Worse than Death

It’s getting harder to enjoy living. 2022 I had hoped to die. But here I am. Yesterday I had the surgery and ablation and yes, the surgeon (my gynae) did find a growth that he has sent off for testing. But like the other growths and tumors, I am trusting it’s going to be non-cancerous.

The problem is..I am chronically yours. I get irritated with people who tell me about their operations if they don’t also deal with constant pain. We can’t relate. You aren’t going in in pain even before the procedure. But I don’t tell them that. I can’t. It’s my own problem to deal with. People try to do the best they can. They care.

But AS is not only forever, it’s raging. It’s untreated. It’s bad. It’s awful. I can’t find anyway to reduce the pain. Even sitting in my friend’s car coming home from hospital today, she kept pitying me as I shifted around unconsciously, trying to take my weight off my painful SI joints. Impossible. You can’t sit without sitting on your bum, can you?

And with each increase in pain, is an increase in fear. What will happen? What is happening? Am I going to be bent over in a year? Will my neck be moving in six months’ time?? And here I am, writhing in post-surgical agony. I don’t know if it’s gas from anesthesia, pain from the procedure itself, or constipation. After all, your intestine rests on your womb and mine hasn’t been emptied in at least three days. It feels like where my left tube used to be, something is twisting hard and the pain is going to my rectal area. Four hours of this and counting.

There are things worse than death. Living while feeling useless. Being a mom when you desperately need to be mothered instead. Smiling when you should be crying and letting the suffering out. And worst of all, knowing that your chronic disease and this surgery aren’t the worst. The worst is yet to come when I book and undergo ulnar nerve surgery while bearing the pain of ankylosing spondylitis.

My pre-op consultation is this coming Friday. My bones are not giving me a break. Swollen, screaming, even if approval for the next attempt at treatment had arrived, I would have to wait two weeks to start it. And approval hasn’t arrived- when will that happen?

It’s a good thing I don’t live in a country where euthanasia is allowed. I have no choice but to live. And so I will try living with grace. As my friend said today, “and yet you’re still smiling.”

Better than making us both cry by weeping in her car, right?