Tag Archives: brain injury survivors

Introducing our Newest Guest Blogger Tessa Venell

You Never Forget How to Ride a Bike

tvenell riding bikeFor Mother’s Day, my brother and I went home for the weekend to see my parents who live in Acton, a rural town in Southern Maine where I grew up. When I awoke on that Saturday, I went for a run around the three-mile loop I used to do when I was in high school, but had only run once since graduating from college. The loop starts on a dirt road at the end of my parent’s driveway and winds through the woods and past a hill overlooking the lake that I swam in as child.

After I ran, I had lunch and got in the car with my parents, my brother, and his girlfriend to drive to a trailhead nearby to go for a short hike. My mom wanted to go for a hike for Mother’s Day, continuing a tradition that started when I was in grade school. As I was hiking, I felt surer of my footing than I had during the first few hikes I had attempted, and I relied less on my dad’s arm for support. Jazzed up after the hike, I asked mom if she’d spot me on the bike. For the first time in eight years, I rode a bike all the way up and back down the hill.

It wasn’t the first time I had tried to ride my bike since suffering a traumatic brain injury eight years ago. In 2006, I was involved in a car accident that had left me in a coma and unresponsive for 3 weeks before being admitted to the “Slow to Recover” program for 100 days at Braintree Rehabilitation Hospital. However, it was the first time I actually enjoyed riding a bike since before the accident.

I had tried riding a bike a couple of times before, but my attempts always ended in frustration that boiled over and quickly led to yelling and hurt feelings for the person that was trying to help me. Those first attempts at riding a bike left a bad taste in my mouth and I didn’t think I would do it again. Riding a bike was not the most important activity to me, if I had to lose something; I was fine with this being the thing.

Those initial attempts at riding a bike were a stark reminder of the limitations I still face. At the time, I was just starting to get more confident, feeling like I could finally start to grasp my recovery and better manage my life with TBI. I didn’t like to be reminded of my limitations and not being able to successfully ride a bike left me feeling frustrated, and I didn’t like remembering what it felt like to have those limits. Memories of my recovery after the accident started to come flooding back, and the various obstacles I faced during the time I spent in three different hospitals over the course of nearly a year.

But that Saturday, the day before Mother’s Day, was the first time I had considered riding a bike for fun, even after running and hiking. Both the running and hiking felt easier that day and finally I was looking to be challenged again. Even after failing to ride a bike multiple times, I was feeling confident enough in my balance and strength to try again. And even though I had yelled in frustration during my first tries, on my way back down the hill my mom was waiting there for me, like she had been waiting to support me through my whole recovery.

My neurologist at Braintree, Dr. Douglas Katz, once told me that I would continue seeing changes in my recovery even five to six years after the accident. At the time, I looked at this with disappointment: I wanted to be recovered now, not in six years. Gradually, I began to see things from his perspective, and still notice even small changes with my memory, balance, and emotions. That progress, no matter how small, excited me, and propelled me to new stages in my recovery. Even eight years later, the confidence I was starting to feel with my body while running and hiking motivated me to get back on my bike.

And though I had questioned this initially, I found the old adage to be true: You never forget how to ride a bike. Sometimes you just need patience to remember.

Venell Beijing headshot

Guest Blogger, Tessa Venell, is an independent journalist and documentarian. Currently a grant writer at The Ivy Street School, she is writing a book about her recovery from a brain injury that she sustained when a severe car accident left her in a coma. You can see more of her work at tessavenell.com.


Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

Anniversaries: To Celebrate or Not to Celebrate?

Image

Guest Blogger, Kristin Olliney, is the mother of 7-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor. 

On November 25th, 2010, it was a regular Thanksgiving.  We visited with our family and friends.  Isabella and I planned our Thanksgiving weekend.  We were so excited to have 4 days off and we couldn’t wait to decorate for Christmas.  My best friend lived next door so we stopped by before going to our home.  We arrived at 7pm.  By 7:10pm Isabella was screaming that her head hurt, her throat burned and seconds later the vomiting started.  I brought her home, cleaned her up and laid her down beside me.  By 10:35pm Isabella was confused, disoriented, dehydrated and she said “I just want to go home Mommy”- we were home.  I knew at that moment that something was not right.  I called her pediatrician and we were off to the emergency room.  I had to pull over several times to help her because she was vomiting so much.  We walked into the emergency room at 11:58pm.  I did not know that our lives were about to change forever.  That is how our journey began.

