Archive for the ‘Scar’ Category

I Could have Danced all Night

October 27, 2010

TEDMED is a yearly medical conference in San Diego, so attendees must have wondered what was going on when Charity Tillemann-Dick (Who performs under the name Charity Sunshine) walked out and sang for the audience.  TEDMED has an unusual format – every speaker, from the most well-known to the guy you never heard of, gets 18 minutes to make their presentation. This woman could really sing, but her clock was running. Whatever point she was trying to make, she had better get to it.

And that’s when Charity dropped the bomb: “One year ago today, I awoke from a thirty-day coma after receiving a double lung transplant.”

Charity had been diagnosed with idiopathic pulmonary hypertension, a disease that causes the blood vessels in the lung to lose their elasticity and the right side of the heart to enlarge. Doctors told her she would have to give up singing. Charity wasn’t pleased with that option, so she changed doctors. The drug she chose to slow the hypertension down has to be infused 24 hours a day and requires a four and a half pound pump. Charity learned how to hide it under her opera costumes and just kept on going. As expected, her health deteriorated to the point that she needed a transplant.

There was a good chance that a lung transplant would kill her voice, so she asked the doctors to do a special procedure to try to save her vocal cords. The transplant was a hard thing, throwing her into a coma for a full month. But one year ago, Charity woke up, and began to piece her life and her singing career back together.

By now her 18 minutes were drawing to a close. “We need to stop letting disease divorce us from our dreams. We will find that patients don’t just survive, we thrive,” Charity said, and with that she ended her presentation with a very fitting song.

She sang I Could have Danced all Night.

‘These wounds I had on Crispin’s day.’

October 24, 2010

Monday, October 25:  Saint Crispin’s Day


This day is called the feast of Crispian:
He that outlives this day, and comes safe home,
Will stand a tip-toe when the day is named,
And rouse him at the name of Crispian.
He that shall live this day, and see old age,
Will yearly on the vigil feast his neighbours,
And say ‘To-morrow is Saint Crispian:’
Then will he strip his sleeve and show his scars.
And say ‘These wounds I had on Crispin’s day.’
Old men forget: yet all shall be forgot,
But he’ll remember with advantages
What feats he did that day.

– from Henry V by William Shakespeare, 1599

…And say ‘To-morrow is Saint Crispian’

October 24, 2010

If you are a fellow heart surgery Survivor, a Heart Parent, or just want to help rid the world of Congenital Heart Defects, feel free to link to Monday’s post. It will appear very late on the night of Sunday, October 24.

Weighed and Measured

July 18, 2010

Whoa!

A Heart Mom is threatening to go ballistic on someone:

I told my husband what had happened and of course his solution to the problem involved me waving around my giant stick and teaching them a valuable lesson about staring at our small child.  While that approach may have gotten some results, not to mention cause a pretty big scene, it wasn’t one that I felt was appropriate for our children to be witness to.

Good thing she kept her wits about her. Local law enforcement authorities usually don’t take kindly to people waving large sticks in public, no matter what the reason. The point of conflict here – as you may guess – was a group of people who seemed to have nothing better to do than to stare at her Cardiac Kid’s scars. It turned into a real whisper-fest, and even though the child was a bit young to recognize what was happening, Mom saw it. And the steam was coming out of her ears.

“You have been weighed, you have been measured, and you have been found wanting. In what world could you possibly beat me?” – A Knight’s Tale, 2001

The basis for this line is from the scriptures, specifically Daniel 5:27 – Thou art weighed in the balances, and art found wanting. The King wasn’t good enough, so God slammed the door on his kingdom, and that very night the King perished. And that is exactly what was happening here: the local wags had seen the scar on her son’s chest; they had decided that he was…. different, somehow, and that wasn’t a good thing; and they had instantly judged that neither he nor his mom were part of the Cool Crew. Too bad, so sad. And as much as I hate to say it, that’s a fairly common reaction.

The hardest battle a Cardiac Kid has to fight will not happen in an operating room, but rather in their schoolyard playground. Kids aren’t necessarily mean, but they are brutally honest. You don’t ask “What happened to your chest?” or “Why you got to get tired all the time?” and they will stare – they’re children, after all. You sort of understand that this is the way children usually act. And Cardiac Kids have to fight these battles all own their on, just like everyone else. It’s how children learn to interact with other people, and hopefully grow past that stage.

But adults judging little kids? NOW we’ve got a problem.

Bring that behavior here, and I’m just crazy enough to start quoting Shakespeare: “Then will he strip his sleeve and show his scars, and say `These wounds I had on Crispian’s day’…We few, we happy few, we band of brothers (and sisters!), for he who sheds his blood with me shall be my brother.”

You see, no matter what snap judgement you may make of that kid with the scar, we see ourselves as survivors. And no matter what you may think, we weigh out correctly and we measure up.

And this is the story that a good man will teach his son.

Oh no you didn’t!

May 25, 2010

We’ve got serious problems, and we need serious people. This is a time for serious people, and your fifteen minutes are up.” – President Andrew Shepard (Michael Douglas)  The American President (1995)

Some people just make my brain hurt.

Katherine Heigl, star of TV’s Grey’s Anatomy, recently adopted a daughter born in Korea. At first the child was described as a “Special Needs” child but it was later revealed that the baby had a Congenital Heart Defect. Little Naleigh had heart surgery in her homeland before coming to the United States.

Then – during an interview for Harper’s Bazaar – Miss Heigl made not one, but two ill-considered statements about heart defects:

“Her heart is 100 percent fine now. She has a scar, so she won’t be wearing bikinis, which is fine by us.”

Oh my word, where do I start? Obviously Miss Heigl is not a Funky Heart! reader, (Shame on her!) because if she was, she would know that no one with a CHD is “fine” after surgery. A person living with a Congenital Heart Defect has issues that surgery can not correct – even though their heart functions well enough to sustain life, there are still underlying structural defects in the heart itself. These need to be monitored throughout your lifetime.

Her second comment can be interpreted in two different ways. I can find no reason why an 18 month old girl needs to be wearing a bikini, so if that is what she meant, I agree. But Miss Heigl strikes me as someone to who appearance means a lot. She is in a business that places a great value on physical beauty, after all. (“I try, but I’m not nailing the baby fashion. It’s intimidating,” she said later in the interview) I am afraid that Naleigh is going to grow up thinking her heart surgery scar is a mark of shame.

And that is not true. Scars are a mark of battles fought – and won. I have stripped my sleeve and shown you my scars right here on this blog. A woman won’t just show the world her scars, but she sees them in a mirror. And if she is fortunate one day that special someone will ask her why she has a scar. Hopefully at that moment she won’t hold her head in shame, but rather talk about how she won the battle and tamed a monster.