Tag Archives: adversity

April Showers Bring May Flowers

I know I’m a few days late, but it’s May and May is Brain Tumor Awareness Month!  For the patients, survivors, caregivers, friends and families, this is our month to be heard, raise awareness and bring a much needed voice to the brain tumor community.

There are some great campaigns taking place during the month and lots of awesome people who are dedicated to raising awareness.  Maybe you’ve heard of various sporting teams wearing “grey” uniforms to show their pride, or perhaps have been involved in or seen flyers for walks being held this month?  These are both wonderful opportunities for the much deserved and appreciated recognition.  I’ve also seen friends on social media posting pictures of themselves in a different grey outfit each day – very cool!  It’s these simple things that bring a smile to my face to know that this cause is so well cared for and there are many individuals and businesses out there trying to make a difference.  Even my dog got in on the party showing off his #beaniesforbraincancer! IMG_1629

All of this got me thinking – what can I do to show my pride and make a statement?  And then it came to me.

As I was sitting in the chair getting my haircut with my barber doing his final touches, I told him it looked good, but asked him if he would buzz the top too.  “Are you sure?” he asked.  I replied, “yes, I’m positive.  It’s brain tumor awareness month and this is my way of showing pride and support.”  As he began buzzing it, a voice piped up from another shaved-head person: “Sorry, but why did you decide to buzz it after getting rid of the old style?”  I explained to him, and the rest of people waiting for the barber that May is brain tumor awareness month and as a survivor, I wanted to do something to show my pride and support.  Looking in the mirror, I saw nods of approval and smiles, and then I was asked whether I would consider one of the barber’s already-shaved head as support of my effort.  I have no shame and I’m not embarrassed to show the world my scars – my battle wounds.  DSC_0402Fortunately, losing my hair is one thing I’ll likely never have to worry about – thanks Mom.

So what are you willing to do for the rest of this month to show your support?  You can wear the grey CTBTA bracelet or purchase Broca’s Area CD to help raise money for the CTBTA.  There are so many ways to get involved and help out, many of which would not require you to leave your couch.  Come on and join the party, you know you want to!

Like A Bridge Over Troubled Water

Time and time again, we hear “your health is all you have in life and without it, you’re nothing.”  If you’re like me, you immediately think of your physical health.

Yet, perhaps often overlooked is the other side – a person’s psychological health.  The emphasis is rarely placed on mental well being, unfortunately.  Psychological ailments are typically met with criticism and stigmatization.  For fear of being labeled “crazy”, mental illness is hidden and pushed aside.  According to the most recent National Institute of Mental Health survey, 18.6% of the United States population is currently suffering from a mental, behavioral or emotional disorder.  Let us not forget that this number is likely skewed – how many people are truly admitting to experiencing a psychological disorder on a survey?   The prevalence of psychological disorders is staggering.

Ashley earned her bachelor’s degree in psychology so she continuously nags me about some psychological condition which she has claimed I have had since my first craniotomy.  The simple fact is that any surgery can be a traumatic experience.  In her view, and the view with which I now share, major brain surgery at 24 years old, followed by a near deadly infection, followed by months of rehabilitation with the cognitive ability of a 2nd grader due to hydrocephalus, radiation and then a recurrence has definitely caused me trauma.

Yes, I survived. Yes, I am tumor free, or at least I hope.  I have my health and life.  But as Ashley has reminded me over and over, I have never given myself a minute to mourn my loss.  And contrary to what I say (the ever-stubborn man response of “I’m fine”), perhaps there was a true loss.

In the span of less than 24 hours in 2008, I had an MRI, received the devastating news that I had a large tumor in my brain and was brought in for emergency surgery.  When my initial surgery and physical recovery was over, I immediately went back to work and then school.  There was no opportunity to process the news and mourn.  Ever since, I have spent the last 7 years of my life with a brain tumor on the back of his mind (no pun intended).  I lost the carefree days of my twenties. I lost the ability to complete law school with my peers and to pass the bar exam.  I take 3,000 milligrams of medicine per day to prevent seizures and face constant medical bills with rising costs in health insurance.  I’m only 31.

