Monthly Archives: March 2015

Listen To The Music

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Raising awareness and spreading hope – these are the two things that, as a brain tumor survivor, I hope to accomplish these days.  As I wrote about in a previous entry, Broca’s Area, a fusion/hip-hop band had their CD release party this past Thursday.  A packed house came to watch the band debut their album titled Clarity.  The night was full of great music (take a listen to Space, one of their original singles), an amazing live drawing 10647130_812098832172320_2219110831019678840_ncapturing the night’s vibe and a laser show.  It was a wild Thursday night (for me, anyway). Despite all the obvious revelry, the intangibles stood out to me most.

Over the years, it has become abundantly clear to me that my story is not only mine; I have shared every step of this journey with my family.  It was them who watched me spend weeks and months in the neuro-ICU and rehab.  It was them who nursed me back to health.  And it is still them who support me through every moment.  Words cannot express the pride I feel when I see how everyone has taken something so terrible and turned it into something positive.

When my brother Stephen came to me with the idea of donating a portion of CD sales to finding the cure and helping better the lives of those in need, I was honored and knew just where to turn.  One day in 2014, I was home exploring ways to connect with other brain tumor patients and advocates, when I happened upon the CTBTA website.  Within days of filling out a contact form, I was having coffee with the Executive Director and another Board member, sharing my story and ideas.  They welcomed me with open arms.  From that moment on, I have felt a renewed sense of purpose.

For me, the night was such a beautiful melding of my family who has been there from day one, friends and the family I’ve found in the CTBTA.  The pride I felt watching 11091202_812101065505430_9171527113053482358_nmy brother and his bandmates killing it on the stage was almost overwhelming – knowing how much work went it to this, not only for themselves, but for others is a true testament to how much we can accomplish. 11051865_812100148838855_6420674188541795924_nTo everyone who purchased a CD at Black Eyed Sally’s, or who purchased one previously or since then, we thank you!  To my new friends at Carla’s Pasta who have shown tremendous support and generosity, we thank you.  Because of all of you, finding effective treatments and the cure to brain tumors and brain cancer can someday be made possible.

Equally as exciting as watching the show was witnessing the spirit of my fellow survivors and caretakers.  As has been discussed over and over on this blog, a brain tumor diagnosis is devastating for the patient and caretakers.  But with strong spirits and perseverance, any obstacle can be overcome.  I send a big thank you to Susan, David, Tracey, Greg, Maria and Kim for being there with us on this special night.  Your enthusiasm and support are the reason that I volunteered and am now a board member of the CTBTA.  The passion that you have for this cause is unbelievable and inspiring.  Each of our stories is special and unique in their own way, but we are all connected by one common denominator.

For Stephen, music and this band were his clarity during a tough time.  For me, family and realizing what truly matters in life is my clarity and what gives me the drive to carry on and succeed day-to-day.  As I’ve explained before, music has also served as my clarity.  And as you may or may not have noticed, I write these posts based on music and songs.  So in case you missed it, mark your calendars for September 19th and join us for the Second Annual Give Back Music Festival: Brainstormin’ to benefit The Cusano Family Brain Tumor Fund at the Yale Brain Tumor Center.  Let’s continue to focus on the good – let the music, laughs, and some cold beer bring some clarity to and hope for this devastating illness and those living through it.

Like A Bridge Over Troubled Water

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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?

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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/.