Written Upon The Passing of Peter Pan

Those who give us so much sometimes give up too much of themselves. Hearts must receive to survive or they simply bleed out.

Find what fills your heart, what sustains you. Return to it again & again. Turn away from what drains you. You deserve a whole heart.

If you carry a whole heart, seek out those who do not in order to help them. Have the patience to hold another's heart — mindfully.

So much of depression is not sadness. It is emptiness. It is numbness. And self-destruction so often is an attempt to feel anything at all.

Do not think that depression must present itself through tears. It is a chameleon-like beast, hiding in plain sight.

To "struggle" with chronic depression is real as it never ever leaves. It lives with us — sometimes in a cage & sometimes in our chest.

The beast can be tamed. It is DAMNED HARD WORK to do & no one can do it for you. It will be terrifying. It will be worth it.

Once you have the tools to tame depression, you can develop the skills. These skills never will leave you; you can rely on them to save you.

Depression is cunning, almost comfortable for its familiarity. Change — even good change — is threatening because it is new.

If we open ourselves to the possibility of happiness, we run the risk of falling into the pit of despair, so we avoid feeling at all.

But joy — JOY! — is so luscious, so warm it is worth the risk. FEEL ALL THE FEELINGS! You are capable. You can control the beast.

Ask for help when you need it & if you are not heard ask again. Ask a stranger if you must.

If you need help, just want help, think that maybe help could perhaps be worth investigating — get you some. It's good stuff.

No part of depression equals being lame or being a failure or being weak or being dumb. It's just called being human.

And never ever feel that you are alone. You are not. You may not have found your people just yet. But you're not alone.

Captain James Hook: Prepare to die, Peter Pan!
Peter Banning: To die would be a grand adventure!
Captain James Hook: Death is the only adventure you have left!

"Hook" (1991)

Robin Williams (1951-2014)

Engage With Grace

I have great respect for what Engage with Grace is working to accomplish with The One Slide Project. The concept is simple. Download this one image, share it whenever possible, and begin a dialogue. Connect with Engage with Grace on the organization's website, on Faceook, and on Twitter.

To Flow As Water Does

We are all going to die. Let me repeat that. We are all going to die. So get over it. Or at least do the best you can to get over it because you can't stop it from happening.

The problem is that as a culture we have grown to associate death with an end, with a loss, with grief, with pain. How would our relationship with death change if we could realign our perspective so that death is viewed simply a transition? Death is what is supposed to happen. It is natural. It is—depending on one's spiritual views—just another life event. If we talked about death more, would we be so scared of it?

There is a practice in psychology that involves addressing trauma by talking about it and by allowing the very feelings that one tries so hard to block out to be fully experienced. At first, the very idea of undergoing this process is terrifying and causes anxiety in a patient. A patient typically has spent great amounts of effort avoiding everything related to the trauma—sights, smells, sounds, textures, etc—that he or she has gone tremendously out of his or her way not to come into contact with the feelings originating from the trauma. I equate it to walking around the other side of a building that takes up a full city block in order to avoid a puddle. Patients most likely will not be successful in dealing with their trauma and its lingering emotions if they attempt to change their perspective by running headlong into the puddle. Rather it is a process. First, one must think about not walking around the other side of the building. That in an of itself is a challenge. Then one might decide to examine the puddle from afar. Next the puddle may be approached. Perhaps the patient throws a stone in the puddle. The patient might then sit next to the puddle. Each phase of the process is slow and dutiful, and at any time there may be regression so that the patient again must walk around the other side of the building in order to experience a bit of relief from the intense feelings that arise from dealing with one's puddle. 

This exercise allows the patient to address their fears and emotions with a certain degree of control. Control is the very thing that many trauma victims lost and what they try so vigilantly to maintain post-trauma as a method of coping. But trying to control everything that goes on around us is exhausting. Patients may seem stressed, hyper-critical, and unreasonable, but all they are really trying to do is protect themselves from being hurt again. Fear is the motivation. Fear is what must be quieted. 

