Just a few weeks ago I was celebrating my tenth post. I was feeling on top of this weekly updating blog, even while everything else in my life was falling apart. But I’ve run out of scheduled posts. I have a folder full of drafts, half written, too ambitious for the reality of my abilities, or not good enough for me to post. I’ve managed to get some work done in other areas, but it’s left me with nothing to catch up with this blog.
So here’s what’s happening in my life: For about two years now I’ve been experiencing worsening abdominal pain. Despite various tests, scans, and specialists, and even a surgery, I still have no idea what’s causing the pain. I can’t handle any pain medications, so my treatment has essentially just been bear it and hope that eventually I’ll find out what’s going on and that it’ll be treatable. I’m not optimistic I’ll ever find out, nor that it’ll be treatable, based on my previous experiences with health complications. Underneath that is my constant Ehlers Danlos syndrome, my gastroparesis, my chronic fatigue, and various other conditions both diagnosed and suspected.
For the two years this abdominal pain has been worsening, I’ve been struggling and barely holding on. My depression, a companion I’ve had since before I can remember, has been growing with the pain. I don’t have any expectation of life improving. But I’m holding on. I’m trying to gain my footing, even though I can barely stand for the pain. I’m grasping for the things that give my life meaning, which is mostly writing. I’ve actually managed to write and get published a poem about my recent struggle with suicidal thoughts. I’ve done a first draft of a script I intent to turn into a short stand alone episode for YouTube. I’ve written a handful of words on my novel-in-progress. I’ve gotten back into scrapbooking. I’m proud of the things I’ve managed, but it’s not enough to give me meaning through the pain.
This is what life with complex disabilities can be like. Things go wrong, and they stack up with no answers, no supports, and little to no treatment. Hope becomes nothing but an exhausting let down. But the good things in life still exist. They become limited, but it becomes all the more important to grasp them and hold on tight.