Here I am pretending I’m not a TN patient. I ran in the cold that day. My strength is in my legs; nothing feels better than running.
Winter is reaching out for me. I get brave some days, and I like to pretend I don’t have trigeminal neuralgia. I walk confidently down the street in the chill, without a scarf, or I consider going for a run in the cold. Then I remember what happened after I ran a 5k in Florida, and even in the warmth I was a mess for three days afterward, the left side of my face stinging because of the wind that rushed by my face as I ran. I was unable to do much except lay around. I’m in better health in Florida, but if the breeze down south can bother me, then I can’t imagine what it might be like here.
Winter is coming. Yesterday the stinging and aching flared up, on both my left and right sides, and I had to go to bed early. I have so much work to do, but I couldn’t think to function. Thank the Gods I haven’t had a severe flare-up, not since last summer. But the aching, stinging needle pain wears me out, and the burning makes me feel like I have a fever when I don’t. It makes me depressed, but I push through it, because I know life is worth it, and as long as I keep trying I can accomplish anything. Even now, the fluorescent lighting in the library I’m sitting in is making my face sting, but I come here every day to work, and there’s no getting around that.
This morning when I woke up, I remembered something.
I wrote a poem years ago, long before I was diagnosed with trigeminal neuralgia, and over the years the lines of the poem have returned to me, echoing in my subconscious especially when I’m up north.
One of the lines of the poem related Pennsylvania to “stinging needle pain”, and I recall that ever since I was a child I related Pennsylvania, and especially fall and winter, to pain, especially stabbing, aching, and stinging pain.
Trigeminal neuralgia came out in my writing, in my poetry, and came over me through depression that I’ve been fighting my whole life. I didn’t know it was TN, but it was there, a condition I’ve had since I was born– a condition that’s getting worse.
Even though I didn’t know what it was, trigeminal neuralgia sent me running south in 2010, for all my life– ever since childhood –I’ve desired to be somewhere warm, somewhere that doesn’t cause me as much pain, somewhere the heat sinks over top me like a blanket, nurturing me, carrying me through the worst flare-ups like an old friend who’s always by my side.
I know in my heart that I’ll eventually have to leave the “stinging needle pain” of Pennsylvania once again, and return south where the heat will welcome me back. Yes, I’m afraid. I’m afraid of what this winter will bring me. The pain of atypical trigeminal neuralgia has been with me my entire life, lurking in the shadows, an enemy waiting to pounce again. Cold makes it worse. TN loves cold. This enemy thrives on frigid temperatures.
Palm trees, beach, 95 degree heat– save me a spot. I’ll be back.
I was looking to read the poem to see what the perspective of a child’s experience of the condition would be. I also suffer from atypical neuralgia, and although my pain is different and didn’t come on until my late 20’s, brought on by a congenital tumor, and contrary to the knowledge of my surgeon at the time it has stayed. It is a searing, electrical pulsating pain. Now that I think of it the worst attacks have been in the shivering cold of Toronto, Canada and the dismal gray winter days of Vancouver, though my episodes are triggered by touch, eating, and speaking. However, over the years it has become less predictable, and more terrifying. Right now it is beaten into submission, maybe, with a whole lot of medication, but I do wish I could be somewhere nice and warm. Stay strong. Be well.
Thank you for your comment and your insight. I find stress can make mine worse, so my goal in life since it began to get worse is just ENJOY everything I can. I never take anything for granted, and if I start to, I remind myself how precious life is and how every moment that is pain-free must be treasured.
As for a child’s perspective, it was just very confusing for me. I was very dejected, confused, and didn’t know what was wrong with me. I wasn’t diagnosed until last summer. I wanted to post that poem in its entirety, but I couldn’t find it.
Take care, and you stay strong as well. I am glad yours is under control. Keep fighting!