Like trauma victims fear losing control and being subjected to reminders of their trauma or a subsequent trauma, we fear death because we can not control it. We try to. We hang on so tightly that we strangle our own lives, and when the time comes, deathbed wishes tend not to be that we were more punctual, or had the oil changed more often, or cleaned the bathroom tile grout more throughly. The regrets are that we did not live more, love more, laugh more. 

And so we must learn to let go. We must learn to control only that which we can control and which is worth controlling, and let the rest be as it will. We must relax, accept, and move with the fluidity of life like a leaf floating on the surface of a rushing stream. We will be swept along, we will reach eddies and be trapped by twigs, we will sink, and we will rise, yet we will still be a leaf. And when our leaf finally settles in its resting place, it's return to the earth will nourish new life, and so the cycle continues. 

As we accept our condition of impermanence and allow ourselves to move with the flow, we may still exercise good judgment to make preparations that will ease the lives of those around us at the time of our passing. Such is the role of advanced directives, which spell out an individual's wishes for end of life care in the event that the individual can not speak for him or herself. Rather than leave family members, friends, and caregivers wondering what one's wishes might be, one can have a say and help alleviate some of the doubt and stress of decision making. To issue an advance directive is to give the gift of peace of mind. For those who struggle with a desire to control life and death, writing advanced directives is the closest that one can come. Directives are not simply wills that divide personal belongings. Advance directives relate to all documents regarding the end of life. Directives allow one to say whether he or she desires life prolonging measures, whether measures should be taken for two weeks or two years, whether one wishes to donate organs, how one wishes to have his or her body put to rest, as well as how one wishes financial and property issues be handled. 

Those whose end of life wishes may be considered unique or those who already know that their wishes are not in line with their family's wishes are particularly encouraged to pursue advance directives. For example, I have determined that I want a green burial—one without embalming fluids that will allow me to decompose naturally in a green cemetery where coffins are made of natural materials or bodies are buried only in a shroud. My advance directive outlines this wish, as well as notes my desired cemetery, my casket of choice should one be required, my pall bearers, and my wishes for visitation and burial ceremonies—there will be punch and pie and pierogi. I update the document, which is a simple form that I keep on my computer, every year or so and have shared it with my husband and parents. My directive documents are not legal documents because I have discussed my desires with my family. My family is supportive of my decisions. Those who may not have this kind of support will want to ensure their documents are legally binding—not to sue from the grave, but for peace of mind. 

Evaluating one's own final wishes can be an extremely uncomfortable task. Consequently, my recommendation is to think about final wishes before one needs to think about final wishes. Although the questions often are deep and emotional ones, one is essentially writing an agreement—though is it easier for one to change his or her mind about whether to play Eric Clapton or B.B. King at the service than it is to get out of a cell phone contract. Families may wish to make writing advance directives a group effort to be approached with love and light and laughter. The fact of the matter is that the majority of people are afraid of the same things, which means that no one is actually alone in their fears. Like the trauma victim working through the therapeutic process, talking about fears takes away some of their power. 

Caring Connections, a program of the National Hospice and Palliative Care Engagement Organization, provides a wonderful set of resources for creating advance directives including state specific directives and information about starting a discussion with loved ones about advance directives and end of life issues. (To access these resources, visit this link.) Before beginning such a conversation, one should read Dr. Ann Becker Shutte's "Five Steps for More Compassionate Listening" to help facilitate a productive and caring dialogue. Shutte is a licensed counseling psychologist who also leads a weekly Twitter chat about end of life issues at 10 p.m. EST on Wednesdays. To participate, follow the #EOLchat tag. Make it a goal to have discussed matters with your loved ones—or better yet have written your own advance directives—by April 16, 2012, which is National Healthcare Decisions Day and allow yourself to spend your energy living instead of trying worrying about dying.  

