Spinal Cord Injury - What’s happened to you or your loved one?

In January 2006, my husband Bob was seriously injured in a bomb blast in Iraq while covering the war for ABC News. In an instant, the shock of that news turned our family upside down. Your mind is probably crowded with thoughts about what’s happened to you or your loved one, as well as from the information shared in the video below. It’s a lot to adjust to and comprehend, I know. During this time, and later, you’ll probably experience normal emotional stages that include mourning and grief. Although the grieving process is different for everyone, it’s common to experience denial and disbelief, followed by sadness, anger, bargaining, and finally acceptance. It’s natural and important to grieve for the way things were before the injury. You may feel overwhelmed or try to go on as nothing has changed. Everyone copes with these feelings in different ways. Don’t be surprised if your relationships with family and friends are tested. With time and support, you’ll begin to adjust and understand your “new normal.”

At the trauma care center, you may find initial support from a chaplain on staff or from your own religious or spiritual leaders.

Private or group counseling and support groups may also help. If those aren’t available, talk to supportive friends and loved ones. Ask someone you trust to allow you just to vent and express your anger and grief, rather than give answers and solutions at first. This is a critical time to network among your personal community. Almost everyone finds that they have a friend or a relative who knows someone who’s been through something similar who can give you advice and support. This is not the time to be a hero. Ask for help from your church, neighbors, and your colleagues.

Once your loved one is stable and ready for discharge from the trauma care center, your physician and case manager will talk to you about possible options for other healthcare or treatment. Those could include a specialized rehabilitation center, home health care, a short- or long-term stay at a nursing care facility, or day rehabilitation at a facility near your home. The case manager or financial representative here at the hospital will help you understand those options for payment depending on any healthcare coverage, workers’ compensation, Medicare or Medicaid benefits or private pay options you may have.

As you navigate the complex requirements for your loved one’s recovery, it’s a good idea to appoint one family member or close friend to serve as a point person. This person can work with the case manager to negotiate the maze of insurance and government organizations that may affect your loved one’s case and reimbursements. Be sure this is a person who can follow-through on gathering everyone’s questions, getting them answered, and not taking “no” as an answer when something important is at stake. They should also keep a notebook for taking notes, writing down answers to questions from the patient’s healthcare team and also noting important milestones or setbacks so that they can help the patient achieve the maximum recovery possible.

Even though my doctors told me it would be a long time, I was still unprepared for how long the road to recovery would be. So, as you consider the options available, think about these questions.

  • Can any family member or member assist you with caregiving?
  • Can friends or family take turns?
  • Is any close friend or family member retired, working part-time or able to take time off from work and other commitments to help?
  • Or do your options include hiring a live-in caregiver, if necessary?
  • Are there friends, neighbors, church and community group members who can form a support team or help with fundraising?
  • Do you have someone you can count on who has good access and knowledge of basic computer skills and the internet to receive emails and join online support groups or communities that provide a collective volunteer database and calendar?

Many states have tax-funded offices to support people with disabilities. Check with your county and state to see what resources they offer. These might include online directories for personal care support, specialized transportation services, and even advocates who ensure that workplaces follow laws to help your loved one get back to work, if appropriate. Empower yourself with as much knowledge as possible by checking out local support groups or spinal cord injury organizations, as well as national organizations like the American Trauma Society, the Christopher and Dana Reeve Foundation, and the organization I represent, the National Spinal Cord Injury Association.

They offer helpful tools and checklists, and you can easily find them online. Be somewhat wary of random internet surfing of topics related to spinal cord injury. Instead, rely on well-known, reputable organizations that have already consolidated the information in a helpful way.

Recovery from the initial trauma of your loved one’s spinal cord injury takes time, but many people who have spinal cord injuries go on to lead fulfilling lives. It’s essential to stay motivated and get the support you need. It’s important for family members to take care of themselves in the best manner possible. Try to take turns at the trauma care center so that you can get some rest. Lack of sleep can make your stress far worse and put you at risk for getting sick.

Take a brisk walk or continue hobbies like knitting or crossword puzzles to briefly take your mind off what’s happened. That way you’ll have better focus. No one impacted by a spinal cord injury ever “gets over” it, but as the months and years go by, you will cope and adjust. The best way to make a healthy adjustment is to keep an open mind during every step of the process, and to never give up hope. Take advantage of all the therapeutic opportunities, talk about your feelings and concerns, and meet with other people and families who have been through this. They can help you.

Science is making great strides. It’s becoming increasingly likely that some connectivity will be able to be reestablished within the spinal cord, allowing for the regaining of some function. You can be assured that the medical community will share these advances as they happen. What you can do now is maximize the function that you have at this stage. Get yourself in the best condition possible. Be as independent as possible.

Get yourself back to school, or work, and reintegrated into your family’s life.

As participants in a family or a friendship that involves someone with a spinal cord injury, we can only do our human and personal best. I used to say to everybody, “I’m only one mommy, doing the very best that I can.” We need to encourage support and care for the person we love, while taking good care of ourselves. I know that’s not always easy, but you’re going to be surprised what you’re made of.

You are resilient. I leaned on every ounce of strength that I had, and you can too. I know you can. I fully believe in the power of faith, family, friends, hope and love. It got our family to the wonderful place we’re at today. And it will help you, too.

We hope this video below has been helpful and will continue to be as you watch it again and share it with friends and family members. Refer to the print or online companion booklet as a handy tool to help you remember definitions and helpful websites. Thank you for watching. We wish you all the best for the most fulfilling life possible for your loved one and your family.

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