It Takes a Village

Most have heard the saying, “It takes a village to raise a child”. While I wholeheartedly agree with this, I also feel that this applies to healthcare and needing a village to heal patients as I have directly benefited from the efforts of my “village”, or per the ABTA, my commYOUnity. It is probable that I would have had similar success as I do now with surgery and therapy alone, but the quality of my life would have significantly lacked in comparison if I did not have the emotional and personal support I had and still do.  To have traveled this journey alone seems unimaginable.

It wasn’t until December of last year that I felt well enough to start exploring avenues to get involved and possibly become a mentor or “buddy”. My desire to do so was inspired by my own struggles as I found myself often frustrated with the lack of clarity surrounding my diagnosis and then with recovering from disability. I would ask what I thought to be simple or general questions only to receive the run around. Was I the first brain tumor patient these individuals have ever encountered? Am I the first disabled person asking for information on the best course to be independent again? Driving was a huge goal I wanted to accomplish and for months I sought information or assistance but found myself directed from one person to another.  

In a Chicago State of Mind. 

This passion also led me to the American Brain Tumor Association (ABTA) and the Connecticut Brain Tumor Alliance (CTBTA) . I was fortunate that through my efforts to advocate with ABTA, I was invited to Chicago where ABTA headquarters is located for the annual Patient and Family/Caregiver Conference at the end of July. 

Member of ABTA CommYOUnity Network. A staircase full of inspiration. 

At the conference, I learned about current treatment methods and innovation in the areas of neurosurgical and neuroncological medicine.   I remember hearing stories of other survivors and all I kept reveling in was, “they get it”. It was at that moment that I felt my struggles and concerns were validated by this amazing group of individuals who each struggled with and continuously persevere against a diagnosis that has wreaked just a little bit of havoc in their lives. I had never met any of them before then and yet I felt like I could relate to them and that we shared this bond through our experience.  

This theme of comradery and commYOUnity was also relevant in the distinguished panel of speakers at the event including Drs. Susan Chang, Mark Johnson, Erik Sulman, and Joon H. Uhm to name a few. During one of the case review panel board seminars, whilst discussing the benefit in patient care with a tumor board vs a single MD approach, Dr. Lorenzo Munoz, a neurosurgeon at Rush University Medical Center, stated “I’m a smart guy, but I’m not smarter than all of us collectively”. It was a statement which was appreciated and applauded by many attendees who have personally benefited from a collaborative approach.

Later on, I was afforded the opportunity of attending a lecture given by APRN Kathy Lupica on “Quality of Life: Managing your Symptoms & Finding Support”. It was a humorous lecture with a touching tribute to the recurring theme of community in the lives of many patients. 

ABTA Patient & Caregiver panel. 

Another inspiring aspect of the conference was the opportunity to hear actual patient and caregiver experiences. Two couples were asked to speak of their experience. Meet Martin & Karma who have bravely battled Martin’s Glioblastoma diagnosis and Donna VanRyn a 9 ½ year Glioblastoma survivor who credited much of her success to the love and support of her husband. They also echoed the sentiments of many gathered to hear their experience, particularly Donna, who stated she has done so well that people have a hard time registering her illness. “I look too good to be ill to others”. Overall, the conference was an amazing experience and an opportunity to meet wonderful individuals who will be partners in the continued effort to advocate for brain tumor patients and their caregivers. 

CTBTA Night of Hope

Back in CT, I followed up the conference with the Connecticut Brain Tumor Alliance “Night of Hope” with attendees, friends, and fellow brain tumor survivors, including Chris and Ashley Cusano. It was an amazing evening of music, inspiration, and of course paella. We gathered and watched Morgan Platt’s rendition of “Fight Song” by Rachel Platten. We then ended the evening with inspiring words by Tracey Gamer-Fanning, President Emeritus of CTBTA. A 9yr brain cancer survivor, mother, wife, and relentless advocate whose message ensured that those present to hear her speak that night will never look at brain tumor patients the same again. 

To say that I have been inspired by these two organizations, their members, and fellow volunteers is an understatement. I have recently been matched with another brain tumor patient and though she has mentioned that my random calls have brought her some joy and comfort, I make sure she knows that by allowing me to be a part of her community, she has done the same for me. So indeed, it takes a village to heal a patient. 


