Essay: 'To the Wastelands'

There is an old Irish saying, ‘Ní insíonn galar fada bréag’ – a long illness doesn’t lie. That is to say, a prolonged illness will result in death.  Normally, these maxims carry great wisdom. But then, there are exceptions to the rule, situations for which the seanfhocal doesn’t hold true.  In some cases, there comes a time when your illness transitions from acute to chronic. This occurs, perhaps, after a number of months, or, if you’re in a web of denial, after a number of years. It is then you realise that your condition isn’t going to kill you; but neither are doctors, or alternative practitioners going to cure you. You’ve tried everything. Medical consultants. Acupuncture. Reflexology. Mind-body work - both meditation and chair yoga. Different types of diets. Bucket-loads of supplements. You even drank a charcoal concoction, which blackened your tongue and teeth.

          Having failed to be cured, or indeed, to cure yourself, there is now no place for you in civilised society. There is no room for your story in polite discourse. Fatigue is a taboo subject, and energy is like money – if you’re short of it, people don’t like you mentioning it.  

          Thus, you are condemned to the wastelands, a territory where people appear healthy, but feel unwell.  It is a cold, inhospitable place, where you are treated with mistrust, as if you are an unreliable witness to what’s going on in your own body.  You feel your energy supply diminishing – your mind becomes jelly and your muscles lead. You know you must lie down. Stay in bed for as long as it takes. Hours, days, or even weeks.  Yet, you will get unsolicited advice to exercise and push through from someone across the border in the world of the well. You cite evidence that this approach has proved harmful, but this isn’t what they want to hear. 

          Isolation is a way of life in the wastelands. You are too exhausted to go anywhere, to do anything, to meet anyone. The possibility of holding down a job is consigned to history. Travel is a privilege which others enjoy. You are snowed in, twelve months of the year, trapped in your house, trapped in your body. The seasons don’t change, the weather doesn’t change, conditions remain adverse. You live in a frozen landscape, with no signposts, and there is no one out there clearing away snow for your escape route. 

          Your neighbours in the wastelands are supportive, but live great distances away. You confide in them of crushing fatigue, sleep disturbances, muscle pain, muscle weakness, brain fog, poor concentration. You swap notes on occasions missed, plans stymied, dreams scuppered and life put on hold. You air your frustrations, your disappointments, your fury. These people are your life-line. But they too are just clinging on. 

          Due to lack of funding, infrastructure is poor in the wastelands. Like a promised railway track, the research upon which your cure will be built has not yet been laid down.  The WHO has classified your illness - Myalgic Encephalomyelitis - as neurological and multi-system, yet there is little urgency in discovering bio-markers, or in determining the root cause. And so, there is no official treatment pathway, and you are left on your own to manage as best you can. 

          There are marauding bears in the wastelands, but you won’t recognise them at first because they are disguised as doctors. They will add to whatever physical suffering you are enduring by denying that it is real.  The very people you thought would help you choose to blame you instead, as if the gaping lacunae in the scientific evidence can be papered over by their psycho-social theories of illness.

          After twelve long years in the wastelands, you think your train has come in. You find sympathetic doctors who believe you, and who are willing to help manage your symptoms. You take the prescribed medication, and your energy levels improve, but after a number of months, the side effects become intolerable, and the treatment has to be suspended. You begin to wonder then about a potential cure, to question whether it will ever come down the track.

          When you are sent to the wastelands, you think it will be a temporary stay, but in reality, there is little prospect of return. In the meantime, you must find your voice and tell your story. 

          No hero’s journey is ever written about the person who just stayed home.                     

          Maybe it’s time for that to change  (Nina @VerloreneZeit  Jul 11)