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joycegroenke

Social Media Summit Scholarship Essay – Liza Bernstein

Posted by @joycegroenke in Cancer, Aug 16, 2011

Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post:

http://socialmedia.mayoclinic.org/2011/07/26/patient-caregiver-scholarship-contest-for-social-media-summit/

for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.

Here is Liza Bernstein’s Essay:

In early 1994, when I was newly diagnosed with my First Breast Cancer, I was initiated as an ePatient via a pre-internet social network -- people connecting with phones.

My oncologist put me in touch with a former patient and encouraged me to ask her about her story of surviving cancer. I’m certain she knew that this woman would not only inspire me, but share tips and connect me to resources that would help me on my way... which, of course, she did. That’s how I discovered Harold Benjamin’s book “From Victim to Victor,” and the then quasi revolutionary concept of “Patient Active.” This approach, which my oncologist and her former patient modeled, clicked for me, and thus began my ePatient journey.

In October 2005, when I began the recovery process from my Second breast cancer, I joined a support group moderated by both my radiation oncologist and an oncology social worker. I discovered the power of sharing stories and information in a safe setting and found much solace in my ability to help and inspire people by “just being there” as a 2x survivor.

In December 2010, when I was recovering from 18 months of chemotherapy and surgery for my Third breast cancer, I followed my curiosity about new research at the annual San Antonio Breast Cancer Symposium, explored their website, and found the event’s Twitter hashtag: #sabcs .

I read and read the feed until I saw a statement that intrigued me, at which point I jumped in and asked a question. Next thing I knew a real person from a real, top-notch cancer center took the time to answer me, and my first (of what has now become many) real Twitter conversation about health care began. Here’s that seminal tweet (I’m @itsthebunk):

danafarber: @itsthebunk 1) Fear/denial; some women feel they don't want to know. 2) The recent guideline changes make things less clear-cut. #sabcs 12/09/2010

Those three crucial experiences plus many more are what led me to become an informal patient advocate. I can’t tell you how many cancer patients I’ve helped since 1994. It’s been an ad-hoc process that’s come about organically. Someone refers a friend.... someone asks a question in a support group... my oncologist asks if I don’t mind talking to a new patient...

I’ve been through it all -- each of my cancers were primaries; each was caught early and treated aggressively -- and learned so much. While utterly disrupting my life, each episode has also been an opportunity for growth. I’ve refined my knowledge, learned new things -- coping methods, how to really heal, for example -- and developed my own “tricks of the trade.”

I’m deeply passionate about helping others become well-informed, engaged patients because I know one simple thing: getting a serious disease is horrible, BUT you have choices for dealing with it. If you can become a partner in your own care, your journey will be less difficult, you will be able to find grace and come to peace with agonizing decisions, you will meet some amazing people on the way, and... you will discover how much inner strength you never knew you had.

Now, I use Social Media. I’m connecting with people on a larger scale, loving every second of it and want to do more of it. Maybe even make a living doing it. Every week, I look forward to both the #hcsm (Health Care Social Media) and #bcsm (Breast Cancer Social Media) chats on Twitter.

If I had the means to attend this Mayo Clinic summit I would have signed up when I heard about it! I’m requesting a scholarship because while my health is much better since my most recent cancer battle, I’m still in the process of getting back on my feet financially and professionally.

I’ve worked in the field of Interactive Media since 1991, primarily as a freelancer, and am seeking to combine my life and work experience to help improve people’s day-to-day experiences of illness and interactions with their medical teams. I’m interested in using both social media and mobile applications to this end, and want to keep learning as much about it as possible.

There are ideas I’d like to discuss with experts and peers, such as: how to engage more patients and train them to use social media to improve their health and interactions with their doctors; how to use social media to help regular patients become ePatients; social media literacy. I want to meet people similarly passionate about all of this as well as innovation in health care in general, and to share my insights. I know I have a lot to give and would be honored to be able to.


Tags: Scholarship contest, Cancer, Breast Cancer, patient, Patient Advocate, womens health, social media, Community, surviving

tgriffith, jackiefox12, WillB and 29 others like this
mdunnerstick

Posted by @mdunnerstick, Aug 17, 2011

Wish I could double like this!

MF76, dbp, bobbichiko and 2 others like this
itsthebunk

Posted by @itsthebunk, Aug 17, 2011

Thank you! Me too! 🙂 Very sweet thought!

MF76 and dbp like this
apdenver

Posted by @apdenver, Aug 17, 2011

Great essay, very inspiring!

MF76, dbp, bobbichiko and 1 others like this
itsthebunk

Posted by @itsthebunk, Aug 17, 2011

Thank you!

dbp likes this
springbreeze

Posted by @springbreeze, Aug 17, 2011

Liza...Best of luck with this new path. I think you will benefit many. I loved your essay, clear, passionate and inspiring!

