I hear that many people with chronic illness go through a sort of mourning process at some point. I think I’m going through mine. I never got to talk about things in the beginning. I was diagnosed when I was 22, but it started 4 years before that. I remember the first time I had pain; I remember the chair I was sitting in, the blue jeans I wore, the box of tissues I grabbed for when my eye started to tear up, and the concern on my ex’s face. I remember kinda brushing it off, until the next time a few weeks later. I remember how it started to happen more frequently, and I couldn’t find the words to describe the unbearable pain I’d feel in my eye. I said it was like someone was taking a needle and sewing along my eyebrow, and sometimes it felt like someone was hammering. Then, after a few months of random pains, I began my search for answers… but no-one believed me. Noone could help me. I remember when I discovered marijuana, and how I began to develop a liking for it, and for the wonderful numbing effects it offered. And I remember how I felt when my mother discovered, and tormented me. Never mind that I was working 3 part-time jobs, working an internship, going to school full time, and I had made the Dean’s list every semester… I remember the looks the staff at the ER gave me, the 3 times someone rushed me there because they didn’t know what was wrong with me. They looked at me as though I was this THING, this lying, deceiving, drama-loving THING. And I remember the neurologist there, who laughed at me and said to “stop being such a child” when I failed some of his tests (what he thought was on purpose for attention.) I remember hiding the pain, and the frustration. Drank it away, smoked it away, and if that weren’t possible, I just ran. Stopped talking about it. Because it had to be all in my head, right?
I remember the ear nose and throat specialist- “I’m wondering if you have Trigeminal Neuralgia. You need to talk to a neurologist.” I remember sitting in the neurologist’s office, describing this thing inside my head, wondering if it was TN, just possibly? And my not really believing I was finally getting a name for the pain. And him saying, “yes, you have Trigeminal Neuralgia.” And I remember the way he looked at me; me, just out of college, my future in front of me, young and beautiful but not entirely healthy. And I remember going home, telling my parents (who I still lived with.) And I remember how relieved they were that I could take medications for it.
And I remember that NOBODY held my hand during it. NOBODY sat there in the office with me the day I got my diagnosis. NOBODY drove the 45 minutes home with me. NOBODY offered to help me pay for the very expensive medications I was on (with no health insurance at the moment.) And most importantly NOBODY asked me how I felt. Nobody. I was alone on my journey, ever since I was 18 sitting in my ex’s house in my blue jeans in my favorite arm chair, drinking a lemonade and talking about my dreams one second, the next hunched over into a pile of fear.
Where the hell was everybody? Why have I been alone? And now, that I’m not alone, I’m still not able to talk about it. No-one wants to hear it anymore. I have no friends to call, and my mom and sister who KNOW I need support, hang up the phone when I’m having a bad day. Tell me to go rest and feel better. Sometimes I don’t want to rest. Sometimes, I want to talk about it. NEED to talk about it. I never got to discuss this in the beginning. They said, here’s your diagnosis, now go on and live your life… I know they say God never gives you more than you can handle but I SWEAR I can’t handle this some days. It has destroyed my faith… my mother and husband say I have no hope, that I’m a pessimist. What’s wrong with that? What’s wrong with not having hope? Hope for relief has only brought disappointment. I’d like to stay at the bottom of faith, so that if anything good should ever happen, it’ll be an amazing surprise. And if it continues to stay terrible, well, at least I wasn’t dreaming anymore…