Saturday, April 28, 2012

Ways to Fulfill the Obligation of the Cured/Healed

In October 1996 Lance Armstrong was diagnosed with end stage testicular cancer, which had spread to his brain, lungs and abdomen. In 1997, he established the Lance Armstrong Foundation and the yellow bracelet and the marketing concept “Live Strong” were born. Oh and he also went on to win seven Tour de Frances, the famous long distant bicycle race.

In his various presentations, Armstrong explains that when he left the hospital after several months of inpatient treatment, his oncologist Dr. Craig Nichols, "asked me if I wanted to hear about the 'obligation of the cured. I answered yes, since I liked the word cured, but he told me it wasn't about being cured, since he couldn't promise me that. It was about how much you want to share your story."

Armstrong often quotes one of my heroes, whose books and life help to shape what I’ve done with my own career. Albert Schweitzer, the famous Alsace-Lorraine doctor, theologian, missionary and organist who spent a life time working in Africa, wrote the following about why doctors must go to the colonies as a humane duty mandated by the conscience of society. Maybe this quote summarizes best what is meant by the “obligation of the cured.” Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in physical need obtain the same help that once came to him. He no longer belongs to himself alone; he has become the brother of all who suffer. Out of My Life and Thought: An Autobiography by Albert Schweitzer

As I have written before, I tend to use the term heal instead of cure, since ultimately we all die of something. Semantics aside, what is that we can do to help others who are dealing with similar issues to our own? While few of us are in the position of a Lance Armstrong, there is a great deal we can do under the idea of “obligation of the cured.” Some of the best examples I’ve seen where the men and women, living with HIV/AIDS, particularly in the early years of the AIDS epidemic. They formed organizations, fought the FDA, City Hall, and governmental agencies, started “buddy programs” and told their story in public. This was no small task, as there was considerable prejudice against those with this virus.

While this post was prompted by watching Armstrong’s 2011TEDMed presentation, it is inspired by the HIV+ men and women who stood up for themselves and their peers to create a better world for many. One of the important things I learned from them, which is now being supported by research, is that when you give to others, you actually improve your own sense of well-being.

Below are ways to fulfill the “obligation of the cured.”
Be an E-patient and share your data
• Participate in fundraising activities
• Organize a fundraiser. This can be as simple as donating all the money from a yard sale to a condition specific organization or to someone who needs help.
• Work in disease prevention, e.g. help build out door space for people to recreate; take a healthy meal to a neighbor
• Be an advocate for others, help them navigate the system
• Share your story
• Listen to others’ stories
• Support healthcare legislation by calling, e-mailing your state and national representatives.
• Testify about what it’s like to live with your condition.
• Accept speaking engagements so that you can tell your story in a variety of places
• Tell someone you are there for them and mean it
• Do small things, like send encouraging e-mails or notes, to those who may be in treatment and/or are in the middle of a “flair.”
• Live your life
• Wear a ribbon, pin or another item, which lets people know you support others in the healing process
• Identify yourself as a thriver not a victim
• Help to educate others
• Start a support group-in person or on-line
• Participate in a support group
• Offer your skills. Volunteer. Don’t know where help is needed? Try VolunteerMatch
• Donate clothing, cars or other items that can be repurposed and profits given to the non profit of your choice
Donate/recycle durable medical goods and/or unused medications when possible
• If you own a business, offer things like copying and staff resources to help local organizations.
• Grow a row-donate vegetables from your garden to local groups and people that would benefit.

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