Becoming deafblind brings huge, painful changes. Losing your sight and hearing means that it is much harder to communicate with other people, to get around safely and be independent. And there are other more subtle losses - like the loss of the future you had dreamed of, and your very sense of self. 

 

Rehabilitation programs can offer a lot of invaluable practical help – such how to use a cane - and can certainly help with the mourning process. But I think that something more is needed to help acquired deafblind people deal with the profound changes they are going through.

 

When deafblindness claimed its place in my life, I felt lost in transition, fragmented. My reality no longer fitted. I still wanted to work, have children, go out with friends but everything was changed. I also needed to understand the changes that were going on inside me. I had to learn how to be deafblind.

 

One of the things that has really helped me achieve a better balance in my life has been massage. 

Every two or three weeks, a masseuse at Visio, a rehabilitation centre in the Netherlands for blind and partially sighted people, gave me a massage. Each programme is based upon the needs of the individual – I wanted massage to help me improve my body awareness.

 

Although I am no longer on the rehabilitation programme, I still receive a massage every six weeks or so.

 

Each session begins with me saying how I am feeling, identifying if any part of my body seems to need attention and describing how I had experienced the last massage. 

 

Sometimes there is a guided meditation before this, which can be done sitting on a chair, lying on the massage table or standing barefooted on the ground. This helps you focus on what your body is experiencing. 

 

During the massage I normally take my hearing aids off as I prefer to focus on physical sensations – although this does mean that I can’t receive information during the massage. Afterwards we sit and discuss how it went. This moment of reflection - the transition from an inside experience to awareness is important to me. 

 

The first massages I received were mainly energy giving. They aimed to get me used to it and to see how I reacted. I discovered that massage is not something to undergo passively; it is a subtle interplay between two people. 

 

After this fine tuning, the massages became more specific, often focussing on a part of my body that felt tense or numb - such as my feet or stomach. 

 

Every time I was surprised, if not shocked, by what I started to feel during and after the massage. My tension was never restricted to one area, but influenced my whole body. I started to discover the enormous amount of tension acquired deafblindness causes me and how it narrows my awareness. This also caused parts of my body to feel numb or that they didn’t exist.

 

Slowly, my body awareness has improved, and this has helped me in many ways:

The most obvious benefit of massage is physical relaxation – something which people acquired deafblindness often struggle to achieve. 

Massage has revealed to me how much effort my daily activities demand, even in my leisure time. – and that I barely rested during the day. I now try to do an energy consuming activity in the most relaxed way possible. I pay attention to things like good light, low background noise and sitting in a relaxed way. Sometimes I just do nothing - I close my eyes, take of my hearing aids and lie down.

 

We all have to balance the energy we put out and take in, but for people who are deafblind this is especially challenging. Becoming more aware of the energy I invest every day has helped me to get a better balance between my abilities and physical limitations.

 

This has helped my self-confidence. I cannot change my deafblindness, but I am no longer at the mercy of my energy levels. I understand why talking with a new mum in the playground is so tiring, no matter how much I enjoy it. And I am getting better at choosing what I spend my energy on. 

Another benefit of massage can be the experience of `wholeness’. Wholeness, for me, means feeling the ground under my feet when I walk, enjoying the air touching my face when I am outside, noticing the differences in the air when I walk in a small road or along the canal that crosses the city. Wholeness to me, is being aware of the world around me, being part of that world. 

 

With tunnel vision I observe the world around me in fragments - fragments which I have to unify. If I meet someone, I anticipate that he might shake my hand. I do not see his hands, I barely see his face, but I anticipate that his handshake might be there. I look down to find his hand and we shake hands. This is how I put the fragments of sight, hearing and information together all day long. To do this I need to be very focussed. It is hard to be part of a world that is not visible to me. 

The information we receive from the world depends very much on who we are and what we need. Because of my deafblindness this interaction between me and the outer world has become much more honest and direct. I will give you an example: If I meet a friend, it is hard for me to communicate on a superficial level. It just costs me so much energy to communicate about small things in life, like her new dress or hair cut. I cannot see her body language, but I do ‘feel’ her energy. I can sense what she is expressing and because she is a friend I respond to this. This is something most people are not used to. Small talk is more common than honest talk. Of course I’m not saying that people with acquired deafblindness can’t enjoy small talk. I do talk to my neighbour about the weather for example. 

