The following article is from a talk by Tom Shakespeare on Radio 4 on Sunday 8th March, 2020
Things don’t always go right and when the trains don’t turn up, or the shower fails, or the flight is cancelled, my response is often: “What to do?”
“What to do?” does not mean “What shall we do?”. It is not a request for help. It is an admission that the situation is helpless.
“What to do?” literally means “What can be done?” or “It can’t be helped”.
“What to do?” means “What did you expect?” and “This is what life is like” and “This is the sort of thing that happens”. It communicates a sense of fatalism and acceptance.
‘What to do?’ suggests that there are some things that one just has to put up with. There is no use fighting everything. You have to remain steadfast, despite suffering, despite not knowing why bad things are happening. And in the end, many times everything turns out well.
Sometimes, over-thinking is the worst response. Sometimes, fighting is the worst response. Acceptance helps. Distraction is good. Evidence shows that when people with chronic problems have solicitous partners, they report worse problems. In other words, if someone is always asking you about your problem, then you will focus on your problem, and feel it more acutely. If everyone ignores it, and you find distractions, then the problem will be less present and thus less of an issue. I am not suggesting simple ‘mind over matter’. The problem is real and does not go away. But the more you concentrate on it, sometimes the worse it gets.
Often, we seek to control things by understanding them. If we see what caused them, we might be able to solve them, or at least prevent them recurring. Yet many difficulties either cannot be understood, or else cannot be prevented. In these cases, maybe, we just have to find ways to endure. It’s an exercise in understanding our limitations. Disasters happen. Medicine fails us. Not everything can be fixed.
Helpless does not mean hopeless, and resignation is not the same as despair. Surely, we should always have hope. Hope is a necessary approach for everyone, a buttress against despair. But what do we mean by hope? Philosophers define hope as a desire for a state of affairs coupled with the belief that it is possible, even if not certain. We don’t bother hoping for something that we are certain we are going to get. Nor do we hope for something that we know we will not get.
Hope is different from optimism, which is a general disposition to think things will get better. A rational hope has a higher chance of fulfilment; an irrational hope is based on a false or over-optimistic belief. In some contexts, it is very unlikely that things will go as well as we might imagine. We could hope for a cure, or we might feel in our bones that we are going to win the lottery, or we might expect that the outsider is going to win the election at last. We do not want to promote false hope in these situations, because it would be dishonest and misleading. But at the same time, it would be bad for our wellbeing to lose all hope.
We need to avoid feelings of despair. Despair entails capitulation to your fate. You might feel that time is closed and will bring no positive change. It entails waiting patiently and actively, not fixating on the inevitable end, being open to new experiences. The distinction is between hopefulness, rather than false hope. Absolute hope prevents the descent into despair, but is not based on an illusion or false optimism. It just does not allow the negative feelings to saturate all other aspects of life.
One of the virtues that is rarely mentioned today, is fortitude, which means firmness in difficulties. Psychologists might prefer to talk in terms of resilience. It’s important to highlight that it does not take a special person to be courageous or resilient. We should not think that some people are heroic and other people are not. There is a danger in thinking we are inadequate compared to them. The virtue of resilience is an ordinary magic which all human beings possess. Faced by adversity, the common response is to cope, adapt, and survive.
“What to do?” and Parkinson’s
A diagnosis of Parkinson’s does not need to be met with a “What to do?” reaction. Don’t simply throw up your hands and give up. Accept that life will be difficult and different but don’t conclude that there is nothing to be done. Demonstrate hope by taking action. Exercise. Take your meds. Eat sensibly. Socialise. Surround yourself with positive people. Take part in research.
There is hope that one day Parkinson’s can be slowed or stopped, if not reversed. Until that day comes live the best life you can. Live well and hopefully.