Chronic Pain Collateral: Hanna Shae Smith

Hanna Shae Smith is the author of the Facial Pain Research Foundation’s series Facing My Pain and Chronic Pain Collateral. If you are interested in being part of the series, email Hanna at hsmithwriting@gmail.com.

 

As a writer, I’ve learned that one of the paradoxical aspects of this career is that you can often find yourself so immersed in the stories of others that you forget to tell your own. It is not all that different from being related to someone with a severe, chronic illness, because their experience also becomes part of your identity—part of your story. The two are irrevocably interlinked and sometimes one shadows the other. There is no such thing as disparate experience because we are all connected. If you take a moment to stand back and observe the pieces, you’ll find the puzzle makes more sense. 

Throughout the past six years writing for the Facial Pain Research Foundation, I’ve been honored to tell the stories of people diagnosed with trigeminal neuralgia and their families. I guess if I’m asking all of you to be courageous and share your truth, then I should be willing to do the same. So many of you have been vulnerable with me, and I feel that I owe it to you to do the same.

I’d like to tell my story now.

The year before I was born, my father began experiencing symptoms of trigeminal neuralgia. He was not the demographic commonly considered to be at high risk for chronic illness. He was tall, dark, handsome, 22 years old, and military-enlisted. However, the only predictable aspect of life is that it is largely unpredictable and also incredibly fragile: His trigeminal nerve was damaged during a routine wisdom tooth removal. Yet, life happens in the seemingly routine. Often, the most cataclysmic events begin in these spaces we don’t know are liminal until they are past. It’s important to pay attention.

That being said, I don’t know a world without trigeminal neuralgia. My earliest memories were formed too late when the disorder was too progressed, and everything before that I just wonder about when I look at photographs. TN changes a person, and I never met my parents before it changed us all. Maybe, I sometimes consider, I’m sort of lucky in this way because I have no “before” to compare my experiences against. There’s just a sense of acceptance and, when I was a child, a skewed sense of normalcy. In elementary school, I once mortified my friends by drawing a diagram detailing a balloon compression surgery—complete with a massive needle grotesquely sticking out of a man’s skull and everything. Yet, that was my normal life and I drew the diagram to show my friends the surgery we were about to go out of town for. My parents took my older brother and I to all the surgeries, after all. Which reminds me: Anyone with TN knows how isolating it is.

I knew which hospitals had the best cafeteria food. The Kansas City VA hospital had stellar mac n’ cheese back in the early 2000s. There was another that had a playground inside the building, but I don’t remember the name of it now. We went to a lot of hospitals in those days while Dad was given medication after medication, treatment after treatment, surgery after surgery, and went through remission after remission. 

Yes, the wonderful days of remission. I remember those days. When Dad was in remission, everything seemed right in the world and I remember it feeling like the first day of summer break every single time. In fact, we’d treat it like a vacation and go camping or travel somewhere. Dad enjoyed off-roading, so we’d often hit the trails or go down to the river where he’d pull us across the low-water bridge in an inner tube behind an ATV. He’d read us books and make a new addition on the epic fort that was just over the edge of the valley behind The Blue House where we lived. Remission was also like summer break in that it inevitably always ended. You can feel those final moments creeping in. The long, warm days of being like a normal family slipped away. You’d know it was over when the house fell silent.

“Go play downstairs,” Mom would instruct my brother and I in a whisper. “Dad’s trying to sleep.” Trying being the key word. I knew that, if the monster of TN was awake, so was Dad. He was especially exhausted because he worked throughout the duration of his illness. Even in the times when we ate beans and rice every night, I never went to bed hungry and always had a roof over my head.

I learned to separate my dad from TN. Once I hopped up on his lap, not knowing he was having a flare, and he went rigid in excruciating pain. As he saw the tears gathering in my eyes, heartbroken that I had caused him pain, he hugged me close and we sat in silence together. This is how I learned that the most powerful words are spoken in silence. That was my dad—the man who put butterfly clips in my hair before ballet practice and taught me about rally cars. So, I viewed TN in my child’s vantage as a sort of parasitic entity, like the monsters in the fairytales I devoured. I’d look for my dad beyond the monster and, hidden beneath it all, I would find pieces of him. On the days where he was unable to speak or eat food or smile at us, I’ll never forget how Mom said to look at his eyes. “You can tell he’s smiling by the look in his eyes.”

