(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)
People who hear about my current living situation will often say something like:
“You don’t work? I bet you feel lucky.”
“Wow! You must have some fun days!”
“Gosh! You must have buckets of money!”
Well, I am coming to you from the sunny beaches of San Tropez where I spend my days casually strolling the beautiful landscape and my evenings dining at quaint bistros.
No, no I don’t.
And that answer can be the reply to each one of those statements up there. It’s true. I don’t work, but contrary to what some people may think, not working is not, not working. (I spent a while figuring out if that was grammatically correct.) Living with TN is a job unto itself; one which has a taskmaster for a boss and little promise of any bonus.
Fact is, having TN is the hardest job I’ve ever had. It’s more of a vocation really, except it is a “calling” that I had to answer. It turned out to be a prank call. One of those where you don’t recognize the number on your phone but you pick up anyway only to get rooked into some kind of time-share scheme where you never recoup your investment.
I miss working. I worked for thirty-eight years and old habits die hard. I miss not making a contribution to something larger than myself. I miss not having to get dressed up sometimes. I miss solving problems. And mostly, I miss the people.
My daily goal is now complex in its simplicity. Be well – or well enough. That sounds pretty easy but it is deceptively difficult. Each day brings with it a new schedule. Sometimes the pain is there in the morning, sometimes I have a respite until evening. It is unpredictable and I am not a spontaneous person. There are unexpected momentum busts like cloudy days or rainy days or days that seem perfectly fine but send me running for the Orajel. There are the budget meetings that go on between my brain and my love of food that often end up in a stalemate. And my co-workers – me, myself and I – really kind of bore me, and there’s one, the really responsible one, that keeps pushing me to do more but then tells me I still haven’t done enough.
No matter where our careers may have taken us, I think many people, especially those of a certain age, sometimes look back upon our early working days wistfully. Our jobs weren’t ones we took home with us. We worked at places like McDonald’s or the Gap or, like me, piercing ears at the mall (one of many jobs of my youth). Now I look back at those days with a different kind of regret; the realization that even that job would be too much for me to handle now. Plus, even if it only lasts a second or two, inflicting pain on someone else, especially in the facial area, is just something that I would no longer want to do.
I do take my job home with me these days. I take my job everywhere with me. And I hate the thought of my mid-year review. That boss of mine can be a real bitch.
All diseases that leave the person looking for relief in nano-seconds is the worst kind of illness to suffer. My hope is that this may pass and you will be free of pain. I am so sorry for your pain, I truly wish I could do something for you.
Thank you Mindy. You are very kind. But, we all have something right? TN happens to be mine.
I wish you could quit your job every day.
Love you, Donna.