31 July 2012

Metaphors of Depression - or - Help. I'm in a hole.

I'm in a hole. I'm in a hole, and I've been in a hole.

A hole is dark. A hole is deep. And given enough time spent in a hole, one begins to find the hole comfortable or, at least, comfortably familiar, which makes crawling out of the hole less appealing. Eyes adjust to the dimness; skin adapts to the dankness. To crawl out of the hole is to be blinded by the light, it is to be overwhelmed.

Living outside the hole is less difficult than crawling out of the hole; yet no part of living in proximity to a hole is easy. One is constantly aware of the hole's holeness. The hole is always there. What varies is how much energy one must expend on not falling in the hole. At times one may simply know that the hole exists. At other times one may walk directly to the rim and say, "Look there's a hole; I will not fall into it." Yet again, one may stumble, crashing in up to one's shoulders, clawing handfuls of dirt and sticks and stones for traction and still be able to find a toe hold and climb out. Spent, emotionally and physically exhausted, one carries on, knowing that next time... next time... it may have rained and the soil that surrounds the hole will have turned into slick mud that, given a foot's sudden slip, will cause one to slide swiftly in, tumbling and turning along the way down, to land with a thud, breathless, sweating, and sore on the hole's floor.

I am in a hole.

The problem with being in a hole is that I am not allowed to be in a hole. And so I, like so many others living in holes, pretend that we are not. We rub sticks together to light a spark. We use our hands to cup silted water from underneath rocks into our mouths. We eat bugs. And we survive. Just barely, we survive. We work, we lead, we live—all from within our hole. Being in a hole, of course, makes it harder, as does continually maintaining the ruse—for ourselves and for others—of not being in a hole.

It is a matter of expectation that forces us to live in this way, this hole dwelling. We expect so much of ourselves, and we bend to the expectations of others. We take on too much because we feel that we should. We never say no because we feel that we shouldn't. And when our burden of expectation grows too great, we still stubbornly refuse to ask for the one thing that we need—help.

Help. It carries both the foulness and usefulness of its other four-lettered cousins. It can be used as a noun, a verb, an adjective, an adverb. It is a command. It is a request. Yet, for all its uses, help is so seemingly impossible a word to utter. To say it exposes a weakness, an inability to do something on one's own. To ask for it is the opposite of self-sufficiency, the opposite of strength, the opposite of leadership. Or at least that's how it feels for me.

Disguise receiving help as delegating duties and perhaps I would be more apt to take it. As it is, I am stubborn. Often I react poorly to offers of help, putting them off for the fear of seeming incapable on my own or, at other times, preferring to exercise control and failing to trust that others will live up to my standards. I know enough to recognize that this methodology is neither extremely efficient or effective. Yet, I also know enough to realize that in this modern, insulated, self-centered world, there are too few out there who are truly willing to offer—no strings attached—help. We've even developed the terminology "professional help" for the group of workers who are paid to do the things that others will not help us do be it care for our loved ones, clean our home, or listen to our weeping heads and hearts.

We must do better. We must reimagine help. We must give what we wish to receive and open ourselves to the possibility of receiving it.

I am in a hole. I am in a hole, but I am willing to bet that someone has a ladder. Once that ladder arrives, it is up to me to climb out. After that, I'll be looking for shovels and strong shoulders to help me fill in the hole so that next time my fall isn't as deep.

23 July 2012

Today's The Day—FMD Awareness Day

On Monday, July 23, fibromuscular dysplasia patients and those who are family members, friends, and healthcare providers to FMD patients are asked to join in a global awareness event to raise the disease's profile and contribute to rare disease research.

Fibromuscular dysplasia (FMD) is a noninflammatory, nonatherosclerotic arterial disease that is most commonly seen in women. It may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Patients may be asymptomatic and remain undiagnosed; however, the disease may cause arterial stenosis, occlusion, aneurysm, and/or dissection. FMD most commonly impacts the renal and carotid arteries, though it has been identified in almost every arterial bed. FMD is considered a rare disease. In the U.S., a disease is defined as rare if it is believed to affect fewer than 200,000 Americans, according to the National Organization of Rare Disorders. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000, states EURORDIS. The disease, like the majority of rare diseases, has no cure.

Participating in FMD Awareness Day is as involved as you want to make it!

1) Wear a necklace or bracelet of red beads. Be sure to explain to others why you are wearing the beads. Use social media (Facebook, Twitter, etc) to share a photo of you wearing your red bead necklace or bracelet and share your story about why you are wearing it — for example, you're a patient, you know someone who is a patient, you support the rare disease community. Tag all Twitter posts with #FMDaware and tag FMD Chat on all Facebook posts. Encourage others to participate! (Why red beads? The primary form of FMD — the medial form — is said to look like a "string of beads" upon angiogram. Red is the color of blood.)

