Existence Equals Protest
Sometimes you just have to let go of everything you love, care about and want, and give in to what ME/CFS dictates. I am having to do that right now. ME/CFS is forcing me to sleep all day and night everyday and I don’t know why. I have just had to keep sleeping. I have had to let go of everything except for meds, food and water (the ME/CFS bare essentials ) for the last 2 weeks including writing you despite all of my ideas and goals and aspirations.
And I’m really suffering. It’s so hard to live life without being able to do anything and not feeling a purpose. I feel this constant pain in my chest and this huge wall of things I want to do behind me that keeps growing. Two years ago I was able to work on projects almost all day and sometimes into the night. It’s so hard to get worse after getting better.
Right now I feel like I’m just a sleeping blob and nothing more. I sleep and wake only to have to do med, food or other essential routines and then I go back to sleep. But I remind myself that this will change in time and that this is just a phase. I’m still a writer and a photographer and a headphone maker and beyond that I’m still Whitney. I’m still a man full of a whole world of love, courage, dreams and ideas. I will continue working on and creating whatever I can in the future. It will come back to me. But even now, unable to do anything but sleep, by simply existing, I am a ME/CFS activist.
Whether we sleep, lay still in darkness alone for years; Whether we scream at the walls of our rooms or are silenced by them; Whether we can walk or whether we must roll on wheels; Whether we have not left the bed or seen the sun in years. We exist. And therefore we assert that ME/CFS is real and exists and our suffering is real and exists and by continuing to exist we show ME/CFS to the world and we show that we are not simply going to go away. There is no carpet large enough to brush us under.
Existence itself is a purpose. Existence equals protest.
So exist. And try to be at peace with that. Anything more that we are able to do is a blessing. It’s not easy and I honestly am not at peace not being able to work on things, but I am trying my best.
This post is a blessing in a moment of clarity during a day when I have not slept as much. Maybe it is passing already. Or maybe it is just today. Either way, I will continue to exist and NIH will feel my wrath.
Existence equals protest.
Love,
Whitney
And I’m really suffering. It’s so hard to live life without being able to do anything and not feeling a purpose. I feel this constant pain in my chest and this huge wall of things I want to do behind me that keeps growing. Two years ago I was able to work on projects almost all day and sometimes into the night. It’s so hard to get worse after getting better.
Right now I feel like I’m just a sleeping blob and nothing more. I sleep and wake only to have to do med, food or other essential routines and then I go back to sleep. But I remind myself that this will change in time and that this is just a phase. I’m still a writer and a photographer and a headphone maker and beyond that I’m still Whitney. I’m still a man full of a whole world of love, courage, dreams and ideas. I will continue working on and creating whatever I can in the future. It will come back to me. But even now, unable to do anything but sleep, by simply existing, I am a ME/CFS activist.
Whether we sleep, lay still in darkness alone for years; Whether we scream at the walls of our rooms or are silenced by them; Whether we can walk or whether we must roll on wheels; Whether we have not left the bed or seen the sun in years. We exist. And therefore we assert that ME/CFS is real and exists and our suffering is real and exists and by continuing to exist we show ME/CFS to the world and we show that we are not simply going to go away. There is no carpet large enough to brush us under.
Existence itself is a purpose. Existence equals protest.
So exist. And try to be at peace with that. Anything more that we are able to do is a blessing. It’s not easy and I honestly am not at peace not being able to work on things, but I am trying my best.
This post is a blessing in a moment of clarity during a day when I have not slept as much. Maybe it is passing already. Or maybe it is just today. Either way, I will continue to exist and NIH will feel my wrath.
Existence equals protest.
Love,
Whitney