So while I am a happy and self-proclaimed blessed person, Ashley refuses to let me tell her “I’m fine” because as she tells me, she sure as hell would not be.  Yeah, I’ve had my hardships and have successfully dealt with them one by one, but when I put myself in her shoes, I can understand where she’s coming from.  She has witnessed the heartbreak when I didn’t find my name on the list of successful applicants on the bar exam list three times, the frustration in my eyes when I forget something I should not have and the aggravation that I grow fatigued easier now than I ever did before.

She has begged me to go and speak with a trained professional or support group to truly open up and express my feelings.  ptsd-brain-e1392825630316Those who know me, you know that I am stubborn and have not done so – at least not yet.  I credit my stubbornness for one good thing though, and that is beating my brain tumor.  Ashley has always maintained that I can talk to her about it if and when I am upset, but cautions me that I would benefit more from speaking with a trained professional or survivor’s group.  She is unsure she can ever truly understand what I went through and the internal struggles I face.  Whether she is right or not, I don’t know but I’m at least keeping the option open.

My new work with the Connecticut Brain Tumor Alliance has helped, though – there is no doubt in my mind, or Ashley’s.  She tells me she’s seen the way his eyes light up when I talk with other brain tumor survivors.  And it’s true.  While I love talking to her about everyday life, there is something special about talking with fellow brain tumor survivors for support and guidance.  It is the best therapy.

This week, I’m meeting with the Executive Director and a fellow brain tumor survivor to brainstorm about creating a patient-outreach platform where survivors can connect one-on-one with someone in need.  When I woke up in the hospital at 24 years of age, I was lost.  Just two months earlier, I had just completed my first year of law school and there I was, laying in a hospital bed trying to write my name and recite the alphabet.  My family was by my side and I am forever grateful, but it also would have been comforting to have someone who could share some insight with me.

I’ve come full circle – I have become the person that I needed seven years ago and hope I can now help someone else out there.  Nobody should have to go through this experience alone.  Everyone needs somebody to talk with and vent to, and I want to be that person.  I’m not a medical expert, but I have lived through this and am confident that I can be a great resource for those who are in a similar position to that which I was in.  I know it’s only a drop in the bucket, but I hope I can help level out the psychological versus physical health playing field.

A Bottle Of White, A Bottle of Red, Perhaps A Bottle Of Rosé Instead?

I’ve talked a lot about the value of support groups and the impact that friends can have on your recovery along the way, but what I have yet to do, until now, is to provide some insight on my new group of friends and support – the people that make up the Connecticut Brain Tumor Alliance (CTBTA).logoAs some background, the CTBTA was founded in 2006 as a 501(c)(3) non-profit organization.  The organization has raised over $1.5 million for brain tumor research, “Patient Assistance Funds” for families in financial need and specialized medical equipment for improvement treatments.

As a non-profit organization, the CTBTA is dedicated to offering support and compassion to those affected by brain tumors.  Each member of the Board has a very personal connection to brain tumors as we are all survivors or caregivers.  As a group, our mission is to “to raise awareness of brain tumors, provide hope and support for others affected by brain tumors and raise money to support and advocate for cutting-edge research for better treatments and a cure.

Proudly, I am one of 13 Board members and together we collaborate to better the lives of those afflicted with a brain tumor.  As the new guy in the organization, I cannot profess that I know everything there is to know, but I have witnessed the dedication of every board member in their efforts to hold events designed to promote awareness and raise funds to research the cure.  And as a non-profit, we work to raise money and donate proceeds raised during  our events in support of various organizations with one goal in mind – to find the cure.  The CTBTA has proudly supported various entities including the Yale Brain Tumor Center, Hartford Hospital, Saint Francis Hospital and Medical Center, the Connecticut Children’s Medical Center, Voices Against Brain Cancer and Weill Cornell Medical College.  What an honor to be a part of something so rewarding.

