Twenty-three years ago, when Teah Beglau was sixteen, she suffered a Traumatic Brain Injury. As is well known, many areas of life are disrupted from a brain injury. One area, however, that is often unknown by the public involves the social life of survivors after returning home from the hospital. All of her friendships were lost after she returned home from her own rehabilitation. Being a member of several brain injury support groups on Facebook has brought to her attention that it is one of the most common outcomes for a brain injury survivor.
Knowing this motivated her to produce a video to help stop this from happening. Her goal is for this video to be available to hospitals who can provide it to both friends and families of brain injury survivors before they return home from the hospital. It is to prepare the loved ones for the shocking outcomes and changes the brain injury survivor might have acquired. It gives an insight into things to help them adjust and handle the negativity that will come.
She has given us permission to share this video to the Villa Licci community in the hopes that it will spread this knowledge to anyone with a TBI survivor in their life. She strongly believes that if watched by others before the survivor begins to re-socialize as a different person it will be easier for loved ones to accept the “new” person. Friendships will continue and their life-long recovery will be less hurtful with the continued needed support.
Kevin Pearce, former professional snowboarder, is an inspirational public speaker and co-founder of LoveYourBrain LLC. He is an advocate for the prevention of brain injuries and the promotion of a brain healthy lifestyle. Kevin catapulted onto the professional snowboarding stage in 2005 at age 18, rising above others in his division and quickly becoming the athlete to watch in the ever-evolving sport. In the 2009 Winter X Games, Kevin brought home the Silver Medal for Superpipe, making him a strong contender to win Gold in the 2010 Vancouver Olympics. On December 31, 2009, while training for the Olympic trials in Park City, Utah, Kevin suffered a severe traumatic brain injury. Although he was wearing a helmet at the time, the injury left Kevin in critical condition and in a medically induced coma that would change his life forever. Post-accident, Kevin has become a passionate advocate for the prevention of brain injuries and the promotion of a brain healthy lifestyle for all people.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx
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.
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:
The eighth annual Brain Bolt 5K run/walk/wheel was held on October 7, 2023. This event benefits the Neurosurgery Foundation at Goodman Campbell and their work to research, treat and care for patients with traumatic brain and spine injuries.
The event was geared towards people of all ages and abilities – with a special course designed just for TBI survivors with mobility issues.
Villa Licci was present at the event through sponsorship and manning a booth with information about our mission and vision to serve TBI survivors. Many of the survivors who participated are potential future residents of Villa Licci and active in the support groups around the area.
Other informational booths included GCBS’ MEGA Brain – an inflatable, interactive, walk-through exhibit, as well as specialists from throughout the region educating attendees on various TBI-related issues, including prevention and treatment.
On the surface, Villa Licci might look similar to other residences for people with cognitive challenges. However, there are distinct differences that make Villa Licci truly unique.
Villa Licci is first and foremost a residential community of adults living with the challenges that follow a brain injury. There are no other residences serving this exact population anywhere in the country. Most other residences cater to those with developmental disabilities. While the founders of Villa Licci recognize the need for services for all, they chose to focus on the unique challenges facing brain injury survivors.
People with a TBI differ from those with other developmental and cognitive disorders in that TBI is an acquired injury. Each TBI survivor was living their life a certain way and now they must live differently due to their injury. This creates a dramatic “before and after” to their lives, and many lament the loss of the life they once had, which now seems unattainable.
TBI survivors have a need to be connected to other survivors to share the uniqueness of their situation that others who haven’t had a TBI or who have different cognitive issues just cannot understand.
Villa Licci will provide the opportunity for medically stable adults to live with minimal supervision while maintaining personal waivers and services. Although the goal is semi-independent living, there will be organized community events and experiences.
This community seeks to enhance each resident’s quality of life through shared experiences and relationships. The residential and community buildings, along with the landscaping and site plan, are designed with common areas both inside and outdoors where residents can exercise, eat, socialize, and relax together.
