Dad. My Lymphedema Hero.

13 Jun

A major hurdle for anyone with lymphedema is figuring out that you have lymphedema.  Diagnosis can take months, even years, due to a lack of knowledge, research and awareness in the medical community. It took entirely too long for me to get an accurate diagnosis, and it might have taken a lot longer without the help of my dad.

Although I was a grown adult at the time and living in New York City (hours away from my parents), mom and dad were both actively involved in my life and in trying to solve the mystery behind the sudden swelling in my leg.

When I came home for Christmas, four months after my leg first ballooned I still had no diagnosis, no treatment, no plan.  My Dad, however, had not been idle. He had researched my symptoms through his own channels and online. During my visit, he unceremoniously handed me a medical newsletter he had discovered.  In it was a description that matched my symptoms – “a feeling of heaviness and tightness in the affected limb accompanied by achiness.”  I had used similar words to describe how I had felt!  For the first time, these words were coupled with a name – lymphedema.  And another word: incurable.

Lowering myself onto the corner of an ottoman in our living room, I sobbed.  As a 23-year old woman, I could not yet comprehend the permanence of my new medical reality.  All I knew was that, after months of questions, my dad had given me an answer. Not the doctors. Not the hospitals. My dad.

Thank God for Dads.  They don’t sugarcoat.  Dads generally give it to you straight.  While mothers sometimes try to bolster your ego and shield you from life’s ills, fathers feed you heavy doses of reality before lovingly turning you out into the world.

Dad and me after our dance at my wedding in 2005.

Dad and me after our dance at my wedding in 2005.

I realize now that those early life lessons from my dad prepared me to cope with lymphedema in practical and meaningful ways.

A former Washington, D.C. policeman turned lawyer, my dad can smell a phony from a mile away.  And he taught me never to take nonsense from anyone.  This has come in handy during my many visits with doctors who didn’t know or understand about lymphedema.

An enthusiastic card player, my dad taught me you can’t always choose the hand you’ve been dealt, but you can choose how you play the hand.  I try to remember that as I make daily choices living with lymphedema in dignity.

My dad has always been a people person.  He encouraged me to meet as many people as possible and (literally) taught me the meaning of the word networking.  In fact, the information that lead to my diagnosis  came from a contact he made at John Hopkins Hospital in Baltimore.

Although my dad still keeps a Roladex from the stone age, he is not simply a collector of business cards.  He pays it forward.  He’s the type of guy who is always open to lending a hand to a friend, a neighbor or someone in need.

It was in this same spirit that I began Lymphedema Diary.  I intend to help others, who might be as confused or as frightened as I was, by doing whatever I can.

To all the dads who have given their daughter or son the tools to live with, cope with, and thrive with lymphedema, and especially to my dad, Happy Father’s Day.

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3 Responses to “Dad. My Lymphedema Hero.”

  1. Cheryl Vander Linden June 13, 2014 at 10:06 am #

    Beautiful story and tribute to your dad.

  2. currentdescendent June 13, 2014 at 12:34 pm #

    Happy Father’s Day to your father. Yes, doctors can really let you down when you have something like lymphedema.

  3. sfandef@gmail.com June 14, 2014 at 6:35 pm #

    Your Dad rocks! I am 69 years old & developed LE in my compromised arm after a lumpectomy and radiation. It changed my life forever but most of the time I do the best to Play the hand I have been dealt to the best of my ability! My husband is my hero.

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