Medical Zebras

Today I read an article on BBC News about a young woman who competes in Beauty Pageants with a rare genetic connective tissue condition known as Ehlers-Danlos syndrome (EDS). An article highlighting a beauty queen with a 25 inch scar down her fused spine was worth a read. This young woman, Victoria Graham, started a charitable organization called “The Medical Zebra Network.” Why?

She explains the network’s name: “In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ‘When you hear hoofbeats, think of horses not zebras.'”So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ‘medical zebras’.

“So we say, ‘Think zebras, because zebras do exist’.”- BBC NEWS

I looked up the authenticity of the history lesson. BBC and she are correct. This was a medical school metaphor. The picture under this portion of the article shows her flexing her bicep with a hefty pick line inserted into her arm. I smiled. For those who don’t know what a pick line is think an IV but an internal IV threaded into your artery, usually with the entry point in your bicep area. This allows direct intravenous access to your artery.

Victoria transferred colleges hoping to find a program that exercised better flexibility and understanding around her medical treatment. She discussed the sad reality of loosing friends “Maybe my illness is something they can’t deal with or put up with,” she says. “I don’t know what the reason is,” or “She also describes having relationships with boyfriends suffer.” God bless she and her family as they navigate the ups and downs of their unique condition.

My best friends and I joke about how doctors should always start with the most bizarre and unlikely diagnosis and work their way down. We aren’t a medical horse diagnosis kind of family but a medical zebra kind of family. Medical Zebras tend to be great people but intimidating too. These people deal daily, hour by hour, with the reality most people avoid daily, hour by hour . . . mortality and suffering.

Like Victoria I have lost friends or acquaintances that couldn’t “deal with” or “put up” with my conditions or treatments. When you’re dealing with intense physical suffering, the emotional and mental slap of having “friends” bail adds that much more to everything. It hurts like heck, but I learned it’s less about myself and more about them. In the end, the situation becomes an opportunity for practicing intense forgiveness and healthy boundaries.

Like Victoria and others with unique medical challenges, my intimate relationships with boyfriends and male interests have “suffered.” There are NO words to describe the experience of having a practicing Catholic Christian man essentially abusing you because of their personal extreme selfishness and issues while blaming your health situation. May God have mercy on their souls. I now look at these moments as divine mercy, but at the time and even now the pain still twinges. I pray that these “practicing Catholic Christian men” who attend conferences and rallies but cringe at the site of suffering will eventually learn to love their families and children as Christ loved the Church by laying down his life. I hope they don’t abandon ship when times get tough, but instead when times get tough the tough get going.

In the meantime between doctors appointments and treatments, medical zebras oddly have a better grasp on joy than most “healthy” people. Yes, most extraordinary circumstances whether health related or not thins out the herd of friends and loved ones. The Trinity, Mother Mary, and the heavenly host never leaves your side but draw even closer in your most trying moments. Yes, people do need to understand how sick or ill a person can be without the symptoms or visuals being obvious.

For example, a former close friend now acquaintance of mine heard through a mutual friend I was on crutches. A debate ensued if my injury was legitimate. A few days later I showed up to a choir concert on crutches and wearing tennis shoes with my dress. My former friend goes, “You really are injured. So and So said you were but I didn’t believe him.” I responded, “Do I need to show up in a body cast for you to believe me?”

Enough said for now . . .

 

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