Wednesday, June 20, 2012

The Accidental Health Activist/Advocate

I recently read “Dream New Dreams,” a book by Jai Pausch, who was married to Carnegie Mellon Professor Randy Pausch of “The Last Lecture” fame.  In it, she describes her role as a caregiver, and h0w she never imagined that one day, she would be an activist for pancreatic cancer and an advocate for fellow caregivers, who are often overlooked in the medical system. 

This got me to thinking about my own journey as a health activist and advocate. 

If you would have told me five years ago, that I would be writing a blog, much less a blog about chronic illness, I would have thought you were going bananas.  I didn’t even know what a blog was until I started scouring the Internet, trying to learn more about chronic illness, in general, and lupus and rheumatoid arthritis, in particular.

I’ve always loved to write, but when I started my blog, I never imagined that, not only would it turn into a lifeline between me and other chronically ill people, but it provided me with a captive audience to share my triumphs and tragedies with.

I have always written my blog in an honest and open way, sharing the best and worst experiences I have had as a patient.   

I also have to give a nod to Robin Roberts and her recent announcement on “Good Morning America” that she has been diagnosed with MDS.  I think that for chronically ill people, this is one of our worst nightmares.  That treatment for our primary illnesses could cause permanent damage to our bodies, or worse, new illnesses. 

It was amazing to watch her announcement on air, how she described a pic line.  I think she is another good example of a health activist, who, if you would have asked six years ago, would never have imagined she would be in the position that she is today.  A woman who had cancer, who is now battling the aftereffects of cancer treatment.

I’m pretty sure if she had her way, none of these things would have ever happened to her.  But they have.  And now she is living her life in a new and different way. 

There are many others I can think of that fit this situation.  Bob and Lee Woodruff, becoming activists for traumatic brain injury.  I am sure there are others you can think of, as well.  People who have stood up for causes that they never thought would be their own.

Just as flowers can grow in the most unlikely of places, on the most seemingly infertile ground, places where war, death, and destruction have occurred, activism and advocacy can come from the most unlikely of people, out of situations we never saw coming and weren’t prepared for.  

At least, this is how I view myself getting on the road of advocacy and activism.  

It’s not a road I had previously traveled, not a road I had ever expected to travel on.  But we’ve got to make the best of what life throws at us.  It isn’t always easy or fair, but it’s what we’ve got. 

I’m writing this post because my health issues have had a significant impact on what I want to do in the future, the person I want to be.  And because I envision myself finishing graduate school next spring/summer, I am definitely thinking about the future.

Some people believe in callings – according to Merriam Webster, “a strong inner impulse toward a particular course of action especially when accompanied by conviction of divine influence” (   

I do feel, in many ways, that my illnesses, and the circumstances surrounding them, have called me to action.  While I can’t reveal exactly what this means for me yet, and it probably means things I haven’t even conceived of, I am filled with hope because I have a clear direction for the future.  It might not seem clear and direct to every one who views my situation, but ultimately, I know myself the best.

And a lot of this comes from the fact that as chronically ill people, we are usually the least able (because of time, energy, etc.) to advocate for ourselves.  And yet, we all know that if we don’t advocate for ourselves, no one else will. 

It is at this intersection of can’t and must that I often find myself. 

I think the bottom line is whether you are a caregiver, or a chronically ill person, yourself, activism and advocacy are not easy.  They take work.  They take perseverance.  They take heart.  And they take the belief, that deep down, what you are doing in right, good, and necessary. 
(And I apologize.  This has been one of my longest non-blogging spells that I have had in a long time.  I’ve been busy teaching a spring class, which just ended, meeting my boyfriend’s dad and*his dad's* girlfriend, and other non-health related matters). 

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