Hope

From Part One: Life

By Emily Dickinson

HOPE is the thing with feathers           

That perches in the soul,           

And sings the tune without the words,           

And never stops at all,           

 

And sweetest in the gale is heard;                   

And sore must be the storm           

That could abash the little bird           

That kept so many warm.           

 

I’ve heard it in the chillest land,           

And on the strangest sea;                   

Yet, never, in extremity,           

It asked a crumb of me.

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When dealing with a stubbornly elusive disease that has no name and no seeming boundaries, there are moments when a person doubts her own strength and fortitude. Can I really get up and do this again tomorrow? Am I ready for the next symptom to emerge, whatever it may be? But as night turns to day and my own little chickadees begin chirping for breakfast, as sure as the rising sun, my feet find the floor, my hands find the skillet, and I begin another day as Mom. I manage to get up, get dressed, and do what needs to be done. I am not a strong person. I am not especially resilient. Even so, I still manage the day to day, while continually searching for meaning, reason, and answers.  Honestly, there are times when I don’t know how or even why I do it, but I still do.

And then, there are days like Friday. I went to an appointment with Doctor #7, only to be told that the latest round of bazillions of expensive tests reveal that I am the healthiest 32-year-old woman on the planet. Even as she’s telling me this, she and The Hubby are watching hives forming across my chest, which I can’t see.  I’m running a low-grade fever, and I can barely muster the energy to complete my thoughts verbally. How can any of this make sense? She tells me that she isn’t giving up, and I shouldn’t either. She’s going to find a doctor who can figure this out (which she assures me will not happen in New Mexico), and asks me to schedule an appointment in three months. Three months, really? Okay. I can do this for three more months. I guess.

The Hubby took me out to lunch to process the appointment. She assured me that I do not have cancer. There is absolutely no way that my labs could be that perfect if I had cancer. I have something to celebrate the day after my 32^nd birthday. I go home, pour a glass of wine, and get the table ready for dinner.

At 6 pm (on a Friday), the phone rings and it is Dr. #7. She’s found a study that she wants me to participate in at the National Institutes of Health. [sorry, this is a bit technical but important.]   They’re studying physical urticaria. Urticaria is a fancy term for hives, and physical urticaria describes hives caused by external stimuli (touch, cold, exercise, etc.). The study began to investigate a disease called Familial Cold Auto-inflammatory Syndrome (FCAS). FCAS involves an auto-inflammatory response that causes fever, fatigue, joint and eye pain following urticaria caused by exposure to cold. They’ve isolated a gene mutation that causes FCAS, and the protein that is resultantly over-produced. There is a medication that can stop this overproduction and prevent the auto-inflammatory response. They’re trying to discern whether this same gene mutation is also responsible for other types of physical urticaria. If so, this medication should prevent the symptoms.

I am truly stunned. I had begun the weekend coming to terms with yet another fruitless round of lab results and three more months of waiting without a diagnosis, this time without so much as another test to run or an idea of what to do next. A few hours later, I am looking at a list of symptoms that closely mirror mine and an eager team of researchers who are seeking out people just like me.  If I am accepted into the study, all of the testing conducted by the researchers will be free of charge, and I will receive recommendations for treatment from the most avant garde researchers in the United States.

This is the thing with feathers that perches in the soul. This is the thing that lifts me up when I doubt my strength. This is hope. It is not resiliency, strength, or fearlessness that propels me through difficult moments. Hope is the beacon that wakes me in the morning and reminds me that I’ve been gifted another day to live and a beautiful family eager to share my future. 

There are still many unkowns. It is quite possible that this path leads to yet another dead end, but I’ve been reminded that there are always new paths to try, even if no one knows about them yet. Hope is the thing that leads pioneers into the unknown. Though I’ve been a reluctant pioneer in this voyage, I am still heralded on each and every day in my unending quest for better health and clean laundry by that feathered thing called hope. And to think, it’s never asked a crumb of me.