Hope Precarious

More than 30 years of my life have been lived without chronic illness, and before my health status changed, I didn’t think very deeply about hope. Even through life’s darkest moments, the writer in me just saw “hope” as a four-letter word that felt fantastic and grandiose, like the best fairy tales. After all, its very definition is what the best stories are made of: expectation, desire, trust. 

In the past few years though, hope has become more than just a little word. Before my diagnosis, there was no crystal ball to tell me how my relationship to hope would change—and how it would help me see that it’s both journey and an active choice. 

All the time

Before trigeminal neuralgia (TN), I had a simplistic understanding of pain, forget constant pain. How could I understand that pain could be relentless, intense, and without end? Though I lived with skull-crushing migraines since my adolescence, those weren’t constant. There were days and weeks of relief, which was enough contrast to allow me to view pain as two poles: either you are in pain or you aren’t.

That either-or dynamic is what most people are raised on. We believe that pain is finite, that it will eventually dissolve and our relief is inevitable. That’s why it’s uncomfortable and inconceivable to understand constant pain. Unless you experience it firsthand, even imagining it inflicts such a high degree of discomfort that the notion is denied and rejected. 

In the months after I was diagnosed—and even now—I’m asked about my pain. If that question is posed by the people closest to me, I know they’re asking about the intensity of my pain today. But that’s not what most people are asking: the subtext of their question is whether my pain has improved and whether I’m getting better. 

The basic premise of improvement and getting better doesn’t apply to anyone who lives with chronic pain or chronic illness. Those are the measures of people with a more “normal” health status. Those are their apples while people who live with an irregular health status must live with oranges. 

There is no zero on the pain scale for me; there’s only the numbers five (if I’m lucky) thru 10. I have learned to live in that pain zone and to understand that there are layers to pain, where more than one can coexist side-by-side. 

This is another something I could have ever understood before TN became part of my story. 

What does temporary feel like?

One of the most punishing, recurring experiences I have with TN are the blank seconds between one level of pain and the next. I distinctly remember the first time this happened: a few months after my diagnosis, I was taking an evening walk and I suddenly realized that I wasn’t feeling the pain—not because it wasn’t there, but because it was more dim and distant than what I was getting used to. This lasted just a second or two at most, but it opened up this sense of unreality where I wondered if it had all been a nightmare. 

Had I imagined a pain-filled life? 

But then, I was thunderstruck. That all-too-familiar pain redoubled its efforts and all I could do was turn around, rushing to get home to safety and rest. 

This is what temporary feels like for me. It isn't an extended period of peace, but a mere moment of fantasy, of doubting my negative experience. Then the pain escalated, reminding me of its constancy and how temporary physical relief is now more complicated. 

Dangerous appeal

Temporary physical relief may be difficult, but temporary psychic relief is easier to access. That moment before I understand that the pain wave is just getting ready to crash ashore is where hope lives. 

Hope has a precarious, dangerous appeal for the chronically ill. It offers much-needed mental relief, but it also holds the possibility of disappointment. To want and expect a specific outcome—in this case, no pain or less pain—is powerful, but an undesirable outcome can hurt the spirit more than if the pain stuck to the status quo.

This experience--of whether or not to have faith--is something everyone can relate to. Everyone has walked close to that edge between disappointment and reward: that edge is trust. That is where I believe hope resides. I don’t believe hope is something you just have, a one-time opt-in commitment with a lifetime guarantee. Hope demands effort. And the choice of whether or not to walk with hope is one that is made actively again and again. And again. 

Buddhist monk Thich Nhat Hanh wrote this about hope: "Hope is important, because it can make the present moment less difficult to bear...Hope becomes a kind of obstacle. If you can refrain from hoping, you can bring yourself entirely into the present moment and discover the joy that is already here.” 

I first read those words before my diagnosis and I could appreciate their philosophical value. But after my diagnosis, I instantly understood their practical value. I have not given up on a cure for TN, but I do understand that I may have to live with it for the rest of my life. When I can accept that this is my experience without judgment or resentment, I can live my life. If I’m able to release expectations about my pain and health status, I will be able to really see and celebrate the good in my life—because the good persists despite the pain--which will give me more joy than relying on hope to run the show. 

Reframing hope

I don’t think hope is bad or unrealistic. My experience in the last few years has taught me that like pain, hope isn’t straight-forward. Instead of focusing on the aspect of it that’s about expectation, I want to focus on the part that asks me to practice trust. When I think of hope now, I think of trust, and that has defined the difference between my good days and my bad ones. 

Chronic illness is a crash course in learning to trust one’s self no matter what. 

Trust is what I need to accept, forgive, and love my body. Trust is what I need when I take my medication three times a day or when I take the battery of supplements I take to fortify my overall health. Trust is what I need when I talk or write about chronic illness, engaging with people on a deeply personal experience that I know is often beyond their experience. Trust is what I need when I lament my slower pace or diminished energy levels. Trust is what I need to get through my more intense pain cycles and when I decide to that my body needs more rest. 

This is really about you

I have been writing about the chronic illness experience for more than six months now. Much of it is heartbreaking, but I choose to see how that break down leads to the breakthrough. That choice is because of hope.

Hope is difficult for everyone, not just those of us who live with illness. It’s not a simple either-or entity. It exists in all that open space between two poles, and it is unique to each of us. 

I want you to know that committing to hope is dynamic. It changes daily, not just with the big circumstances of life. 

I want you to know that it is okay if hope hurts. It is okay for that trust to break you down so that you lament over whatever difficulty you’re working through in the present.

I want you to know that though hope can feel precarious, it isn’t delicate. If you allow it, it is as strong and vital as the warrior cells moving throughout your body. It can help you make peace with preconceived notions of what life should be and instead, embrace everything that your life is, pains, medications, and all.