Though the diagnosis of a brain tumor or brain cancer is certainly scary, as an organization, we certainly know how to make it fun.  Throughout the course of the year, the CTBTA holds numerous events including a golf tournament, a trivia challenge, the Path of Hope (a 5K walk held at Hammonassett Beach State Park), Laughter on the Brain and the Wines of March to be held on March 14th from 7:00-10:00pm at the Mark Twain House.  The link includes all the details that you need to know, but to wet your appetite, Cassidy Hill Vineyard of Coventry is providing the wine and Shebeen Brewing Company of Wolcott is providing the beer!

We do so many great things, but what makes the CTBTA stand out in the world of non-profits is our personal connection to the cause and commitment to bettering the lives of those in need.

You can learn more about our organization at http://www.ctbta.org/.

Don’t Worry Be Happy

Triumphantly, I made my return to the office last week.  Yes, three-and-a-half weeks removed from brain surgery, I went in.  photo 1I was eager and motivated to do something – better yet, anything other than sit at home and channel surf.  I was well rested and feeling great and had recently received medical clearance from my doctors to return on a part-time basis for a couple of weeks.  But what would I feel like after a 20-hour work week when I had done literally nothing for the past four weeks?  Over time, the answer to this question became clear.

Initially, I was overcome by emotion but also very excited to see my coworkers and peers.  Making the rounds and saying hello to everyone, I felt like an exhibit – “where are your stitches?” and “what are you doing here?” were the common questions.  Perhaps this is my “new normal” but unlike others, I expected to be back that quickly.  My surgeon had predicted I would be out for 3-4 weeks at most and I know how my body recovers and heals.  So when I woke up after surgery with no unexpected side effects, I fully expected to be back to work in no time at all.  Of course though, in a matter of three-and-a-half weeks, over 600 emails had piled up and I needed to sort through them.

Per my doctor’s orders, I was to work no more than 4 hours per day, even though I think I could have done more if I wanted to.  Nonetheless though, I went in and picked up my job tasks right where they had left off before my leave of absence.  Two months before I left, I assumed a new position – Associate Administrator – Marketing and External Affairs.  I decided it was time to step away from my pursuit of the practice of law and instead refocus my efforts in a position to which I felt I could make a career.

I’ll be the first to admit – nobody in the office is more upset than I that I am not an attorney after working so hard for it and putting in the time – but, I came to the realization a while ago that right now, being an attorney is not in the cards for me and just simply not meant to be.  Sure, I was disappointed and frustrated.  I took out student loans equivalent to a second mortgage on law school and was in desperate need of a way in which to repay them.  Furthermore, I had devoted time and money into passing the bar exam three times.  Each time, it was the same result and same old adage – close, but no cigar.  I needed a new goal – something tangible which I knew I could achieve and excel in.  Alas, this opportunity presented itself and I jumped.  I understand the inherent risks in that I am now on a different path than my peers who graduated at or near the same time that I did.  I will watch them as they grow through the ranks of a law firm and make more money than I ever may.  However, at the end of the day, one word assured me of this decision – happiness.

When I think about how I got to this point in my life, I think back on a number of things, namely those who doubted my ability to pass the bar exam due to my cognitive impairments: the neuropsychological evaluator; my law school professors who admired my courage for carrying on; my surgeon’s own admission; my law school dean; my bar exam tutor.  Admittedly, they were all correct.  Yet, my family never once doubted any of my decisions as I moved forward in my life.  Rather, they continually support my daily decisions.  For this, I am forever grateful.

