I cleaned out my blogroll this morning, checking for dead or stale links. I deleted anybody who looked like they weren’t actively updating their blogs. Sad to see some friends left the business, even let their domain names lapse. If you are still out there and I have made a mistake, or if you are new and want a link, let me know.

In January I had surgery to reconnect the remains of my bowel. I had been waiting for this operation for a long time. Some people adapt well to the appliance, but it has been a constant frustration for me. I need to be rid of it. My surgeon thought I had a good chance of a successful operation. He was wrong.

When they opened me up and got down into my abdomen, the surgeon realized that there was too much scar tissue to finish the operation. What’s more, the scar tissue had fused with my bladder, so there was  a significant risk that my bladder would be damaged in the operation. He pulled out, sewed me up, and I spent the next six days in the hospital.

When I woke up after the operation, I knew immediately that it failed. I think it was because there was no nasogastric tube, or maybe I was somehow aware despite the narcotics that I was still wearing the appliance. Either way, it was crushing. I was extremely angry — not that I could fault the surgeon’s judgment, which was sound. But it was a lot of pain to find out things were going to be exactly the same. Almost three months later, my incision still fucking hurts. I am still angry.

Not only do I still have the appliance, but I left the hospital with a fungal infection beneath the thing. Pre-surgery, I was changing my appliance twice a week. The infection eventually made the skin underneath unbearably itchy, and I have spent the last two months fighting it with powders and creams, and changing my appliance almost daily, sometimes twice in one day. Only in the last week or so have I had any success, but I am still constantly aware of the appliance, and always sensitive to any tickle or twinge that might signal the organism’s resurgence. I sleep soundly maybe one night in seven. I am tired and frayed and I hurt.

Meanwhile, my career has run into significant trouble, which more or less relates back to my illness. The expectations my supervisors have are untenable given my health, and they have not provided the support or flexibility I need. I am trying to decide whether it’s worth fighting — and that would mean wielding the ADA like a sledgehammer — or whether I just move on. In any case, it is something else the illness threatens to take from me.

I stopped blogging because I wanted to focus my energy on the person I was apart from my disease. Diana’s question is tricky in my case, because of course Duncan Cross is an alter ego for a person who tries to have a normal life offline. The things I talk about here I am not comfortable sharing with most folks in the real world. They would not understand, in a way that I hope other sick people do.

I thought that being Duncan Cross was a distraction from the real me. So I put the blog away to go out and be someone not completely overcome by my disease. It looks like I have failed. Which means I don’t really have an answer for Diana’s question. I know the person I want to be, what I would do if I weren’t sick, but I seem to have no power to be that person, to become that person. My mother is trying to help me find a new career — she knows some people — and so she asked me, ‘what are you good at?’ The only thing I am really good at anymore is fighting my illness.

My career is, or was, in education, so I have at least been able to take a semester off to deal with my surgery. This time off, the discipline and rhythm of recuperation, has felt more like the real me than anything I have done in the last two years. If I were not sick and injured, I suppose it would feel like indolence, since I am not really doing anything — and yet it feels now like my vocation, like honest work.

The point, I guess, is that I feel a lot like Duncan Cross these days, and a lot less like whoever I am without my disease. I can no longer tell where disease ends and person begins — it has come to infect everything about me, every interaction and aspect of my life. I hate that, I don’t want that, and I have fought it, yet it is.

I think the only thing I can do about it, at least for now, is return to this blog. I think I was better at bracketing out the illness from the rest of my life when I was blogging regularly. I think having the vessel of Duncan Cross in which to dump my ills was a psychologically useful device. I think that in order to be an offline person not completely overwhelmed by my disease, I have to be an online person who is. That seems dishonest somehow, but I have come to suspect that the ‘real’ me is the liar, and Duncan Cross is the truth. That is who I am: there is hardly anything of me without my disease.