February is often referred to as the “month of love.”  Valentine’s Day is marketed as the most romantic day of the year and is also one of the most popular days to get engaged.  Society is inundated with movies about love and commercials about what to buy for the ones you love.

The Hallmark Channel is known for its movies about love and relationship. One movie recently featured a woman who had suffered from a TBI.  Her character was a peripheral one – not one of the leads.  All that was shared of her story was she had an injury that landed her in the hospital with a TBI and then she worked really hard for a couple of years to overcome everything.  Her life had basically returned to “normal” and there wasn’t evidence of any long-term effects of her TBI. She was remarried and co-parenting her daughter with her ex. And everyone lived happily ever after.

However, life is not a Hallmark movie, and many people do suffer from long-term effects of their TBI.  Sometimes these affect their relationships, both platonic and romantic.  Reading many of the survivor stories from individuals associated with Villa Licci, you will discover that all of them had relationships that changed after their TBI.

Some lost romantic partners or spouses, others found friends slowly stopped coming around.  Still more found that the dynamics within their families changed.

A TBI often affects not only physical abilities but also cognitive and emotional ones as well.  The ability to sustain a conversation, to remember important dates and events, to avoid mood swings and angry outbursts are all good characteristics to have to sustain positive and lasting relationships.  Unfortunately, these are often compromised by a TBI and its after-effects.

Loved ones of someone who has suffered a TBI often share how they have to get to know the person again, since much has changed.  They say it seems as if the person they once knew was lost and they don’t know if they’ll ever come back.

The survivor often feels that way, too.  They may remember who they were and struggle to become that person again.  And they have to adapt to the way those in their lives interact with them after their injury.

Unfortunately, some relationships are lost in the months and years following a TBI.

But relationships are not doomed to fail. And the loss is not inevitable. A study in the journal NeuroRehabilitation found that people with a TBI are not at greater risk for divorce relative to the general population.¹ Even though it is hard work to maintain a strong relationship, it can and does happen.

During this month of love, we should all take time to ge grateful for all the relationships in our lives, and to make more effort to nurture those that are struggling.  The community of Villa Licci will be a place of support for survivors to grow in relationship with others and to form new relationships with others in the community.

 

1. Kreutzer, J. S., Marwitz, J. H., Hsu, N., Williams, K., & Riddick, A. (2007). Marital stability after brain injury: An investigation and analysis. NeuroRehabilitation, 22(1), 53-59.

Many times, when focusing on life after a TBI, the discussion and research concentrate on the physical and cognitive effects.  Of late, however, there has been more and more research into the social and emotional effects of a traumatic brain injury.  The results are very eye-opening.

Friends and Family are there in the beginning

In the first weeks after an injury, months and if lucky, year or so, friends and family are consistently reaching out to the families and survivors of Traumatic Brain Injury. They check in with the survivor to see how they are feeling and where they are in their recovery. Some may even offer to take them out to do something that they may have enjoyed in the past.

Most often, these friends and family come to realize that this person may not be the same as they were before their injury, and they slowly move on. Maybe it’s because it’s too difficult for them to face, or maybe it’s just the timing in people’s lives. Nonetheless, the TBI survivor is left without interaction with his/her friends and family who once were there for them.

In addition, some of these people make unkind comments in passing, such as “when will he/she be normal again”, or “just put him/her in a home with people like him/her”.  They have no idea that their words are hurtful, and they may even think they are helping.

But words do hurt, as does the loss of the community the survivor once enjoyed.

What comes next?

And so, the survivor continues attending therapies, working towards that goal of becoming the person they were before their injury. But as time moves on, they realize things will never be as they were.

Slowly, depression creeps in and they become more isolated.

A study out of Harvard showcases the fact that loneliness is more deadly than morbid obesity and other health risks that are more often discussed and showcased. There is a theory – the “RAM Model” – which suggests people who find themselves lonely require cognitive, behavioral, and interpersonal resources. However, many TBI survivors don’t have access to resources like these.

In fact, in many areas they are nonexistent.

What if…

What if there was a place where a survivor could easily find all of these resources?  What if there was a residence for these adults to break out of their loneliness and form community?

It is our hope that Villa Licci would help these individuals to find a place they can call home.  To be around others who are going through the same thing as they are and can be support to each other.   Lessening the feeling of loneliness and isolation so they can improve their overall outlook and mental health.

Like many others this time of year, a group of over 100 TBI survivors and their families recently gathered for a festive Christmas party.

There was food, of course, a meal for everyone to enjoy together.  In addition, everyone had the chance to help create dessert as they had fun decorating Christmas cookies.