I can’t worry about my future and what successes I’ll find.  While I may not have reached my goal of becoming an attorney, I know success will come because I’ve survived the toughest obstacle of all.  The bar exam may have beaten me down, but my tumor showed me I have what it takes; tenacity, perseverance and the strength to carry on.  I must keep plugging away, fighting adversity and rising to the occasion.  It’s true when they tell you that life isn’t easy.  Take it from me – it’s not.  As the song lyrics go: “In every life we have some trouble.  When you worry you make it double.  Don’t worry, be happy. “

Better Things

As fast as the Christmas season came and the day itself went by, the season is now over and everyone is looking to the next big day – we’re all coming to grips.  New York City is preparing for its New Year’s Eve celebrations, students and teachers are enjoying their breaks and stores are disassembling their Christmas displays and putting up Valentine’s Day displays.  Me?  With each passing day, I’m preparing myself for surgery on January 8th and it begins with my pre-admission appointment on Friday.

Since finding out two weeks ago, I’ve remained in good spirits but find my thoughts drifting off from time to time.  No matter how hard I try not to think about it and remain focused on whatever task I’m doing, I constantly get reminded that this is really happening again;  whether it’s going to work and trying to get through the day without getting lost in my thoughts and completing short-term disability paperwork or trying to enjoy Christmas day, a day that typically brings so much joy and serenity.  At least I received plenty of gifts to occupy my time while I’m home recovering.  Yes, looking forward.

2015 brings new hope and promise and I am excited to see where life takes me next.  With a new position at work…to vacations with Ashley…to a clean bill of health.  But there is something else that I am very excited about – I was recently elected to serve on the Board of Directors of the CT Brain Tumor Alliance.

When I reached out to the CTBTA earlier this year, I did so because I wanted to help.  Over the past couple of years, I’ve felt that my true purpose in this life is to provide support, hope and help to those affected by a brain tumor.  I served on the first annual “Path of Hope: A 5K Journey for the Connecticut Brain Tumor Alliance” executive committee and assisted in the planning and successful execution of the day.  I’ve also brainstormed with the Executive Director and board members regarding implementing a patient-caregiver connection so that nobody has to go through this alone.   However, at no point in time did I expect this honor.  When I accepted, I notified the Board that I was honored and humbled and cannot wait to get started – and that’s exactly how I feel.  Unfortunately, I need to wait.   The first meeting is one week after my surgery and I will likely be unable to attend.  But then come February, I’ll be ready to go and eagerly awaiting my opportunity to share some ideas that I have with the Board and hope for their approval.

So until then, I’ll wait and keep positive.  I fully believe that the procedure will go well and the tumor will at long last be 100% gone. So I’m going to ring in 2015 as the beginning of the rest of my life.  I’ll get rid of the monster in my head for once and for all, I’ll return to the office in my new position and I’ll also be an integral part of the CTBTA.  Great things are on the horizon.

As The Kinks sang and which is my motto at the moment “forget what happened yesterday, I know that better things are on the way.”

Don’t Worry Be Happy

That was an MRI.  For forty-five minutes, sometimes closer to an hour, this is what I have to endure.  If you’re wondering what those annoying sounds are, wonder no more.  These are the rapid pulses of electricity running through the machine to produce the images that assist doctors in discovering tumors and other bodily harms.  But don’t worry, you get ear plugs.

Worry.  That word is too commonly thrown around in today’s world.  While in the midst of working, Christmas shopping and having a social life, I have been mentally preparing myself for my MRI next week.  Shockingly though, as much as it’s been on my mind, I haven’t let myself dwell on it.  Fortunately, an MRI is nothing new for me as I have had so many in the past six years.  Instead, I look forward to MRI days as I know that they are my ticket to receiving a clean bill of health.  The process of having one though?  That’s a whole other story…

Each time that I go to the hospital to have one, I have to complete a form and list out the dates of all my past MRIs and list each hospitalization in my life.  It boggles my mind why patients are required to fill out the same form every time when we have so much on our minds as opposed to the hospital simply pulling the patient’s chart or better yet, having us review the record and noting any changes and/or updates when we arrive.  The part that gets me every time is when the radiologist says: “before I can bring you into the room, can you tell me your name and date of birth?”  As if I would be here otherwise?!  But I digress.

