Recently a group of local TBI survivors were asked what they would like others to know about them and their experiences.  Here are their top five answers.

1. More awareness is key

The most common answer amongst the young adults interviewed related to awareness.  What a brain injury is and isn’t.  How it changes a person’s life and what stays the same.  Causes and effects, and so on.  Brain injuries are often hidden disabilities, and what is hidden is frequently ignored.

2. A brain injury doesn’t change everything

Closely tied with awareness of brain injuries overall is wanting people to understand that a brain injury does not equal complete loss of cognitive abilities.  While there are changes to cognitive functions because of the injury, TBI survivors would like others to know that not all is lost.

3. The need to be accepted and understood

The third level of Maslow’s hierarchy of needs encompasses love and belonging.  All people share these needs and those with TBIs are no different. Not only do they seek acceptance, but also understanding. This comes from the awareness other people have of the nature of TBIs as well as the understanding that a brain injury doesn’t change everything.  Each survivor is unique and wants to be understood and accepted as such.

4. We want to contribute to society

Also like everyone else, TBI survivors have a strong desire to contribute to society.  They want to find meaningful work and feel as if they are needed.  This is no different than anyone else looking to find their place in the world.  The only difference is that people with brain injuries once thought their life was going in one direction. Whereas now they have to re-figure out how they will be useful and needed again post-injury.

5. We are the same as anyone else

The one overarching theme that ties everything together is the assertion that people living with a TBI are just like everyone else. And jumping off of that, they want to be treated like everyone else.  Every human being has physical, emotional, social, and other needs.  Everyone wants to be loved and everyone wants to love.  Everyone has goals they are seeking to achieve and desires they want to fulfill in their lifetime.  A TBI survivor is no different.  Just like everyone else, they are deserving of respect and being treated with the dignity of any other person.

While TBI survivors are all unique individuals, they do share commonalities, both within the circle of other survivors and with people who have not had a brain injury.  These are just the top five things a group of local survivors would like you to know about their lives and experiences.

Dear friends,

Hello and welcome to this month’s issue of The Survivor, the official e-newsletter of Villa Licci. We thank you for supporting our unique mission and for joining us in creating and cultivating a residential community for adult survivors of traumatic brain injury. Below you will find a roundup of recent blog posts, upcoming events, notable happenings, and more.As we transition into fall, we are looking forward to community events spreading awareness about the needs of TBI survivors and what those in the community can do to help support Villa Licci. Please share this newsletter with your family and friends and help to spread the mission of Villa Licci!

If you have any questions or would like to share your ideas, please feel free to reach out to me.

Richard Sontag

Executive Director
Villa Licci

My accident occurred in the fall of 2000.  I was an apprentice for a brick laying company and fell from scaffolding 10 ft. onto a concrete pad.  I acquired a traumatic brain injury along with other minor injuries.  It has been a long, difficult recovery to my new normal.  I was engaged and working toward a job that I really enjoyed.  Now I must face my new life and struggles.  Here are some of the things I struggle with.

The greatest difficulties that arise to me are time management, staying on track and keeping focused. I’m sure there are literally dozens if not hundreds of flaws that could be pointed out in me, but I was writing about the flaws that other survivors might have experienced, and I can just about guarantee every TBI survivor has experienced at least two of the three of these.

Time management is not a tough one to fix.  It is a pain, but it isn’t impossible.  All you need is an annoying alarm or a nagging loved one (alarm preferred) and you’re ready to go.  Set it to go off early to give yourself extra time, if you’re slow.  Always mind it and try to be Johnny or Jenny-on-the-spot.

Next, staying on track.  Some non-brain injured people have problems with this one.  Take for example The National Monument of Scotland. It was meant for those who died in the war against Napoleon in the century of 1900. Ground broke in 1826 to commemorate the brave Scotsmen who bled and died fighting Napoleon.  As funds started to trickle out so did the pride and patriotism of the countrymen.  They didn’t have the money at the time to finish it.  Instead of finishing it later, they just left it.  It sits unfinished to this day.  Had they stayed on track, instead of a monument known as an epic failure it would have been a monument of pride for the Scotsmen from the beginning.

Keeping your focus can be difficult when you have a TBI. Sometimes my TBI makes it seem like I have a hundred different things running through my brain.  I’m using all my might just to hold onto that singular thought.  As a cruel joke, someone has switched that thought and put a stupid water balloon in its place and now I’m left with a confused look on my face, a wet shirt, and not even the remnants of a water balloon because it was just a metaphor.

We’d like to thank Robb for taking the time to write out in his own words what it is like to be a TBI survivor and some of the long-term effects he deals with every day.

There are five steps to becoming a resident of Villa Licci.

1. Initial Inquiry

Someone reaches out through our website, social media, local support groups, or various other means to inquire about becoming a resident. Or someone is referred to us from the local TBI community and requests more information.