Let’s talk about Mom. Mom had golden hair down to her knees. She possessed a green thumb, rescued and fostered animals, played the dulcimer, and ground her own wheat to make bread. I also experienced her as a very striving person. She had been barely 20 years old and married to my dad for two years before his TN-inducing injury. A lot of her time was spent calling hospitals to discuss new treatments for Dad. Incurable, with limited options, and minimal research on TN—doctors on distant Western coasts were only beginning to make strides into viable options for people like my dad. In their surgical theaters and laboratories, they worked tirelessly, but I didn’t know they existed. They were so far away from the midwestern valley where the Blue Home of my childhood sat concealed beneath the forest canopy. We didn’t have the internet in those days, so Mom just used the landline to seek out options. She also spent her energy on a voracious appetite for learning. The library of books she gathered on all topics underneath the sun included ones dedicated to TN. Literature on trigeminal neuralgia was extremely limited in the late 1990s and early 2000s. However, if there was a resource to be found, it was on her shelf—our shelf. I picked up the books that she left sitting out in the open and so began the rest of my life. Knowledge is power, they say. And when you’re a child growing up in a home where everything feels largely out of your control, you’ll look for answers anywhere you can find it. My parents and brother had their God, I had my books and stories. I also had my empathy and my intuition, something I thought was always just innate to me until I learned that children who grow up in high-stakes environments are often called “old souls” not because they are but because they had to be. 

I see the way my family approached honesty in layered veils of the stages of grief that rotated on and on without end. However, one truth that always stood out was how they discussed Dad’s health with my brother and I. Speaking the truth was necessary: Dad nearly died on multiple occasions before I was 12 years old. From birth, I was face-to-face with some of the most real, raw, and stark realities of what it means to be alive. Once, when I was seven, Dad was starving to death and his pain levels were so high that his quality of life was essentially non-existent. There was a doctor in Florida who had a new treatment, but Dad’s local physician told Mom that he would not survive the drive. The options were: 1) Keep him home and let him die, or 2) bring him to Florida and maybe he’d die trying or maybe he’d live. They took option two, and loaded my brother and I up into the back of our car and hit the road. Sitting in the back seat, we didn’t speak a word as we silently played games, drew pictures with crayons, and read books. My brother and I were always together—we went through everything side-by-side. We still do. Mom drove until she couldn’t anymore and we stopped at a hotel for the night. Intellectually today as an adult who studies and writes about these topics, I understand how action potentials in nerves work and how our psyche interacts with pain. As a child, all I remember was that Dad went into remission overnight during a moment of desperation in the hotel room. The doctor found no clear explanation why. Dad said it was God. I’m just grateful he survived the night.

Back to the point: Rather than hiding illness and death from my brother and I, my parents were honest and Mom conditioned us by not shying away from life’s tough truths. When the kittens she rescued were too sick to survive, I held them on my lap on the drive to the veterinarian for peaceful euthanasia. I now know that talking to children in an age-appropriate way about illness and death, while not a cultural norm, is actually beneficial and important. It’s even more important for children who grow up in TN homes. We are not normal children. No matter how badly my parents wanted to give us a normal childhood, that was largely out of their power. I don’t think they know I know that, or that they know it themselves. It’s true: I grew up quickly—more quickly than I realized in the moment. More quickly than my parents wanted. And while my parents did not want this pain for us, my reality—and the reality of all children of people with trigeminal neuralgia—is that we do suffer in our own ways. TN is capable of numerous types of pain that extends to all family members. No matter how hard a parent tries to hide the pain, the child will still be impacted. However, research on Adverse Childhood Experiences has shown repeatedly that buffering factors such as community care and parental support in the face of childhood adversity can minimize harmful effects across the lifespan, even in the face of extraordinary difficulty. It has also been shown that the presence of even one caring, supportive, loving adult in a child’s life is the singular most important factor that makes all the difference in their ability to navigate that adversity.

