The Demon Inside Me- Part II

In time, I’ve come to understand that there are many diseases and disorders that have neither known cause nor a cure. Yet, I’m so wrapped up in my own woes, that relating to those others is at arm’s length. The medical community has deemed TN as the most painful, and so I live on this morbid pedestal of involuntary martyrdom. When I learn of others, I don’t want to come down. When a person lives with chronic pain, it is difficult to think of others. Joining a support group has proven to be soul crushing, even more so than living with my own personal problems. So not only is this demon intent on taking over my body but also my mind. And let’s not forget the trial and error meds; I’ve been a guinea pig. Despite this break down of the meaning of my life, because let’s face it, TN does partly define me since it immensely impacts my thoughts and actions, I recognize that others do have it worse. Do I find comfort in this? No. But I keep moving whenever possible, because I don’t want to become a worst case scenario. I doubt any inaction would bring me to this, but it does help me keep moving along. What I consider the worst of the worst are those who have TN on both sides of their face and the most cataclysmic hardship belongs to children with TN. My heart breaks for these people, and so I keep moving; I keep trying to find some meaning, or better yet, I continue to make meaning of my life. And the best way that I have learned to do this is by helping others. I help others despite my pain and despite my heartache. In this, I resolve to see that morbid pedestal as nothing more than a stepping stone for opportunity. It is a daily battle to stay out of pity’s way.

For SOME TN sufferers, a cause is clear. Usually something is pressing down on the nerve and there is surgery for this, but there is a 50/50 chance that the first surgery is effective. Yep, many who are brave enough for brain surgery must endure it more than once for reduced pain or to be pain free. When I was first diagnosed in 2003, there wasn’t much literature on TN. I initially joined an online support group but cringed while reading a majority of the posts. While trying to understand my own pain and learning to live with it, reading others’ post distressed me so much so that I would begin to panic. The surgery failed many, so I decided against it and I had to remove myself from the group. So for the majority of this journey, I have had no one to understand me, no one to relate to.

In 2006, I met someone; she was my neighbor. We hit it off instantly! She was like the sister I never had. We met outside almost every day for months and would sit on her front porch talking for hours about anything and everything. She was in chronic pain too. She had endometriosis. I had friends in the past that had it also, but hers was a severe case. Much of our conversations in those seven months included more laughing than I had ever experienced in my entire life at that point and yes, sadly, since then too. As soothing as that was to our souls, it was excruciating to our bodies. I frowned, shock after shock, as the laughter triggered more. I would try to breath and force myself to stop laughing, which if you ever tried that, is almost impossible. She too would force herself to stop laughing, because that triggered pain for her. She held her hip as the laughter pounded pain to her pelvis. She went to a pain management clinic, which prescribed her Percocet. It didn’t help, but she took it anyway. Pain pills and narcotics don’t help TN sufferers, but often we are prescribed them anyhow. I take two anti-seizure medications and once was prescribed a muscle relaxer. Although, I was prescribed these meds 10 years ago, I have only been taking them every day for the last two and a half years. One doctor had doggedly tried to get me on an anti-depressant, but I doggedly declined. For some, this anti-drug stance may seem like I’m a sucker for pain, but it’s not like that. Above anything else, I want my mind. A sound mind is able to make sound decisions regarding the body and the spirit. My body may whither, but there will be no mind siege for me, at least not today.

My dear friend left. She remained my neighbor, but one day she just stopped talking to me. I remember calling her because I hadn’t heard from her in almost a week, but she was distant, and I knew something wasn’t right. I called her the next day and asked her if I offended her in any way, and she said she was just in pain and was resting. Yet, I would see her outside often across the street and in her yard with one of her other friends. When I drove passed her house and waved and she ignored my salutation, I knew something had happened and she did not feel the need to explain. I hurt for years after that. I didn’t want friends, because who could match that? I did make friends. I had a handful of meaningful friendships over the years, but they never quite equaled that level of friendship. Who can match a sister? I don’t compare anyone to her, but when you can laugh despite your pain with a friend you know feels the same way, there really isn’t any better connection than that. I admit that she obviously did not feel the same way about me that I did her, since our friendship wasn’t worth salvaging. I’m ok with that. But it sure is nice to laugh, whether you’re in good health or bad- doesn’t matter.

We did each other favors- cooked for each other, ran errands for each other, and made our children run errands for the other. But I took it to another level. I gave her free massages and even cleaned her house when she couldn’t get off the couch. I put myself aside to show someone love, despite my pain. Mothers naturally do this sort of thing with their children and spouses, and of course I did that too. But it is different when you show love to someone who has not been a big part of your life. I’m not saying it is better, it’s just different. There is a community larger than one’s family. It’s important to keep order in your house and insure each member takes pride in the family unit, but in growth we understand that each family meets in the larger community. This larger community is devoted to public awareness and contentment and requires the work of individuals from various family units in order to thrive. Showing a neighbor love is one small step to a prosperous community. So I did take pride in this friendship. I helped someone out despite my pain, and it was a very good feeling.

She is my Facebook friend, but we don’t talk. I’m okay with this acquaintanceship and of course still wonder what the hell I did to make her go away. But that’s life, I suppose. I can look back and see where I have done the same thing to others. It’s important to free ourselves from negative people. If that’s what I was to her, then I am deeply sorry and I have since then focused on making my life a bit more positive for myself, and maybe if I get it right some will find my will to push through a little inspiring.