One of the issues TBI survivors face after the initial recovery phase is that many of their struggles are not visible upon first glance. Emotional dysregulation, executive dysfunction, short-term memory loss, cognitive delays, and more are not noticeable to the naked eye or the casual observer. Yet, it is often these hidden disabilities that cause the most pain and struggle for these survivors.

If someone has a broken leg and is using a wheelchair, or is blind and accompanied by a guide dog, it is readily apparent to other people that a person has different needs.  A business welcoming wheelchair users would have ramps and accessible doors, and people often show more patience when encountering someone on crutches who may be walking slower. But what happens when the disability isn’t visible, and only the actions that reflect that disability are seen?  And when those actions are not accepted with as much grace and patience as a physical struggle?

The reactions of other people can often cause more emotional distress to a survivor already coping with their new limitations or issues.  Oftentimes, all they need is a little bit of patience and a little bit of support.

One organization is striving towards making the invisible more visible, with a simple sunflower.  The Hidden Disabilities Sunflower was created by personnel at London’s Gatwick Airport who recognized that people with hidden disabilities may need a little extra support while traveling just like those with visible disabilities.

Since 2016, the use of a green lanyard with yellow sunflowers worn by those who discreetly want to share their needs has spread from London throughout the world.  This sunflower lanyard is a way to visually share that a little additional help, support, or time may be needed by the wearer to complete the expected tasks. Airports, rail lines, supermarkets, entertainment venues, and more have partnered with this organization to support their patrons and offer training to their employees so they can best serve their lanyard-wearing visitors.

For more information, please click the button below.

 

In March, the Brian Injury Association of America (BIAA) submitted a position paper calling for the Centers for Disease Control and Prevention (CDC) along with the Centers for Medicare and Medicaid Services (CMS) to designate a brain injury as a chronic condition.  In addition, it calls for a brain injury to be recognized, treated, and covered as chronic.  This would be a huge benefit to the survivors Villa Licci serves and could impact the services and programs we are striving to provide.

When a brain injury is treated as an acute or one-time condition, treatments and services are limited to those classifications.  This includes rehabilitation services, medical treatments, insurance coverage, and other benefits and supports. It means that once a person is supposedly healed – or reaches a certain point in their recovery – their access to these services diminishes.  If a person continues to suffer from long-term effects of their brain injury, they can face difficulties in accessing the help they need.

One of the reasons for a lack of awareness about the chronic nature of brain injuries is that some symptoms and effects are not noticeable right away.  A person may seem to recover fairly well, but then have a relapse. Or, they may only show other symptoms later in life that can be traced back to their TBI.  These can include headaches, fatigue, memory issues, depression and other mental issues, and physical ailments, among others.

By classifying brain injury as a chronic condition, the CDC and CMS can use their combined reach to educate both individuals and organizations that serve these survivors so as to better assist and improve their quality of life.

It could then release more funding to helping those living with chronic impairment from their TBI, in the same way that other chronic conditions receive funding and resources.  It would be our hope that some of this funding would be to help survivors find quality living situations, such as Villa Licci, so they can continue their recovery in a stable, supportive community.

 

Recently, we heard from a TBI survivor who wanted to share her story in the hopes of raising awareness about what life is like for a survivor.  She is a prospective future resident of Villa Licci and a member of local support groups.  Here is her story and mask as part of a project coordinated by Unmasking Brain Injury.

After lunch one Sunday, my niece wanted to cheer me up for my birthday, since my dad had died seven months prior. My niece was going straight on a green light when a lady disregarded her own red light and turned right in front of us. Our front passenger side hit her passenger side. When I woke up in a haze, I couldn’t speak or move.

I later found out that I almost died in the wreck and from misdiagnoses from doctors. From the hospital I was transferred to the Rehabilitation Hospital of Kokomo, then transferred to a “rehab unit” in a nursing home, from which I was released a about a week later. Neurologists could not explain my lack of balance, and eye tracking problem because Indiana did not have doctors who specialized in cerebellum disorders which causes balance issues, nystagmus and other problems. After thirteen years, on April 5, 2018, a Neuro-Ophthalmologist diagnosed me with a severe brain injury that includes cerebellum damage, Trochlear nerve palsy, Trigeminal neuralgia and other injuries. That doctor could not understand how my brain injury was misdiagnosed and how I was not hospitalized for at least a couple months.

My mask represents two different sides (lives) of me: my life prior to the car wreck and my life now.

The blue side was my life prior to the car wreck. I was living in Bloomington IN, where I started to work on a doctoral program (Ph.D.) in Health Behavior (now called Public Health) and Family Studies as well as working as an Associate Instructor (A.I.) at Indiana University (IU). I enjoyed life on a Big Ten campus, where I had earned my master’s degree.  I liked living in Bloomington with various cultures and being part of the IU community.  I loved to go out with friends, was very physically active and attended various community and cultural events. I was involved in my church. I had good health insurance through IU and I was relatively healthy.

The red side is my life now. Everything changed in an instant. Sadly, my whole world as I knew it, was gone. I am not able to live in Bloomington, attend IU, work, or be with friends and colleagues. I moved back home to Russiaville, IN, to live with my mom. I am not as physically active as before. I am able to ride my recumbent bicycle since I am not able to ride my old two wheeled bicycle due to my balance. I lost most of my friends and I miss being physically and socially active. It is very difficult and lonely, living with a rare “invisible injury” such as a brain injury.  No one can see my injuries and still no specialist understands my disorder like they do in the Northeast.

To learn more about some of Maria’s struggles post-injury, and how she is helping other survivors, read this article from the IU School of Medicine.

Pictures of Maria and her friends and family:

To learn more about the mask project and hear from other survivors and their family members, please see our previous story: https://villalicci.org/unmasking-brain-injury/.

A new study out of The Ohio State University shows that traumatic brain injury (TBI) recovery is not as stable as previously thought.  The effects of a TBI are felt long after the initial injury and rehabilitation period, including continued declines in many individuals.  This has a lasting effect on the quality of life of TBI survivors, and supports the need for communities such as Villa Licci.

One of the key researchers shared, “A lot of folks with brain injuries are trying to remain in their communities and live independently, and it’s critical that those who can help them do that have a full understanding of how their brain injury affects their actions and abilities so they can provide appropriate accommodations.”

Knowing the needs of the individuals who will be served by Villa Licci and recognizing where they might continue to struggle and need extra support will be integral to the success of our budding community.

To read more about this new study, please click here: