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June 27th, 2012
11:45 AM ET

How becoming a patient can make you stronger

Editor's note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle – injury, illness or other hardship – they tapped their inner strength and found resilience they didn't know they possessed. This week Roxanne Black talks about the social network she started for people dealing with a serious illness.

Those of us who face illness remember the before and after moments: The day the phone rang, or the doctor walked into your hospital room, and it was clear that life as you had known it was about to change. You discover that you have cancer or multiple sclerosis, or that your loved one has been diagnosed with a chronic disease.

You hang up the phone or walk out of the hospital feeling as if your world has been transformed.  It’s not simply fear that makes you so disoriented – it’s because you are in the midst of experiencing a true glimpse of the great preciousness and precariousness of life.

On a daily basis, we tend to be conditioned to live within a limited perception of our consciousness and power. Yet illness manages to help us find ourselves, to free ourselves. It is in the face of suffering that so many of us are thrown into the depths of ourselves and come up bearing treasures of strength, insight and courage we never knew were there.

Falling ill is like joining a private fraternity – one you would never enter voluntarily, but whose membership reveals profound truths that most of us are too busy rushing through our days to consider.  In the midst of everyday life, you are suddenly jolted by your own fallibility and finiteness, by the fact that you are no more durable than the shoes on your mortal feet.

In a culture that manages to cordon off this reality as if it were the special circumstances of others, you perceive all at once that this is your fleeting, precious human life.  And then it’s as if a veil has been ripped from your eyes.

Those you’ve known before are back on the other side of the mountain, in the carefree valley of the healthy - their oblivious days unmarked by the blood tests, biopsies or CAT scans.  No matter how much they try, it’s difficult for them to comprehend what you have seen from your new perspective.

When I first was diagnosed with systemic lupus at the age of 15, I yearned for something specific – to connect with others who knew what I was experiencing.  But I didn’t know where or how to find other people who could relate.  So I started my organization Friends’ Health Connection, in order to create a place where people with illness could find and connect with one another – for friendship and mutual support. 

Through the years I have discovered that this connectedness, this sharing, can be a haven.

Some connections made through Friends' Health last for a long time, sometimes even a lifetime. For example, two young men suffering from brain tumors call each other every morning for support and encouragement. A woman with cystic fibrosis on the east coast bonded with another woman, similarly afflicted, a thousand miles to the west.  Another woman named her baby in honor of her friend.

What is at the root of this deep, essential connection?  It isn’t physical touch – it is something more, something invisible and yet so profound.  It is sharing and connecting.

There’s a theory in science called Bell’s Theorem, which claims that two particles once connected are never separated, that they are stuck together by something called entanglement.  This exists in the real world, but we can’t see it.  Yet I visualize this with each friendship that is made (metaphorically speaking, of course).

During the difficult times we can take comfort in knowing that we are united together in the web of love that exists below the surface.  There is an interconnectedness, an intertwined circuitry among us through which we can find comfort and solace.

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soundoff (47 Responses)
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    Roxanne, congratulations, how nice to see all the great work you're doing back in the media!

    June 29, 2012 at 13:30 | Report abuse | Reply
  2. Caroline

    How true . . .. that from illness you discover who you are. And it does free you, empower you. And it's true – others can sympathize but unless you are actually going through something you really don't fully "get it". How wonderful is the undeniable strength of true networking . . .

    June 29, 2012 at 19:56 | Report abuse | Reply
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  5. Judith Singer

    Dear CNN: your feature story is about an athlete who battled through her lupus to win an Olympic medal. That references a story about a woman who has started an excellent netwide support group. Very inspiring to those who can still do something despite their illnesses. Very depressing to those of us who can't, and very misleading to the vast numbers of the general public who can't understand the difference, and therefore actually harmful to those of us who can't do more than lie in bed 20 hours a day, because we get asked, "If someone can win an Olympic medal with lupus, why can't you [fill in the blank: work, garden, volunteer, write, be more active, get more exercise, etc. etc.] Inspirational stories are good, but they need to be balanced occasionally with stories about what life is like for those of us who can't even take care of the basic necessities for ourselves.

    August 16, 2012 at 14:08 | Report abuse | Reply
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