Saturday, June 26, 2010
I spend my days
With every fiber straining
To hear the sound of
Your voice or catch
The slightest hint
Of your nearness
When darkness arrives
I wrestle through the night
With demons and angels—
Or is that you?
I am never quite sure
In this season of doubt
I am certain of very little,
Only that life without you
April 2010 Poem-A-Day Challenge
Prompt #7: Title = "Until ____"
Wednesday, June 9, 2010
You've kept your
Secrets well hidden
For all this time,
And I admit to thinking
You'd never kiss and tell.
Two years I've waited
To see the color
Of your beauty—
If I've learned anything,
It's that growing takes time
And we only bloom
When we're ready
(April 2010 Poem-A-Day Challenge
Prompt #27: Hopeless or Hopeful)
Friday, June 4, 2010
I have spent the last 8 years searching for a cure or even a diagnosis for the mysterious illness that has invaded my body. Lately I have been wrestling with some important questions: At what point do I call it quits, accept my limitations within this disease, and try to build a life the best I can? When does the cost of this pursuit—the physical and emotional toll as well as the financial repercussions—become greater than the losses I have been dealt by my illness? How do I know if there is any chance for healing or if I am simply chasing after false hope?
It isn't the first time I have faced these questions. They come up every time I reach the end of another treatment regimen, another doctor's expertise, another failed attempt to be well. Most of the time, I am able to put them to rest with a compromise: I decide to put my search on hold for a time, focus on rebalancing my heart and life, and then let my desire to press forward slowly return. The only problem is that these questions are harder to answer each time they resurface.
Over the past few months, I have come to the realization that compromise is no longer an option. I have to make a choice between continuing the pursuit of treatment—and a potential cure—or accepting once for all that this is my life, finding a way to live fully in spite of my limitations.
It seems everyone has an opinion about which path I should take, but it feels as though I am the only one who understands just how much is at stake here. And until recently, not even I could put into words exactly what has made this decision so difficult.
Then I saw something that brought everything into focus. It was a simple TV show that had seemingly nothing to do with my current dilemma. And yet it told my story perfectly.
One of the characters, a trauma surgeon, has a flashback to something that happened during his Tour of Duty in Iraq. He and other medical personnel are moving patients via ground transport when their vehicle is struck by an explosive. Everyone is killed except for him and his commanding officer. The officer, however, is badly wounded. In order to keep his commander alive, the soldier has to keep his hands pressed over the open neck wound to stem the bleeding. They both know that if he lifts his hands for even minute, the officer will die.
Hours pass by. The heat of the day has long since turned into the dark of night. The soldier is convinced that help will come, that they just have to hold on a little longer. But the officer begs the soldier to let him go. They have been waiting too long already. They will not be rescued. Finally the soldier gives in and takes his hands from the wound. The officer dies quickly, just as they both knew he would.
A minute later, a helicopter flies into view. They will be rescued after all. But it is too late. The soldier will never forgive himself for giving up too soon and letting his commander die, just seconds before their deliverance would have come.
And what does this war story have to do with me? Well, simply put, I am the one with my hands pressed over a gaping wound, trying to quell the bleeding and stave off death. The one lying on the ground, struggling for life is Hope. Hope for a cure. Hope for the return of strength. Hope for a day when getting out of bed will not be my greatest accomplishment. Hope for a life no longer ravaged by chronic illness.
This Hope has been badly wounded by year after year of misdiagnosis, inconclusive tests, unsuccessful treatments, puzzled doctors, and increasing symptoms. As I kneel here alone, trying desperately not to let Hope slip through my hands, my eyes constantly search the horizon for any sign of our deliverance—another doctor, another test, another possible diagnosis, another long shot at a cure.
But in my story, Hope does not want me to let him go. Hope begs me to hold on, to believe, to keep waiting for our rescue. And I do. Year after year after year, I do.
Now I am faced with this choice: I can spend my life keeping Hope alive, waiting for a cure to be found. Or I can let Hope die, walk away, and make the best life I can out of what I have left.
It is a life-and-death decision, except both options are a little bit like dying.
On the one hand, if I continue this search for a cure, there is the chance that I will actually find a cure. That means there is a chance for me to be healed. And oh, how I want to be healed! Words are not enough to convey how desperately I long to be well. But it is this Hope for a cure that will always keep me reaching for more—more doctors, more tests, more medications, more chances to find healing. And this constant pursuit requires every last bit of strength I have. It isn't easy keeping a dying Hope alive.
But the real catch is this: No one has promised us deliverance. We may be waiting forever. We may be waiting for nothing.