Villa Licci will not be a skilled nursing facility (nursing home) or a medical facility. In addition, while residents will be able to retain all their rehabilitation services, and relationships with their medical team, Villa Licci will not be a rehab center nor provide these services directly.
In staying true to our mission to provide safe and independent housing, fellowship, and dignity in a faith-centered environment for adult survivors of traumatic brain injuries, Villa Licci is truly providing a unique service for the TBI community.
As word gets out about Villa Licci and people reach out to us with questions, we have compiled a list below with the most frequently asked questions (and answers!). These are the ones that come in most often to our comment line.
1. When will Villa Licci open?
The current timeline has the groundbreaking ceremony planned for late 2025 with anticipated move in sometime in 2027
If you would like to help us make this dream a reality faster, please considering making a tax-deductible donation
2. How does a person get on the waitlist?
If you would like to be informed when Villa Licci is accepting applications for residency, please fill out the Contact Us form. In the “How can we help you?” box, please say you are interested in being notified when applications are available. We will then send you an email with all the information once it is ready.
3. Is this for adults only? What is an adult?
This residence will be for adults only. An adult is anyone over the age of 18 who experienced a TBI after the age of 16.
4. How much will an apartment cost?
This has yet to be determined and will be based upon various factors. There may be opportunities for government assistance, such as a TBI waiver, that could help offset rental costs.
The goal is to have the building itself paid in full so that we can offer a reduced monthly rent – affordable to most families.
5. Is Villa Licci in other states? Are there similar homes in other states?
To the best of our knowledge, Villa Licci will be the first of its kind in the United States. While we have larger future plans to expand to other states, the current focus is on building the first residential community. This residence will be located in Central Indiana.
6. Is Villa Licci a home for people with developmental disabilities or other cognitive issues (for example, Down syndrome, autism, and more)?
Villa Licci is a residence for adult survivors of traumatic brain injuries (TBIs). This may include someone with an acquired brain injury, such as a stroke.
Currently, no other residential community in the country exists solely for those with traumatic brain injuries. People with a TBI differ from those with other developmental and cognitive disorders in that TBI is an acquired injury. Each TBI survivor was living their life a certain way and now they must live differently due to their injury. This creates a dramatic “before and after” to their lives, and many lament the loss of the life they once had, which now seems unattainable.
TBI survivors need to be connected to other survivors to share the uniqueness of their situation that others who haven’t had a TBI or who have different cognitive issues just cannot understand.
In October 2012, I incurred a traumatic brain injury after having spun out backwards into an oncoming pickup truck. I do not remember much about the accident itself but; I do remember waking up daily in a hospital bed months after the event, not knowing how, exactly I got there but understanding that I had been involved in some sort of serious car wreck.
Ever since then my life has changed quite dramatically. It has been very nearly nonstop recovery-focused. I have gone through extensive physical, occupational and, speech therapy. While the brain injury was the most life-threatening one I received, it was not the most debilitating. That injury was the one to my legs (in particular the left leg). While I had once been an extraordinarily active person running cross country and track & field in school as well as even biking quite regularly as an adult (even to/from work), I can no longer engage in such pursuits and am restricted to a wheelchair due to those aforementioned injuries.
Socially, I am now estranged from the vast majority of my old friends. Though I do have new ones as united through our common experience of having suffered brain injuries, I greatly miss my old, more long-time friends as well as the regular social activities I shared with them. Fortunately, I can still connect with them via online communication but; it’s just not the same.
While I was once working as an educator in the non-profit environment, I found great fulfillment in helping others achieve their dreams as well as helping them make positive impacts for their families. Now, though, as I can no longer work as easily or readily as I once did, I greatly miss that old vocation of mine. Nevertheless, I am still thinking of contacting a nearby college or university and seeing if I can work for them as a satellite or distance tutor. I look forward to the chance to serve others in a similar manner as I once did.
In spite of all of the terrible things that have happened to me after and as a result of that 2012 car wreck, I am still trying to find and ride the silver lining. I would extraordinarily, greatly appreciate the chance to do so in the company of my newfound friends, though.
– Ryan Quick is active in the TBI survivor community in Indianapolis.