Over the past six years, I’ve seen images of my brain captured by MRIs.  However, it’s not just those very loud noises and shaking of the machine that produces the images – I introduce you to contrast dye.  For most MRIs and with my scans, right before the very last images are taken, contrast dye is injected into a vein.  You can feel it – your body goes from a comfortable temperature to feeling like you just walked outside into a blizzard.   But the contrast is important as it provides a greater look at the organs and for making a diagnosis.  Then there’s the claustrophobia aspect of it all; being in an MRI machine, unable to move a muscle with the mask an inch over your face is anxiety-provoking even if being in confined spaces does not bother you.

So as  part of my new-found quest to be an advocate for brain tumor research and educate the public, I’ve decided to share some of my past MRIs with you.

Let me start with this: Screen shot 2014-09-30 at 8.09.14 PMYou may recall seeing this MRI in a previous post, but I am sharing it again because this was my very first MRI – the beginning of what I now say defines who I am as a person.  The MRI shows the tumor sitting in my ventricular system up against my optic nerve and pushing my brain off to the sides.  Hydrocephalus (water on the brain) is also present.  Then, there was this from this past March:

brain-scan-2Do you see the circle in the lower right-hand corner?  If you guessed that is my shunt, then you are correct.  It’s amazing what doctors can do today.  Because of that device, my brain looks nice and relaxed.  There are no obstructions, the hydrocephalus is under control and there is no tumor regrowth.

Throughout the years, the goal was to have me scanned once per year.  During post-op years 1-3, I was scanned once every six months.  After that ,everyone (including me) hoped that I would only need to get scanned once per year but now, six years out, that has not happened…yet.  Since just last October, I have had 4 MRIs.  The one below was “pristine” and perfect.brain-scan-1

It amazes me to see this one compared with my first above.  To think that the mass was removed and in the span of five years, my brain looks normal again.  Talk about a hard job!

Okay, so enough talk about the preparation – let’s go and do this.  I’m as ready as I can be for next week and whatever results that it brings.  As mentioned in a previous blog, I am being re-scanned out of precaution.  I want to get through next week before I show you the most recent scan but as I look at it, I go back and forth on whether it looks any different.

Hopefully it’s nothing and I can resume living my life.  Hopefully I won’t have to worry and can be happy.  But time and enduring more loud noises stand in the way first.  This is the story of my life.  Yet, I manage to always find the positive in every situation – even for return trips to Yale for MRIs.

Give Thanks and Praises

And just like that, in the blink of an eye, the holiday season is upon us.  But before you sit down tomorrow to enjoy that glorious feast, take a moment to give thanks to those around you and for the plentiful gifts bestowed upon you.  Have you ever wondered why we celebrate on one day as opposed to every day?  I  know I have.  Just some food for thought.

Yesterday, I had the pleasure of listening to Army Sergeant First Class Joe Kapacziewski speak at the Middlesex County Chamber Breakfast as he was honored as the Role Model of the Year by the Chamber.  His story is eye-opening and truly inspirational.   As he shared in his remarks, Joe was injured by an enemy grenade when he and his men were ambushed in Iraq on October 3, 2005.  The ambush resulted in severe injuries to Joe’s leg, hip, artery and nerves.  He spent seven months at a rehabilitation facility relearning daily tasks that we all take for granted.  As he stated during his remarks and in during his Q and A, family, friends and his support group often got him through these difficult times.  However,  after more than 40 surgeries and countless hours of rehab, Joe made the difficult decision to have his leg amputated and then went for intense physical therapy to relearn how to walk.   Through hard work and determination, Joe was the first Ranger to return to the line with a prosthetic and was deployed to Afghanistan six times.  Furthermore, Joe was deployed eleven times in support of the Global War on Terrorism.   However, Joe shared that his return came with naysayers and those who doubted his ability and cautioned him in his quest to return.  Yet, he stared adversity in the face and is the true epitome of an American hero and someone who we can all look up to.