MF76, dbp, bobbichiko and 1 others like this
itsthebunk

Posted by @itsthebunk, Aug 17, 2011

Thanks so much for the support!

dbp likes this
tambre

Posted by @tambre, Aug 17, 2011

You have my vote. Wishing you all the best and will share the talkabouthealth.com post on my FB page to help get more likes. Being a bridge to social media use for cancer survivors to be engaged, informed and inspired is a great calling! Good luck!

MF76, dbp, bobbichiko and 2 others like this
itsthebunk

Posted by @itsthebunk, Aug 17, 2011

Thank you!

dbp likes this
stephanie1

Posted by @stephanie1, Aug 17, 2011

Thank you for introducing me to all of this. It will change my life. Loved your article!
Stephanie

MF76, dbp, bobbichiko and 2 others like this
itsthebunk

Posted by @itsthebunk, Aug 17, 2011

Thank you so much!!

dbp likes this
akroundtree

Posted by @akroundtree, Aug 17, 2011

I know Liza from Twitter chats--#hcsm in particular. But I didn't know all of the details of her personal narrative until now. Really moving and inspirational. She is well positioned to be a powerful patient advocate and agent of change.

MF76, dbp, bobbichiko and 2 others like this
itsthebunk

Posted by @itsthebunk, Aug 17, 2011

Thank you so much!!

dbp likes this
dbp

Posted by @dbp, Aug 18, 2011

Wonderful endorsement. She has my vote too.

MF76 and itsthebunk like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you!!

drghaheri

Posted by @drghaheri, Aug 18, 2011

I must concur with what I've read above. This essay doesn't quite capture how articulate and passionate she is. I find her contributions to our #hcsm chats very helpful, as it adds to the patient perspective to an often doctor-centric discussion.

The easiest way to describe Liza is that she cares. It comes out in her tweets and how she interacts with others. We need ambassadors like her as health care evolves over the next 10 years, and I obviously think she'd be an amazing choice.

MF76, dbp, bobbichiko and 2 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

I am speechless at your kind words. Thank you so much.

MF76 and dbp like this
dbp

Posted by @dbp, Aug 18, 2011

I agree, she sounds like she'd be an amazing ambassador. We need more people like her, especially in cases of such serious illnesses.

MF76, dbp, itsthebunk like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you so much!

drattai

Posted by @drattai, Aug 18, 2011

What a great post and I can vouch for the fact that through your use of social media, you are reaching, touching, and helping a tremendous number of people. Good luck in obtaining the scholarship - you can only get better and more valuable to the on-line community with additional guidance and support!

WillB, AmyP, MF76 and 4 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you!!

dbp likes this
dbp

Posted by @dbp, Aug 18, 2011

I am impressed by the doctors giving kudos to Liza.

WillB, MF76, dbp and 1 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you!

willb

Posted by @willb, Aug 18, 2011

Liza is amazing. I have seen her go through so much and am happy to see her recognized for her contributions. I know she is just getting started and will go on to help many others.

itsthebunk likes this
chickenlady

Posted by @chickenlady, Aug 18, 2011

You are an inspiration to all who know you and you would be an excellent representative for so many people who face this illness and feel lost. Good luck!!!

MF76, dbp, bobbichiko and 2 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you! I happen to know you do the same and more for the Celiac Disease community. Very inpsiring!

WillB, AmyP, dbp and 1 others like this
valeriesimon

Posted by @valeriesimon, Aug 18, 2011

Liza, I know you are going to make a tremendous difference... it's very inspiring to watch how you are using your experience with this frightening disease and talents using social media for communications to help others. You have my vote... and utmost respect/support!, Best, Valerie

WillB, AmyP, MF76 and 4 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you so much, Valerie!

dbp likes this
mjones

Posted by @mjones, Aug 18, 2011

Wonderful essay! I met Liza on twitter last year and since met in person. She is an amazing and inspirational patient advocate and survivor and would be a perfect patient representative at the conference. I will support her in all of her endeavors!

WillB, AmyP, MF76 and 3 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you Murray!

dbp likes this
mfisch

Posted by @mfisch, Aug 18, 2011

You essay is truly inspiring. Your generous heart, positive energy, and creativity shine through! I enjoy following you on twitter, and wish you the very best.

AmyP, MF76, dbp and 3 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you! I'm grateful for all the wonderful support!!

dbp, bobbichiko, mfisch like this
jkj

Posted by @jkj, Aug 18, 2011

I met Liza at C4YW where she was friendly and a delight to meet. Since then I've watched her share her adventures and journey through breast cancer. She has been an inspiration to all of us. Her freedom to share her experiences is invaluable to breast cancer community.

AmyP, dbp, bobbichiko and 1 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you so much!!

dbp and bobbichiko like this
bobbichiko

Posted by @bobbichiko, Aug 18, 2011

This is very inspiring. I know you are already making a difference and I hope you will get a scholarship. You will be able to help so many more people. Good luck!

AmyP, MF76, dbp and 1 others like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you!! I hope it all works out that way!

dbp likes this
dbp

Posted by @dbp, Aug 18, 2011

You have my vote. Best of luck!

itsthebunk and MF76 like this
itsthebunk

Posted by @itsthebunk, Aug 18, 2011

Thank you!

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