Various forms of entertainment included a caricaturist, a photo booth, and visits from Mr. and Mrs. Claus.  There was even a DJ playing festive and fun music throughout the evening.

Perhaps the most fun was had out on the dance floor, just enjoying being with each other.  The Macarena was one of the biggest hits of the night. Those who were able even helped take those in wheelchairs out for a musical spin so all could participate, regardless of mobility needs.

Overall, it was a wonderful evening of friends, food, and fun.  We know many survivors are eagerly anticipating the day when they will be living closer together in the Villi Licci community so more spontaneous dance parties and get-togethers will be possible.

 

This past summer, we dropped our son off at summer camp.  What is a typical and recurring experience for many children and their parents was a new experience for our family.  You see, unlike the thousands of children who attend various types of camps each year, our son is an adult. And this was not your run-of-the-mill summer camp.

A special kind of camp

Our son and several of his peers attended a camp designed for individuals living with the effects of a Traumatic Brain Injury (TBI).  This camp is offered every summer for one week.  While at this camp, these survivors have the opportunity to experience life as they remember living before their injury. They live as independently as their circumstances allow them and have experiences that otherwise may not be an option for them in their everyday lives.

Setting up for success

Each camper is paired with a volunteer assistant for the week. However the camp is specifically designed to allow each camper to be as independent as possible with assistance from their volunteer only when asked.  This aides the survivors in testing their limits and capabilities in a safe environment with support when necessary and often helps facilitate gaining new skills or regaining old ones.

Since a TBI often affects executive functioning, tasks like initiation and planning can be challenging.  To support these needs, the camp displays a large calendar, showing all the daily and weekly activities. As it is always visible, campers can refer to it whenever necessary to decide upon or remember their next activity.

Some of the camp activities include fishing, canoeing, a climbing wall, zip lining, boating, biking, and a ropes course.  All of the activities are adapted to the needs of each camper, so they are able to participate to the best of their abilities.  Our son particularly enjoyed the ropes course. Although he said it was the most difficult activity he tried, he wanted to challenge himself.  He also has always enjoyed fishing, so to be able to participate in that at camp with all his friends was another of his favorites.

Speaking of the camp activities, each camper participates in whichever activities are of interest to them.  This allows them to make most of their own choices throughout the week, something which has been taken away from them in many cases. Although there is a structure in place, it exists without making the survivors feel as though they are coddled or treated as not capable.

By the end of the week, it was evident that the higher functioning survivors enjoyed helping their fellow campers when needed.  They worked together as a community, using whatever skills, gifts, and talents they brought to the team. One major benefit to this was they no longer had time to focus on themselves and their shortcomings.  It also opened their world to see others experiencing the same challenges.

Like all summer camps, this one did come to an end.  And, like many campers, these TBI survivors long to return.  They think about the independence they gained, the community they formed, and the fun they experienced and would love for it to happen again.

And what if it could happen again? Not just for one week each summer, but forever?

Creating the Villa Licci residence will give these adults living with TBIs a lifetime feeling of being at camp. Daily they’ll be creating community with those who are living the same experiences.  They’ll have more opportunities to help and support one another.  And they’ll be there encouraging each other to be more independent and live their best lives every day.

Will you help to make this dream a reality?

As you are preparing for the gift-giving season, or just for reference for future ideas, we have compiled a list of gift-giving ideas for the TBI survivor in your life.

Help with transportation

Since many TBI survivors cannot drive themselves, providing a way for them to get from place to place is very much appreciated.  This can be in the form of gift cards for Uber/other ride services. Or just offer to give a ride yourself.  This also provides a survivor with the gift of your time and presence.

Assistance with an outing

Along with general transportation is helping a survivor go out in the community.  This is not only fun but provides social interaction.  Think about what your friend or family member likes to do and craft an outing around that.  For some it could be as simple as a trip to the mall to wander around and window-shop or people-watch.  Another might like a sporting event or a concert.  A picnic somewhere outside, or a trip to a favorite restaurant is another idea. Maybe an outing for a mani-pedi would be enjoyable.  When in doubt, ask the survivor in your life what they would like to do!

Meals, snacks, and treats

Especially for someone living on their own, assistance with meals can be helpful and fun.  Gift cards to meal delivery services or a subscription to a meal kit service might be appreciated by someone who would rather cook and/or eat at home. A gift card to a restaurant, especially if transportation and company are included, might be better for someone who wants to go out.  Perhaps even stocking their pantry with favorite snacks, especially ones that are harder to find, or bringing over homemade treats for them to enjoy would be other options.

A phone call letting them know they aren’t alone

TBI survivors often feel disconnected from others.  This can be exacerbated during the holidays.  Something as simple as a phone call shows they are not alone and you are thinking of them.

