Courage in Stories

Posted on: March 20th, 2009 by
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Kudos to a recent Oprah show, which profiled four celebrities: Fran Dresher, Scott Hamilton, Magic Johnson, and Montel Williams — each who are or have been grappling with serious medical conditions.

What struck me was these individuals’ candor and willingness to tell their stories. And as they shared their experiences, their faces of celebrity faded, only to be replaced with the face of humanity, gratitude, and humility. I watched, transfixed, and was really shocked at Scott Hamilton’s revelation that he had recently been diagnosed with a brain tumor. He expressed his gratitude for being able to be on this Earth for as long as he has.

In his Fairfield Citizen article, “In the suburbs: Winning the battle at all costs,” Steve Gaynes eloquently describes this particular show. (See the link at the end of this blog.) Like Gaynes, I found Dresher’s words inspiring: “‘Sometimes the best gifts come in the ugliest packages.'”

During my fight against breast cancer, I bore witness to the ugliness of illness. During hours in chemotherapy, I had a lot of time to think and reflect about my life. I was just focused on doing all I could to fight for my life. Cancer survivors would tell me that I might not feel this way now, but one day I might consider this illness a gift.

I was, like, “huh”?

So when hearing the celebrities’ stories on Oprah, I realized that these individuals are speaking from a perspective different than one who is just diagnosed. Their points of view only come after years of reflection about their plights.

Eight years after my diagnosis, I, too, now see that cancer was, indeed, a gift — a gift I didn’t want in the first place — but a gift nonetheless.

Because until I realized what it was really like to be ill, I took life for granted. I now do my best to appreciate each day and know how precious the world and my loved ones are to me. I still throw pity parties and still have to deal with the medical aftermath of my battle.

But I consider myself blessed, humbled, and very human.

http://www.fairfieldcitizenonline.com/columnists/ci_11957992

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Calling the Shots in Your Medical Care

Posted on: March 14th, 2009 by
2

This blog-form column is designed to encourage and inspire people to take the reins of their own medical care. Whether you have advocated for yourself or a loved one, or you want to know tips on how to do so, this blog is for you.

I became a self-advocacy expert when I was diagnosed with breast cancer in January 2001. The road toward health has been fraught with difficulties, setbacks, losses, and suffering. But I am grateful to be alive and loved — and to have a platform through which I can help others.

Every person who is diagnosed with any medical condition is unlucky. In particular, the “C” word in particular still fills people’s hearts with dread.

In some respects, I was especially unlucky when I was diagnosed with breast cancer. At a relatively young age, I suffered through a lumpectomy, chemotherapy and radiation, constant medical testing, a few false alarms, and eventually a preventive double mastectomy with reconstruction. I had also become infertile as a result of the treatments. The ironic part of it all is that I was in excellent shape and fit.

But despite my diagnosis, I was also lucky: my cancer hadn’t spread, I had excellent doctors, and I had the best advocate in the world – myself.

Through self-advocacy, I caught my own breast cancer, prevented a recurrence, and ensured I received top-quality HMO medical care. Before my breast cancer diagnosis, I knew nothing about interacting with doctors and self-advocacy. Sure, I had routine exams, but like most people, I was intimidated by doctors and believed everything they told me. I was not immersed in the medical world. My breast cancer experience would change all that.

In my self-advocacy journey, I have taken actions that were unthinkable to my pre-cancer self: hiring and firing doctors, asserting my needs to medical personnel, scolding difficult medical staff – and in one instance allowing everyone on a train car to know my sordid, private medical details! (Curious? Stay tuned for a future blog.)

This blog will offer tips on how to advocate for your medical needs. Regardless of your condition, situation, prognosis, or ultimate outcome, too much is at stake to allow organizations and medical personnel to intimidate you and fully determine your fate.

You are the one who can call the shots in your own medical care.

During my public speaking engagements, people often ask my advice on how to find the right physician, what to do if they are unhappy with their doctors, or how to handle being dismissed by medical personnel. When others find out I advocated for myself, they want to talk with me about this topic. People need to know how to advocate for themselves.

Although you cannot always control your medical situation, remember this: you are the driver of your medical care, not a passenger.

When it comes to self-advocacy, you call the shots.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.