It’s amazing how much can happen in one week, let alone in a year. Things can change in an instant, we can be set in our ways and all of a sudden be presented with an obstacle or opportunity depending on our circumstance and outlook. How we then handle that situation can be a source of inspiration for others. In my own experience, I’ve been grateful to receive words of encouragement regarding starting a blog and the honor of being called “inspiring”. But truth is, if I’m any such thing it is because I have been inspired myself and continue to be so regularly. I have benefited from knowing certain individuals, learning from their determination and perseverance, and above all else, experiencing their good will. Well, just this past week, I was reminded of the blessing of meeting or knowing of such individuals and I have been truly inspired. 

First, I was fortunate to participate in the Gaylord Health Gauntlet 5K Obstacle on June 27th, 2015 in Wallingford, CT. It was an amazing opportunity for me as it marked the one year anniversary of the event from when I was an inpatient last year. This year I was front row and center, cheering participants as they neared the finish line. As a volunteer I was assigned the fire pits, three holes dug in a parallel fashion in the ground with burning wood and flames threatening to engulf those that jumped across. It was the last obstacle on the way to the finish line and the runners came tired, sore, some bleeding from their knees, and alternatively, a few that had trained for months who breezed by like gazelles in the Serengeti. The runners were soaking wet from the water slide in the previous obstacle and grateful for the warmth as they neared the fire. My job was to cheer them on, “make it look easy!” I yelled. “Finish it like a champ!” calling them by their numbers. Later in the week, many came up to me in Rehab and told me I was their favorite part of the course. What can I say, I have a gift. 

Although each participant was enthusiastic despite their exhaustion, the most moving were two gentleman in the end whom I see at rehab regularly. As we neared the last hour of the event, there was a buzz that two former patients, Robin & Mike, were participating this year for the first time. Because of some of their  physical limitations, a few of the other volunteers who happened to be some of our therapists were actually volunteering to join and assist them as they completed the course. All who witnessed the two men round the corner and walk towards my obstacle were visibly moved. Two of the therapists grabbed one by the arms helping to lift him as he made his way over each pit. I cheered him on as he made his way over to the finish line. I was inspired and hope that next year I too can do the same.  

You can read more of this story and see more pictures at:

Second, the Connecticut Brain Tumor Alliance (CTBTA) sent a message to some of the members in addition to posting on social media that a young brain cancer survivor (11 year old) Morgan Platt was making a music video to Rachel Platten’s inspiring song, “Fight Song” to raise awareness regarding brain tumors. Along with other survivors and members of the CTBTA she was documented by News WSFB Channel 3 on July 1st. Some may be familiar with Morgan because she made a video in 2013 to Katy Perry’s “Roar” which featured staff and other pediatric patients at CCMC. Her story was featured in the Huffington Post and her video went viral on YouTube. I have a great deal of respect for this young lady for having endured so much and yet finding the courage and drive to spread awareness. She is truly inspiring, and I suspect, this is only the beginning as we can expect so much more from her. 

You can read more of her story and watch the touching video at:  

Lastly, this July 4th marked my one year anniversary of my discharge from rehab, and like Tim, Robin, and Morgan, this event too was inspiring. As I think back to coming home this day last year, I remember being wheelchair dependent, first person assist. My dad with his semi-thick South Asian accent would tease me, “why are you on a leash?” as my brother would support me with a gait belt at my waist throughout the house. This July 4th, I fully celebrated independence from a patriotic standpoint and a personal one and yesterday, I received my graduation certificate after finally completing one year of intensive physical therapy.

In the end, I have been reminded that inspiration comes in many forms and from all kinds of people in life. One must be open to experiencing it and also wise to learn from it. I hope and look forward to continue being inspired and also to continue being a little more inspirational myself. 

Brain Tumor Awareness Month- May 2015

May 31st marked the last day of Brain Tumor Awareness Month (‪#‎BTAM‬) & I am so grateful to have ended the month on a positive note. I was fortunate to be able to attend the Connecticut Brain Tumor Alliance (‪#‎CTBTA‬) annual Laughter on the Brain event in Hartford. A night filled with inspirational people, music by Broca's Area, and hilarious comedians. Laughs did not end there, I celebrated my nieces' 13th birthday and it was good times and silly jokes then too.

I think most would agree that laughter is the best therapy.