Including them in your holiday festivities

While parties and gatherings aren’t for everyone, and the survivor in your life may not want to participate, knowing that their presence is wanted is a gift in and of itself.  Extending that invitation to a family party or a gathering of friends and then helping the survivor to feel comfortable there can seem simple but is no small gesture.  Making sure the venue is accessible for their physical disabilities, providing transportation to and from, ensuring there are foods available the survivor likes, allowing them to leave when they get tired and helping them get home safely.  These are all little gestures that can provide a big gift!

No matter what you decide to do, if a gift is given thoughtfully and with love, it is always appreciated.  But remember, the greatest gift is of time and presence, so keep that in mind when you are thinking of gifts for the loved ones in your life!

A concussion is sometimes thought of as a mild traumatic brain injury.  However, the effects are often serious and long-lasting.  When the symptoms continue longer than expected after an injury, this is known as “Post Concussion Syndrome.”

Any bump, blow, or jolt to the head can cause a concussion.  In addition, a hit to the body that causes the head and brain to move back and forth quickly can also cause a concussion. All of these situations can cause the brain to move inside the skull. This may result in injuries to the brain.

Symptoms of concussion include headaches, memory loss, loss of consciousness, difficulty thinking or concentration, nausea, blurry vision, sleep changes, and more.  When these symptoms last longer than a few weeks, a person may be diagnosed with Post Concussion Syndrome (PCS).

Researchers estimate that up to 30% of those who endure a concussion will also develop Post Concussion Syndrome. Those with PCS may have difficulty returning to normal activities or may have to make lifestyle changes to cope with their injuries. Treatment for PCS varies based upon the symptoms that occur.  For example, medicines may be used to treat headaches, rest may be prescribed for fatigue, and therapy may be recommended for depression and anxiety.  The most important treatments are time and patience.

Post Concussion Syndrome doesn’t usually last forever, but the long-term effects can be frustrating.  During the recovery period, it is also important to avoid further damage or re-injury, and to allow the brain time to fully heal. The brain is particularly sensitive to further damage during this recovery period.

When someone experiences a brain injury, many areas of their life can be affected.  One question that often comes up is how to explain the injury and the resulting disabilities to those around them.

Before that can be done, it is important to understand what a traumatic brain injury is. A traumatic brain injury (TBI) is basically an injury that affects how the brain works.  It is known as an acquired brain injury because it is caused by events that occur after birth, not something one is born with.

Trauma can occur from a blow to the head, falling and hitting one’s head, a loss of oxygen to the brain due to drowning, a loss of blood to the brain as in a stroke, or any other event that causes damage to the brain tissue.

Sometimes, full healing occurs, and a person recovers completely from their TBI.  Some others suffer from what is known as post-concussion syndrome for months.  And still others suffer irreversible damage that cause long-term, chronic, and or severe disabilities.

Disabilities from a brain injury can be categorized into 3 groups.

[column type=”1/3″]

Physical

• Headache
• Nausea
• Fatigue
• Speech problems
• Dizziness or loss of balance
• Sensory issues
• Hearing/vision issues
• Muscle weakness

[/column] [column type=”1/3″]

Cognitive

• Memory issues/loss
• Problems concentrating
• Trouble communicating
• Learning difficulties

[/column] [column type=”1/3″ last=”true”]

Emotional/Behavioral

• Mood changes/swings
• Depression
• Anxiety
• Agitation or combativeness
• Impulsivity
• Trouble controlling behavior

[/column]

 

Some of these disabilities are more visible than others, which is why being able to explain the disabilities can be key to further understanding.  It can also help those suffering from the long-term chronic effects of a TBI to receive the resources they need to live a healthy productive life.

When explaining a brain injury disability to someone, it is important to recognize who you are talking to.  To a child, the explanation may be very simple: “Grandpa had a stroke, so his brain is hurt, like when you fell and broke your arm.  It’s going to take him a while to feel better, but we still love him and he still loves us, even if his brain makes him act different.”

To others, they may want to know more details, especially if they are very close to the person and want to know how to help.

If applying for government aid or assistance – or for various programs that assist TBI survivors, you can be more detailed and specific.  More details are even better in these situations so that a person can receive the best help customized for their specific needs.  And if a person isn’t able to communicate for themselves, it is important they have someone who understands the situation to advocate on their behalf.

The most important thing to remember when explaining a brain injury disability is that the person is still the person they were before the injury.  They are still someone’s child, parent, friend, colleague, neighbor.  They are more than just the effects of their injury.