TN is in the business of stealing autonomy. So, parents, listen to me: You did not choose to be diagnosed with TN, but it is critical you come to the acceptance that you will not be able to assure an entirely normal childhood for your kids. All the same, you must be honest with your child, and you must not invalidate their pain surrounding this collective loss that comes with diagnosis. We are part of the equation. Additionally, you cannot be the end-all, be all for them. Bring in support for your child—gather trusted adults around them who can provide support. Seek family and individual counseling. You are not meant to parent alone, especially in the face of chronic illness. Don’t do it alone, for your sake and for your children’s sake.

When I was 12 years old, my parents made the decision that it was time to try microvascular decompression surgery. At the time, it was still considered a new operation and, for my dad’s specific case, held a 50-50 chance of success. There was also a high chance that he would not survive the operation. However ,summer break hadn’t happened in a long time and he was physically, mentally, and emotionally depleted to the point of no longer being able to run on empty. Once again, it was a game of choosing the lesser of two evils, and so they chose the surgery. 

I remember Dad’s MVD vividly. My great-grandparents came to look after my siblings and me while we all went to the hospital—it being important that our family was together. I remember the waiting room, the worry etched on my mom’s face, my older brother sitting beside me, and I mostly remember caring for my two-year-old sister and three-month-old brother. Although it was a time marked by numerous emotions, a fierce and burning protective love was the pervasive one for me. It’s something that I’ve never stopped feeling for my siblings—that deep knowingness that, at the end of the day, you value someone else’s life more than your own and you’d choose them every single time without a second thought. I knew my grandparents were there to take care of us, but I felt strongly that I needed to be the one to walk my baby brother up and down the hospital halls and to sit with my sister and read her books in the waiting room. Looking back, I realize that I did not have dreams or goals like other children did at that age. I was not envisioning what my future was going to look like or who I might become. My only goal was to protect and love those kids. I believe this has been my purpose in life. Everything else I’ve done after that has just been a nice touch.

The operation was successful.

Today, my dad is numb on the entire side of his face and has been for 13 years. 

This is the point where we often want to tie a pretty bow on the story and ship it off to the land of happy outcomes. But, this is far from where the story ends. In fact, it’s just the cliffhanger for the sequel. My parents, my siblings, and I lived through trigeminal neuralgia during formative years of our lives—Mom and Dad in their 20s and 30s, my brother and I until we were 12 and 14, and two of my younger siblings during their first few years on Earth. I had two more siblings after them, and they were raised in the sequel where we can’t expect 13 years worth of trauma to simply vanish with a single magic surgery.

The MVD ended the physical pain, but there are many different types of pain that take lifetimes to heal. The sequel happened to each member of my family differently. Those variations are their stories to tell if they choose to, so I will just tell mine—how growing up in a home with TN impacted me. I would like to preface that with the fact that the issues I faced were not all directly correlated with TN. Growing up in a TN home created challenges, traumas, and setbacks while also amplifying situations, intergenerational cycles, and systems that were already in place before TN was an influencing variable. We are dynamic, intersectional beings. TN is an integral part and the focus of this story, but it is only one part.

In the sequel, which spanned years 13-20 of my life, I dealt with trust issues and an immense fear of loss. My therapist believes it’s safe to say this was because of the constant threat of losing a primary caregiver throughout my formative years. Loss, then, is what Mark Wolynn would call my Core Language in his book It Didn’t Start With You. I experienced high-functioning dissociation, anxiety, and depression that went undiagnosed until adulthood. I became an avid people-pleaser, was unable to express true emotion, and lived with a deep sense of constant threat and fear. I have a high score on the Adverse Childhood Experiences scale, which means that I am at significantly higher risk for more than 45 negative health outcomes on a graded dose effect. At my core, I was afraid of being a burden, so I became incredibly emotionally self-sufficient and able to tackle obstacles and solve problems easily. Fending off the many pains of TN, taking care of my siblings, and learning to survive the odds became more important than childhood whims. I know the words for this now: survival mode. I also know what living in survival mode does to the growing nervous system. I still feel it every day in my body. There were people I hurt because I was hurting—namely romantic partners who I pushed away when they got too close for fear that I’d love and lose them. It was easier to push them away than risk that kind of painful loss. 