2. Written Application

Each potential resident fills out an extensive application sharing basic information and including all relevant medical information about their TBI and how they manage their daily tasks.  This application will be sent out after the initial inquiry.

3. Application Review

The resident assessment committee reviews all applications to determine if Villa Licci is the appropriate residence for the applicant. This part of the process includes interviewing the applicant, their current caregivers and case managers, and potentially their employers and medical providers.

4. Probationary Period

All approved applicants must complete a mandatory probationary period of at least ninety (90) days during which adherence to community standards will be evaluated. Throughout this time, they will be able to participate in all community activities and events, essentially living with all the benefits of a full resident.

5. Permanent Residency

Once a resident has passed the probationary period, he/she will still be expected to adhere to community standards.  At this point, a resident could be dismissed only for significant reasons, including violent behavior, harassment of other residents, use/abuse of illegal substances, or engaging in criminal activity. Residents who are at risk of being dismissed will be notified of the behavior or activity that is placing them at risk and a course of action will be created to fix the problem. However, safety of all residents is a priority, so dismissal may be necessary to maintain the well-being of the overall community.

 

Once the first residential building is complete and we are ready to accept applications, we will notify our newsletter subscribers and anyone who has requested more information.

 

Sign Up for our Newsletter     Join the Resident Inquiry Waitlist

Dear friends,

Hello and welcome to the third issue of The Survivor, the official e-newsletter of Villa Licci. We thank you for supporting our unique mission and for joining us in creating and cultivating a residential community for adult survivors of traumatic brain injury. Below you will find a roundup of recent blog posts, upcoming events, notable happenings, and more.

Please share this newsletter with your family and friends and help to spread the mission of Villa Licci!

If you have any questions or would like to share your ideas, please feel free to reach out to me.

Richard Sontag

Executive Director
Villa Licci

While there are many reasons a survivor of a traumatic brain injury would choose to join a support group, here are our top six:

6. Learn strategies from others on how to live with TBI

Beyond the medical and rehabilitation worlds – which also offer support in how to adjust to life after a TBI – a TBI support group can offer even more practical strategies for survivors with brain injuries.  Support groups offer a chance for survivors to help each other and often times it is better to learn from someone who is going through similar struggles.  Support groups offer inside perspectives and peer-to-peer strategies and coping skills on how to live after suffering a TBI.

5. Gain inspiration from others who have been on your journey and have had some success

Support groups are comprised of people at all stages in the TBI recovery journey. Therefore, besides walking alongside others at the same stage, a TBI survivor can see others who are further along the road and gain inspiration and encouragement.  Seeing someone else who has overcome similar challenges can be the catalyst and motivation needed for a survivor to maintain a positive outlook on their own life.

4. Know that there is someone there for you to talk to

Attending a group regularly shows TBI survivors that there are others there who will listen when they struggle and offer support when needed. Support groups create an environment where sharing is encouraged and welcome. Knowing there are others out there who will listen when a compassionate ear is needed can alleviate some anxiety over the entire situation, which leads directly into the next reason.

3. Minimize anxiety

A traumatic brain injury can cause many anxieties. It is a huge change that affects all aspects of life: physical, social, emotional, and more.  It can cause great stress and a huge sense of loneliness, which only exacerbates any anxieties.  Attending a support group shows survivors they are not alone and what they are going through is not unusual.  The supportive environment of these groups is intentionally created to ease anxieties and help TBI survivors feel comfortable about themselves and their new situations.

2. Make new friends who understand you

One of the major struggles after a TBI is navigating both old and new relationships.  The dynamics of many existing relationships change after a TBI and forming new relationships can be a challenge.  Within a support group there are people who already recognize the unique situations and perspectives of life after a TBI.  Whereas old friendships may drop off, these new friendships that develop are with others who understand on a deeper level what it means to survive a traumatic brain injury.  These new friendships – outside of extended family or medical professionals – are vitally important to creating the “new normal” after a TBI.

1. Feel less alone

A common thread runs through all the above reasons and culminates in this most important reason. Joining a support group helps survivors feel they are less alone.  According to research from professors at Brigham Young University, loneliness can have more deadly outcomes than alcohol abuse, excessive smoking, or obesity.  Anything a TBI survivor can do to feel less alone will increase their long-term survival and overall quality of life.

 

While there are numerous reasons for joining a traumatic brain injury support group that could be added to this list, these are our top six.  What other reasons would you add?  Click the link below to send us a comment!

The family-like environment at Villa Licci will be designed to include shared common spaces and provide planned social opportunities.  This is intended to nurture friendships which contribute to an overall sense of belonging and well-being for all residents. Villa Licci will be a pioneer in providing TBI survivors with a residential setting in which they can find and form a sense of community and belonging.

