Author Archives: CVCwade
Defining The New Normal: The Power of Your Words
May 7, 2015This column is the second of a four-part series by Colleen Brunetti, M.Ed., C.H.C., based on Brunetti’s book, “Defining The New Normal: A Guide to Becoming More Than Your Diagnosis”.
Many years ago, perhaps before I was really even comfortable with sharing my story of life with Pulmonary Hypertension (PH), I found myself being pushed out of my comfort zone and encouraged to do just that – talk about my journey with PH.
At first, I was quite taken aback. Any talk about my journey was centered on sharing my alarm at the diagnosis, expressing my confusion over medications, and grappling with a fear of the future. I was looking for answers, not offering them. Why was I being asked to share my story? However, as time progressed, and I started to learn how to live with PH, I began to also learn that sharing my story had great power.
I learned this by first seeing the power that other people’s stories had on me. I looked around and saw someone who used to be limited by his or her disease and now was doing better – could I feel better too? And then there was someone who learned to cope with a limitation I struggled with – could I be coping better too? And perhaps most mind-blowing to me, there was someone who had not only regained mobility but was actually exercising – could I start exercising again too? The answer to all of these questions was eventually, “Yes”. And as that became clearer, something began to shift.
I have come to realize there are actually three distinct groups of people you are reaching when you are sharing your own story, and each has a reciprocal benefit. These three audiences create a cycle that repeats itself as you make progress, face new challenges, and help those along. You may also find yourself moving between one group and the next yourself as you listen to others tell their story.
Steps Through a Support Cycle: The People You Impact
Those who are a step behind you:
You are living with a critical illness, or caring for someone who is. Chances are, you’ve learned a thing or two about coping and moving forward. When you share your story, those who are a step behind where you are now can look to you for guidance and inspiration. If you have to be put in this crazy hard world of critical illness, what a blessing it is to turn that around and use it for good, and for helping others. Do it whenever you can.
Those who are stepping beside you:
These are the people who are living stories with strong parallels to yours. They are the ones who “get it”. In a broad sense, this may be anyone sharing life with the same disease you are. However, there are always subgroups in these categories too, such as those who are in the same stage of life as you are, or those who are on the exact same medication, etc. It is these people who you can look to and say, “Me too! Let’s do this together.” There is something immensely comforting about that.
Those who are a step ahead of you:
These are the veterans, the movers and shakers, the “been there, done that, got the T-shirt” crowd. They’re the ones who have blazed the trail on new medications, found ways to cope with limitations, or blasted through walls you are stuck trying to figure out how to get around. These are the folks who, when you tell your story, look back and lend you a hand up. When you rely on those who are a step ahead of you, you not only benefit from their wisdom, but you help them solidify their own strength. Pretty cool, right?
Crafting Your Words
No matter where you are in your own journey with a major diagnosis, someone needs to hear from you. What counts is that you are sharing your story, and listening keenly to others tell theirs, so that there is always an exchange of information, support, and inspiration.
While it’s pretty clear that sharing your story can have immense impact, sometimes it can be challenging to find the right platform. Start small, with support groups of people you trust, for example. Attend meetings, get to know one another, and watch as the cycle of sharing and supporting turns.
Social media is also a great place to start. Not only is it available 24/7, it is also accessible when getting out and about isn’t quite so easy. There are groups on Facebook, for example, for just about any topic you can dream up. Can’t find one? Start one. Chances are, someone else is out there looking too.
Blogging or journaling can also be immensely helpful. There is something very therapeutic about writing down your experiences and the thoughts and emotions that come with them. If you choose a public blog, and really keep it up, be ready for outcomes you weren’t expecting! I have been blogging for a few years now and every once in a while someone will contact me and tell me my blog gave them hope as they lay in a hospital bed reeling from a diagnosis, or were up in the middle of the night searching the Internet for answers. When you throw your story out to the world, you never quite know the amazing ways it can come back to you!
For me, sharing my story took a sort of unexpected and massive turn when I wrote my book, “Defining the New Normal: A Guide to Becoming More Than Your Diagnosis”. In this book, I use pieces of my story as a jumping off point to tackle every aspect of life I could think of when living with a major diagnosis. I also combined it with my professional training as an Integrative Nutrition Health Coach. So it is one part “How I did it” and one part “How you can too”. It is the go-to guide for thriving, no matter what the medical charts say.
The exciting thing for me about this experience is that for the first time I was able to take my story beyond the PH community. I very purposefully wrote the book for anyone facing a life changing diagnosis – be it rare disease, autoimmune, cancer, and so on. And there is no way I could have done this successfully without observing the cycle of support that happens in other disease communities, and listening to the stories of so many people, many of whom make an appearance in the book as well.
The truth is, it doesn’t matter if you’re curled up in bed with a journal and a pen, publishing a book, talking to a small support group, or addressing an audience of 1,000. What matters is that you share what you know. It helps you cope, it helps others cope, and it is at the heart of what drives us forward together.
