Hope and Expectations

Many times when I give a talk to clinicians I am asked the heartfelt question, “What do I tell patients and family members?  I don’t want to give them ‘false hope.’” These clinicians care about us.  They don’t want to add to our suffering. They want to encourage us and often they truly don’t know what to say.

Is there such a thing as “false hope?”  I don’t think so.  

Hope is founded on the awareness that whatever happens the situation will not stay the same, that change is constant and what I choose to do will have an impact on that change. Hope lets me set a goal and hold that goal gracefully, allowing enough space around it for other possibilities to show themselves. Hope does not guarantee a specific outcome, but it does teach me that I am not helpless.  That what I do matters.

It might be useful if we looked at the difference between hope and expectations.  These two things are not the same but they are often confused. When we expect a certain thing to happen, we are asking for a specific prediction of the future. Expectations, predictions of the future, are inherently false. The future is unpredictable.

When we experience a stroke, we come face to face with the unpredictability of our lives. We never predicted this! And even though we now may realize we can’t predict the future, we cherished our expectations and we want them and our sense of certainty back. We want to know exactly how much functional recovery we will be able to find and when we will be able to find it.

So many factors are involved in healing from a stroke, including the critical importance of our own attitudes and participation.  Our clinicians, even with their great wealth of experience, cannot predict what will happen. The brain is a wonderful thing.  Its powers of neuroplasticity are only beginning to be known. But if we ask for certainty, our clinicians’ training may not allow them to say, “I don’t know.”  They are supposed to be the “experts.”  This puts them in a very difficult position.

Our clinicians may feel that they have no choice but to respond as safely as possible.  They want us to be “realistic” and accept the depth of the injury.  Knowing the depth of the injury is critically important so that we can plan what we have to do manage ourselves when we are discharged.  That’s critical assistance in planning, not a prediction and not a statement about hope.  It’s a statement of what we know now. It is entirely possible to embrace knowing and hope at the same time.  They are not mutually exclusive.

The trouble comes when we turn these statements into long-term expectations, into predictions of the future.   If we must have a prediction about what will happen, then the prediction our clinicians may give us will be to expect the lowest outcome their experience tells them might happen.  This may reinforce our awareness of the depth of the injury and encourage us not to take unreasonable risks, but that’s not all it does.  These low outcomes, long-term predictions are actually injurious.  They undermine recovery. They affect our intention and foster a feeling of helplessness.

Hope is different.  Hope brings the knowledge that every situation has within it the potential for healing and growth. Every situation can be met and worked with.  Every situation is a fertile ground that allows us to find compassion, love and wellbeing.  Life is a mystery, particularly when life includes working with a brain injury. No one can truly predict the outcome of the course of healing from and living with a stroke.

If we turn towards hope, if we are willing to open our eyes and look for the good that might be possible, we can begin to see the stream of possibilities that each situation contains.  Hope supports recovery.

So how can our clinicians respond in a way that encourages hope and helps us to understand the depth of the injury at the same time?   They can tell us what they see about our condition right now and remind us no one knows exactly what will happen in the long run. They can assure us that they will do everything they can in the time they have with us to support us, treat and teach us, provide us resources, and help us learn how to help ourselves.  They can show us the difference between hope and expectations.

A man I know had a severe stroke and was “locked-in”.  This means he could move only his eyes, nothing else.  He and his wife were told to expect that he would be like this for the rest of his life.   Fortunately they determined to let go of expectations, to embrace hope, and to be willing to not know.  When they did they discovered endless possibilities.  Today, this man, a minister, is up on his feet, all four limbs functioning, back to his church and giving sermons.