By Arvind M. Dhople, Ph.D., Professor Emeritus, Florida Tech
Thanatophobia (fear of death) is an intense fear of death or dying. For some, this involves a fear of being dead. Others are afraid of the dying process. A person with thanatophobia can fear their own death or they might fear the death of someone they love.
Death is the promise we all have to keep. Our experience of illness draws us into an unusual kind of community. To be diagnosed with a disease brings us to a place of limbo – a state of uncertainty and suspense. For Dante, in Canto 4 of Inferno, limbo was the First Circle of Hell. Apt. Those who inhabited this curious home had committed no sin. Some had even achieved merit and honor. Dante included Hippocrates, Avicenna, and Galen. Distinguished company. But their lives were overshadowed by one omission – they were the unbaptized. Their souls were neither joyful nor sad. They suffered no pain and their dignity remained intact.
The land of limbo is enlarging. Partly, because there are simply more of us. Partly, because healthy life expectancy cannot keep pace with life expectancy. But another reason why Hell flourishes is medicine itself. New treatments, an example is immunotherapy, are postponing untimely extinction. Those who are neither disease-free nor yet dead may find their doctor struggling to understand this strange new setting. Doctors are excellent at transactional encounters. Less good, sometimes, at offering time and empathy. I claim no special knowledge, yet I have found these maxims helpful. Welcome to the new you: disease and its treatment changes your body and your mind – your physical contours and your mental materials.
Now is a good moment to rediscover yourself. Disease is an opportunity: you have permission (at last) to be the person you want to be. Disease admits you into an exclusive club: people who may understand you. Disease is a gift that one should put into a very special box, with a bright ribbon tied around it – and which you keep locked away in a crypt deep within your brain. Information is power: but too much information can erode the hope and surprise that go a long way to bring you the possibility of pleasure. The circumference of your life may diminish, but a smaller existence enlarges your presence and significance within it. Time and the rhythm of your life will also change: you will now live within intervals, between treatments, tests, scans, and appointments – packets of freedom that are rewards to bestow upon yourself.
Never do today that you can put off until tomorrow: yes, life must continue, but you have earned the right to exempt yourself from doing what you cannot or do not wish to deal with. Build your nest: a refuge where you are self. Your health and your disease can live in peaceful coexistence: health is not a state of complete physical, mental, and social wellbeing, or even the absence of disease. Health is your capacity to adapt and to prosper according to the conditions of your life.
In Crime and Punishment (1866 book), Russian writer, Fyodor Dostoevsky (1821-1881), has one character argue that the doctor’s first duty is the study of humankind. Disease provokes feelings of fear, anxiety, loneliness, anger, and fatigue. Friends change. Work changes. Living in that First Circle of Hell – it is a provocation. You know that one day your treatment may stop working. As the community of those living with illness grows, we should not be seeking their silence. We should welcome their honesty – their reality. I want to call this column The Joy of Cancer. There may be no joy. But diseases and illnesses they create are not going away, despite the bold proclamations of scientists.
Disease is, like art and film, music and theatre, part of our culture, a part we have chosen to hide away in hospitals, often disguised with manicured language. Prof. William Hazlin (1778-1830, UK) conjured up the image of life as a passage that grows narrower and darker the further one advances, without the possibility of turning back, and where we are slowly stifled of breath. It is time to let some air and light into that thickened atmosphere.