 

It is just that the way that I connect to the outer world has slowly changed – and I think it is vital that people with acquired deafblindness are aware of this change. The way you connect to the outer world defines your presence, the way you take part in that world. And being present is a precondition to your ability to participate.

 

Here’s another example: I enjoy walking through the woods with my family. This requires a lot of concentration and help from my husband and older son to keep me on track and stop me being scratched by overhanging branches. At the same time I feel the soft, fresh air in the woods, I see the subtle play of sunlight in the leaves and I may teach them to become aware of nature surrounding us. On the one hand my deafblindness means I can not see the overhanging branches, and I need someone to help me. On the other hand my deafblindness means I feel nature on a more essential level, and I may share this with others. 

 

This isn’t easy. It requires a lot of concentration to act from only small fragments of information. All the time I have to think about the action, instead of being part of it. If I play a boardgame with my son, I know there are two dices, know they are somewhere in the box, but where are they? Knowing, seeking, thinking, and concentrating is what I do all day long. This concentration weakens my sensation of being present, as if “I only exist in my head”. It feels like being cut off from the outer world, like being “bodyless”.

At the same time, my improved sensitivity to what I call the energetic level of communication is also challenging. I have to learn how to deal with the things I am picking up. Being in large groups is not only tiring because of what I don’t see or hear, but also because of what I do feel. 

 

These processes can cause a disturbing disconnection, a sense of fragmentation inside myself - as well as between me and the world. Massage helps me to restore the connection between body and mind. Massage makes me grounded and whole so that I feel my body again. 

 

This is wonderful and painful at the same time. Being grounded means that I am confronted with my lack of sight and hearing. It means realising how tired I am after getting the groceries from the store around the corner. But it also means that I am present and that is fundamental. Being tired when I am grounded feels so much better than being tired when I feel ‘bodyless’.

Another benefit of massage is that it helps me to develop my sense of touch – which is essential when sight and hearing are progressively being lost. Again and again I am surprised by the capacity of the sense of touch. With the deterioration of my sight and hearing I not only become more sensitive to ‘material information’, but also to the atmosphere or space I am walking through. 

 

I can feel if a room is cosy or cold, if a street is narrow or wide, if there is water around or not, etc. I also become more sensitive to the `radiation’ of the people I meet. Mostly, I can feel if a person is happy or sad, energetic or tired. The enormous capacity for sensitivity makes my sense of touch a rich tool for orientation and communication. 

 

It is not always easy. I have to learn to focus on the information I receive through my sense of touch, but also to translate the information I receive in the right way. Tension in my shoulders may tell me that I undertook an activity that was too demanding. But it can also mean that I took on too many activities without enough time to recover. Or it might mean that I feel the tension my husband carries with him. The same sensation can tell you different things. It requires an open and honest attitude to learn to understand my body signals. In short, once again, it requires me to be present.

 

The use of touch as an instrument of communication is limited in the ‘normal sighted’ world, as it may be too intimate for most sighted people. Massage helps me to explore and develop my sense of touch without this tension.

Massage can also be a healing experience. Deafblindness took away a lot of my physical freedom, which I find extremely painful. I identified my body with the lack of sight and hearing so that it became `something I could not rely on’. It was something that was in my way, not something I could work with. 

 

During massage my body is treated respectfully and touched attentively. And I am able to feel how hard my body works to compensate what is lost. It touches me deeply. 

 

This awareness has made me aware not just of my sight and hearing loss, but of all the other things my body offers. It helps me to feel grateful again towards my own body and also to mourn my loss. This is a healing experience which has strengthened my self-confidence. 

 

Although each person is different, I believe massage to be a valuable addition to the rehabilitation of people with acquired deafblindness. 

 

Massage improves your body awareness, which helps you to balance your energy and be present. Being present means you take part in whatever you do – which is an essential precondition for true participation.