At the Nolan Law Group, advocacy is an important part of our mission. In addition to my work for our law firm, my volunteer position as board chair of the Brain Injury Association of Illinois (BIAIL), as well as board member of the Brain Injury Association of America, affords me many opportunities to act upon that part of our mission.
As part of my volunteer work with the BIAIL, I have the pleasure of bringing brain injury education, as well as information regarding the BIAIL’s programs and services, to various community groups. I enjoy the school and civic organizations that we visit, but I have a special place in my heart for the brain injury support groups from around our state. I just returned from a visit to one such group at a local rehabilitation hospital. In spite of all the challenges and barriers they face, I find most members of these support groups to be quite positive, motivated, and very compassionate and caring towards each other. They are trying to live as fully as possible in spite of their challenges. This group was no exception.
During our discussion on issues and resources related to brain injury, one gentleman talked about the challenges his son faces in making life choices with very limited resources. He used the term “life coach” to express what he believes his son needs in facing the future. I thought that was such an interesting choice of words – “life coach”. It’s a term that probably 10-15 years ago not many had heard of — or at least it was called something different. Today, there are countless self-help books, magazine articles, etc., on these life coaches. Many businesses consult with life coaches to enhance the quality of life, and thus work performance, of their employees. However, the idea of having a “life coach” after sustaining a catastrophic brain injury is an intriguing idea. Someone who is not just interested in getting you employed or “placed” but really helps the person decide what path may lead them to the greatest life satisfaction possible. Having been in rehabilitation for many years, I can confidently say that most of the rehab team members I’ve known and worked with are life coaches of sorts. That type of team spirit and support is what attracted me to, and kept me in, brain injury rehabilitation for so many years.
The gentleman at the support group, with great passion and eloquence, went on to explain what so many others touched by brain injury feel — how does one make the right choices for the future when choices and resources are limited? Also, a person after a severe brain injury, really may not be too sure who they are anymore. What do you do when you’ve completed your therapies and rehab, but are not able, be it cognitively or physically, to go back to what you may have been doing before? Many of us, especially in this economy, can relate. Millions of Americans are in the process of “re-inventing” themselves due to changed family circumstances, job loss, or simply, dissatisfaction with previous life choices. This devoted dad went on to explain that he did not feel qualified to make those choices for his son. “What if I steer him in the wrong direction?” he asked. “Do I just point him in a direction and hope for the best? When he stated that he felt too close to the situation to even offer an opinion, nearly all of the family members present indicated that was exactly how they felt.
The support group leader offered that a life coach is one who asks the right questions and is definitely not someone who just points you in a direction and hopes for the best. It is someone who is not afraid to give you honest feedback and hopes that you’re ready to receive it. It is someone who can offer you some choices that may give you the best chance for life satisfaction. In our quest to provide our patients with individualized and appropriate services and direction, those of us in the field of rehab have struggled with the many constraints and barriers we face from the various payor sources, government programs, etc. Most team members I’ve worked with routinely expressed frustration with the so-called “system” that puts up some of those barriers. Other barriers come from society and our own attitudes towards disability. There are people out there that just don’t want to give someone a chance, or are afraid, or unwilling, to make the accommodations necessary to at least give someone an opportunity to try. It is also important for the person with brain injury to be as open as possible to options, suggestions and, especially, support of those around them. As the specialty of brain injury has evolved, so have our perspectives on what someone may or may not be able to achieve. From my own experience, I’ve seen countless people who were told they would never be able to do something again, prove that statement wrong — and in a big way! The ability of people to rise above their circumstances always amazes me. In my own support group, each month someone tells us that they were supposed to be a “vegetable” (and, oh, how I hate that word!) but asks us, “Do I look like a vegetable to you?” We all laugh but know exactly what is meant. Some support group members talked about seeing a job coach or vocational counselor. Any sort of employment or placement, for any length of time, may be considered a so-called “success”. Is it, though? Not many in the support group I attended that evening thought so.
This particular group gave me food for thought. Look for BIAIL to be addressing this “life coach” issue at a future educational conference. In the meantime, I’m looking forward to bringing it up with my own support group to get their views. I believe it’s a great idea and something for all of us who are advocates for persons with disabilities, brain injury or otherwise, to ponder. Brain injury is for the rest of your life and those we serve deserve to live each day to the fullest and with the greatest satisfaction possible.