The other day I went to an informal work meeting to discuss my rather unstable health and the difficulties that may creep up in the coming months. The meeting was with one of the gentlest people I’ve met, a woman called Liz.
About 15 minutes into this meeting and as we were talking about all sorts of scenarios, Liz asked me what I wanted. Not what I wanted to do or what I wanted to plan or what I wanted to happen, but what I wanted. It was an impossible question to answer. We looked at each other until she said “Why am I asking you that? What you want is not to be ill”. I had to bite my hand to maintain my composure.
And that’s the long and short of it. The ugly truth of the matter. What I want is not to be ill. Eight years in, after struggling for years to reach a place that resembles acceptance, what I want is to wake up one morning and discover it was all a dream. It is such a contradictory place to be in, as I fully believe that I would not be the person I am today were it not for my ill health, all I’ve had to go through because of it and the people I’ve met as a result. I love my life and am endlessly grateful for it. And yet when I wake up with a temperature from yet another infection or swollen beyond recognition from angioedema or with creaking, painful joints that constantly give out all I want is to close my eyes and wake up to a reality where I am healthy, my body is dependable and my most prominent physical complaint is having a cold.
I can analyse this to death. In fact I am trained to analyse it. I can talk about how illness brings us face to face with the reality of our permanence on this earth and of our physical limitations. I can tell you health can serve as an illusion of immortality for people and illness can bring us closer to what is important in life and can force us to grow as human beings. And It wouldn’t be a lie. What is also true is that once in a while I am overcome with longing for an existence and a physical self that will never be. That sometimes I want to be able to get lost in spontaneity and not live in a carefully calculated balancing act of small disasters. That some days it feels like I’m drowning in a sea of lost possibilities and fear that’s all my life will ever be. It may be self indulgent, but it’s emotionally honest. And there’s nothing wrong with that.