The tunnel

The boat nudges into the deep cutting and the entrance of the tunnel looms large. The trees hide the sun, a chill air descends and you regret not having put on a coat in preparation for the next part of the journey. If you are lucky the tunnel will be relatively dry, but if it has rained recently you can anticipate cascades of water falling from the roof of the tunnel. You quickly don a waterproof, jam your boater’s hat firmly on your head and pull the hatch cover closed to keep the falling water from getting into the boat.

As you enter the tunnel you are alone at the back of the boat with the noise of the engine as your only accompaniment. The boat’s headlight illuminates the water ahead and the lights in the front cabin, shining through the portholes, reflect off the tunnel walls.

It is very disorientating steering the narrow boat through the tunnel. There is very little width to play with and you know that if you encounter a boat coming the other way you will have to scrape along one wall to leave sufficient room for the other boat to pass.  It is difficult to make out the water ahead of the boat even though the light is powerful – you become transfixed by a much shorter horizon than normal and your ability to steer the boat becomes more uncertain as a consequence.  You concentrate hard to stop the boat weaving its way down the tunnel like a drunk person wending their way home from the pub. Everything is so much more difficult in the dark.

Looking behind, you can still see the light from the entrance, but it is shrinking with every passing minute. There is no corresponding light in front of you and suddenly you feel very alone. Your mind tells you that there will be light at the other end and you hope you will see the far light before the fading light behind disappears altogether.

You experiment with your voice in the all-enveloping darkness. Your shouts echo around defiantly, gloriously, deafeningly. Your wife appears with a welcome cup of tea, wondering what the shouting is all about. ‘Just practising a few Masai warrior war-cries’ you explain sheepishly.

If this was a narrow boat then the journey would end in glorious daylight once again. However, let me leave you in this tunnel, with the remembrance of the light you used to know fading in the background and just the comfort of a defiant shout echoing in the darkness to keep you going.

This then is a picture of my journey with muscular dystrophy that haunts me in the middle of the night  There is no light to be seen in the distance, as the medics (and Google) inform me that there is no cure available. It is impossible to turn this particular  ‘boat’ around. The tunnel goes on, and the remembrance of the life I used to experience, like the light behind, becomes smaller with every passing day.

However, that is not the whole story and with the dawn comes another picture. There may not be a time in this life, barring a miracle, when I will see the light of day again as a fit man, but in actual fact this particular tunnel is not dark and lonely. It is filled with the light of family and friends and indeed strangers too, cheering me on, helping me steer the boat (and filling me with copious cups of tea in the process). It is filled with reasons to keep going forward and to live for today. It is filled with opportunity and new horizons. It is filled with laughter and love.

It is filled with life.