Rehabbing Emotional Wellness After Paralysis

Posted by Michael Collins in Life After Paralysis on August 31, 2015 # Health

Those who are "recovering" from paralysis due to a spinal cord Injury or some other type of significant illness or disabling condition have contact with or receive treatment from a variety of well-meaning professionals. These include physicians practicing specialties that were likely unknown prior to that initial hospitalization. They are followed by the nurses who assist them and the "alphabet soup" of therapists (PT's, OTs, TRs, etc) dedicated to treating whatever conditions are treatable and can be rehabilitated.

Unless the reason for hospitalization involved damage to the brain, it is likely that all of those professionals are treating the physical self, not the psyche or emotions.

Once the physical damage is stabilized, patients are discharged to whatever post-hospital living situation they can afford. Unfortunately that discharge is likely to happen long before full recovery has occurred, thanks to policies that minimize the time allotted for in-hospital rehabilitation. With luck, the insurance provider will pay for a few follow-up outpatient visits for rehabilitation but treatment beyond that may require funding from some outside source.

What are the problems caused by such "quick discharge" policies? It is not necessary to search too far to identify the repercussions to individuals who are sent home from rehab too early, and their families.

Confusion happens immediately, as the living space needs to be made accessible, medical equipment and supplies identified and purchased, caregivers (when needed) hired, and the piles of paperwork given as a last-minute gift upon departure from the rehab hospital need to be deciphered. There is no owner's manual that explains where everything can be obtained and how it can all be coordinated.

Frustration is a constant for people striving to live independently. The onslaught of never-ending denials of reasonable requests for medical equipment, supplies and services and the constant waiting for service providers like wheelchair repairmen, and even caregivers, who are late is annoying and difficult to accept.

Fear can begin to set in once relocated to home, where there are unlikely to be call buttons that will bring nursing staff running 24 hours per day nor dietitians mapping out healthy meals, cooks to prepare them or frequent therapy sessions to keep progressing toward return of function and perhaps eventual recovery. Unless the new living location is on a major thoroughfare or bus route, even the newfound nightly silence can seem unnerving compared to the constant noise that seems to echo down hospital corridors.

Insomnia can lead to exhaustion, and being tired continuously is a potential factor in the onset of depression. Dealing with the dysfunctional public transportation network can test the patience of anyone, but for those who have no other transportation options the extensive delays and advance reservations required for use of the system can add to their frustration and lead many people to simply give up on trying to leave the home except for medical appointments.

Staying at home creates a form of isolation where even friends and family members may no longer visit. Despite the fact that there are many occasions when the peace and quiet of being alone might be preferable to some social interactions, loneliness can result and should be avoided.

Lack of purpose, if unemployed, and a feeling of things being out of control can whittle down self-esteem and dash hopes for a better future. Individuals who have never been a "boss" may struggle with the challenges of recruiting, hiring, managing and firing those who provide personal assistance services.

That may seem like a lot to digest, but life with paralysis can be like that.

Before reading further, it is important to understand that I am not a counselor, therapist or anyone who is professionally qualified to dispense advice. I base my recommendations on personal experience and what I have observed in many decades of my professional life and interactions with family and friends. That said, I hope some of the following suggestions work for you and those you care enough about to share this with them.

Structure is an important part of life. We spend our early years getting up at a certain time to make it to school before the bell rings, and usually follow that with the world of employment where our bosses expect us to arrive on time. Paralysis does not mean that we have to give that up, so keep a calendar and stick to a schedule. Knowing what time you will be getting up in the morning may help minimize time spent watching late-night television and hours of computer time spent in browsing social media websites. That, in turn, may lead to better sleep and more energy during waking hours.

When dealing with a dysfunctional public transportation system and the many complications that paralysis brings, it is too easy to become a hermit rather than making the effort to get out of the house. Seeking interactions with people in all types of situations can be helpful, so don't be shy about participating in church activities, visiting shopping malls, community events or attending local amateur or school athletic events; even if you don't know any of the team members, it is entertaining and you'll likely meet some interesting people in the process.

Within a few months of returning home after paralysis, it is likely that some of the attention that has been focused on you will subside. Don't be discouraged by that. Instead, be proactive by catching up with old contacts so that they become familiar with your situation and will know that it is all right to maintain communications, visit and treat you as before. Tracing the current locations and phone numbers of former classmates may take a while, but there are likely many great conversations that will take place when discussing the shared experiences of years past. If there are any unresolved conflicts in that past, this would be an excellent opportunity to resolve them.

It is important to find a purpose and set goals. Unless work took place in an office environment prior to the onset of paralysis, it is likely that employment capabilities or opportunities will change. Do not be afraid to volunteer at first, as that work provides exposure to the workplace and might lead to actual paid employment in the future. Centers for Independent Living, the local library, nonprofits, churches and schools usually seek volunteers to help with their workload. Unpaid internships at larger corporations can provide great opportunities to showcase your capabilities to a possible future employer.

Part-time work may not provide much income when compared to full-time employment, but it also won't jeopardize income-dependent benefit programs. No matter what your physical capabilities, jobs as a telemarketer, greeter at a department store, customer service representative or serving as an usher at a theater, events center or sporting venue can provide a welcome break from the solitude of sitting home alone during the day.

If the idea of taking on some of that seems overwhelming, start slowly. Begin by starting to write a daily journal, short story or book. If for no other purpose, it will be good to read it in the future to see what was important to you at this time. Starting a hobby, or resuming one that existed prior to paralysis, can provide a welcome distraction and also a reason to remain in contact with others who share your interests.

Become an informed consumer when it comes to your newfound disability. Read everything you can find on the subject and know that the best resources are often your peers. Join support groups or associations; they can be located through your Regional Spinal Cord Injury Resource Centers or by inquiring through the Reeve Foundation website.

Avoid becoming a "victim" of the systems that are supposed to be supporting us. Appeal every denial of a service or item that your doctor has prescribed and you will soon find that getting those initial decisions overturned happens quite often.

Emotional health is as important as physical health, and the two are directly related: Don't neglect either. Be open about your feelings and willing to discuss them with your doctor or those she recommends. You and those who surround you will benefit.

© 2015 Michael Collins | Like Mike on Facebook

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.