Disease Envy

I am so very jealous. I am jealous to the point that I am angry. I am jealous to the point that I scoff in your general direction. I am jealous because you have cancer. Or diabetes. Or rheumatoid arthritis. Or Parkinson's. Or lyme disease. Or just about anything else. I am jealous because you have it and a bazillion other people have it and because you and those bazillion other people have each other. And I feel so very all alone.

Being diagnosed with intimal fibromuscular dysplasia first came as a relief—I got a name for what has been wrong with me. Within days of my diagnosis, I saw a post on the Mayo Clinic discussion boards from a young woman suffering gastrointestinal problems who had passed all GI workups with flying colors and who, despite medication, had uncontrolled blood pressure. The symptoms echoed my own. Another woman named Kari responded that the young woman might want to have her vascular system looked at—a comment with which I completely agreed and found unusual for someone to make. I posted as much and in no time Kari and I exchanged messages and discovered we share the FMD diagnosis. Since then I have made friends online with twelve other FMDers.

Read that again—twelve. Granted, I'm new at this, so I haven't met the other 70 or so people who "like" the FMDSA's Facebook page. Some of those who like the page aren't patients though—they're friends and family members of patients. Using those numbers, FMD patients number fewer than two per state. No, not everyone who has FMD is on Facebook. No, not everyone who has FMD has been diagnosed. But COME THE FRIG ON! We're like some freakish pygmy tribe, and the grand irony is that we'd be jerks to want more tribal members. FMD has no real treatment and no cure. Who would wish that on anyone, even if it meant a new friend? "You have FMD? I have FMD! Let's get sick and die together, yay!"

As even further isolation, I do not have the primary form of FMD. I have the rare version of the rare disease. I've met one other girl who has it. She lives in South Africa. I've asked around the FMD community looking for other IFMD patients. So far—no luck. It's me and my new South African sister. She is younger than I am and is scheduled for a desperately needed surgery to bypass her abdominal arteries—the same surgery that I had at age 25—and with the same doctor in Cleveland who made my diagnosis. However, she's traveling to the United States from South Africa, which costs a pretty penny, never mind the surgery itself. If you've got a mind to get involved and help her cause, that would be awesome. I really can't have her going out on me. Do you have any idea how it would feel to be the ONLY person I know with IFMD?

And so I'm jealous. Jealous of all you people with your more common diseases that everyone knows someone who has. Jealous of your theme colors (particularly you breast cancer patients and your pink—really co-opted that one there didn't you?). I'm jealous of your fun runs and baseball theme nights and famous spokespersons. In reality, I get it. The diseases that get all the attention are the ones that have the most likelihood to occur. They're the diseases that people have learned to be afraid of and so great research is done to find their cure and great shows of comradeship and support are made. I get it. Having a more commonly occurring disease is still a potentially devastating experience, and an individual's suffering is made no less simply because a disease is a household name.

However, I am asking you all to do this—please think of the others of us who have a rare disease. Please think of those of us who do not have the awesome numbers and networks and funding and fights for a cure. Support us because so few do. Support us because you've never heard of our disease. Support us because we're not going to send you address labels or a fancy calendar or a t-shirt to wear out jogging. Support us because we're lonely and we're scared—just like everybody else.

Donate to the National Organization for Rare Disorders
Learn about Rare Disease Day

The Bucket List

Next month I will turn 31. My hope is for the gift of a diagnosis.

Upon experiencing a stomach rupture from unclear causes on April 24, I was jolted out of the comfortable lull into which my family and myself had settled in terms of my health. Things had been quiet, perhaps too much so, and it is patently easy for one to forget the seriousness of one's medical condition when not actively in crisis. I myself have near daily reminders be they the fact that I am still (and for all appearances always will be) deprived of the sensations of pain and temperature on my right side; the nystagmus in my left eye that affects my vision and often leads me to close it so that I may better focus; the tremendous bypass scar across my mid-section that traces my ribcage; the adjacent scar from my kidney removal; the random aches and pains and twinges and generalized weakness that begin each day; and now the 11-inch scar that splits my abdomen, curving around the right side of my belly button, which is new enough to still itch and pull each time I stand up. Please note that I do not view these statements as complaints. These are simply statements of fact. They are characterizations of my body, which increasingly seems to have a life of its own independent of my soul. My body does what it wants to, regardless of my intentions for it. It and I have spoken repeatedly about the matter, and while I believe its heart is in the right place (the doctors at least have never given us any reasons to doubt that), it just never can seem to get – and keep — its act together.

