How do you help newly injured patients develop an understanding of their spinal cord injury?

I think there are different levels of understanding. There’s the “What do I need to know and do right now?” that occurs immediately after injury—“How do I relate to this new environment that I‘m put in? How do I deal with these healthcare providers who are coming at me with all sides? How do I make decisions?” And then there is “How do I figure out my body again, and how do I learn to live with it?” For me, I think peer mentors are critical. They really help provide recognition that there is life, that things are possible in a way that I can’t. They provide indisputable evidence that life goes on, but it’s about the person figuring it out a piece at a time.

A lot of it does come down to basic education. We certainly work with the physicians, and nurses and physical and occupational therapists to get them to sort of understand the actual physical anatomy of what happened to them. We also get them to realize where they are now is not where they will be. That indeed this is the initial injury, but that their body does have the physical ability to adapt in certain ways.

Well first I want to understand what they already know. Even coming in with a new spinal cord injury, I believe that people have an expertise over their own bodies and experiences. I would elicit from them what they already know, and ask permission to tell them about any questions they may have, so it would be a very collaborative process. And I think it depends upon the readiness to engage in rehab and to explore such detailed information of how much I would provide. So it’d be supportive and enough information to have them be able to further gather what’s important to them, or to stop and let them process that.

The first part is to listen, not to come in and teach or tell. So I do a part of listening and then you find out where they’re at—that speaks to readiness, it speaks to who they are as a person, not as a product or someone that you look up and say, “This is what you need to do,” but a person that you need to join and that’s really important. I’ve found that, over the years, what's made the most difference is to join. I see people 30 years later, they remember the point where “you know, you listened.” And, I think the best clinicians across all specialties, are the ones who listen before they say. We discover that sometimes they are ready for this, more ready than you are, they are ready in their own way. And sometimes their readiness is not going to be on your timetable—that’s what you learn, and about their strengths. You learn about how to share your knowledge but more important, you learn about people.

I think it’s important to understand their tempo and that too much information in a premature way cannot be helpful. The literature very is clear that people retain—during the best of circumstances—50% of what’s told to them medically, and so their tempo has to be respected and that varies widely amongst people. I listen carefully to what people are saying and respond and even say to them, “If you want more information, please ask, because I’m always available. There are no secrets here—this is your life.”

For the most part it’s very similar to the grieving process, so there’s a lot to be done. First there’s denial—“This didn’t happen, of course I’m going to be walking again, I’m going to get better.” The whole family goes through denial—“Clearly this isn’t going to happen.” And there’re a lot of steps to get to the acceptance, and within there is a lot of anger and that anger can come out in many different ways. And just being with that and understanding it and respecting it, recognizing the emotion and getting help for it is really important because you’re not alone.

I’m fortunate to work in a team, so we all participate; I’m not the only one who has to do that. But I do provide information about the injury to a degree. I’m spending more of my time as a psychologist kind of talking to them about their reaction, how they’re coping with it, what’s going on with them at that time. And I’m listening to what their goals are and what their hopes and aspirations are. But I like to think what is most important is that the individual is collecting information from all of us, asking really all of us the same questions and hopefully using the bits and pieces of information to put it together. But we need to appreciate that they’re also receiving a lot of information that can be very overwhelming, so it’s okay to ask the questions over again.

We have to listen to where the patient is at that time. Some patients come in and they’re optimistic, they’re ready to work, and we’ll help them to discover what their potential is. Nobody one really knows what their potential is when they first come in so we’re discovering it also. Other people are very frightened; they really just want to lie around and wait for a miracle to get better. Those people we have to reassure, and we also need to push because if they do just lie around there it’s going to get worse.