I remember sticky, little, ice-cream covered hands. I remember dancing in the kitchen to the stereo blasting. I remember the smell of the cool fresh earth after an afternoon rain. I remember getting to lick the bowl and spoon while making chocolate chip cookies. I remember dirt between my toes, freckles on my nose, flowers in my hair and warm summer air. I remember thinking that when I grew up, I wanted to be my mom.

I think it happens to many little girls, their mom is the coolest mom. Well my mom was the coolest, she was my hero. I wanted to have so many gardens just like her, blooming with wildflowers and bursting with color and fragrance in the hot summer. I wanted to fill my windows with crystals that would cause rainbows to dance happily on my walls. I wanted to fill my life with music, blast my stereo with full vigor and sing at the top of my lungs. My mom is an amazing chef, however I only ever requested one food, “Mamma pancakes? Pancakes mamma?”

My mom would have fit in at the University of Vermont very easily. Her skin was tan and freckled from enjoying the sunshine. She wore many band shirts, Indian print shirts and tie dye shirts, which were paired with frayed old jean shorts. Her usual footwear was either dirt cover old sneakers, or none at all. I always wanted to dress like her. I thought my mom was the coolest woman in the world.

In third grade my life changed drastically. My mom kept getting intense headaches, she felt like she was always having a root canal, and the doctors didn’t know why. It took over a year to diagnose my mom with trigeminal neuralgia. What is trigeminal neuralgia, you may ask? Besides a mouthful to say, it is nicknamed the suicide disease. This disease is and excruciating, inescapable pain, and most diagnosed with it, say that they would rather die than live life with the disease. Trigeminal neuralgia is the false firing of a nerve in the brain, which tells the sufferer that they are experiencing pain however there is no real cause, in my mom’s case, she feels like she is constantly having a root canal. The pain doesn’t stop there. From so much chronic suffering, my mom has a never-ceasing headache on top of that.

I have always be empathetic, I feel others feelings, I want to take away everyone’s pain. It was so goddamn hard to see my hero, my mom, sobbing, screaming in pain. She asked to make it go away. She wanted more than anything for it to go away. Some days she wanted to die. I was in 5th grade, I was so young, innocent to the world, and I wanted nothing more to help my mom, but I was powerless. Every year, every birthday wish, every shooting star, every dandelion, I have wished for my mom to get better. It was after a few years of wishing that I realized the harsh realities of life, that not all wishes come true. I realized that no matter how hard you tried to be the best person you could be, if you gave away everything that meant anything to you, if you didn’t lie, if you tried hard in school, nothing mattered, bad things still happen. I once read a quote that ultimately helped me realize this: Everyone complains about being unfair, but in actuality, life is very fair because any of these “bad things” can happen to anyone of us, regardless of whether you are a virtuous person or not.

My mom has been through so much, failed procedures, crazy medications. My mom is the guinea pig for trying to discover a treatments to try to figure out this rare incurable disease. No one knows about it, there is less than 200,000 diagnosed cases each year in the United States. There is no associations, there is no funding for research, there is no special colors or awareness. It is just purely awful. “Trigeminal neuralgia (TN) is considered to be one of the most painful afflictions known to medical practice”(1) and there isn’t much to help.

My mom has been battling this disease for over ten years now. After all the medications, her body has changed, it is worn out, tired of fighting. She has been diagnosed with several autoimmune diseases, including lupus, sjogrens, ku- antibodies, and who knows what else at this point. Her body has given up its defenses, and is attacking itself. We are always worried that she catch a cold, but then it will turn into pneumonia, that she get another kidney infection, or urinary tract infection. I worry about her all the time, I have always tried to do whatever I could to make it even a little bit better. I drove her to her appointments, I tried to do well in school, and in general I tried to just be a good kid.

For a while, my mom was on some awful combination of medications, she was in pain, she was not herself. We all have bad days, and it sucks. We get grumpy and snarly with people, but we excuse ourselves because things just aren’t going our way. When you deal with chronic pain, everyday is a bad day. You start to get grumbly and say mean things to other people. It gets worse as the days go on. Even though those mean words have no validation or truth behind them, and it is just the nasty snarl of pain rearing its evil vengeance, mean words still hurt, especially when said daily. A person like me, eventually starts believing those words. Luckily, a person like me also has perspective, the big picture, and my mom may have said some things to me that hurt, a lot, but I could never hold it against her. She was in pain, and there was nothing she could do to stop it, I just happened to be around, and a easy way to take out frustration.

My mom is not the same person she was when I was a little girl. I find myself more and more each day, growing up to be her though. I pick wildflowers and fill my room with them. I’ve filled my windows with crystals and rainbows cover my walls each morning. I blast my stereo with full vigor and sing at the top of my lungs. I wear her old clothes that are now soft, worn, and filled with holes. And know I have mastered the art of making the perfect pancake (though, nothing can compare to hers).

My mom can’t sit out in the sun for hours because the medications have made her skin very sensitive. She can’t go on wild crazy adventures, or stay up all night for days going on concert tours because she is just so tired and exhausted, and her body and joints hurt. But you know what, my mom is still my hero. And I couldn’t be more proud of her.

My mom, she is the strongest person I know. I don’t mean how we used to go to her to open all the pickle jars, and to lift anything heavy, she can’t quite do that anymore. My mom is RESILIENT. My mom has been battling a disease that makes people want to kill themselves, and yet she still knows how to laugh and smile. My mom is the biggest goofball I know, and maybe it is partially her personality, and partially a side-effect of years of heavy medication, but somehow we both always end up rolling on the floor with laughter. If my mom can make it through this, through the botched surgeries, the terrible nurses, the wrong meds, through never ending pain… she can do anything she puts her mind to. Those who know my mom can see the sunshine in her soul. She is my inspiration, she is my hero.

Hey Mamma, I’ll love you no matter what.

(1) What is Trigeminal Neuralgia? | TNA The Facial Pain Association. (n.d.). Retrieved May 06, 2016, from http://fpa-support.org/trigeminal-neuralgia/