It was eventually figured out that Isabella had sudden acute encephalitis.  Words cannot express the horror that I saw happen to my baby.  I held her in my arms at one point and she was stiff as a board.  Her body was distorted, she made these awful sounds (that still haunt me) and I remember thinking, God she doesn’t deserve this.  I remember pleading to God that this is not how I wanted my baby to live.  I watched Isabella crash before my eyes.    There were tubes going everywhere, she was hooked up to 19 machines and a ventilator.  I was told that I needed to prepare myself that I probably wouldn’t be walking out the door with Isabella.  I was told that Isabella was gravely ill and I needed to understand she wasn’t going to make it.  I couldn’t even process what was happening.  There are sections of the first few days that I don’t even remember.  I want to remember them but I am told that it’s my brain blocking it out because it’s so traumatic.  It could also be that I didn’t sleep for 74 hours and I eventually collapsed outside the MRI.  How could I sleep knowing that I only had a precious few hours with Isabella?  I didn’t want to waste one single second sleeping.

The days went on and Isabella was still fighting.  Isabella eventually woke up and it was the happiest day of my entire life.  See the picture below.  I was told that Isabella is that one in a million to survive what she did.  Prayers, our special angels and a miracle saved my baby.  Little did I know that the next few weeks, months and years would never ever be the same.  We were now on a different journey, one that was unknown and at times scary.

Everything in our life is defined by that one day “before Isabella got sick” and “since Isabella got sick”.  It is that one moment where everything changed.  That first anniversary was a sad one.  It was hard reliving every single moment over again.  Isabella and I snuggled, watched movies and played.  I decided that I would allow myself that first year to be sad.  After that I couldn’t anymore.  I decided that instead we would celebrate Isabella.  Isabella knows that she has a “boo-boo” in her brain.  I have been very honest (in an age/cognitively appropriate way) about what has happened.

As the second year approached I planned “Celebrate Isabella Day”.  She quickly changed the name to “Mommy and Isabella Day”.  I asked her therapists, providers and others that love her to send her a card (to be opened on 11/25) with well wishes and words of encouragement.  Isabella and I planned the day out.  Crafts, movies, snuggling, make a cake and have balloons with party hats.  Anyone that knows Isabella knows how important party hats are to her.  We sang “Happy Mommy and Isabella Day” and we made wishes on the candles.  We also opened the cards that were sent.  Isabella looks forward to this day every year now.

You are probably wondering what most people do, why celebrate such an awful day?  I choose to celebrate this day because I have to.  This day forever changed our lives.  Instead of looking at it as the day I lost my old Isabella, I choose to look at it as the day my Isabella was born again.  She is a miracle and she amazes me every day.  Isabella is my hero and I want to celebrate all that she has accomplished.  After all this was a child who wasn’t supposed to make it through the night never mind reach 3 years post Acquired Brain Injury (ABI).  When I look back on the last three years, we have had many highs and lows.  Isabella’s strength, bravery, determination, courage and fight have gotten us through this.  I don’t want to mourn who she was and what was lost, I want to celebrate the amazing person she is.

With each anniversary we have the power to choose how that day will be remembered.  We can long for what once was and be filled with sadness or we can chose to celebrate the survivor that is here with us.  I chose to celebrate my amazing survivor Isabella.  Happy Mommy and Isabella Day!

“Nobody said it would be easy they just promised it would be worth it” Anonymous

My Sister, Kim, Part 2

Kim Boleza on her snowmobile

Kim Boleza on her snowmobile

This is the second part of a two-part blog post by Stephanie Deeley, whose sister Kim lived with, and ultimately died from a traumatic brain injury caused by domestic violence. 

…During this same period, the domestic abuse escalated and we as a family were very concerned about Kim’s safety.  Kim had always been independent and had always made her own decisions.  We could not convince her that staying in that situation was too dangerous.  She knew that environment, it was her home, and the idea of dealing with a big upheaval in her life was more than she could handle given all the issues related to her brain injury.  Kim decided staying was the best choice.

In December of 2011, Kim’s husband held her captive in her own home for several hours.  As a result of that event, he was charged with attempted murder and kidnapping, along with a slew of other charges.  Kim was devastated, and went back and forth between being angry and wanting her husband punished, to feeling guilty and wanting him home.  Again, the turmoil and the stress of an unknown and fluid situation was very, very difficult for her to handle as a result of her brain injury.  The court took the decision out of her hands and brought charges against him and held him for 6 months.  Kim found herself living alone, unable to drive, struggling with balancing her check book, and worried about having a seizure when she was home alone.  Ed and I were always there, to drive her to the grocery store or to a doctor’s appointment, to help with finances or to listen to her when she needed to vent. But, she felt lost and dependent and she did not like that.  When her husband was released from jail, she petitioned the court to let him come home.  She was more comfortable being dependent on her husband than her siblings.

It was “normal” for your husband to take you to the doctor or the grocery store, and to balance your check book.  She felt guilty asking us to take time away from our families to help her.  No matter how many times we told her it was not a problem, she still felt bad.  She had a husband, and he should be the one helping her. She could not see how ludicrous it was to be dependent on the person who caused her injury which took away her independence.  And again, Kim was not going to tell people she was a victim of domestic abuse any more than she would tell them she had a brain injury.  Her pride got in the way, as it would for any of us, I think.

