Driving is a key privilege, a skill that marks a milestone in the human development of an adult. Nothing makes a person feel less independent than losing the privilege to drive. It is a threshold that, once crossed, makes people feel that they have lost not only their independence but, to a degree, themselves. Those who willingly give up their driving privileges are to be commended for realizing their increasing limitations and putting others well-being and safety above their own need to remain behind the wheel.
One advantage of dealing with a progressive illness like HD is that you have some time to anticipate and prepare for the declines in functioning that are coming. While such preparation may not make the losses any less sad when they occur, they generally help to avoid the sharp sting of shock that can occur with a sudden illness.
It is important to fully grieve your loss of the ability to drive. Only then can you brainstorm ways to stay mobile and as independent as possible. Even when you are no longer able to operate a motor vehicle, you must strive to be the driver of your own life. Make sure that you exercise decision-making power over where you go and what you do. Control what you can so you don’t continuously chafe at what you can’t do. You may yet preserve parts of yourself against the progression of the disease.
For some very adaptable individuals affected by HD, the shift from riding in the driver’s seat to the passenger’s seat in life is merely one of perspective. They are still able to enjoy the scenery rather than dwelling upon where they are sitting or whether they are in control of the speed of the car. They are able to accept the services of another without feeling they are just along for the ride.
For most of us, achieving such acceptance and equanimity is very challenging. But it may be what the person affected by HD and his or her family would do best to aim for as they ride out the long course of HD together.
Adapted from “Take Care”, 2004, The National Caregivers Association and “The Marker”, 2005, HDSA.Resources
General Information about assistance for North Carolina drivers with disabilities: