Adjustments - Reeve Foundation

Last month was Spinal Cord Injury Awareness Month, which is important for all people to think about how to avoid injury, as well as live fully. All individuals with neurological injury and disease have adjustments to make as they continue to create their lives.

I am not really sure if there is one individual whose life has turned out as they expected. Everyone has to reconcile between what they thought life would be like and how it unfolds. Many kinds and types of life conflicts prevent people from living the life they dreamed of versus the life they have. Some examples are not getting that job you thought you earned, marriages falling apart, issues with children, and health concerns. These are all big life issues, but there are also other types of issues, including not being asked to a party, exclusion from a group, isolation, and loneliness. Reasons for disappointments in life can go on and on. As the saying goes, your troubles are the worst troubles.

People often tell me about their regrets, such as if I only did not dive into the lake, did not have a drink before I got in the car, or if I could take that one second back. Others follow the ‘rules’ of life only to find they had an infection that rendered them paraplegic or had a stroke and ask, ‘why me?’

The first action you can take to help yourself is to participate in counseling or therapy to help identify any specific issues and how to treat them, or you may find you are doing well with your mental health. Many psychological issues stem from depression, but other mental health issues can also exist. Not treating mental health issues can lead to more concerns and a downward spiral. Mental health issues can affect your physical health as well. It is critical that you see a mental health expert for an assessment of your well-being, learn tools to deal with your concerns, and help yourself and others that care for you.

Some individuals do well on their own, but these are few in number. Mental health issues can be overwhelming and quickly noticed or extremely subtle. There are some issues that may be more silent in your mind and behavior.

Self-blame is a huge issue for many individuals with neurological disease, whether by accident or disease. It can affect your mental well-being. This is a slippery slope toward mental destruction. It can be especially daunting if your source of neurological injury affected another person, such as in an auto accident or other incident. Another issue with self-blame is feeling like you are a burden to yourself, your family, or society as a whole.

Self-blame may be noticeable in your life right away, or it may linger, coming to the forefront after a period of time. It is never too early to get established with a professional who has experience in providing strategies for dealing with this situation. They will be able to bring forth treatments and provide strategies for dealing with your concerns. Self-blame can eventually lead to major depressive disorder if not recognized.

There are some activities you might take on your own. These may include participating in charitable events, contributing your time to organizations, getting involved with a faith-based organization, or increasing your time with other individuals. There are many online communities where these issues are discussed with others who are going through similar concerns. Be sure the group you connect with is sponsored by a legitimate organization. Also, be sure to think about the advice you are provided. What is right for someone else might not be the right thing for you.

Look outside of yourself. I once met three unique gentlemen. Two had strokes, one with the left body affected, the other with the right body affected. They worked together as a unit to do all sorts of things. They both enjoyed building things and together built the most beautiful birdhouse, among many other items. The third gentleman had Parkinson’s disease and was mostly independent with mobility but had difficulty communicating. The two gentlemen would confide that they had it easier than the other man, while the one gentleman would confide that he had it better than the other two. This is a way of coping. Both the two gentlemen and the single gentleman saw that their life was better than others.

It is a perfect example of looking outside of yourself and finding that perhaps your plight is not as bad as you had thought. There is always someone with issues that you may deem to be more unfortunate than yourself. You will find you have many qualities that are significant and essential. You may be a great friend, be able to contribute to your family income, effectively raise children, or be successful in many other ways. Take a moment now to think about your strengths.

Dealing with setbacks. Diseases may progress. Complications occur. Usually, these occur at the least opportune time. They most often are not because of something you did not do or did wrong. There are many reasons why the body reacts to different situations. Your body is always attempting to maintain health, but sometimes, it gets confused by misread messages. Because of these miscommunications, it may send signals for a natural healing process that are misread or not able to be communicated at all, making your health issue more complicated.

Be prepared for these occasional setbacks by knowing all that you can about your particular health issues. You may or may not want to learn about the exact physiology but know what your issues can potentially be and how to prevent or prolong times until they may occur. Rely on the guidance from your healthcare professionals to lead you through the processes. They are a great resource for direction. If you want more, review the information on the Christopher and Dana Reeve paralysis website. The site is loaded with understandable techniques and why these techniques are done. If you want even more information, look at some of the scientific literature. It can be difficult to understand, but once you have the basics, you will glean more and more from it.

Share with others. Many individuals have issues that they sometimes feel are unique to themselves. However, if you have an issue with understanding what is going on with your body, your mental health needs, your interactions with others, or even your equipment, the odds are many other people have the same issue. Often the biggest problem is that people do not want to feel vulnerable about not knowing something. However, everyone is learning every day. If you feel comfortable, share your question or your solutions with others. This might be done locally or online. You will be surprised at the number of individuals who have other solutions to issues that are the same or similar to yours.

If you do not feel comfortable sharing, look online for the issue and what other individuals are doing. This can be more anonymous if that will make you more comfortable. There are examples of just about everything online, from specific healthcare needs to things like how to put gasoline in your car and everything in between. There are many tips and time savers as well.

Of course, as with anything on the internet, beware! Some people put information online that may not be correct. Another issue is the action may have worked for them but might not be the right thing for you, even if it looks and sounds great. Be sure to look at validated websites such as major healthcare and rehabilitation sites as their information will be well validated, as is the information on the Reeve website. If there is something you would like to try, check with your healthcare professional before doing so. You certainly do not want to take a medication, over the counters, alternative, or complementary formulation that could affect your regular medication regimen without your knowledge. Even some movements can affect your body if you have an unstable injury or hidden blood clot. Always check your sources and validate with your healthcare professional.

The ideas presented here are some tips for dealing with some common adjustment issues. They are presented for you to think about and work with your healthcare professional, psychologist or therapist. They are certainly not cures for adjustment issues, but some helpful suggestions for what others do. Use them with consideration of the person who is working with the uniqueness of you.

Pediatric Consideration:

Children are rapid adjusters to the right environments. Small children see themselves from their frame of reference, which is normal because their circumstances are normal to them. Adjustment issues often come from exclusion issues, such as not being able to participate in an activity. Including adaptive activities within their friendship circles is helpful. This might be a challenge for the parents or caregivers to present to a group how your child can participate with adaptions. Advocating for your child is essential.

As the parent or caregiver, you will need to take responsibility for knowing about your child’s healthcare needs. Educating your child on their level and progressing as they develop will assist your child in being prepared to assume responsibility for their care through adulthood.

Linda Schultz is a leader, teacher, and provider of rehabilitation nursing for over 30 years. In fact, Nurse Linda worked closely with Christopher Reeve on his recovery and has been advocating for the Reeve Foundation ever since.