In my project I propose to get across what it is like to live with someone who is chronically ill. My wife Karen has advanced secondary progressive multiple sclerosis and is in a wheel chair. She needs carers to help her get through each day. The project will focus on my experience. To understand better what images to gather and how to put them together I need to articulate why my life feels like hell a lot of the time.
On the surface many people observing my life would think I have some challenges having an ill wife but will see evidence that suggests everything is fine for me and that life is good. I am healthy. I lead a full life studying for an MA in photography at Falmouth University, I play tennis three times a week, walk at least thirty kilometres a week, go to watch Valencia and Arsenal play, travel to interesting places around the world, play bridge, go birding, read voraciously, love cooking and my diary is full every day. I have a lot of Facebook and Instagram friends and I only post the positive things in my life and often with a smile.
We will be considering surfaces in the next module of the MA and all the above is about the surface observable by others of me. Inside me it is quite a different story and that is what I want to explore with my camera. If I were a building the way I see myself is like this.
How can I be living a life so many would envy from observation and feel so black and helpless inside myself? On a daily basis now I live with someone I love who is often in extreme discomfort. She now needs a specialist hospital room set up for the carers to help her with her needs. When she is up she is in a wheelchair and can now do very few of the things normal people do to interact. There is no real engagement with simple questions like how are you/what are you going to do today/what caught your eye in the news today? Her day is about managing the balance between drug induced sleepiness and periods of pain before the next set of drugs are required. Incontinence, leaking catheters and other ailments associated with medication and the MS are daily occurrences that need to be dealt with.
I have done everything I can to set things up so that Karen’s life can be as comfortable as possible. All of the events that arise that I mention here are covered by very good carers. The problem I have with the current situation is that I want to make things better than they are. I keep trying to solve a problem that has no solution other than that which is in place. This is part of the blackness.
A way to describe the experience for me is to refer to the experiments by Harry Harlow. He was ‘an American psychologist best known for his maternal-seperation, dependency needs, and social isolation experiments on rhesus monkeys, which manifested the importance of caregiving and companionship to social and cognitive development.’ Source (https://en.wikipedia.org/wiki/Harry_Harlow
Accessed 05/05/2019). In the experiments the monkeys would rush to the wire mother to get milk when hunger drove them but would rush back to the cloth mother for comfort and support for growth.
Any normal feelings I might have as a husband need to be suppressed as the wire wife, created by MS, cannot respond in any expected way. She has no sensation in her lips or normal emotional responses to touch. If I hug her I need to do so cautiously as the pressure causes her pain. She is often not present in the room now as she enters a sort of trance with some of her wordgames on her phone. Socialising has become extremely difficult and on many occassions events have to be abandoned early on in the process for problems to be dealt with.
That just describes responses to the current situation. There is also an accretion of a hardened sedimentation over the last 15 years. Our doctor tells me that on average a spouse experiences three months of chronic illness with their partner. As he puts it I have had 15 years so far and I need to gird my loins because it is going to get much worse. There is first the pressure that arises by keeping the illness to just the two of us. 15 years ago that became impossible. Since then it has been a progressive process of entering a crisis, working out solutions and then creating a ‘new normal.’ 15 years ago starting to use a walking stick was a crisis which seems so minor versus what we are confronted with now.
I can set this all down factually and wonder why I find it difficult to cope. The answer is as an emotional being having all my feelings suppressed takes an enormous toll. It is also extremely frustrating putting enormous effort in to helping someone and just getting misery or pain in return.
How does this inform my project?
- There are metaphors. On a recent photography trip to Cyprus I was really moved when visiting villages abandoned by Turkish Cypriot residents in 1974 because of the troubles then. In particular Souskiou which struck me as a beautiful place to live in which a lot of pleasure had been experienced and is now desolate and abandoned but has so many signs of a happier time. As with my situation it is unlikely its future is better for those who experienced the good times before.
- My own emotional responses to things I see and experience are an important sign. This ranges from not wanting to look at the results of a leaking catheter or a smell that reminds me what is going on. I have to deal with these situations, but the reflex reaction is to clean up, put out of mind as quickly as possible and move on. For my project perhaps I can find a way of representing this.
- There are many moments when I feel that not living is the best answer. To anyone looking at my life this might sound surprising and elicit the response that I am wrong. For me who is living it and knowing the impact such an action would have on those I love it is a perfectly rational response to a situation in which there is a hell I am experiencing and stopping that hell is very attractive for me.
- Therapists have answers. In my situation I am seeking to solve a problem that can’t be solved and because I am a performance constructed individual, I see myself as a failure. Hence the desire to end my life as a failure.
All of these answers deserve exploration with the camera. With my best friend on my recent trip in Cyprus one evening I said let’s do some work and explore what my project is about. That conversation led to this piece of reflection. What also came across was how difficult it is to make a connection between what I am experiencing and what those who do not have my experience are experiencing. Sadly it makes me understand why most people run away from what I am experiencing.
Perhaps my project is about making that connection and getting across the agony of what is taking place.
Another possibility is that this as a project is just too painful. I need to reflect on this carefully.