Phase I

The first phase of this project was to identify and acquire property that would meet the planned development needs. In April 2021, a 13-acre property located in central Indiana was purchased. Funded by a group of parents of TBI survivors, this completed the initial phase.

Phase II

The next phase of this project begins with the selection of the site development partners for architecture, engineering, and construction. It will conclude with the completion of the initial community residence.  This residence will feature the first residential building which contains one- and two-bedroom apartments.  In addition, a gathering room, common space, and a chapel are in the plans. Around the community, there will be walking paths, gardens, recreation spaces, and a pond, encouraging residents to partake in outdoor and physical activities.

Apartments are intended to be equipped with various private living features such as a kitchen, laundry facilities, a living room, and an outdoor space. Because of the vast spectrum of TBI-related disabilities, each unit will be outfitted to best suit both the abilities of the survivors and the challenges they face.  This will include wheelchair accessible rooms and easily maneuverable spaces. We are currently in the beginning stages of this phase.

Phases III and IV

These future phases will consist of expanding the community by erecting a second residential building, adding a community center, and enhancing the landscaping for the residents to enjoy. The timeline for these phases is to be determined.

Over the next five years, Villa Licci will continue its capital campaign, break ground, and begin construction on its first residence. The target move-in date for the first residents is 2027. Would you please consider contributing towards this capital campaign and ensuring these TBI survivors have a community to belong to?

 

Donate to Villa Licci

Dear friends,

Hello and welcome to the second issue of The Survivor, the official e-newsletter of Villa Licci. We thank you for supporting our unique mission and for joining us in creating and cultivating a residential community for adult survivors of traumatic brain injury. Below you will find a roundup of recent blog posts, upcoming events, notable happenings, and more.

Please share this newsletter with your family and friends and help to spread the mission of Villa Licci!

If you have any questions or would like to share your ideas, please feel free to reach out to me.

Richard Sontag

Executive Director
Villa Licci

Did you know that approximately 2% of Americans live with the effects of a brain injury?  In Indiana alone, there are over 130,000 individuals living with a long-term disability due to a traumatic brain injury (TBI).  While everyone has a unique story, there are many common threads that bind them together. For most, the lives of these survivors changed dramatically after their accident with profound implications for their mental, functional, and emotional well-being. The fact that they also remember life before their accidents adds further emotional distress and creates a longing to regain what they know they have lost.

Individual Effects

A TBI may result in mild, moderate, or severe changes in one or more abilities, such as cognition, speech, physical functions, and social behavior. This affects the overall quality of life for these survivors and often results in great loss – loss of jobs, loss of friendships, loss of self-worth, and loss of community.

Studies of mild to severe brain injury survivors show only 34% are stably employed after three years and approximately 60% of moderate to severe TBI survivors do not return to work. Of those who do, most are not able to return to their former line of work or are unable to return permanently.

TBI survivors often feel isolated and lonely and want more out of life. They feel constrained, however, by their inability to follow conversations, to remember things, and to do physical activities that were once effortless. They feel lonely but often reluctant to leave the house, so they withdraw into their own world.

Due to their brain injuries, many of the survivors’ relationships are greatly impacted. In families, changes in roles and responsibilities can add stress and increase tension among members. Relationships with friends, coworkers, community members, even family members can become difficult to sustain. This can lead to or exacerbate already existing depression, anxiety, and other mental stressors.

Community Effects

When someone suffers from a TBI, the entire family is dramatically affected. Studies show that caregivers and other family members of people who have suffered a brain injury typically experience feelings of distress, anxiety, anger, and depression. These family members are often concerned about the future and what will happen when they are gone – namely where can their loved one live semi-independently and with purpose.

However, this can present a challenge when many TBI survivors need help throughout their day to perform even basic tasks and aren’t always able to receive it. They do often live at home with their parents who may work or have little time to provide appropriate caregiving, or they live in care facilities that are not designed to meet their unique needs.

People with a TBI differ from those with other disorders and disabilities that seem to have the same affects in that a 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.

Why we need Villa Licci

Villa Licci strives to bridge this gap of loss by creating a residential community encouraging friendship, cultivating independence, and providing a strong support structure.  While it can never fully “bring back” what once was, it can help survivors transition to a new and fulfilling life with purpose and meaning.

Won’t you consider supporting this dream and helping it become reality?

Donate to Villa Licci today!

Dear friends,

Hello and welcome to The Survivor, the official e-newsletter of Villa Licci. This is the first edition of what will begin as a monthly issue. We look forward to sharing with you important information about our unique mission and hope you will join us in creating and cultivating a residential community for adult survivors of traumatic brain injury. Below you will find a roundup of recent blog posts, upcoming events, notable happenings, and more.

Please share this newsletter with your family and friends and help to spread the mission of Villa Licci!

If you have any questions or would like to share your ideas, please feel free to reach out to me.

Richard Sontag

Executive Director
Villa Licci