Drums in the Deep

In J. R. R. Tolkien's Lord of the Rings, there is a scene in the Mines of Moria where Frodo and his companions read an account of a battle between Orcs and dwarves, marked by the ominous echo of drumming:

"We have barred the gates ... can hold them long if ... horrible ... suffer ... We cannot get out. We cannot get out. They have taken the Bridge and second hall....We cannot get out. The end comes ... drums, drums in the deep ... They are coming.' 

I often think of this passage when I consider my daughter's erythromelalgia (EM). When Monica was diagnosed with EM, we were relieved. As soon as we left the doctor's office, my husband and I embraced, crying tears of relief. EM is, admittedly, a horrible disease; however, a diagnosis meant that treatment could begin. But the diagnosis can also mean something else--something more sinister, something we are still wrestling with today.

Erythromelalgia can be secondary to another disease. In some cases, it is simply a genetically inherited disorder, but it is often the forerunner to another illness. No one else in our family has EM, and we were told if there is a non-genetic underlying cause it typically takes two to three years for it to appear. That underlying condition can be an illness such as Lupus or various blood cancers.

So my daughter's erythromelalgia feels like the steady beat of an approaching enemy, the precursor to another battle beyond the burning pain she fights now. At times, a sense of heavy dread settles on me--and the dread seems all the worse because we don't know exactly when this new battle will begin or what we will be fighting. This uncertainty leaves much room for wild, terrible imaginings of further suffering.

But there are three truths that I remind myself of in those hours of dread, in the moments when I tear up, thinking of my little girl suffering more than she does now.

The first truth is captured in the John Michael Talbot song, "Be Not Afraid." A line in the chorus reads, "Be not afraid. I go before you always." My mother once told me that we fear the future because we fail to imagine God there. When I tremble at what my daughter's future might hold, I remind myself that God already knows that future and will be there with us in the midst of it. There's great comfort in that.

The second truth I remind myself of is this: we will have angels of mercy when we face this looming battle. In our journey thus far, we have been showered with kindness and love from doctors, nurses, therapists, family, and friends. We have been carried through the rough patches by the prayers of people all over the world, some of whom we have never met in person. Each new health issue Monica has faced has brought us into contact with extraordinary emotional and physical care. I have no doubt that if and when Monica battles another illness, there will be an army of angels surrounding her.

The third comfort that I hold onto is the truth that every storm will eventually pass. Yes, Monica is still battling her EM and her rhombencephalosynapsis. But each moment of crisis--whether it was a hospitalization or a night of pain--is over. Whatever unknown fight the drums of erythromelalgia might indicate, that crisis will not rule our lives forever. Perhaps each crisis does not pass as quickly as we would like, but it does pass.

Monica has recently developed increased difficulty swallowing. She has never been very good at synchronizing all her muscles to make swallowing easy, but now she has begun gagging and regurgitating food that once was easy for her. I mentioned this new difficulty to her doctor, and all we can do at the moment is wait and observe. The doctor used the same phrase we've heard before: "This could be the beginning of something else."

So there are more drums in the deep, more little hints of pain to come. But whatever does come, we can be sure of this: God will be there when it gets worse, the angels that carried us through the last battle will carry us through the next one, and whatever crisis we may face in the future will not last forever.