Living with a spinal cord injury

Psychological adjustment

The first weeks and months after a spinal cord injury are a period of enormous dislocation and upheaval. Your body doesn't work the way it used to, and so many actions that you used to take for granted are now a major effort; simple things you used to do for yourself now require assistance from another person. You've lost the body you used to have, and you're learning how to live with the new one. The changes are profound. It takes time, and sustained effort, to learn how to operate with the body you now have.

Expect sadness, anger, frustration, despair and helplessness as part of this process. These painful feelings will come and go for months, even longer. You are grieving the loss of the body and the life you knew. As painful as the grieving is, it's the necessary first step in rebuilding your life into something in which you want to live. Dan Wilkins, who's been in a chair with a spinal cord injury since 1980, knows the territory. He offers these coping tips for people new to living with a disability.

• Relax. It gets better.
• Unlearn everything you think you know about living with a disability. Take everything you hear in the acute setting with a shaker of salt, and most everything in the rehab unit as worthy of consideration.
• Remember that you are not alone. Find someone living successfully with a similar lifestyle and considerations. Listen to their story.
• Remember who you are spiritually, intellectually, and affectionately. Be confident that person still lives.
• Seek a sense of normalcy. Follow your sports team. Return to an interest or hobby. Go out to dinner. Get intimate with your partner, mentally if not physically. Explore possibilities.

The treatment team in your rehabilitation facility have had experience with many people and many kinds of spinal cord injury. They can help you, and the people who love you, with questions about what to expect. No one benefits from your suffering in silence. This is a time for you to ask questions, connect with staff and other patients, look for support groups, and focus on the hard work ahead. Rebuilding your life with your changed body will bring rewards, and an increased feeling of competence and accomplishment.

The people who love you

Your spouse, partner or significant other, your children, and your friends will all be affected by your spinal cord injury. They will have their own grieving, and face their own adjustments, not always in synch with yours. Your and their efforts to keep talking, and keep the lines of communication open will help everyone deal with the new realities.

Work and income

During your stay in rehab, your rehab team will help you think about work: whether you can return to the job you used to do, and what kinds of modifications you'll need in your work environment. If your former work is no longer possible, an occupational therapist and/or a vocational counselor will work with you to figure out what kind of work you're able to do. If you're facing a long period of rehabilitation, the question of whether you can work may not be on the table for some time. About 40% of people with paraplegia and 30% of those with tetraplegia (quadriplegia) are able to return to work.

If your spinal cord injury prevents you from working, you'll need to look into any disability insurance you may have for what kind of long-term income it will provide. You'll also want to find out about your eligibility for Social Security disability benefits, for supplemental security income (SSI) and for Medicare, which provides medical coverage for people with disabilities. If you have any other insurance coverage through your work or professional or other organization, now is the time to investigate it.

Accessibility, adaptive devices and modifications for your home

The level of your spinal cord injury and how much function is preserved will determine the kinds of adaptive devices and modifications you'll need. Almost everyone with SCI relies on a wheelchair at least part time. Your rehabilitation team will show you other the devices and equipment you'll need to function as independently as you can. The Spinal Cord Injury Information Network's website has an excellent section on adaptive equipment for kitchens, bathrooms, baby and child care, and other home needs, including a list of books and guidelines to help you think through what your needs are and what equipment will be most helpful.

Personal Care Assistants

People whose spinal cord injuries have left them unable to perform most self care functions may need to have a personal care assistant. Hiring and working with another person to accomplish matters of personal hygiene, grooming, bowel and bladder care, exercise, and housekeeping can be a complicated task. Even if you have a spouse or domestic partner, your partner may not be able to provide all the care you need. If you or a loved one need a personal care assistant, the booklet “Hiring and Management of Personal Care Assistants for People with Spinal Cord Injury” by Debra L. Burdsall, MPH, OTR, will be an important resource. Published by the Spinal Cord Injury Project at Santa Clara Valley, California, Medical Center it covers all the basics of interviewing, training, and working with a personal care assistant, as well as funding sources, tax advice, and forms.