During that time, however, I also began writing like there was no tomorrow. I released everything onto the page and … it was actually pretty good. 

Award-winning good. 

Land-a-job-right-out-of-high-school good. 

Make-investigative-journalist-in-two-years good. 

Become-an-editor-before-you’re-25 good. 

My career in writing began and I found myself telling the stories of people at both the worst and best moments of their lives. Deeply entrenched in the stories of others, I was able to forget my own. However, trauma doesn’t forget us. And the tricky thing about toxic stress is that your baseline tolerance alters so drastically that sometimes you forget you’re in survival mode. Sometimes you don’t even realize it at all.

It caught up to me. I thought I had gotten through the most difficult parts of my life. Yet, by not confronting my own trauma, I was stuck in a cycle of repeating those worst experiences and living in repeated patterns of behavior. I realized that I had to make a choice. And so I chose to stop fighting and to love those parts of myself that were wounded. I embraced the child still inside of me who was paralyzed with fear. And I learned that the steady, calm knowingness that I was going to be okay—the one that had followed me my entire life—was actually the wisdom of my higher self calling me to face my deepest fears and embrace them. 

As I write this, I’m entering the final year of my 20s and it’s beginning very differently than the first year of my 20s began. These days, I walk hand-in-hand with both grief and gratitude and it feels like breathing air for the first time. I’m on the other side of survival mode—a process that took time, effort, and caused me to come face-to-face with my fear of loss only to realize that sometimes we lose things to make room for what was meant to be ours all along. My body is healing, my nervous system is regulating. I feel happy and peaceful many more days than I don’t—something that once was not true. Sure, these difficulties still persist in one way or another. However, one thing I’ve learned is that, when you’ve had a life like mine, it’s not so much if you experience these feelings, but what you do when you experience them. I learned that there is beauty in humanity—that there are people who love unconditionally and fully. I learned to embrace fear and love regardless, which led me to marrying someone who gently healed my wounds with the safety of his love. I have relationships that are secure and healthy, not based on what they want from me or what I can give them. I have shown my siblings by example that there is life on the other side of survival mode and I created a home filled with love, peace, hope, and grace where they are forever welcome to exist as their authentic selves. I do not fear death or loss or pain because I know that these truths are part of life. To die means we lived. To grieve means we loved. I want to love as much as I can. 

Nietzche said, “He who has a ‘why’ to live for can bear almost any ‘how,’” and Victor Frankl determined that while suffering is certainly not a prerequisite for meaning, its appearance is an opportunity to find a “why” through which we can propel ourselves toward self-transcendence. I wish my family had never gone through the experiences we did—the grief of this is immense and with me every day. Yet, there is nothing I can change about this fact. I can only look at who I am today and know that I would not be living this exact life if I had not found the courage to endure. 

I am here. 

I am breathing. 

So are you. 

This is beautiful and this is enough.

How do I end this story? I can’t really do that effectively, so I just won’t. We are all on a journey and there is no telling what might happen next. Mine is still unfolding and I’m watching the puzzle pieces fall into place. This next phase feels very full circle as I was accepted into a Masters of Counseling program so that I can help others on their healing journeys to find life and hope on the other side of survival mode where they reclaim their narratives. I know it from experience: We carry our stories with us—for better or for worse—yet it is always within our power to decide our narratives.

This is mine.

What’s yours?

 

Hanna Shae Smith is an award-winning journalist with a decade of experience writing for newspapers, magazines, and health organizations. She has a degree in psychology from Arizona State University and is currently enrolled in the ASU Master of Counseling program. She is the managing editor at the behavioral health nonprofit Soaringwords, and has written the Facing My Pain series for the Facial Pain Research Foundation for the past six years. She is the daughter of a person with trigeminal neuralgia, and focuses her writing and studies on Adverse Childhood Experiences, toxic stress mitigation, and intergenerational trauma and healing. Smith is a certified Reiki 1 practitioner, traditional storyteller, and folklorist who lives in Arizona with her spouse and their two adorable cats.