The Suicide Disease

Every year on October 7, people all over the world try to bring attention to what has medically been described as the most painful affliction. We all wear teal, and many cities help us by lighting up the towns teal. I tend to get disillusioned with 'raising awareness,' because I think no one is listening. And I often wonder what good it will do. What good is it to talk or make memes or have a walk or cities shining our preferred color at night? But each year, as October 7 inches closer, I learn of just one little nugget of truth, of light shining in the darkness.

So, the 'Suicide Disease,' is just a nickname. But it's easier to call it that, because who can forget that, right? I'm not going to bog this post with facts, just realness, and should you decide to look it up, 'Suicide Disease' is easy enough, or you can search it's medical term- Trigeminal Neuralgia. Basically, I can and have experienced electrical shocks to my face, sensations of an icepick being stabbed over and over in my brain, or a feeling like my face is on fire. It gets better though! Sometimes I can have any combination of these feelings, and sometimes I can have them all at the same time! The 'shocks' are short, like a few seconds, BUT I can experience them one after another for hours at a time, so it tricks our sense of time and we believe to be experiencing this horrific madness indefinitely. The longest 'shock' I've experienced was a year and a half- no joke- 24/7 pain for 18 long months. Triggers- pretty much anything that causes sensation to your face triggers it. So, brushing my teeth, washing my face, taking a shower, talking, walking through a threshold (air), gust of wind, vibrations of sounds (no loud music), and stress. I mean anything really. A burp, a hiccup, bending over....

Those of us with 'invisible illnesses' learn really quickly to what extent we've taken life for granted. And being in pain certainly doesn't help us to overcome it. I've been fortunate to experience many lengthy periods of time with no pain. I do take meds, that I am currently trying to ween myself off of. Carbamazepine or tegretol. Look this stuff up! What it does to your body is devastating! So that's the rundown of trigeminal neuralgia, or TN for short.

Yesterday, my mom made a Facebook post trying to bring awareness for TN and for me. I really appreciated that, even though I didn't think it would do any good. I checked back later for a second, and was pleasantly surprised to find some well wishers and love sharing. I've spent so much of my life caring about what people thought of me, so I was super critical and aware of when attention was not genuine, when people entered my space cautiously, and when people didn't show up, which was quite often. But during my 16 long years with TN, I tried really hard to enjoy the times I was not in pain. At first it was trying, but I was a single mom with three very small children that I was homeschooling and still am. So I had to show up, and I did- barely. But the more I showed up, the longer the intervals of remission were. So I began a very long process of learning not to care what other people think. Hey man, it's not my strength! I still struggle with it, but the last two years of my life have been so much easier in that department. What's funny is the more I don't care what other people think, the more relaxed I am. And the more relaxed I am, the more about myself I learn, and the more I learn about myself, the more I like about me. And the more I like about me, the more I love. And here's the kicker- the more I love myself, the more people love me. Go figure!

So, I saw all the love on Facebook, and remembered the countless people who have come to me over the years asking for help. I get so many requests for help, it's unbelievable! It's mostly people who want support or ideas to brainstorm in beating TN, but I also get regularly called upon for advice on homeschooling, health, and every once in while for spiritual matters.

I think what I worry about the most is that I come across as needy or helpless. It seems like I'm always battling a trial. It started as a young, poor girl who was seven months pregnant yet without any sort of medical attention, without a car or phone, spending maybe $40 a month on food. I lived in a house with a bunch of strangers with no furniture. They all worked together in an MLM company and started the day early and ended it well after dark. Then on to a difficult marriage between two kids, poor, lonely, and lost. Eventually my station was a bit better, but not much since I was selling baby clothes in order to afford diapers. During that time of betterment, I had to experience betrayal and the tale of the other woman. Another child, not my own, came out of that, and my children and I ended up in a Houston ghetto. By then I was diagnosed with TN and still nursing my youngest. Being religious throughout much of my early adulthood, I decided to give the children's father another chance. I just believed that Jesus loved me enough, so it was my duty to love like that, or least try. And the thing was, it wasn't hard. I just did it. I believed life wasn't about me, at all. So I remarried him. But he remained the same. And we all had to experience a round two, well really more rounds than that, but the one that made him realize he didn't want our life anymore, just like the first go around. So once again, I was back in Houston, but the situation was better.

Not too long after that I was a single mom, living with my mom and three children, homeschooling them, working three jobs, going to school full-time, and eventually running into that year and a half of never-ending TN hell. Then I remarried, and it was ok, to be honest, but I wasn't happy. I was bored. That's when the pain started to subside. And then Hurricane Harvey changed my life. There's a lot of junk and drama in between, but it's not important. In fact, none of this is important. My story isn't the tragedies. It isn't the tension. Hell, it's not even trigeminal neurlagia. It's part of the reason I get disillusioned from wanting to help spread awareness.

But throughout my hard life, I began to see patterns. Patterns to how I thought, reacted, was emotionally manipulated, how everywhere we go, it is nothing but theatrics. How we are lied to on the micro and macro levels. How everyone cries out and there are always only two majorities- those that feel so sorry for you that they will shake heaven and earth to get you the attention you both feel is deserved and those who roll their eyes with their too busy lives. And this is the play, people. Like I've said before, well Robert said it and I quoted it, life pushes us all. And we can let it make us jump off the cliff with our emotions, or we can say, "Hell no," and push back. And it's those people that push back and see things for what they really are- those are the real game changers. And whether you want to admit it or not, this is, in fact, a game.

I have a lot to say about trigeminal neuralgia. I have a lot of things to share. But they aren't the kind of things most people want to hear. Most people want a drug, or a mantra, or prayer, or sympathy, or the latest diet, but I don't have that for you. You see, I still struggle with my pain. But, I'm on to something. I've successfully been able to manage the pain off and on for the last three years. I've had quite a few people reach out looking for some advice. And for the most part what I share has fallen on deaf ears. I'm not going to tell you what you want to hear. I'm going to tell you what you need to hear. So for the next few days, I will begin to dig a little bit deeper into my truth on the matter of pain. I know pain and it knows me, quite well. We've been friends for way too long.

But pain is a toxic relationship, and I am ending it. Stay tuned.