What's the most important thing for families to know right away?

I think my advice would be similar to the person who sustains the spinal cord injury, which is be patient with yourself, be patient with your loved one, you are in uncharted territory that you’ve not had to deal with before.  Others have been down this path before, and there’s an immense wealth of resources out in the community, on the web, through mutual support organizations that you don’t even know about yet.  But they’re out there, and waiting to be tapped.

That you matter. I think that it's important that the family knows that their presence, their involvement is very, very important. The family, the friends, the extended family—all of those pieces make a difference. And families often are a little uncertain as to, "What do I say? — How do I approach this?—How far do I go?" And, it's very difficult to know exactly what to say. My advice is just say as you normally would say, be involved as you normally would, and don't get hung up on not doing it because you're afraid you're going to do it wrong. But I think it's important that the family knows how critical their involvement is, that they are really a very important part of the team. And also to know that it's not going to be easy, your family member who had the spinal cord injury may not be a happy camper in many instances, even though you're breaking your behind to do whatever you can for them. And sometimes, that just how it rolls out. But, again, it could be the same even if there wasn't a spinal cord injury. So you have to remind yourself that life is full of rocky roads, that's what life is. But your involvement as a family member is critical, and it's that love that's going to carry you through this.

The one thing for family members to know is that their experience as a caregiver, their experience as a loved one, is a very important experience. And, it's an experience just as important, in different ways, but just as important as the person who is going through the injury. And, that needs to be honored—through the good times, through hard times, through self care, through finding support—that it is just as important.