Yesterday I told my father things that have been building up in me for the past 15 years of my life. It was the hardest thing I've done in a long time. Trying to get him to understand what exactly I have been through in the past month. On the phone the previous night, he had told me I had to make peace with it, and that I wasn't handling things very well, and I was worrying myself into an early grave. When we hung up, I threw the phone against the wall. Anger doesn't come close to what I felt. I HAD come to terms with pain - 10 years does that. I just accepted it as part of what my life was. But this exacerbation in the past 4 months brought it all back, and having an opportunity to finally, finally learn what was actually wrong with me switched on a feeling of pure desperation. Yes, I am fragile right now. Given the number of tests I've endured in the past month, all in the hope of an answer, and all leaving more questions than answers, I think I'm entitled. Tubes pushed into my bowel -a swollen, inflamed bowel - and filled me with gas. I tried to stop myself, but I screamed with the pain of it. No sedation, no pain relief. Just someone holding my hand and telling me it was nearly over. Nasogastric tubes passed down my nose and into my stomach. A colonoscopy, which I woke from with a bowel full of gas that made me curl up with the pain as it travelled through me. They made me drink litres and litres of contrast and bowel prep that gave me diarrhoea, despite having diarrhoea already for the past 3 weeks. Before one test - an angiogram (because they thought my bowel tissue was dying), I was in pain (which was common). They gave me an injection of pain relief, and then pulled up the sides of the bed. But the bowel prep was still affecting me. I was lying on a bed facing the waiting room. All of the nurses were busy. I tried to get out of bed to get to the toilet before it was too late. "Help" I begged those in their seats, watching me. The whole waiting room of people watched me try to attract the attention of a single nurse, and they watched me look each of them in the eye and say "Please. HELP." And they just watched. Nobody helped me. I stumbled off the end of the bed, and two nurses noticed, ran over and said "No! You can't go anywhere after that injection!" And I had to beg them, in front of a full waiting room, to let me go to the toilet before I filled my underpants with diarrhoea. I sat on the toilet and I sobbed at the humiliation of it all. 26 IV access attempts - blood tests daily. Drips for medicines and fluids. I have crappy veins. Now they're a lot crappier. I look like a junkie. I had to swallow a tube that was pushed down my eosophagus as I gagged and my eyes watered. Pushed into my small bowel, where they injected a litre of contrast and air into my small bowel. They then pressed upon this area for an hour while they took xrays. The nausea was intense, but if I vomited, I would have to start again, beginning with swallowing the tube. I did all this, not complaining. Because I thought I would finally have an answer. And my father? He went away. He drove away to spend time with his friends while his daughter was in hospital in agony. Today through tears I couldn't hold back, I read a letter to him. I spoke of how sad I was that we didn't have a famiy to speak of, and that I wished so badly that he and my brother could have a relationship. How scared I was of growing up without the support of a loving family. At the end,I asked "What happened? What happened to the father who used to call me his Little Button? Who used to look at my drawings and tell me how he loved them because they were so bright? Who would show me grubs and worms in the compost?" "Things change." He answered. "You have to stop replaying the past and accept how things are now." And of course he's right. But I can't help missing being his little button. I can't help missing him being proud of me. I can't help missing his love.
