Living Bold, Defying Expectations

John McManamy Health Guide
  • Last week, I mentioned that HealthCentral is sponsoring a Live Bold/Live Now event. This involves submitting a photo, together with a short essay that illustrates, essentially, how we have taken our lives into our own hands and the hell with what everyone else thinks.


    Okay, I am being very liberal in my interpretation, here, but you know what I mean. We come down with a chronic medical condition, and society expects one of two things of us: We’re either just supposed to fold up and die or else we’re expected to shake off our complaint and basically just shut up about it.


    No in between.

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    It never seems to occur to the rest of the world that chronic conditions don’t just go away and that we have to be extremely creative - not to mention courageous - in living with them. Sometimes, just getting out of bed in the morning is a major achievement.


    My little story involves my accepting the fact that I never was going to be normal, and the choices I made in coming to terms with being myself.


    The Live Bold/Live Now event has been going for about a week. So far, we have about 20 entrants, and their stories make compelling reading. We hear from Ashleyjane, who strives “to be sick, but not sickly.” Ashleyjane lives with systemic lupus, fibromyalgia, and postural orthostatic tachycardia syndrome. Her photo shows her in the outdoors, breathing in the fresh air.


    Life is about the little things.


    Then we have Lisa, dancing at her own wedding. Her MS and RA resulted in crippling pain and all manner of complications. But, “on our wedding day, all I experienced was sheer joy.”


    Then there is Rebecca, dealing with the intense pain of endometriosis, who has found her happy place in her garden, four of them. We also have Catherine, a breast cancer survivor, who went on to run two marathons in three months. “My life was saved,” she says. “Now it’s my job to make sure it’s worth saving.”


    Kim’s challenge is simply to sing. She experiences hemiphlegic migraines, a particularly debilitating form of migraine headache. Occasionally, conditions permitting, she can sing in church or do karaoke. When she is having a good day, “I can sing even better than before.”


    Some have made a life in speaking out about their condition. Sharon is public about her HIV, and is an active campaigner and educator, both among the general public and with her Native American community. Genia, another HIV advocate, works “to change the minds, hearts, and lives of others.”


    Some are not afraid to seek help from a higher power. Denise, who lives with migraines, finds support through “faith in God.” She believes that her path has shaped her and “made me into the person I am today.”


    After two failed pregnancies, the women in PJ’s conservative Indian society turned on her, and her husband became abusive. She divorced and set to work on obtaining a PhD, which she received in 2011. She credits “the Supreme Power” for giving her the strength ‘to fight all the odds in my life.” 


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    The one constant in the stories I have read so far is that of a singular brand of defiance. The medical condition is not going to to away, and the people around us never fail to amaze us in their ignorance and stupidity and cruelty. You can’t change the things you can’t change. But you can develop an attitude about it.


    I’m reading between the lines, here. The people, I am reading about, after all, come across as graceful and unassuming, and - of all things - grateful. But beneath the humility, beneath the kind words and spirit of acceptance and forgivenes, you sense that moment of realization - right when their bodies and brains have given up on them, right when the world has given up on them - that they are not going to simply lie down and take it anymore.


    The gloves come off, the gauntlet gets thrown.


    As I said, the world at large expects us to either fold up and die or shake off our complaint and shut up about it. Screw that. We have other plans ...




    Check out the Live Bold/Live Now stories here. You can also enter the event on the same page. We are all in this together. Please do not hesitate to tell your story. 

Published On: June 21, 2014