So this Thanksgiving, I have plenty to be thankful for.  Like Joe, I live for every day and count my blessings.

  1. My rock, my best friend – Ashley
  2. Family and friends
  3. My continued good health
  4. My job and generous co-workers
  5. The simple joys of life
  6. My dog, Coddington
  7. The setbacks endured this past year that have made me stronger and given me character
  8. The freedom of life and ability to live
  9. The ability to find hope and laughter even in bleak situations
  10. Great and lasting connections made with the wonderful people from the CTBTA

This list comprises just a small sample of all that I have to be thankful for.   I hope and believe that next year, at this time, I’ll be in a similar situation and counting my blessings and giving thanks for the wonderful gifts I recognize everyday.  However, I cannot but help to think of what my MRI next month will show.  Was the brightness just an aberration or was it tumor activity?  Time will tell.  But until that day, let’s give thanks and be grateful for the everyday gifts we receive.

So while you are enjoying that turkey and gravy, be thankful that you’re able to do so with your family and in-laws and say a prayer for me.

thanksgiving-cartoon3

We’re Gonna Play The Sue You, Sue Me Blues

Decorative Scales of Justice in the Courtroom“May it please the Court, and you, ladies and gentleman of the jury.”

I have been robbed of the opportunity to speak those words in court so I have taken the liberty to do so here.  If you practice law, you are well versed with what these words mean, but for those who are not lawyers or did not go to law school, this statement is uttered during the opening of trial.  I visited several attorneys to explore options of filing a medical malpractice case, all to no avail.   The statute of limitations has run but nothing says I can no longer think about it.  The lawyer in me often runs through the elements of negligence when I think about my case and the standard of care that a doctor should be held to.

To be found negligent, a plaintiff must show that: 1) the defendant owed a duty of care; 2) the defendant must breach that duty; 3) the defendant’s actions caused the injury; and 4) the plaintiff must prove actual damages.

Here’s how these requirements apply to my case:

1 and 2. You know the basics of my story: In the summer of 2007, I began experiencing double vision. Nothing precipitated the double vision – there were no warning signs.  No vomiting, no blackouts, no memory loss, no loss of balance – just the mysterious double vision.  At a visit to my optometrist, a routine eye exam was performed and my optometrist told me that “he saw something” when he looked into my eyes.  Puzzled and fearful, I asked what he meant by this and prodded for some insight. Yet, much to my chagrin and against my wishes, he did not delve into the possible causes that would explain this problem.  He simply brought me into his office, sat me down and said that as far as he can see, my optic nerves were inflamed (known as papilledema in the medical world) but there was nothing for me to worry about.   In his opinion, my eyes and optic nerves looked healthy.

Within two weeks of wearing the glasses, the double vision subsided.  Fast forward to the summer of 2008: the double vision returned.  This time around however, those same prism glasses did not correct the problem.  When I returned to the optometrist, he evaluated me and agreed that a new prescription for prism glasses was needed but determined that the reason for this was that “my eyes were eating the prism.”  He conceded that this was odd but not unusual for someone wearing prism glasses and wanted to write a new prescription.  Yet, inflamed optic nerves and papilledema do not just occur overnight.  Each and every year that I went for my annual eye exam, the same battery of tests were performed: I read the letters on the chart, my peripheral vision was checked, a glaucoma test (or the puff-of-air test) was given and my eyes were dilated. Each and every time, my doctor “saw something”, but didn’t investigate further.

It’s reasonable to conclude that my doctor owed me a duty to provide quality care and advise me of potential problems when he informed me that he first noted papilledema and first saw something pressing against my optic nerve in 2007 and he breached this duty when he failed and refused to send me for further evaluations and prescribed prism glasses.