On the other hand, if I end my search once for all and declare that there is no Hope for a cure, I am free to move forward. I can stop looking for the answer, stop trying to figure out what I am missing, stop begging God to intervene on my behalf. I can use the little strength I have left to live the best life possible, to bring God the most glory, to accomplish God's purposes as much as my limitations will allow. In other words, I am free to live. But this living comes at a high price. It means I walk away from the chance to be healed.
A few months ago, I thought I was ready to make the choice. I thought I was ready to be done with this endless searching for something I may never find. I thought I was ready to walk away and let Hope slip into the night.
Then I stumbled across a book by Marva J. Dawn entitled Being Well When We're Ill: Wholeness and Hope in Spite of Infirmity. It was about naming each of our losses suffered at the hands of chronic illness and finding hope in spite of—and in the midst of—those losses. Essentially, it was about living with chronic illness. It seemed to be exactly what I needed, so I checked it out from the library and started reading.
But I didn't get very far.
Every time I picked up the book and tried to read it, I could only get through a few pages before I would start sobbing uncontrollably. It was as if everything in me was crying out, "No! You can't do this. You can't choose a life of illness. You can't walk away from the chance to be well. You can't let Hope die."
And it's true. I can't.
At least not yet.
For the time being, I have decided to keep Hope alive. But only for a little while. This is our last chance to find a cure. One more doctor, one more round of testing, one more set of treatment protocols.
One more year of waiting for deliverance.
And if that deliverance does not come by this time next year, I am lifting up my hands, letting Hope die, and choosing to live.
Wednesday, June 2, 2010
I am sick.
I have been sick for a long time.
Long enough, in fact, that I cannot recall when it began or what it felt like to be well. I only remember when I first knew something was wrong. It was the Summer of 2002. I was just 20 years old.
Over the past 8 years, I have been seen by countless doctors and specialists. I have forgotten most of their names and many of their faces. What I have not forgotten is the experience of being poked and prodded, sometimes disbelieved, often misunderstood, and always sent home empty handed.
While my medical record is full of diagnoses, most of them reflect symptomatology rather than causality. A few of them are simply the scientific equivalent of "we don't know what's wrong with you." And that, I suppose, is the crux of the matter. I don't know what's wrong. They don't know what's wrong. No one knows what's wrong. But something is decidedly wrong.
The range of symptoms I experience on a daily basis is extensive, growing more so with each passing year. Sometimes I am convinced that the list of symptoms I don't have is shorter than the list of those I do. Most of them, taken individually, are simply frustrating, embarrassing, or painful—sometimes all three. When experienced together, these symptoms make life "interesting," to say the least.
And yet, I would gladly embrace every last one of them if I could only be free from what has permeated every aspect of my life. In medical speak, it's called "chronic fatigue." In layman's terms, it means that I exist in a perpetual state of utter and complete exhaustion. On a scale of 1-10, with 1 being "I'm just a tiny bit tired" and 10 being "I'm so exhausted I can't move," my fatigue varies between 8 and 10 during the course of any given day. Certain things make it worse, of course, but nothing makes it better. And in recent months, I find I am running closer to 10 more often than not.
Out of necessity, I have become an expert in survival mode. After all, I have had 8 years to perfect my skills. In fact, I have become so talented at looking and, for the most part, acting normal that the majority of people don't even know I am sick. Even those who do know sometimes forget that I am not like them, that I cannot do the things a healthy 28-year-old woman can do.
I admit that I have often wished for the chance to exchange my illness for something more obvious and tangible, something I would never have to remind people of because it would be right there in the open for all the world to see. But that isn't really what I want at all. I don't want the whole world to know I am sick. I just want the people I love to know I am sick.
It's not that I am looking for sympathy or even understanding. Those things are great, but they are nothing in comparison to being known. As much as I despise this monster that has stolen my strength, I can't deny that it's a huge part of who I am now. Still, it isn't an easy thing to announce in any conversation: Hi. My name is Courtney, and I have chronic illness.
The response to such a revelation varies widely. Some people express deep compassion for my experience. Some people disbelieve that I am truly sick, choosing instead to declare me "weak" in mind and body. Some people change the subject and never bring it up again, unable to comprehend the foreign language of illness.
Every time I expose this part of myself, I am risking judgment, rejection, misunderstanding, and invalidation. But I keep doing it, one conversation at a time, because I am determined to bring the real me into every relationship I have. I want to be known for who I am—the good and the bad, the easy and the hard, the strength and the weakness. Because I've learned from experience that this knowing and being known will lead to the kind of love and intimacy that makes this life worth living.
So here goes nothing—and everything:
Hi. My name is Courtney, and I have chronic illness.