The rundown is as follows:

gallbladder removed - 1995
double jaw relocation due to TMJ - 1997
depression and anxiety diagnosis - 1998
unexplained high blood pressure begins - 2001
renal artery stenosis and celiac and mesenteric artery occlusion found - 2004
triple bypass for renal, celiac, and meseneric arteries performed - 2005
hardware from jaw relocation surgery removed due to infection - 2007
transient ischemic attack/stroke - 2008
bypass fails - 2008
left kidney removed due to loss of blood flow and subsequent failure - 2009
discovery of and coiling of three of four brain aneurysms - 2009
stomach rupture (unknown cause) with emergency exploratory surgery - 2011

* list discludes additional diagnostic procedures including CT, MRA/MRI, arteriograms, renin sampling, renal duplex sonograms, barium swallow, endoscopy, and buckets of blood taken for testing

Despite this rather extensive medical history and care from highly-qualified doctors, I have remained undiagnosed. There were theories. One from 2005 pointed to Takayatsu's Arteritis, an autoimmune type, progressive, and incurable vascular disease. Pathological examination of a sample of my artery taken during bypass surgery negated this theory, as no signs of inflammation — a hallmark of the disease - were found. As the years progressed the best we could get was "something like fibromuscular dysplasia." In short, the disease was first discovered in 1938; however, not much has been learned about it since. It is a vascular disease that most commonly affects the renal arteries, and in its primary form, the affected artery is characterized by a string of beads appearance. The result is a reduction in blood flow that, depending on severity, can result in organ failure. The second most common artery affected is the carotid artery, which supplies the brain with blood. No one knows what causes fibromuscular dysplasia (FMD for short). There is no cure, and there is no specific treatment — rather there is management of symptoms, which tend to occur seemingly randomly and include high blood pressure, kidney failure, ringing and/or swooshing in the ears, vertigo, headache, transient ischemic attack, stroke, Horner's syndrome, neck pain, and artery dissection. I have had ten of those eleven symptoms. The eleventh, the artery dissection, is missing only because we do not know exactly what caused my stroke. However, my arteries do not have FMD's signature string of beads appearance, which means that if I do have FMD, it is a rare version of it. The likelihood is that it is the intimal FMD variety. Intimal FMD is characterized by a long, smooth narrowing of the artery.

While in for a routine checkup at Bowman-Gray/Baptist Hospital in Winston-Salem, I discussed with my doctor my recent stomach rupture and how we were unsure of its cause. I brought up that I had been looking into FMD again, how it seemed like such a fit for my case, and how the Cleveland Clinic had a specialized FMD team. The team is one of five in the nation focusing on the disease. My doctor fully endorsed the idea, saying that if I hadn't wanted to pursue treatment there, that she would have wanted to start more testing at Bowman-Gray to see what else we could find out given the stomach rupture. With her blessing (and referral), I have requested an appointment at the Cleveland Clinic and am waiting to hear from schedulers as to when I can be seen. As an added bonus, my doctor at Bowman-Gray sent me home with a stack of medical records and surgical narratives to have on hand. I am a person who functions much better when I have detailed information no matter what the situation, and to be given in-depth information to read about myself was a thrill. I pored over the records and absorbed as much as I could, of course having to look up several medical terms. Two phrases of particular interest were rather amusing in their honesty: "findings are considered not specifically diagnostic" and "difficult to explain." That's the thing about FMD. It is hard to diagnose and it is difficult to explain since doctors know so little. By going to the Cleveland Clinic, I will be in the care of the few doctors who know the most of what there is to know about FMD and will finally feel like less of a medical and more of a diagnosed patient who can possibly serve as a research link to help discover more about the disease. The research these doctors are doing is in my Bowman-Gray doctor's own words "cutting-edge." It is an incredibly exciting time in life as a patient.

