wonder if we are living our lives as we should considering the enormous gift we’ve been given.  Perhaps we should be experiencing every ounce of life we can – going on African safaris, skydiving, volunteering as much time as we can to those less fortunate.  Can the way we live our everyday, middle class America, 9 to 5 life ever be enough to say thank you for the gift of life?

The fact of the matter is I’ll never know why Chris survived and the alternative will likely forever haunt me.

In terms of survivor’s guilt though, I think I do have an answer.  While driving to work this morning, I opened the sunroof and commented to myself on how it was my favorite type of autumn day …and then it hit me.  We don’t need to win a Nobel Peace Prize or travel to some far away land to really live.  To do justice to those who haven’t survived, we just need to live it well – no matter what we’re doing.  So do me a favor today.  Take all of your everyday experiences and try to make it worth something.  Smile more.  Laugh until your belly hurts.  Really taste that morning coffee.  Do something nice for someone just because.   Life doesn’t have to be “big” to be wonderful and fulfilling.

Take joy in all the simple things for those who can’t.

Submitted by Ashley Cusano

Celebrate We Will Because Life Is Short But Sweet for Certain

So you didn’t get that job that you applied for?  Or maybe you got a C as opposed to B in that class?  Did you stay at the office late today, and yet still have piles of work to get through?  Your car’s broken down…again.  Sure these are all legitimate problems and life sure is full of them.   What matters is how we deal with them and how we come out on the other side.

Coming home in May, not even a year removed from receiving my diagnosis, I had a new outlook on life.  My first semester back at law school was eye opening.  Don’t get me wrong, I wanted to do well and maintain my class ranking, but I also refused to push myself too hard and kill myself over schoolwork.  During my hospital stay, my medical team constantly reminded me that I would never be measured by my classroom or courtroom experience.  No matter what happened after my hospital stay, I would always be defined by my determination and perseverance in overcoming obstacle after obstacle.

During the ensuing months following my surgeries, I was a spectator to life.  I viewed everyday occurrences with an open mind.  No longer did I stress about getting an A.  Did I want to?  Of course (I am Type A, after all); but I knew that if I attended class throughout the semester, analyzed the readings, studied and completed practice exams, I had done all that I could do and whatever grade I earned at the end was okay with me.

From day one of the first year, the focus is finding a job and earning exorbitant amounts of money.  Now, let me clear this up for you right now – that’s a fallacy.  Unless you finish in the top 25% of the class, you bounce around from job to job or maybe even through temp agencies and in real life, never make those millions you imagined were possible.  After my performance first year, I didn’t even concern myself with making it into the top quarter of the class, but even if I did, I’d be crazy to push myself that hard.  Life is far too short and fragile to let one insignificant thing in the grand scheme of things consume you.  I watched countless friends obsessively agonize over outlining and analyzing cases and statutes to earn the grade they were striving for.

The same holds true in practice.  I am simply amazed by how many of my peers stress over getting the hours in or getting their motion heard on the court calendar.  I just watch in amazement and think to myself “what if?”  When I witness such events, it takes every ounce of energy out of me to not say something, but I understand it – we all work hard and want good results for efforts.  If you work for a law firm, you have billing requirements that you must meet by years end, and after all, we need to keep our jobs to put food on the table.  But at what cost? It makes me wonder why as a society, we have created all of these human manufactured stressors.

I don’t mean to diminish your worries.  They are real and legitimate.  At the same time, I urge you to never stop focusing on the big picture and seeing what is truly important.  It seems to me that we too often take for granted what we have and lose sight of what really matters because we are too busy focused on nonsense.  Ever since I’ve recovered, I’ve felt like my life is moving in fast motion.  I have since learned to make sure I then take a deep breath and calmly approach the situation when I find myself getting stressed or frustrated.  My persona has changed immensely and I know this is a blessing in disguise.  Gone are the days where I rushed around, driving myself nuts to get everything accomplished by some arbitrary deadline.  I got my second chance, and I refuse to waste it by missing out on life’s joys.

For me, when real trouble arose, the question was not “do you want to have brain surgery?”  There was no option or decision to make – it was  “Chris, you need to have brain surgery.”  Not once, not twice…but four times, in addition to one gamma knife surgery.  I had brain surgery...This was my life and the cards that I was dealt and I coped with it all.  Like other situations, it’s not ideal, but unlike any of the scenarios in the first paragraph, this is a REAL problem and there’s no time to think about it or mull over your decision.  Instead, you have to rise to the occasion and learn to grow from it.  My obstacles have aged me years beyond my date of birth and I no longer stress over situations like those I mentioned here.  I’m the first to admit it – prior to my surgery, I focused on school and finding a job.  However, after my diagnosis, I realized that the important things in life are those that we have in front of us – family, friends and health.  With those three things in hand, the goals are infinite and life is good.  Yet, I still find reasons to throw on this t-shirt…

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.