In conjunction with my book, I am running a little project called #iDefine. Send me a picture of you defining your new normal with a diagnosis and tell me a little about it. Whether it is finding something new to do that you love, or getting back to something you thought you could no longer do at diagnosis, show me in a photo how your story defines the journey for you. I’ll put it up on my website in a slideshow and help you take a step to sharing your story with the world. E-mail pictures and photos to: [email protected] and put #iDefine in the subject line. I look forward to hearing from you!
For more information on Colleen’s book, visit www.definingthenewnormal.com
Posted in Diseases, Featured, Media Center | Comments OffLeadership
April 30, 2015
Pamela Harris, President
Pamela Harris co-founded Caring Voice Coalition, Inc. (CVC) and operates as president of the organization. Her focus is on fundraising, direct management and new program development. She is a certified grief counselor and has more than 20 years of nonprofit management experience with an extensive background in case management and reimbursement. Harris attended Harcum College in Bryn Mawr, Pennsylvania.
She feels strongly that advocates, working together with professionals from the health care industry, ensure that chronically ill patients will continue to receive direct access to medical treatment. Her work in health care has taught her that many patients are lacking the essential structures of education and support, necessary to overcome their illnesses.
In 2009, Harris joined the ranks of cancer survivors, which has allowed her to share her personal journey, thereby helping educate patients and empower them in battling their own illnesses.
Samantha Green, Vice President
Samantha Green provides hands-on management of daily internal operations while overseeing the strategic development and long-term institutional goals of Caring Voice Coalition, Inc. (CVC). She is responsible for planning CVC’s growth strategy, cultivating opportunities in new and existing markets, and responding to the growing demand for CVC’s programs and services nationwide.
Green assists the president in the design, testing and execution of strategic programs based on CVC’s mission and vision. She works with executive management to create and monitor policies and procedures, ensuring high-quality programs and services for the organization’s patient communities and funders.
Green has over 10 years of experience in the health care industry. Before joining CVC she worked as a radiology technologist in both hospital and imaging center settings. She attended Virginia Commonwealth University with a primary focus in radiologic sciences. She holds certifications in diagnostic radiography and computed tomography.
Taylor Scott, Director of Patient Services
Taylor Scott joined Caring Voice Coalition, Inc. (CVC) in 2010 to oversee the creation of its marketing department.
Scott now works with CVC’s president and vice president to develop, test, and create programs and services for CVC’s patient communities and specialty pharmacies. Scott and his team work closely with specialty pharmacies and partner companies to ensure quality program management and to create and monitor program policies and procedures.
Before joining CVC, Scott worked in the financial industry with a focus on retail management and customer communications. He brings 12 years of leadership and management experience to his current role.
Rebecca App, Director of Finance
Rebecca App oversees the financial department and is responsible for the accounting at Caring Voice Coalition, Inc. (CVC). App prepares the organization’s financial statements, while working with donors to ensure adequate funding for patient programs. She and her team work closely with both the patients and pharmacy partners to ensure financial grants are paid efficiently and effectively.
App received her bachelor’s degree in history from Salisbury State University and her master’s degree in education from The College of William and Mary before earning her post-baccalaureate certificate in accounting from Virginia Commonwealth University. In addition, App received her Certified Public Accountant (CPA) license from the Commonwealth of Virginia and is a member of the Virginia Society of Certified Public Accountants. She brings more than 16 years of experience in the financial industry to CVC.
Jennifer Previtera, Director of Communications
Jennifer Previtera oversees the marketing, events, and communications departments for Caring Voice Coalition, Inc. (CVC). She spearheads the development of educational, support, and advocacy materials, including CVC’s Community magazine and social media.
Previtera also works with CVC President Pam Harris and Vice President Samantha Green in raising program awareness through patient events and conferences.
Before joining CVC in 2011, Previtera worked in the financial industry for more than 10 years. She studied business management at Liberty University and brings leadership and management expertise to her current role. As a longtime supporter and volunteer for CVC, Previtera offers an in-depth knowledge of patients’ needs.
Ron Pisarz, Director of IT
Ron Pisarz oversees the IT department and is responsible for all software and hardware, as well as the communications system at Caring Voice Coalition, Inc. (CVC).
Pisarz, who joined CVC in 2013 as systems architect, leads the IT team in developing and improving the technological aspects of CVC’s services, programs, and infrastructure.
He holds a bachelor’s degree in economics and finance from the University of Maryland, Baltimore County, with further graduate studies in finance. He brings more than 19 years in the IT industry to CVC.
Robert E. Mayfield, Director of Medical Affairs and Compliance
Robert E. Mayfield, M.D. specializes in family medicine and maintained an active practice for 15 years. He served as a first-line provider with a focus on disease prevention.
Mayfield joined the Caring Voice Coalition, Inc. (CVC) team in 2015 and oversees the Department of Medical Affairs and Compliance. He provides strategic medical advice and counsel on new disease funds prior to program implementation. In addition, Mayfield reviews CVC programs on a regular basis to ensure the organization is in compliance with the Office of Inspector General of the U.S. Department of Health and Human Services. He serves as a representative link between CVC and the medical community of the patients they serve.
Mayfield earned his bachelor’s degree in biology from the University of Virginia where he proceeded to obtain his medical degree. He completed his residency training with Chesterfield Family Practice.
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