However, what you may have already read between the lines is that the effects of FMD can be quite serious. FMD in and of itself will not lead to death, though strokes, artery dissection, and organ failure very well can. The median age for FMD patients was last reported at 50. A median is not an average. It is a middle number, and well, it's the middle number between 0 and 100. I could live to be annoyingly old — or not. Such diseases often prompt a lot of dwelling on the "or not" part of living. The simple fact of that matter, which is also something we tend to forget, is that any one of us has the opportunity to become "or not" at every moment of every day. We could slip in the shower. We could be in a car accident. We could have a heart attack. We could be mauled by a wild animal. We could choke on a pretzel. We are very fragile creatures overall. I have long had a pragmatic view of my condition and have tried my best to continue on with my adventures passionately and fearlessly — after the stroke caused me to lose my job, I used my new found free time to enroll in graduate school, which was a challenge for my brain and my body but fed my soul. My studies have ensured that I will never stop learning and allowed me to fulfill a life-long dream of becoming an English teacher. My students fill my heart with joy. I also have reached the point in my writing career that I have risen to be managing editor for a nationally published magazine, a job that allows me to exercise my creative, people, and business skills and gives me a tangible product to show for my efforts. On a more personal level, I am married to a wonderful, patient, stoic man with whom I will celebrate my fifth anniversary in October. We have carved out a life of loving family members, furry four-legged children, a cozy home, and a unfailing dedication to one another.

As of yet, I have no regrets... and I want to keep it that way, which is why, at my husband's urging, I have begun work on a bucket list. My goal is to identify 100 things that I truly want to do before joining the "or nots," whenever that may be. Some of the items on the list are for myself and my husband or other family members. Some of the items are purely for myself. Some items may be placed on the list solely so that I may cross them off as there are things I have already accomplished that are worth recognizing such as having made my parents proud, lived on my own, changed a flat tire by myself, and stood up for myself. The point is that the list is a work in progress, much like myself.

1. Pet a tiger

2. Get more than a magazine article published — preferably a book

3. Write a book

4. Take Travis to London

5. Go horseback riding in Big Sky country.

6. Visit Scandinavia — horseback ride through Sweden and Copenhagen, Denmark

7. Visit Athens, Greece

8. Have a ROCKIN’ wedding anniversary/recommitment

9. Learn to Latin dance — and do it well

10. Learn how to make really awesome Asian dumplings

11. Eat fresh lobster in Maine

12. Effectively tell someone off/stand up for someone in public and in the moment

13. Drive the entire length of the Blue Ridge Parkway

14. Snorkel at Stingray City in Grand Caymans

15. Cruise in and explore the Caribbean

16. Go to the National Cherry Festival in Traverse City, Michigan (July)

17. Go to Whiting, Indiana’s Pierogi Festival (July)

18. Have an extreme spa day – 2+ hour massage, mani, pedi, facial, body scrub

19. Pay for something random for a random deserving person

20. Learn to play the hammered dulcimer

21. Wear an expensive beaded dress for a fancy dinner date and evening out

22. Raise awareness of whatever disease I am finally diagnosed with

23. Participate in research to help with the diagnosis of my disease

24. Help teach other patients to be proactive and involved in their healthcare

25. Ensure our financial security by living debt-free and investing well

26. Finish my master’s degree at UNC-Greensboro

27. Earn the certificate in Multicultural and Transnational Literatures and
the certificate in Teaching English to Speakers of Other Languages from East Carolina University

28. Be the subject of/inspiration for a piece of artwork

29. Landscape the backyard to be more of a place for ourselves and guests to enjoy

30. See the Grand Canyon and stay at Cliff Dwellers Lodge in Lees Ferry – fly fish, ride a donkey into the canyon, stargaze