I always say my best friend in this whole world was chosen for me from birth. I grew up with not only my closest confidant, but someone who is, in my opinion, truly the best human out there. As an identical twin to an outstanding sister, being similar in not only appearance, but in interests, personality and even our expression of our differences can look a lot alike. Although uniquely different people, we share so much. Over the years, so many people have asked the both of us what is it like being a twin? And we’ve always answered identically in that, too. “We’ve been twins from the beginning. We know nothing else.” And truly, that is the fact of the matter. Would I ever trade being a twin? Not for anything.
As twins, we may be identical in nearly everything, but I will never be able to fully identify with my twin’s trigeminal neuralgia (TN) that she lives with. Trigeminal neuralgia (TN) is a chronic pain condition affecting the trigeminal nerve in the face that carries sensation to the brain. It causes “extreme, sporadic, sudden burning or shock-like facial pain in the areas of the face where the branches of the nerve are distributed – lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw” by simple actions like brushing your teeth or applying makeup. Even harmless acts like talking, chewing, laughing or smiling can trigger an episode. It is considered a rare disease and as of today, there is no cure.
This has been my best friend from birth’s reality for eight years now. Life with TN is not only tough, but sometimes unbearable. And for all the things I just “get” when it comes to my twin, I can’t understand what this pain—considered by many as one of the most painful conditions known among medical professionals—can possibly feel like.
It’s been nearly a decade, and still, I struggle accepting that fact while standing by helplessly as my sister agonizes through these extreme attacks of pain. As loved ones to TN Warriors, no matter how much we want to understand, we won’t, but we try anyway. I have no clue how many times I have tried to grasp examples from my twin so I could somehow relate to what pain she feels on even the less painful days. Empathizing is part of the twin identity, something we’ve done since we were 5-years-olds receiving our school shots for kindergarten. Without a clue of what was coming, I naively volunteered to go first and burst into little girl tears just at the sight of the needle the doctor held. My twin sister nearby started to bawl, not because she was scared for herself, but because I was afraid. So often I feel that, even as adults, we reverse roles on the worst of pain days. And in spite of or maybe because she understands pain, my twin never dismisses my own when I experience something painful, like one of my occasional migraines and she validates me. She’s something great like that.
Trigeminal neuralgia likes to sneak up and crash the party all the time. A planned movie marathon of a favorite comedy means postponing it mid-through, because laughing was brutal. Or taking a walk outside sometimes means hoodies in late summer to avoid a light breeze that may trigger an attack. All future activities include questions if it’s a pain-free/painless day and then discussing a battle plan of what to do if an attack suddenly occurs. TN means respecting personal space, asking permission before hugging, and countless apologies for making a humorous remark that prompted a laugh. It also means not taking for granted every accomplishment, big or small, and celebrating each one. Because of my twin’s ongoing battle with TN, it has taught me so much about life. I learn to try and not sweat the small stuff and embrace the positive. For example, you don’t need to be bent out of shape when finding your favorite lipstick is out of stock at the drugstore when you know someone that can literally feel chronic pain just by putting some on.
Trigeminal neuralgia looks like a roller coaster, but with the passenger trying their best not to scream no matter how terrifying the ride gets. Sometimes it means a soft food diet for days or even weeks at a time, or periods of anxiety and depression. The fear of when the “Big One” may happen, that one attack so far beyond the others in extreme pain, that it will translate into a trip to the emergency room lingers over you on some days. Sometimes, it’s watching hope disappear after it briefly arrived on the scene with one medication seeming to help curve the pain or diminish the symptoms, then to only suddenly stop helping at all. It’s about facing the likely possibility of an inevitable surgery that may or may not be successful and where to go from there. It can be the days where the inability to enjoy life’s little things or make future life plans causes a bleak outlook. It’s understanding that as supporters, our loved ones will not only experience this, but are battling one of the world’s most painful conditions known. It’s about compassion, patience and trying our best to be present with support.
When I shared that to help spread the word for International Trigeminal Neuralgia Awareness Day on October 7th, I wanted to do so by writing this. I also asked my twin sister what she wants others to know about trigeminal neuralgia and she said this:
“The truth is TN is tough, at times it is super tough, and then there are times it seems unbearably tough. Many people have never heard of it, let alone understand it. If they have heard it, they tend to think that it’s just chronic pain and then ask what number it is on a pain scale, but TN has no scale, because it’s seriously off the charts. TN feels like your face is connected to an electric shock, zapping through your face and head. One of the most things that I hate about trigeminal neuralgia, is knowing that at any moment, at any time, it could strike and you can be in a flare that feels like it will last forever. Just because TN doesn’t have a cure doesn’t mean it isn’t curable. The only reason to me it feels helpless is that the world is withholding hope, because they can figure it out, but the overall resources to take care of this aren’t there. The trigeminal nerve, where TN occurs, is located at the brain stem, which is obviously connected to the brain. Let’s put our brains together and figure this out.”
My best friend may have appeared at birth, but I met my hero when TN became the dragon she continues to slay day after day. It’s through this disease that I have proof warriors are real and TN Warriors are the toughest out there. Their strength and courage is empowering and incredible. To be “TN Tough” is to be a fighter fighting an illness invisible to others. It’s fighting a battle that those of us that haven’t experienced this unique pain will never truly understand. But it’s a real, everyday reality to the warriors and all those who love them. Together, we’re fighting for a cure and we won’t stop until we find one.