After my last blog post, I got a couple of responses from people who felt I misrepresented them. I am always happy when people come back to me in discussion. We are never changed if we cannot receive challenge or we do not really encounter ‘the other’. So here is a conversation between me and a lovely person called Elly who helped me think more deeply about the complex issues of living with illness.
Hi Andy,
I’ve been introduced to your blog via Martin Scott’s, a dear friend. Interesting timing in that my daughter (in New York) and myself in the uk are both seeing consultants today looking at our multiple autoimmune diseases plus some possible new ones! We also have a group of friends praying today, as our health puts limitations on us. So here’s the thing, I read “living with” and then “are you healthy?” and got very angry….. don’t go away…. chronic illness is real, debilitating and often life threatening.. you know that. We would love to be able to function without them, sometimes it’s not possible and sometimes can mean often.
You suggest that health professionals and I would add government and well meaning charities label us disabled. I use the term disabled to get financial aid, practical help and to explain what it’s like because chronic illness doesn’t cut it for most people (they think it’s all in you head) another label. NHS and benefits don’t relate to it either. I was challenged by my use of the word and would like a creative way to describe my life (ever read the spoon theory?) My friends have been really positive with this site. Back to my anger… Maybe at myself for using the D word but also because I feel by putting us in 2 catergories you too have labelled us. We’re neither a or b (ok I know some are) but I am me, but with those limits… I’m my head I dream and sometimes wish I didn’t because trying to act on those dreams however small can bring on a crisis. I divert.. May I suggest that you too find a new way to address us?
are you healthy?
eating ..when we’re not nauseaous
exercising… limited due to poor mobility and pain
gratefulness… yes I am
forgiveness ..yes
care of others ….finding small creative ways to do this
nature would love to be out there too but grateful to hear the birds,watch the sky change
Now you may have not directed this at us but it felt like it so to try to deal with nasty feelings of mr anger I carried on listening to the amazing story of the 5th monk. (See reimagining health post). First you told it Soooo well, my attention was caught and I was totally engaged and with all that you shared. I think we will be hearing a lot more from you, you have a gift that will draw people to listen. What you say will be important (so maybe I had to get mad so I had to write to say all that (not from me).
If you want to use anything that I’ve written or you may want to delete feel free. Its been a long read admittedly or you may have given up! So bless you, continue on this journey and may others join. Use any of my stuff to encourage conversation. I’m going to get my gp reading this.
Elly
Wow – Elly – thank you so much for taking the time to write all of that. You are absolutely right and in my effort to write a shorter blog in which to engage people, I oversimplified it in a very unhelpful way. I was short sighted in how I communicated and probably pretty patronising as well – so for all of that I am really sorry. I guess we are only really changed as we encounter ‘the other’ and so I am hugely grateful that you took the time to tell me what it’s really like for you – it changes me.
I manged to unintentionally upset another very lovely person, who told me about it on Facebook – here is part of my reply to her:
I was trying (and it seems unsuccessfully) in a shorter than usual blog to say 2 things, and I definitely didn’t unpack either well enough. However, I am hugely grateful for the chance for a conversation about it. I firmly believe we are changed as we encounter each other, and am therefore really grateful for your challenge and perspective. Gone are the days when doctors can utter edicts and always believe themselves to be right. On one level, I am trying to challenge the dehumanisation that is dealt to those, like you, who suffer with a long term, debilitating illness or disability. So much of the ‘system’ in terms of benefits, etc can (not always) dehumanise the people living with the conditions by labelling in an unhelpful way. So, I think there is a difference between calling Andy a diabetic, compared to Andy, who has diabetes or saying Janet is disabled rather than talking to Janet, who lives with a disability…..maybe I’m wrong…..
I am really hoping that we can find less dehumanising ways of talking about people who are disabled in some way…….language can be so clumsy.
Secondly, and this is where I was way too simplistic for which I do apologise, I was looking to speak hope rather than idealism for those who live with chronic ill health. I genuinely do touch on the deep pain and complexity of my patients lives every day and I know that the issue is not straight forward. My hope was to gently encourage without being idealistic that ones identity, although surely affected by chronic ill health, does not have to be defined by it. I have patients with debilitating MS, Parkinson’s, MND, Bipolar, schizophrenia and COPD who see their illness as part of them and they have had to courageously accept how utterly life limiting it is…..they struggle, they are breathless, they feel terrible pain, they hate, they feel hopeless at times and yet still they say that it is only a part of them – a huge part, that shapes every move they make, but isn’t the fullness of who they are. I could have said that much better…….did I improve or am I still missing it?
Elly – I love what you wrote about being healthy. Doing those amazing things you do, like eating when you can, exercising in the ways you are able, being grateful, forgiving others, caring for others and appreciating the beauty around you, to me that says that although your body is suffering and tired, inwardly, you are well…..and if you weren’t there would be no judgement, only understanding (at some level) but maybe also a little offer of hope and encouragement that though the tunnel is long and dark, there would be people to walk through it with you……
Thank for your lovely encouragement to me also – I am hugely glad that you wrote to me and for the challenges you brought.
Andy
He comes to be with us and changes himself in the process. He becomes utterly human, not some weird, ready-break glowing child, but deeply human and in so doing destroys the stories we have told ourselves about what he is like. He comes to us. He comes right to our very situations, our joys, or triumphs, our brokenness and our shame and says, I AM with you. And if you run away, I’m there with you. And if you turn away, I’m there with you. And if you hide away, I’m there with you. And if you fail, I’m there with you. And if you don’t believe, I’m there with you in your unbelief. Because contrary to the caricature of Dawkins, I am love itself. A love that will pour itself out time and again. A love that is stronger than bitterness, hate and division. A love that is willing to be misunderstood, misinterpreted and misrepresented. This is not the story of a God who slaughters his enemies in order to protect himself and those he holds close (a narrative upon which the nation state is built and uses to predicate the violence it does to others – and if you don’t believe me, then you haven’t read enough history). No, this is a story about a love that will lay its own life down for its enemies and enables us to do the same.
or overcome this light. The promise of the light is peace. Peace on earth. If we embrace the way of love, anything is possible. Even in the midst of all the turmoil in our world this Christmas, I find great hope in the idea of God, who is love, with us in it all. I believe that when we embrace this light and this love as our meta-narrative, as our raison d’être, we find healing for ourselves individually and corporately.
