Finding Out

When we first found out that Orri was sick it was every cliché you’ve ever heard. It was a nightmare. My stomach dropped and flipped. It was like suddenly flying down on a rollercoaster. The world seemed unreal. It was all of those things.  I didn’t know what to do with myself. I would phone my friends and family and tell them as if I might reach the right person who would be able to say something and make it better. No one did because there was nothing to say. The best thing anyone said was ‘fuck. That’s shit.’ It wasn’t profound or at all useful but it was true and as close to summing up the situation in words as it was possible to get.

Orri has a brain tumour. We say he has a brain tumour because that’s what people say but what I mean by that is he has several tumours in his brain and spine (but that doesn’t roll off the tongue quite as well.) When we found out, the world turned upside down and I was so sad that it physically hurt. Much more than any physical pain I’ve ever experienced. But then I would get these waves of absolute numbness. I felt nothing at all and I lived for those pockets where I seemed to snap out of my emotions. I could function then, read stories, make him brush his teeth, talk to doctors/ nurses/ relatives. Sometimes the numb patches lasted minutes, sometimes as long as an hour. Never more than that in that first week in hospital. Then my feelings would come crashing back in like (cliché again) a wave and I would leave the room because I was crying and couldn’t stop and I didn’t want to scare him. So I would stand in the corridor or walk round the hospital crying (I didn’t care who saw me, it didn’t matter at all) until I got the crying under control, then I’d go back into his hospital bed and do my best to hold it together, waiting for the next numb patch and hoping it would be soon.

Things didn’t really get easier but the numb patches got longer until I could string together a few hours, then eventually a day then up to few days without feeling my feelings. After that, it started to be possible to feel good things again like hope but I still get the uncontrollable crying, just more rarely and I still get the numbness and it is still vital for my day to day survival. I’m hoping this blog will be a place that I can record and process what has happened and is still happening to us as a family and, hopefully will also be useful to other people.