3.  Causation is proven by a showing that the doctor’s actions caused the injury.  After removal of the tumor, my surgeon informed my family and I that, based upon the size of the tumor, it was likely growing inside my head for anywhere from three-to-six years.

In other words, “but for” the doctor’s negligence, the tumor could have been detected earlier.  The procedure to remove the tumor would have been less invasive and the recovery would have been different.

My lawyers agreed that my case satisfied requirements 1 and 2, and potentially even 3.  This brings us to element 4: damages or harm.  This is where my case failed.  Fortunately, I made a “recovery” in the legal sense.  In the opinion of the attorneys, I could not show that I had suffered actual damages.  I was, in all practical ways, cured and healthy.  My prognosis was good, the tumor was benign and removed and I had no permanent debilitating consequences from the delay in diagnosing me.

In my opinion however, this is where the law fails.  And my story is a compelling example of how that is.  My law school career came to a screeching halt and I never recovered in the classroom; as a result of the size of the tumor at the time it was removed, I now have cognitive disabilities which hinder my ability to quickly process information; I developed seizures and will likely remain on seizure medications for the rest of my life.  These are just a few.

Please don’t get me wrong. I don’t want any compensation or monetary damages for pain and suffering.  What’s in the past is in the past.  But what I do want is to ensure that this problem does not occur to anyone else.

Find me one person, one attorney that is even a plaintiff’s attorney, who could tell me that this was the right decision.  How do we, as a society, fail to hold a licensed optometrist responsible for failing to diagnose my problem over the many years that I visited his office?

Despite my high tolerance for pain and lack of manifestation of any symptoms, how did the presence of the tumor go undetected for so many years?

So as I already said, my case failed for a lack of recognizable damages.  But how can the law allow such grave deprivations of patient care and allow a doctor to continue his practice?

I struggle with this question every day and wish and pray that this problem does not scare another innocent person to death.

While I can no longer pursue a lawsuit, perhaps my story will someday help to influence a change in how we hold professionals accountable.

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.

You’ve Got A Friend In Me

In the past week, I’ve done some thinking.  Okay, that’s a lie – I’ve done a lot of thinking.  Mostly about that bright spot on my MRI and what it could possibly mean.  Is it tumor activity or is it radiation necrosis?  Only time will tell so until December, I must let it go and move forward with my life.

And as I move forward and try to put my ordeal in my past, I have become involved with the Connecticut Brain Tumor Alliance (CTBTA).  As you saw in my last post (The Path of Hope), I am now a part of the CTBTA.  This past year, I reached out to the organization because I wanted to help, wanted to share my story and do what I can to better the lives of those who are suffering today.   A brain tumor can be debilitating but nobody should have to suffer through the ups and downs alone.  What’s more is that with the collective efforts of enough people passionate for this cause, together we join forces to raise awareness and to find the cure.IMG_0711

Sure, I went to law school and earned my law degree.  But my battle with my brain tumor has left me unable to pass the bar exam and for reasons that I previously discussed and now dealing with the bright spot in my brain, I would not even contemplate trying again.  More importantly though, working within the brain tumor community to provide support and provide fundraising efforts to finding the cure is my passion.  As a result, the sting of defeat four years after graduating and still being unable to practice law has been tamed and honestly, I am okay with how my cards have been dealt.

I am constantly being told that I am always smiling, always pleasant.  Even on those days where everything goes wrong and I just want to scream, I take a step back and reflect on how fortunate I am.  When you go through a life event such as what I went through, or any person with a life-threatening illness for that matter goes through, you realize how great life truly is.  For me, I realized this years ago and finally chose the CTBTA as the organization that I would involve myself with to share my life experiences and enjoy the same semblance of happiness with fellow brain tumor survivors.

Not only did the diagnosis scare me.  It also made me more aware of life and how we should live.  It made me smarter.  It made me brighter. Literally and physically.