Letter to the Editor: The Teal Ordeal — Walking on with a Chronic Neurological Disorder

In coordination with the facial pain center at the U of M, we yearn for a cure

Letter to the Editor

She was in her car, I was sitting in the back, my mother in the front talking to her. At first, we didn’t understand what she was saying because it was … a surreal blend, and we couldn’t grasp it well. I don’t think anyone can. She was still laughing, driving as if everything was normal, then why this? Her smile was never concealed behind her face, yet something else was. She was being depicted by a Mona Lisa and Edward Munch’s “The Scream,” if that is an adequate definition in the fine arts basis.

When she has this “sharp pain,” that she described, her smile and her pain concealed behind her face, in front of everyone, even in front of herself, fights a perpetual war. For she had trigeminal neuralgia (TN) and if she let it take over her life, she would not have one. TN is a chronic pain disorder affecting the largest cranial (brain) nerve, and according to the American Association of Neurological Surgeons it is considered “one of the most excruciating pain[s] known to humanity.” This is the devil behind our family friend’s face who is always involved in volunteering and community work. More so, it has no known cure for its atypical type, less common that it’s typical type. It is a rare chronic disorder and affects usually women older than 50. Like in a slap in the face, our neighbor Lakshmi Subramanian aged 36 — isn’t even 50. Oh! Talking about that slap in the face she just received, could’ve triggered her episodes of excruciating pain. Oh no, even a touch to her face, a cool breeze, a hot coffee, cold water, even brushing her teeth would have triggered it as well. It was hard for her to tell, and yet she drove the car, and was on her way to help organize another non-profit.

Her altruistic nature gave her the idea of a walk, to let the people known about this capricious pain and TN. Thus, with support from VTSeva (a nonprofit organization), Mrs. Lakshmi, my mother and I gathered a team of volunteers, organized and brought chief guests, making sure to spread awareness to as much as people possible. This work was for a TN Awareness Walk on August 18th, which brought together around 70 people to learn about TN and how they can help. This was made possible by the efforts of several people and our two honored chief guests, Dr. Andrew Grande (a neurosurgeon), and Dr. Donald Nixdorf (a dentist, division of orofacial pain) who is involved in the, “…non-surgical management of trigeminal neuralgia.” Both are big advocates for TN and from the University of Minnesota. Dr. Grande mentions that, “over the last eight years we’ve developed a facial pain center at the U of M, that has enabled us to connect with the community.” Dr. Nixdorf agrees and states that there is “some stigma associated with chronic pain, where people can’t feel it, they can’t understand it, but now I think society is changing.” Indeed, in this walk we stressed that, kindness, awareness and knowledge matter, while talking and walking around Lake Normandale, Bloomington, MN. This walk is also to make sure that “…the sufferers need our empathy not our sympathy,” says my mother Amutha Muthusamy. With our small teal ribbons stuck on to us as the symbol for TN and wearing teal caps, we walked a successful one, that is with Dr. Andrew Grande and Dr. Donald Nixdorf giving very knowledgeable and beneficial words, in pursuit for awareness. We are hoping to do this again next year with more support, more people, “…more awareness, to spread the kindness,” says Mrs. Lakshmi, who also expresses that, “it is ironic for saying, ‘it doesn’t hurt to smile.’” We cannot do much but rather show consideration towards an ordeal masking the true identity of a human with TN. In coordination with the facial pain center at the U of M, we yearn for a cure, and these doctors are striving toward it, until then we support the people who suffice with this erratic chronic pain disorder — known as trigeminal neuralgia.

This letter to the editor has been lightly edited for style and clarity. 

Aneesh Swaminathan is a freshman at Wayzata High School, Plymouth, MN.