Not my most favourite song, to be honest, but the right sentiment is there. That, and
Don’t sweat the small stuff.
Take it with a grain of salt.
Like water running off a duck’s back.
Grin and bear it.
This piece is dedicated to all my fellow epilepsy and pnes patients and the lives they live. For those who’ve been in a seizure unit for days and weeks, even months. Ensconced in a 9×9 or 10×10 ‘cell’ with electrodes glued to their head and attached to a machine by a leash. I’m writing this to let you know, I get it. I’ve been there and know what it’s like. I can empathize and understand what you’re going through. The following are my thoughts and feelings and no one else’s. They are meant to acknowledge yours and the path you walk. I feel for you, and I want you to know I’m thinking of you and that you’re not alone.
Keep your chin up. WE’ll get through this. WE’re survivors, warriors, brave and courageous. WE may not win the war, but the battles are ours and we get a step closer to triumph with every win.
So many idioms, phrases, quotes meant to send a positive message have been used for centuries. In most cases, they’re a good pick-me-up, a turn-that-frown-upside-down magic trick. But, depending on your frame of mind, your mood, your health physically and mentally, they’re like jabbing a knife into your chest.
We’ve all been there. At a low point in our life where everything is black, all doom and gloom. You’re in a hole and can’t climb out. Often times, a smile, a hug, and a simple phrase, and I love e you, care about you, I’m here for you, is all it takes to lift you up and onto the turf. But sometimes the opposite happens. Sometimes you feel like Alice, shrinking down, down, into a crazy world, feeling lost and alone.
I know for me, constantly hearing all the positive thoughts meant to cheer me up, only deepens the feelings of frustration and anger over my situation. Which is not the intention. Family, friends, doctors, and even other patients are focused on one thing: offering up that silver lining, reinforcing hope and a positive outlook. That life could be worse. But what many fail to realize, or want to allow, is the need to be angry, feel sad, to be scared. Unless one has walked a path full of uncertainty and faced with a loss of self, what was and what will not be again, those feelings of despair are foreign to them.
I’ve never been one to whine about the ups and downs my life has had. I’ve always been one of the many who offer up old adages of positivity, the ‘life could be worse,’ and ‘think on the bright side, you could be dead,’ sayings we’ve all reach for. But now that the shoe is on the proverbial foot, I see the impact those words have and they’re all not received in the manner they’re intended.
I’m sorry if my words offend anyone, that I’m being a ‘negative nelly’ It’s just how I feel. Not all the time. A lot of the time. And sometimes, not at all. I’m depressed. I’m scared. I’m angry. I feel hopeless and helpless. I feel guilty of how my life has affected my family, especially my son. I’m in mourning grieving for the loss of freedom and independence I no longer have. I’m frustrated as fuck [excuse the language]. I’ve lost most of the sensation in my left hand, my right has become arthritic. I have glaucoma and double vision, I’ve lost 10-20% of hearing in my right ear, I have epilepsy and psychogenic non-epileptic seizures. I’m depressed and have anxiety. With all that going on, I have the right to rant and rave, cry my eyes out, and hide from the world. Wouldn’t you?
Having said this, I’m thankful for all the help offered, and freely given, the support of loved ones, the doctors, nurses, therapists, and even strangers who walk beside me on this journey to? Wherever it takes me, good or bad.
I can’t speak for everyone with a seizure disorder that runs rampant, taking control of everything, but a simple, ‘hi, how’re you doing today? What’s new? What’s your plans for the week?’ is all I need. Don’t try to placate me by drawing comparisons to show you can relate. Because you can’t. Just as I can’t understand what it’s like to have cancer, MS, ALS, or heart problems. I’ve not been there, done that, nor have I bought the t-shirt.