One of the distinguishing characteristics of survivors living with traumatic brain injuries is that life was different before their injury. This is different than someone who has always lived with a developmental or cognitive disorder. Often the contrast between “before” and “after” is very sharp and drastic.  The survivors themselves are frequently aware of this, and therefore need a community of understanding peers, such as Villa Licci, to support them along their recovery journey.

But the survivors themselves are not the only ones affected by traumatic brain injuries.  Parents often lament the losses their children have sustained because of their injury.  They, too, mourn the life they once envisioned as parents, as no one holds their little baby in their arms and imagines a future with a TBI.

The Littrells are one such family.  Living in Westfield, IN, they raised their son Ben to be an active member of his school and community.  Ben especially loved soccer and was also on the high school varsity football team, National Honor Society, and made the honor roll.  In addition to school activities, he interned at a local pharmacy.

Though he did not pursue pharmacy as a career, he did continue his education. Ben graduated from Purdue University, where he was president of his fraternity pledge class, worked full-time at a local restaurant, and maintained his high academic achievements.  He began a career in Raleigh, NC, as a salesman with Ecolab.

Eight months into his career, his entire life changed.

While visiting a fraternity brother in South Carolina, Ben was struck by an SUV traveling 35 mph.  His parents say he was fortunate that the nearest hospital happened to be a level 1 trauma center. He also had youth and being in good shape working in his favor.

After emergency brain surgery to place a drain to control intracranial pressure and orthopedic surgery to reattach his severed tibia, Ben’s healing began.  He spent two weeks in a coma, and another six weeks in the hospital. Then Ben was flown by Grace on Wings air ambulance to Atlanta, where he was treated at the Shepherd Center in their Disorders of Consciousness program.

Much as they had watched their son learn everything babies do from infancy, his family looked on again as Ben had to relearn everything. From beating his heart rhythmically, to breathing steadily and maintaining a constant body temperature, and more.

Four months after his accident, Ben headed back to his parent’s home in Indiana.  No longer on a respirator or feeding tube, Ben had relearned how to chew food, but not yet how to use his vocal cords or walk.

The healing continues

After 6 years of therapy, Ben continues to improve. He has relearned many things, as well as learned new things, like the value of support from other TBI survivors.  Ben attends Head or Tails support group, where he has made new friends, and shared experiences and specialized knowledge important for survivors.

Ben trained his puppy Max, and they are now a registered animal assisted therapy dog team. He visits nursing homes and hospitals weekly, sharing his story and listening to the stories of others, both patients and staff. In addition, Ben also volunteers as a speaker for the Joseph Maley Foundation, traveling to area schools to share his story with children.

In his own words, “We all have our struggles.  Focus, always put others before yourself, it is worth it!  While I enjoyed selling chemicals at my first job with Ecolab, these things are great but taught me how although selling is enjoyable for me, feeling a part of something big is more important. So, I enjoy most serving others and helping others. When you stop worrying about yourself and realize you are a part of a bigger picture… God’s picture, having faith, things seem easier and give you a better idea of your purpose.”

Along every step of the way, and throughout his life, Ben’s family has been by his side.  From cheering him on at his sporting events, to proudly watching his college graduation.  Even now, supporting him on his journey as a TBI survivor, they are involved in his “new normal” and are grateful for support groups and organizations such as Villa Licci that help provide community for survivors and their families.

October is Domestic Violence Awareness Month.  According to research by the CDC, about one in four women and nearly one in ten men report some form of intimate partner violence over their lifetime.  Domestic violence is one of the main causes of TBIs in both adults and children.  From shaken baby syndrome to blows to the head, domestic violence can lead to serious long-term effects.

However, sometimes a victim might not know they have sustained a TBI. Likewise, they might not seek medical treatment because they don’t think the injury is that severe.  This puts them at risk for repeated injuries, thus compounding the effects of a TBI. Early treatment and awareness are key in helping TBI survivors overcome their injuries.

Like anyone with a TBI, domestic violence survivors may have trouble with executive and cognitive functioning.  They may have personality and behavior changes as well, though if the abuse is ongoing, the changes may be gradual and not sudden.

Sometimes, these impairments make it challenging to hold down a job or perform day-to-day tasks.  With a lack of income, someone suffering the effects of a TBI after being a victim of domestic violence may be unable to leave the abusive situation and find the resources necessary to fully heal.

Adults who have suffered from a TBI as a result of domestic violence may not have a safe and loving home environment.  As much as anyone with a TBI, they need a safe community in which to live and thrive.

Villa Licci does not discriminate against anyone in regards to the mechanism of their TBI. The residential community will provide supportive relationships to all who live here.  This will allow all survivors of traumatic brain injuries to thrive.

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.