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What’s the best advice you have for spouses or partners after a spinal cord injury?
Psychological Adjustments to a Spinal Cord Injury
Expert videos on psychological realities after a spinal cord injury. Learn different treatments like group therapy and how they can help a patient transition.
I guess—I’m trying to think—some of it is who you have, your husband or wife, your spouse, they’re the same person, but they’re going through an extraordinary set of experiences. Be there with them; experience it with them. You won’t understand everything, but this is affecting you, too. And the more you can discuss what the process is, and not be afraid and shy away from the questions or the moments that get awkward, the better you’ll go through this. Trying to figure out the strengths and how to bring those out of the individuals. I guess for me, what I’ve seen is learning to live with a spinal cord injury well is a lot about transferring existing skills. And so the more you can help bring or remind the individual about what makes them them, about the strengths they can bring to deal with the situation, the better it will be.
Be there. Be present. Hospitals are dangerous places—they’re miraculous places. We restore people to happy lives who would’ve died 20 years ago. But, nobody’s perfect, we make mistakes—and be there, be aware, be present, be an advocate for the family member.
The main thing that I talk about it is the importance of communication. We all know that communication is an important aspect of any relationship, but it does require more talking now than it did before—talking about what we’re thinking, what we want to do, what we’re observing. And that can be scary; many times individuals are afraid to talk to their individual for fear that it will come across wrong. Sometimes there’s a tendency to treat the individual as fragile emotionally, when really what that individual wants to know is what is going on, what the individual is thinking. So it requires a different level of communication.
To be patient, understanding and give that person with the spinal cord injury time. They need time to get used to this whole change that is happening in their lives and their bodies. They need time to figure out where things are going to go from here, and how much their family is going to have to support them in ways they weren’t expecting them to support them before their injury.
I think as spouses or parents our inclination is to sacrifice our own needs and put them aside to be there for the person we love. I always talk to people about the metaphor of we’re talking about a marathon here, not a sprint—the only way to pace yourself for a marathon is to be taking care of your own needs so that you can be the best help to that person you love. I think that’s the most important piece of advice I give people is to make sure you’re taking care of your own emotional and physical health so you can be there for that person.
Knowledge is power, and I think that we want people, families, to be powerful. One of the biggest take-home messages is, “Take care of thyself,” because if you burnout as a family member, everyone suffers around you. So there needs to be a balance given to your loved one and also taking care of oneself.