LIFE DIVIDED

Through my years of working as a therapist for those who have survived traumatic neurological injury, I have not only witnessed the physical pain my patients have gone through, but also the emotional hardship that results from the healing that must take place after such an injury occurs. As a member of a small portion of society that deeply understands the implications and ramifications of a traumatic injury to the body, I also care deeply about the emotional wounds that are surrounded and imbedded in the physical wounds. Because of the need to restructure their existing lives in a new way, the transition of how each of my patients fits within society and relationships changes drastically.

“They say they don’t care that I am handicapped, but are they saying that to be nice?”

Matt, 34 years old, has been in a wheelchair for half of his life. As a senior in high school, he had no idea how a dive into a lake would impact his friendships, relationship with his parents, and networking abilities. “They say they don’t care (that I am handicapped), but are they saying that to be nice.” Missing out on “the college lifestyle,” moving out of his home, getting married, having children, and witnessing his closest friends move on has been a heart-breaking reality for the last 17 years.

This was a hard lesson to learn as a young man, trying to experience life and develop bonds with people that “say they were his friends,” especially at a time when those relationships were imperative. Since his time being in a wheelchair, Matt has experienced a turn-table of friends and has struggled through the isolation of a significantly altered social life.

Although Matt is very personable, because of his handicap, it is much more difficult for him to further develop friendly interactions.  “I call people 2-3 times and if they don’t return my call, I stop and figure it must not be worth my time.” Matt talks of the difficulty with finding a ride to attend a social gathering, a restaurant, or the movies.

His spinal cord injury has left him with minimal hand control, therefore requiring him to have an additional person to drive him in his wheelchair accessible van. “My parents are the people who drive me most of the time, and they are getting older.” The planning involved to execute something simple, and the necessary reliance on others, sometimes outweighs the effort to make and maintain friendships. Despite Matt’s significant effort to maximize his physical recovery potential, his adaptation to his lacking relationships is a continual battle.

Amos, 32 years old, has experienced similar hardships with his social connections. He talks of severe anxiety and depression that is associated with the loss of his physical function, loss of friendships, and a “whole new life.”

“I may have pushed them away, but they don’t understand what I am going through.”

Amos was injured in an automobile accident that resulted in a spinal cord injury leaving him with limited function of his hands and legs. “I was to be the best man in my best friend’s wedding, and I don’t even know when he got married.” Having had difficulty with his health since his spinal cord injury, has resulted in losing three of his best friends. “They just disappeared,” explains Amos.

Coping with the change in his identity has been his biggest struggle. Amos identified himself as a hard worker and an active weight lifter with many social networks, but his new body does not match his internal self. This has caused anger and sadness that created rifts with the very people he needs the most.  “I may have pushed them away, but they don’t understand what I am going through.” It seems that the only new friends he has made are people he has met in the hospital or in therapy who are going through similar hardships and changes. Not knowing how to feel comfortable in his new reality has made it difficult for Amos to have a life beyond those living a parallel life.

Although both of the previous men have struggled to find their home in a community, the opposite is true for Kathleen. “I have found that people are very kind,” she explains.

“This world can seem very curt, but the love, and generosity that I have experienced since my accident was something I was surprised by.”

Involved in an accident that left her with minimal ability to use her lower extremities for walking or standing, she has found a community that has embraced her new physical function. “This world can seem very curt, but the love, and generosity that I have experienced since my accident was something I was surprised by.” Kathleen depicts her relationships as deeper, more vulnerable and open. “At first, my friends weren’t sure how to act because I was in a wheelchair.” She has found that over time, they no longer see a wheelchair, just her. At the age of 60 she has learned that the superficial things like clothes, jewelry, having her hair perfect are just not important. She used to always be “done up” but has realized her friends “only see her” and that is the most important thing. Kathleen talks of the compassion and commitment that her children have shown. “We are the house that all the kids hang out at,” she explained. She has been surprised because the kids still come around, they laugh, have fun and “it’s like nothing happened.” Kathleen reports the hardest part about being injured is her relationship with her spouse. He has had to take on more of a caregiving role and financially her injury has taken a toll on them. “My husband is 14 years older than me and had dreams of moving to Florida and retiring.” She speaks of feeling bad about how his new caregiving responsibilities and financial expenses have affected their relationship and altered their retirement dreams. Despite this hardship, Kathleen says “We have to move on, that’s just what you do.” Where many of Kathleen’s relationships have grown and withstood the challenge of her injury, others have been precariously stressed.

We should take a moment to extend our time, commitment, and love to those who are in need of a friend or community.

Fortunately, many of us have not been through a life changing injury such as those mentioned above. Many of us have the ability to make and maintain relationships without more than the normal barriers of everyday life. For those of us who are this fortunate, we should take a moment to extend our time, commitment, and love to those who are in need of a friend or community. It is crucial for those of us who deal with people suffering from injuries to know the healing cannot happen through the physical alone. Having a place and an importance in a social stratum is essential to the continued development of social identity and self-worth. We say it takes a village. This village needs to go beyond the medical model. Meeting basic physiological needs are only the beginning. A willingness to be
vulnerable and open within these relationships and to allow them to grow and bloom is the key to strengthening this community of individuals.

How can we change the paradigm?

As a therapist working with people with varying degrees of disability, I have witnessed many of the hardships and similar accounts to what was expressed by Matt, Amos and Kathleen. I have seen individuals struggle through divorces, embrace a new baby, make new friends, find soul mates, lose friends, get married, all while they are finding their new normal in their new life. “It takes a village,” is what most people are raised to believe. Then why does it seem that society has such extremes as to how to cope with people with disability, to run away or overwhelm. How can we change this paradigm? How can we make it easier for these individuals to feel normal in this world? Next time I see someone in a wheelchair maybe I should ask for their phone number, get a coffee, share a book, or simply shake their hand and greet them with sincerity.

-Rachael Billingsley, PT, DPT, C/NDT