11th of November 2019
Never delegate hope
Only in the darkness can you see the stars
Hope can be a strong thing. For some people in strenuous situations it is the one thing that keeps them going. Against all odds, they choose hope. Again and again.
What about you? Do you choose hope to keep yourself going in managing your Parkinson’s? And if so, what is it you are hoping for? A cure for all? Being able to visit the school performance of your oldest son without too much symptoms? And when you have hope, what makes it stick or slip away?
What I have come to realise over the past few weeks, is that the role you take on as a patient will strongly influence the dynamics of hope. I started to notice this pattern in myself, where I began building up hope by carefully studying the scientific literature and interviewing people, only to see it slip through my fingers with one discriminating remark from someone whom I deemed more of an expert than I am. I know that these experts were – and are – in some way trying to protect me. But inspite – or because – of all their good intentions, I felt disempowered.
I had been delegating hope.
Because of the position I had put myself in, I had to remount my mountain of hope all by myself. I can tell you that’s not the kind of exercise that improves Parkinson’s symptoms. That’s the kind of exercise that leads to ‘hope fatigue’.
Stadia of hope
Now that I realise my own contribution to the pattern, I am slowly getting ready to cross the abyss Sara Riggare speaks about in the great ‘Never delegate understanding‘ podcast series. It’s the abyss that shows us that scientists and caregivers maybe do not allways know what’s best for the person they have in front of them. That is – as Sara puts it – a scary thought, but once you make the leap you can really start to work together. And take responsibility for self care, for what works for you, for letting go of the need to delegate hope.
It’s especially the newly diagnosed who are in a vulnerable position to fall for the ‘delegate hope trap’. At the point of diagnosis an inevitable power imbalance exists between patients and caregivers/scientists. The imbalance comes from the mere fact that we do not yet know what our disease is all about. We have no other choice but to delegate understanding. Being in such a position, makes it much easier to be drawn into power dynamics where the caregiver or scientist knows best.
But at some point soon, we will have to make the leap to the next level. The level where patients are empowered and empower themselves to decide what to hope for themselves.
Deciding what to hope
Deciding what you want to hope for is a very individual thing. Where science currently goes awry for me, is that it has a very hard time taking that individual into account. Science still is mostly about averages, about the majority of people reaching some kind of endpoint. Scientists (I count myself amongst them, but as a PwP, I dont like this particular attribute of our species) can make the European Alps seem like an endless flatland of 2000 m on average, forgetting it is everything but the mean that makes the landscape vivid and worthwile to inspect. That every data point represents a real human being of flesh and blood and hope.
I have heard scientists and caregivers consider it to be respectful not to give people too much hope, but I think you can just as well label it to be disrespectful to take away people’s hope. If I look around at my Parkie colleagues, I feel that most people should learn to hope more – and certainly better – instead of less. People have already been told they have a neurodegenerative disease which will take them downhill every step of the way. Such a message can knock you down and we all need some amount of realistic hope to ascend our mountain again.
To scientists and caregivers I would like to say:
Be aware of how you manage expectations. Instead of telling us what to think and hope for, gather information from us, take our input seriously and give us the information with which we can decide what to hope for ourselves. That would certainly level the playing ground for patients and scientists/caregivers. By all means, let’s discuss what to hope for and what not, but don’t encourage us to abandon all hope altogether. It’s our hope, not yours. And really, Parkinson’s is a lot better to manage with our personalised dosis of hopamine.
To patients I would like to say:
Nevere delegate hope. It’s yours. Really.