Kim’s husband never met the expectations Kim had.  He did not take her to her doctor’s appointments, he did not take her grocery shopping, and he did want to help her.  In fact, he complained to his “friends” about how he had a wife who was disabled and how tough it was for him to be saddled with that burden.  Never did he mention that her disability was caused by him.

On March 9th of this year we all got together at a restaurant in Hingham to celebrate my brother Ed’s birthday.  After much discussion and back and forth, it was decided that Kim’s husband would not join us.  Ed picked his “little” sister up as he had done hundreds of times over the last few years, and Kim spent the night surrounded by people who loved her and protected her and wanted the best the world could give her.  She talked with her niece Catie about her upcoming wedding, and talked with her godson Patrick about his college classes, and chatted with her nephew Matthew about his house on the beach.  She reminded Ed that he was getting old, and told me to stop worrying about her.  She laughed and joked and teased and was the Kim we all knew and loved.  I hugged her when we were leaving the restaurant and she got in Ed’s car and he brought her home.  That was the last time any of us saw Kim alive.

On Sunday evening, March 10th, Ed received a text from Kim about a family event at 7:30.  At 8:20, Kim’s husband called to tell us Kim was on the way to the hospital in an ambulance.  By the time we arrived, Kim’s was gone.  We may never know for sure what happened that night, but there are some things we are sure of.  Kim was a victim of domestic abuse.  Kim’s head injury was caused by her husband.  Whether Kim died of a seizure, or some event involving her husband, she died as a result of domestic abuse.

According to the Brain Injury Association, it is not surprising to hear that a brain injury was caused by domestic abuse.  The stigma of having a brain injury is still something we need to fight, as is the stigma of being a victim of domestic abuse.  I cannot even imagine the difficulty in having to deal with both of those issues as my sister did.

Kim’s husband is still facing the charges from the December 2011 incident.  As part of his defense, he is claiming that Kim had severe memory issues and could not possibly be sure of what happened on the night in question because of her brain injury.  The injury he caused is now what he is using to defend himself against the charges of attempted murder.

Kim’s life was changed as a result of her injury.  She lost her independence and her analytical mind, and she lost her job.  But, Kim continued to move forward and try to find a way to improve her life.  And on many occasions, she continued to share her love and laughter with the people who loved her most in this world, and who miss her the most. My relationship with my sister was one of the most important in my life.  There were so many times I relied on her advice to analyze a situation or figure out a course of action.  I trusted her judgment, and valued her insight. Most importantly, I loved her.  As she grew from my baby sister to my friend, our relationship grew also, and as her life changed because of her brain injury, some relationships in her life were altered…some did not survive.  But family was not one of them.  She was always the fun one, the one who could make you laugh just as easily as she could make you see a need to change.  She never judged and she always loved. She valued truth, even when it was tough to hear, or tough to tell, she was kind and forgiving, and a trustworthy keeper of your secrets.

Given more time, I believe Kim would have found a new success in life, and would have learned to live a full and productive life even with the limitations that were a result of her brain injury.  Who knows what the future holds for new treatments and medicines. Use every resource available to you, including those offered by the Brain Injury Association.  Every day is a new opportunity to grow and to improve.  Don’t let your brain injury define your life.  Don’t settle for less than you deserve.  Do not be afraid or ashamed to acknowledge your brain injury, or talk about how it impacts your life.  What we tolerate, we cannot change.  Don’t tolerate a life that is less than it can be.  Someone once shared with me that if you are always trying to be normal, you will never know how truly amazing you can be.  I hope to always remember that…

Survivor Spotlight: Nancielee Holbrook

nancieleeholbrook

Today’s survivor spotlight is about Nancielee Holbrook, a traumatic brain injury survivor, whose brain injury changed her life. Now, over three years since her brain injury, Nancielee is focusing on the positive and helping other brain injury survivors. Read her story below.

“You lose everything you knew or had in a blink of the eye and awake to another person who has to relearn and get to know the new person you have awakened to.” – Nancielee Holbrook

In 2009, Nancielee Holbrook was going to dinner with a friend when they noticed a car was broken down on the side of the road and stopped to help.  A truck driving 60 mph hit their car from behind injuring both Nancielee and her friend, causing them to be life-flighted to the hospital. On that day, Nancielee suffered a traumatic brain injury and her life was forever changed.

“I lost the job of my life,” says Nancielee. “I was an officer at Mass Maritime Academy and just loved it but I couldn’t do it anymore.” In addition to having to give up her job, she also lost many of her friends following her brain injury.

“You get left behind, because your friends, they change,” says Nancielee.

Once an avid hockey player, Nancielee can no longer play the sport she loves. “That was such a big part of my identity and part of my world, so now I have to change that as well,” she says. 

Read the rest of Nancielee’s story here.