Someone You Love Just Experienced a Severe Spinal Cord Injury. Now What?
First: take a breath.
If someone you love has just experienced a spinal cord injury, you are probably overwhelmed, exhausted, scared, and trying to understand an entirely new vocabulary while making decisions you never imagined having to make.
A quick note: This resource is based on personal experience and is intended as a starting point for questions and conversations. It is not medical advice and should never replace guidance from your doctors, nurses, rehabilitation specialists, or other qualified healthcare professionals.
Learn about spinal cord injury—and give yourself grace.
There is a lot to learn. Start with reliable resources and take it one piece at a time. You don’t need to become an SCI expert overnight. Ask questions, stay curious, and learn as you go.
And this part is important: every spinal cord injury is uniquely different—even when two people have the same diagnosis. Looking at other people’s stories can be incredibly helpful. They can offer hope, perspective, ideas, and proof that life after SCI can take many different and wonderful forms. But with spinal cord injuries, comparison can easily become the thief of long-term joy. Let other people’s journeys give you hope—not a timeline for your own.
Craig Hospital has a wonderful 4 minute introduction to spinal cord injury:
Introduction to Spinal Cord Injury — Craig HospitalHelp advocate for the patient.
Communicate with doctors and nurses about the recovery journey, take notes, and ask a lot of questions.
Ask to speak with the hospital social worker early. They can be an important resource for navigating rehabilitation, insurance, discharge planning, equipment, financial resources, and what comes next.
You are allowed to ask questions.
You are allowed to ask, “Is there another option?”
You are allowed to ask, “Can we get another opinion?”
You are allowed to ask, “Would a highly specialized spinal cord injury hospital be better for this patient?”
There are specialized SCI rehabilitation centers across the country, including places like Craig Hospital in Colorado and Shirley Ryan AbilityLab in Chicago. Depending on the injury and circumstances, it may be worth asking whether a transfer to a specialized SCI center is appropriate.
Start asking questions about health insurance and coverage sooner rather than later. Find out what is covered and what isn’t with regard to rehabilitation options, equipment, and ongoing care.
3. Build a team to help with everything around the patient.
Coordinate family and friends to help handle the things that still need to happen in everyday life. Help with taking kids to school or sports, feeding the dog, meals etc.
The financial side of a spinal cord injury can feel overwhelming, but you don't have to figure it out all at once. Ask questions, have a trusted member of your team help keep track of paperwork and deadlines, and take advantage of every resource available to you. Find out whether you and/or the patient have vacation or sick time available, and whether short-term and/or long-term disability benefits are part of your coverage.
Depending on your circumstances, you may also be eligible for state disability benefits or paid family leave. Look into the programs available in the state where you live and start the application process as soon as you're able.
If fundraising is going to be necessary, consider setting up a dedicated campaign page such as GoFundMe. Share that campaign with reach on social media, text threads and email chains. A dedicated campaign gives you a place to share updates, keep people informed, and thank the people who are helping. And this is often a marathon, not a sprint. Many people living with severe SCI will have ongoing expenses related to rehabilitation, equipment, home modifications, etc. Your community may want to help again down the road. Keeping them connected makes that possible.
4. Take care of yourself.
This one sounds almost too simple, but it matters. Sleep when you can. Go outside. Take a shower. Go for a run. Do some yoga. Speak to someone. If you're the person sitting beside the hospital bed, remember that you are also a human being going through something enormous. Your life was turned upside down overnight.
There will be good days and challenging days. There will be information that feels encouraging one hour and overwhelming the next. There will be progress you celebrate and setbacks that knock the wind out of you. You don't have to solve the whole future today. Just take the next step. Then the next one. And let people walk beside you.
Sending you love, strength, and hugs from two people that have been through it.
Scott & Kris Muir