2) Donate your lunch money to rare disease research. Instead of going out for lunch, pack a lunch! Contribute the $5-$15 you would have spent on lunch to the CoRDS Registry at Sanford Health. Simply mail a check to Sanford Health Foundation, 1305 W. 18th Street, Sioux Falls, SD 57117 with Rare Disease Registry on the check's memo line. Encourage others to participate! Make lunch a communal event—eat lunch with a group of friends or co-workers and make sure to share stories of how FMD has impacted participants' lives. Take a photo of your lunch and share it via social media using the tag #FMDaware on Twitter and tagging FMD Chat on Facebook.

3) Contact your local media or hospital public relations team and ask for an opportunity to share your FMD story. Be sure to emphasize the angle of what it means to live with FMD — as a patient, spouse, caregiver, etc. FMD Chat's Readings & Resources page at fmdchat.org links to several helpful articles to explain FMD from a medical standpoint.

4) Contribute to FMD Chat via MedStartr. FMD Chat has until Sept. 7, 2012 to raise $5,000. Every dollar matters!

FMD Awareness Day is solely the creation of FMD Chat. For more information, visit fmdchat.org, facebook.com/fmdchat, or twitter.com/fmdchat.

18 July 2012

From the Patient's Point of View

It is so wonderfully weird to be written about rather than to be the one doing the writing...

I've been in the news lately.

It's a matter of split personality—there's AfternoonNapper, and then there's me. Is she me? Am I her? Can a me be a we?

So many of us are dueling our dichotomy. Our halves are split and split and split again. I am a patient. I am a leader. I am a writer. I am a reader. I am a wife. I am a persona. Regardless, I am continually happy to be able to say — I am — and these two words increasingly become a so much more powerful battle cry compared to the projections of I will or the impermanence of I was.

11 July 2012

The Problem of Being a "Patient"

There is a woman who graduated in the top 10 percent of her high school class and was accepted into the University of North Carolina at Chapel Hill. While still in college, she began her journalism career as a state employee in the public relations department of one of the University of North Carolina's 16 public institutions. Her early duties included writing press releases and assisting in annual report development for one of the university's partner institutions, which was charged with improving teachers' skills across the state.

As a junior in college, the woman joined her university's award-winning newspaper, quickly rising through the ranks from a staff reporter to desk editor. She partnered with other journalism students to facilitate a program in the local middle school, teaching children writing and technology skills to produce a student newspaper. When chosen to serve as the college newspaper's managing editor, the woman elected to stay on an extra summer school semester in order to fulfill her duties. 

After graduating, the woman took a job out of state. The job immediately thrust the young reporter into covering a murder trial in which the accused allegedly stabbed his girlfriend in the face and neck 27 times and subsequently blamed the attack on four young black males. The story was only the first in a long line of violent crimes including other murders, bank robberies, and fatal accidents the woman would write about over the course of the year. 

The woman took another reporting job that would allow her to move back to her home state. She spent the next four years writing in-depth enterprise and news feature stories for a two county area, as well as managing the newspaper's four-county arts and entertainment section. She was promoted to the position of special sections editor, overseeing all editorial and design work for the company's contracted publications. 

When the news company purchased a national magazine, the woman was made associate editor. During her time as associate editor the magazine, the woman went to graduate school, earning her master's degree and teaching at the same time. She was named the magazine's managing editor while still completing her degree and teaching, successfully balancing her responsibilities—in addition to those of being a wife—such that the magazine repeatedly won the title of best niche publication in the state's press association awards, the master's degree was completed on time, and her students overwhelming passed competency exams and developed a greater appreciation for the English language. Today, the bimonthly magazine draws its largest subscriber base from across the Southeast, and in addition to managing the print magazine, the woman also oversees all social media and sponsorships. 

In her spare time, the woman began a community service to assist a segment of the population. The service became internationally successful, and in order to provide service to additional people around the world, the woman partnered with well-known organizations in the United States and Europe. These partnerships and the woman's plans to grow her services led her to incorporate as a nonprofit and pursue IRS recognition as a 501c3 to allow donations to her organization to be tax deductible. She enlisted a group of advisors including a woman with an undergraduate degree in social services and graduate degree in human resources who also oversees her company's financial records; a woman with an undergraduate degree in communications and a graduate degree in liberal studies who also has worked as a pharmaceutical representative and is in charge of regional marketing for a large insurance company; a man with an undergraduate degree in business and graduate degree in accounting; and a man with an undergraduate degree in economics, law degree, and more than 25 years as chief legal counsel. 

How do you feel about that woman? 

Now... pretend that woman is a patient. 

Why must the "patient" label strip one of his or her accomplishments as an individual? 

Now... pretend that woman, who is a patient, is me. 

Patients will be the ones to change the system because patients are—before all else—people.



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