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9:05 - 9:15 amSunday, September 27
Plenary Hall
ePatient Ignite! Talk - From Burning Man to the Community Clinic: Decommodifying the Patient Support Network
Plenary Hall
ePatient Ignite! Talk - From Burning Man to the Community Clinic: Decommodifying the Patient Support Network
Medicine X ePatient Scholar

I’ve had some form of COPD, or Chronic Obstructive Pulmonary Disease, since I was first diagnosed with severe asthma before I was a teenager. Back then, in the 1970s, the only home therapy available to treat asthma were theophylline pills, which often took up to two hours to take effect.  

The rescue inhaler hadn’t been invented yet, so when the pills failed, it was off to the Emergency Room for me. The doctors would inject me with a drug called pseudoephedrine, which relieved my blocked airways almost immediately, but would leave me jumpier than a caffeinated cat.  

My childhood asthma has since progressed to borderline severe COPD into my adult life, and I’ve had to adjust accordingly. I can’t carry heavy loads for any distance. I can’t run fast or far. I have to pace myself climbing up stairs. I avoid steep hills on my bike. I take it slow.

On the other hand, I feel very blessed to have a great pulmonologist, who ran me through all the tests that determined the nature and severity of my COPD, and then prescribed all the proper medications that allow me to pretty much lead the life I want to.

I’ve always been the creative problem solving type, probably because I had to be. I have explored just about every avenue to living a better, fuller life with COPD, many of which have nothing directly to do with doctors, clinics or drugs, yet still affect my ability to breathe.

Things like inserting my mattress and pillows in mite-proof casings; ditching the down comforter; pulling the old carpet out of my bedroom; vacuuming frequently; going after mold and mildew; buying an air filter.

I hike with trekking poles, basically to save my knees. But I discovered that with my weight distributed amongst four points of contact, the task of forward motion and balance didn’t fall entirely on my legs, and I could breathe a little easier. Who knew?

I replaced my old mountain bike with a city bike that has tires with a narrow, flat tread, once I learned that the knobby tires on my mountain bike increased rolling resistance, which increased the effort I needed to propel myself, which made it harder for me to breathe.

The next upgrade for the bike is an electric motor, so I can finally conquer the hills of San Francisco!

Partly due to how I’ve managed my COPD so creatively for the last forty-plus years, I was recently invited to join a research team at UCSF/San Francisco General Hospital that is studying the benefits of health coaching for patients with COPD. I am also on the patient advisory board for the study, and an advisor to the health coaches themselves.

My role of coach advisor was not in the original study proposal. I became their advisor when the rest of the study team felt that the coaches could benefit from the feedback gained from my many years as a volunteer first responder, mediator, and peer counselor at the annual Burning Man art and music festival in the Nevada desert.

After a near-lifetime of struggle against this constant threat to my life called COPD, it was a pretty natural fit for me to apply my problem solving skills to the Burning Man festival. I went to my first Burning Man in 2001, and two years later, I joined the Black Rock Rangers, a volunteer group of festival participants who are trained as community ambassadors and first responders.

As a Ranger, I look out for the general safety of participants, and help them find a way to their own best solutions to the varied issues that might face them. I might look for a lost child, or help a participant find a particular service that they need. I might mediate a noise dispute between camp neighbors, or I might provide a quiet space for an overwhelmed participant. Or, I might just point to where the nearest porta-pottie is.

As a COPD patient advocate, I draw my inspiration from the tremendous compassion and support that I experience as a Black Rock Ranger helping others at Burning Man. I’ve learned, first hand, that human relationships are the most important transactions that should take place, not just in Black Rock City, but in every city, everywhere.

I’d like to pull that spirit of care and support out of the Black Rock Desert and find a way to recreate it in an urban community setting.

But such a relationship-centered ethos is difficult, if not impossible, in an environment in which our relationships to one another are primarily defined by the exchange of money in return for goods and services. Health care is caught up in the same exchange loop as every other service, and the health of the people suffers because of it.

As an e-patient, I see the opportunity to drop on the Medicine X community the idea that so much good can come from the decommodification of health care and community support.

In the same way that my COPD coaches serve their patients, and I serve my Burning Man community as a Black Rock Ranger, the knowledge, skills and talents, the social capital that we have built up within our hearts, in our minds and in our hands is an untapped resource that we can utilize to improve the health of communities everywhere.

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