Every day I still find myself asking, “What’s next”? Recently a friend asked me why I keep writing about TN and coming back to the support group. After all she said,” you no longer experience the active pain of TN. You’re all better now.” She went on to say, “You know enough about the disease to be proactive and take preventative action for and against it. I listened carefully, but didn’t reply. I am not sure why I did’t respond to her question, but tonight as I sit down to write, I know the answer.
Prior to surgery, TN overtook every aspect of my life. Now that the pain no longer persists there is still a great deal of mending and retraining to be done. I pause before I go outside on a windy day. I am reluctant to change from a child’s toothbrush to and adult toothbrush. The thought of going to the gym and doing an extended cardio workout produce anxiety. It’s an endless list of routine activities that the average person takes for granted.
Living with TN is not a common shared experience. Most women understand pregnancy, delivery and post partum experiences. Professional athletes and weekend athletes alike understand what it means to recover from a sprained ankle or an overworked muscle. Adults and children can talk about the shrill drill sounds, or the numbing effect of Novacaine after a dental office visit.
With the exception of my son, new to TN, I don’t know another person in my intimate circle of friends or acquaintances who knows firsthand what it is like to live with TN. Most people have difficulty pronouncing it. By the time, I try to explain it what it is most people attempt to downgrade it to “just a headache.” TN is unpredictable and by far an indescribable condition that baffles the sufferer, the bystander and the vast majority of professional treatment providers.
Within the parameters of this group, I can say what I can’t describe to others. I can explain the unexplainable. I can choose not to explain a thing. I don’t have to rationalize, or justify what is real to me. Interestingly, unlike many other afflictions the pain can appear in a second and be gone as quickly as it arrived. Here, I don’t need prove that it exists, I know the pain exists and you do too. One day I know exactly how it works and on another day I am totally clueless. I am often sleepy, and frequently I am sleepless.
Today, I can see the pain from the vantage point of the sufferer, a woman free of pain, a caregiver who loves someone who knows and lives with the pain. While I’ve accepted that there are many lenses to view my pain through, the one that is hardest to look at is the caregiver lens. I don’t like the view. I feel powerless. I am confused and frustrated. I am grateful and I am disappointed. I am happy and I am sad. My head doesn’t hurt, my heart does. I see a snap shot and a panoramic view. Inside the kaleidoscope of my pain, today I see clearly and tomorrow I might be blinded by it. Some days I make sense other days I don’t.
Simply complex, wouldn’t you say? That’s why I keep coming back. Whether I choose to or not, I am living with TN. I will always live with TN.
Enjoy peace and tenderness today! It belongs to you,
Aleshia