Getting Involved: Relationships

Posted by Nurse Linda in Life After Paralysis on June 19, 2019 # Health, Caregiving

Spinal cord injury either from medical issues or trauma certainly affects a person’s life in many ways. One of the more evident aspects affected is in relationships with other people. Examining your relationship with your spouse, family, and friends is important. It is also critical to developing new relationships.

The first person that you need to develop a great relationship with is yourself. Spinal cord injury might change your outlook about life as your hopes, dreams and goals might be affected by your new body function. Your plan for your life might look much different than you were expecting. Alterations might need to be made.

The interesting point about this is that it is not much different than from everyone else. Very few people can live their life as they had originally thought. You may have had dreams of success in one venue only to find life did not turn out that way as you age or develop. Perhaps the love of your life did not reciprocate your feelings, maybe the dream job did not materialize, even the death of a parent can change your life’s trajectory. There are many things that affect people’s lives in directions they never imagined.

Granted, spinal cord injury is certainly something that no one can prepare or has as a life plan for. It is a big challenge. How you decide to deal with it is up to you. Some people decide to overcompensate, some do just what is necessary, and others never adjust to the situation. This last group of individuals tend to hide, live in sorrow and withdraw from the world.

It is critical to find your balance. You do not need to like the situation. You do not need to be happy about it. You do need to find some peace with it. One action is to perform your daily living activities as they are but not to make that your sole focus. Yes, they need to be completed, and on a schedule, but if you can find something else that will be how you would like to define yourself, the spinal cord injury becomes secondary.

This is an overwhelming task. In fact, it can seem to be impossible. But you do not need to take it on alone. A good therapist can support you in your development of a positive relationship with yourself. It does take time. It is great if your immediate circle supports you. If you have depression or other mental health issues, they will need to be treated. The result will be a person who develops the ability to deal with this huge challenge.

People who have any life alteration tend to think about how this affects them. This is natural. However, other people that are close to you are also affected. Their lives are turned upside down too. Your spouse might not be able to deal with such a huge transition. Some spouses become full-time caregivers as well as spouses. This can create quite a bit of role confusion. Caring for another person’s personal needs is quite a task. Separating the role of spouse from a caregiver or combining the roles is a learning process.

Have an open and honest conversation with your spouse about how you each think your roles might be affected. Life will evolve as you move forward but at least you will have some beginning thoughts about how it might be, so you can face the challenges as they come. For instance, you might have been the person to manage family finances. Will you still do this, or will you do it jointly? Online banking might meet your needs. Who did the housework or prepared dinner? Will this need to change? What roles will stay the same and which will be different?

Another significant issue for your spouse is personal care. Dividing personal care from your spousal role and sexual intimacy is often a concern. If you have the resources, you might want to separate personal care from your spouse role by hiring an attendant. Finding resources to help you and your spouse adjust as a couple is important to success. Working through issues with a third party is helpful as it can neutralize the situation.

Family issues are other considerations. Children will need to understand what has happened. Depending on their age and developmental needs, they do not need the complete detail of every item of your personal care, just a broad overview. Children are resilient in the fact that you are still their mommy or daddy. They see your role is to love them. Spinal cord injury does not change this. Love comes from being there and supporting your child. Spinal cord injury does not change this, either. Sometimes, I see parents that are so wrapped up in their injury that they change the focus to themselves. It is important to keep your focus on your children.

Extended families will be affected by your spinal cord injury. Parents, brothers, sisters, aunts, uncles and all family members will have compassion for the person with spinal cord injury but might not have the resilience to provide the help you need. Letting people know specifically what they can do to help is best. The direct approach is ‘these are the things needed’, then let the family decide which and if they can help. Some families will be there through thick and thin, some will think they are helping tremendously when you really need other things done and some will decide that spinal cord injury is just too much for them and will duck away. Accept the help that they are willing to provide.

Friends are another issue as they do not have the connections that spouses or families have. Some will stick by you, others will fade away. This is much like real life scenarios where friends drop in your life but move on for various reasons. Spinal cord injury might be one of those reasons.

Making and keeping friends takes effort just as with a spouse or your family. You might have a long history with friends of many years or perhaps people you have just met. Either way, you will have roles that are taken on in the friendship. Perhaps you went to grade school together, work together or belonged to some common activity. Spinal cord injury may or may not change your relationship. If you were on a weekend ball team, playing may not be as it was but you can still enjoy the sport or find a new way to participate.

A connection that you should consider making is in the community of individuals with spinal cord injury. It is important to keep up with old friends and make new ones. However, in the unique group of individuals with spinal cord injury, friends can be found that can share common interests specific to spinal cord injury. You can find out a lot of great ideas about how to do self-care, activities that you might not have known are available to you and discussions about successes and challenges. These ideas can help improve your independence. Be sure you check with reliable sources or health professionals before you change your routines to make sure the idea is safe for your individual body.

Obtaining helpful information is just one reason to be part of the SCI community. Another reason is to provide information that you have gained to others You don’t need to have a spinal cord injury for years to be able to help others. There probably are many new ideas coming right out of rehab that others have not heard about. How you are doing in the real world is of interest so don’t shy away from participating.

The Christopher & Dana Reeve Foundation is a good, safe place to start. In fact, you are on the site now, so you already have begun. You don’t have to jump in right away. Read some posts and move forward with your own comments as you feel able. The Foundation’s online community, Reeve Connect, is a site full of information from people just like you.

Pediatric Consideration:

Children with spinal cord injury are like all children. They want to play and have friends. Typical friendships usually begin with starting school. They may be playmates earlier and this is important in social development. Setting up play dates for your child is an aspect of parenting.

Sometimes, situations might need to be altered for inclusion. Most communities have accessible playgrounds however, they might not necessarily be close to your neighborhood. Friends’ homes might not be accessible. See if you can find some area that will be open to all children in a group for play dates.

Teens will find kids at school or in the neighborhood. Not everyone will be friends with everyone else, with or without spinal cord injury. Teens will gravitate to groups that are welcoming. Allow your teen to have some time to find the people they want to have as friends.

For all aged children, be wary of child predators on the internet as well as anywhere. Even if your child is mature, know who their friends are, despite the location, online, at school, church or organizations. Some people will be kind or even solicitous to your child. Keep tabs on what is going on to avoid problems with unsavory individuals.

Also, be aware of your own parenting. Some parents have so much guilt about their child’s spinal cord injury that they do not allow the child to progress developmentally. It is not a matter of wanting to hold their child back, rather it is a point of not being able to move ahead. Find out what milestones should be reached by certain ages and adapt those milestones for your child. Examples can be independent use of mobility equipment, transferring self or learning to catheterize.

Nurse Linda

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.