On Thursday, the Kickstarter campaign to raise funds for my book will be over and I’ll know whether I can continue pursuing a dream, what I had once believed could be a purpose, or if I’ll have to set it aside, the manuscript closed in that metaphorical drawer until another day or forever.
I’m a mix of emotions right now — and I can’t tell if it’s the Lyme that’s exacerbating these emotions in this illness of extremes or if it’s just the nerves of waiting, of trying to figure out where I go from here. I’m torn between feeling gratitude for every single person who has supported me and supported this book — that gratitude is steadfast.
And I’m wracked with feelings of guilt that I should continue to need that support.
I can fail at this. There’s a little part of me that’s screaming that I’m failing already, though I’m trying so hard. And while this illness has shown me my own resilience, while I know that I’m capable of picking up the pieces and try, trying again, I honestly don’t know if I have the strength to follow through, to keep fighting for anything when I just want to let go of everything.
My doctors, my parents, and friends repeatedly remind me that I’m not in control with this disease — not of the pain and the fatigue that course through my body or of the neurological symptoms that seem so prominent now. Still, I try to fight against all of that, wanting to find some control among the chaos of illness when there’s none to be found.
Every waking moment becomes a fight for survival, when just living becomes exhausting. Every decision and choice, every attempt to focus every thought so that you don’t fall back into the darkness in which you’re so susceptible, and every action that could have its consequence becomes a battle that you have to win. For most people, surviving is about the external; for those with a chronic illness, it becomes a war among your very self.
I have no control over my body. I don’t have much control over anything else in my life right now, either — my job still hangs in the balance, contingent upon disability protection that goes away in January; maintaining my house is dependent upon my family helping me out with bills and my mortgage and my medicine and the guilt that comes from just that alone, never-mind what caring for me emotionally is doing to them, is all-consuming…
I don’t know how to let go. I don’t know how to let go of those feelings of guilt, I don’t know how to surrender to what this illness has done and is doing to me, my body, and my life, and I don’t know how to give up on this…
During the summer, among the worst of this illness, I desperately sought out a purpose, some reason for the waking, a reason to hold on until tomorrow when some of that darkness spills over even into today. I found a future for myself in pursuit of this dream, in creating this book and in the longing to share the story that is a piece of my heart.
Now I’m beginning to wonder just how selfish I’ve been, to have needed that emotional support and to be asking for so much more. I know. I know that it’s so much. And I’m grateful and so sorry for it all at once.
I can fail at this. I can fail at this campaign and this book and this dream because I have no control over it, either, like I had foolishly, naively once believed.
I know this now. Only, I don’t know what else to do and so I keep fighting for it.
Because I don’t know what will happen next.
I don’t know what happens once I finally let go.