October 11, 2016
My days are running together. Too much stress has caused me to lose time, lose days. I have no clue what day it is. What time is it? is the question always in my mind. The constant checking of my phone, depending on it to tell me what time, what day it is compounds my stress. I have appointments I must keep. Places I must go to. Places I want to be at. At the last second I fly out the door after realizing I needed to be somewhere at a specific time.
Life throws things at me and most times I allow them to roll off my back. Kind of like water off a duck’s back is how I see it. But these past several months, especially the past few weeks, have combined to overload my mind with responsibilities I cannot fulfill. The water is soaking in, dragging me down as I struggle to fly free from the water. This pond I’ve paddled around in while I’ve healed is one I’ve been grateful for. But this pond has become tiny, stagnant and there is loss of nourishment for my soul.
I look to the sky and see others fly by moving towards the bigger, open expanses of water. Yearning swells up inside me as I watch the flocks in the open sky. They call to me and my throat is dry, scratchy as I attempt to call back. I fear I’ll never get the nourishment I need to be able to call back to let the flock know I still exist.
Sometimes I wonder if I will ever break free to fly unconstrained. Or will I end up back where I began? Will I be back in a wheelchair with a dog at my side, stuck at home trying to keep the brave face, the smiling face in place? My body struggles to keep me moving in a straight line, my hands tremble and my eyes do their wiggly dance as I put on make up distracting me, embarrassing me.
This journey has always been about the fight between me and my body. It’s never been about anyone else. In the end all the help in the world wasn’t going to keep me moving forward. Only I could do this. Only I could make the choice to not give up, to not give in to this unseen enemy called chronic illness. Perhaps it’s what makes me quite impatient with those who give up when there is very little reason to. Strangers never understand my truths and choose instead to lay blame at my stumbling, tired feet. All the medical community can do is treat symptoms as they flare as there is really nothing else to be done.
Where there is no cure there is nothing else which can be done.
Life is a gift each and every single moment, every deep breath taken for decades now seems to have been taken for granted. I can walk through a door and all the assumptions are made the moment someone sees me. It’s the inside bits they do not know. The level of constant pain in it’s never ceasing waves is something no one can see on the outside. The stumbling path I often take is misread all the time. My apparent youth is confounding, not only to me, but leaves me in the box of always being discounted by others.
Having a brain injury on top of everything else compounds the confusion inside my own head. Is it this or this causing my issues today? Why is everything flaring so hard right now? Is it because of my stress levels or is it simply I’m getting worse again? Am I getting worse after so many years, over a decade, of being in remission? Why do people who should know better treat this path of mine as if it is an attempt for their attention?
Time which always seemed very fluid now seems to not exist at all. Days which seemed endless now fly by before I’m even aware the day is over. I took time for granted all those years ago. Time can’t be given back. There is only the present. My singular loneliness combined with pushing myself beyond my personal comforts doesn’t matter to anyone. It’s a personal issue at best each day as I push through the uncomfortable moments of my day.
It always comes back to the time I do not see passing until it is gone. A return to the moments I wish I could get back and do better, be better. Say the right things instead of the hard truths no one wants to hear.
It all circles back to a singular time of realization all those years ago. I could be the patient I was transporting back to their long term care home. They had the same disease I live with, it could be me. In a single instant life’s brushstroke could paint a new picture of what my life will be tomorrow.
I breathe as deep as I am able. I inwardly accept it is merely the time of year which saddens me as I cannot do what I wish to do, as I used to do. Time is passing and I can’t get it back as it heads towards the inevitable. All I can do is arrange things to be able to do what I can while I can until I can no more.