Celia Capace - Header - name

Celia Capace - Priorities

Isolation is not new to me. In fact, it’s been a predominant feature in my life due to having an autoimmune illness. Now that we are all required to self-isolate I feel I’ve been preparing for this most of my life. It’s a hard way to live physically forced to be distanced from others, especially loved ones. The first time I had to isolate myself was when I needed surgery to remove part of my small bowel. I also needed to put on weight to survive post-surgery. My gastronomic specialist, who was also my surgeon, took drastic measures to make sure I isolated. 

At the time I was young and working in a job I really liked. I was also happily partying hard after breaking up from a bad relationship (my first, which is mentioned in my novella). Except for my illness, I was loving life. My body was crashing physically due to my illness but I needed to work to pay bills so I used uppers to keep my body going. On my last visit to my specialist I told him all this. His response was that I needed to take my health seriously and to make it my first priority. He didn’t want to hospitalise me as he felt hospitals were buildings full of sick and diseased people, so not an optimum place for someone with a compromised immune system. He knew I had access to family support and said I needed to move back in with my parents to convalesce and prepare my body for surgery.

Surgery wasn’t going to cure me as I knew there is no cure for Crohn’s disease. Surgery was a way to help control the illness but wasn’t always a guarantee that it would do so. I was sick of being sick and I wasn’t prepared to give up my lifestyle. I decided death was a preferred option as continuing my life in pain was what I feared most. I stopped going to see him and continued my life as before. 

Eventually, even the uppers weren’t helping to keep me going. My illness became so bad that I had to stop work and decided to wait for death, hoping it would come quickly. Unbeknown to me my specialist decided to persevere with extending my life without my permission. Whilst I’m vomiting in a bucket placed next to my bed, for I had become too weak to make constant trips to the bathroom, my bed covers were suddenly ripped off from atop my body and, to my utter surprise, my mother stood at the end of my bed in a furious stance with her hands on her hips. 

“So, your majesty” this from my mother “your doctor called me and told me how sick you are but obviously you think you know better. Get out of bed now. You’re coming home with me”. My mind exploded into “my doctor did what? He did what! How dare he go against patient confidentiality! To say I was furious with him was an understatement. My father and uncle appeared, grabbing my belongings and proceeded to fill up the back of my uncle’s utility truck parked outside. I was bundled into another car with my mother and off we went. I was too weak to object but I felt some relief thinking of things I could do to my specialist for being such a traitor. 

At first, I wanted to get to him ASAP to kill him but I calmed down enough to make an appointment first so that I would be sure to have access to him. Finally, my appointment time came and I stormed into his office ready to blast his arse for such unprofessional behaviour. Before I could open my mouth he put his arms up as a gesture of surrender and proceeded to tell me, “99 percent of my patients aren’t as sick as they think they are. The other 1 percent are really ill and you’re in that 1 percent. You know me, I’m not one that’s that keen on people but I like you and I’m losing you. I don’t want to lose you and I need your help in that. I’m sorry but your situation isn’t just about you and your illness doesn’t only involve you.” We talked some more and I came to realise that pep talk was what I needed to get my priorities right. 

It was hard to adjust to isolation. I had to cut off from everyone and though I explained why many didn’t understand. My body was too weak to do anything other than mostly sleep. I could no longer socialise at all. Eventually, I lost contact with most of my friends as their life continued without me. I grieved for who I once was but my body wasn’t giving me a choice to live any other way. It took me a while to accept my new life and as bad as my illness was my specialist was right, l was lucky to have had support and somewhere to go. Most importantly I had people in my life that really cared for me and my life (or death) choices affected them too. I needed to understand and accept that.