I went back to school yesterday (huzzah!) for half a day. Even though I sat in silence by myself in the library for virtually all of that time it was very refreshing to be around people again. School is good for making you feel like you’re doing stuff. I have a terrible memory and so have to keep a rolling to do list otherwise I’d just sit writing poetry all day and not getting anything done. School is good if you’re a to do list person like me. You go from task to task and tick to tick.
Since leaving hospital I’ve had an NG tube (a tube taped to my cheek that goes down into the stomach) taped to my face for the majority of the time to help me keep on top of my nausea. I needed to keep it in for school really, but I got scared by the stares I have been shrugging off all week. There’s something quite haunting about a stare or awkward glance from a friend. It’s like they’ve seen you in a very different way. In the last few weeks I have learned that people can cope with a wheelchair or a visible tube (I have tubes all the time, they are just usually hidden), but not both at the same time. A mixture of the two seems to create a glitch in some people’s faces and makes them a bit twitchy and strange around you.
I’ve just finished reading a poetry book called “Teaching my mother how to give birth”, and I cannot recommend it enough, it’s incredible. I finally gave in and bought it after seeing it on my friend Katie’s twitter – who coincidentally writes an awesome blog you should definitely go and read the teabreakproject.com . The poetry collection concerned writes about issues which are really important in this world right now – one being the proper definition of an asylum seeker. It was one of those books which picks you up and drops you facing another landscape of ideas and thoughts you’d never even considered. It’s lingered after I finished it like the smell of baking in the house, which is always the sign of an amazing set of poems.
Finally, I’m going to give an update on my feeling of being very alone and isolated with my illness. On the back of my blog post “Me. Intestinal failure and POTs” I found a Facebook group and related charity called Gift (Gastroparesis and Intestinal Failure Trust) UK. The Facebook group is closed and such a safe space for its users. You can ask about what symptoms others are experiencing, what a certain treatment/ operation is like and where the best places to be referred to are. The amount of posts on that group that echo my experiences has made me feel a part of a huge community. We are doing a Christmas card swap this year, so I have written and sent twenty three cards to people like me! I feel connected to the people sat behind those phones, tablet and laptop screens which is very unexpected. Thank you to everyone who shared that post. It could have been your share that led me to this organisation and wonderful group of people – you may well have changed my life!