Tag Archives: brain injury

Mommy of a Miracle – Faith

kristine & isabellaIn order to survive this journey through brain injury I think you need to have some sort of faith.  Faith is a very personal thing and yet when brain injury occurs it is often questioned more than ever.  Most people question their faith after a brain injury, but for me, it was quite the opposite.  You see before my daughter, Isabella, got sick with sudden acute encephalitis, I already had doubts about my faith.

The two years prior to Isabella’s Acquired Brain Injury (ABI), I had helped care for my Nana who was dying from ALS.  I watched the woman that I called my Nana, who was more like a mother and best friend to me, suffer for about two years.  It was heartbreaking and it made me question my faith.   My Nana was one who always had a strong faith yet she was suffering.  At the same time that my Nana was dying, one of my best friends, Jillana, was losing her battle to an inoperable brain tumor.  Once again my faith was being questioned.  Jillana was a young athletic amazing person and yet she was suffering from this horrible brain tumor.  My Nana died Sept 2009 and Jillana died March 2010.  Within 6 months I had suffered two substantial losses.  I was angry and upset that two great people suffered and died.  I was questioning my faith; I was questioning everything that I had ever believed in.   I found myself searching for a reason to have faith because I no longer believed.  I didn’t believe in prayer because I prayed so much for them both.  I did not believe in people that claimed to have experienced miracles.  In my mind, people that claimed to have miracles were not telling the whole story and clearly something else played a hand in that “miracle”.

When Isabella got sick everything changed.  I found myself in the PICU watching my child dying before my eyes.  I was praying to anyone that was listening to please save my baby.  In that room I didn’t know what else to do so I prayed.  There was family, friends, acquaintances and strangers from all around the country praying for Isabella.  Then in the words of her doctors, a miracle happened.  Prayers were answered.  Not only did Isabella survive but she defied the odds.  Hearing doctors say that there is no medical explanation for her survival and that it is a miracle she is here, well, that gave me something to think about.  I had watched a miracle with my own eyes and there wasn’t more to the story as I had often suspected with others who claimed miracles.

As the hours turned to days then months and eventually years I could feel that my faith was returning.  I had faith to understand that the power of prayer really does work and miracles really do happen.  Not all prayers are answered how I want them to be but I now have faith that somehow some way things will work out.    Ironically that was something that my Nana had told me my whole life that I didn’t understand until Isabella got sick.

On this journey my faith has been tested over and over.  What I have found is that faith comes in all kinds of packages.  There is faith in the power of prayer, and faith in miracles.   I have faith that Nana and Jillana are our guardian angels, both never far from us.  Faith can also be found in doctors, therapists, friends, family, strangers and support groups.  Faith isn’t always this thing that is right in front of you; sometimes you have to really look for it.  Most importantly I have faith in Isabella and myself.  I know that together we can conquer any battle big or small.  After all faith helped us survive the unimaginable.

Guest Blogger, Kristin Olliney, is the mother of 8-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.

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.

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Announcement of “Chicken Soup for the Soul Recovering from Traumatic Brain Injuries” written by Sandra Madden.

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BIA-MA Staff & CSS Authors (Left to Right) Barbara Webster, Helen Stewart, Kelly Buttiglieri, Sandra Madden, and Suzanne D.K. Doswell

 

 

The Brain Injury Association of Massachusetts (BIA-MA) is proud to announce that stories written by five of our staff members, as well as several Massachusetts residents affected by traumatic brain injury (TBI), were selected for inclusion in the new Chicken Soup for the Soul (CSS) book slated to hit bookstores nationwide on June 24th.  This new book is entitled Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work.

Our Executive Director Nicole Godaire beamed with pride when presented with this new book.  “I am proud of my staff, having the courage to tell their stories to the world. I believe this book will become a valuable resource for families dealing with recovery from traumatic brain injury.”

The following are excerpts from our CSS Authors:

“This book is the quintessential book for those who want to step into the world of brain injury and is now a primary resource in the BIA-MA Western Regional office library.  It is easy to read, full of dynamic personal stories and exactly what we have needed as we attempt to explain brain injury to the medical world and general public.  Some readers will shed a few tears as they realize the life altering significance of TBI and others may finally be able to address their patient and client needs with a clearer sense of this silent epidemic from the voices of those who know.” ~ Suzanne Doswell, Western Regional Manager

“I am so very grateful to be a part of this book.  After reading most of the stories, I truly believe that this is the most powerful textbook about Brain Injury ever written.  It has so many different voices in chorus.  The harmony blends survivors, family members, caregivers and professionals into one song.   It is not merely academic jargon, but relates the experience and impact of brain injury through the heart.  It bridges the gap between words and experience.  I do not believe that one can read these stories and not gain a deeper understanding of Traumatic Brain Injury and have more compassion toward the people who live with it, in any capacity, on a daily basis.” ~ Helen Stewart, Western Region Information & Resources Outreach Coordinator

“It takes a long time to heal and rehabilitate from a brain injury, typically continuing long after your insurance coverage has ended.  It is the hardest work I have ever done but it led me to the most fulfilling work I have ever done, working with other survivors.  My mission is to let other survivors know they are not alone in their struggles and to encourage them to think about “How” they can do something instead of “I can’t”.   It is a journey, not a destination.  Never give up hope.” ~ Barbara Webster, Support Group Leader Liaison

“A few years after my accident, I ran into my neurologist on a plane, we were both going to St. Lucia for a vacation. I felt such pride and satisfaction in telling her I had graduated law school and was practicing law. I wanted her to know she should encourage patients to take small steps to accomplish their former, pre-TBI goals. She initially discouraged me from pursuing mine.” ~ Kelly Buttiglieri, Ambassador Program Coordinator

“Keeping a positive outlook has been key (for me) to not succumbing to the frustrating and painful consequences of TBI. Many amazing and inspirational people have come into my life since my accidents and I keep focus on this, the comfort and joy of these relationships.” ~ Sandra Madden, Administrative Assistant

Chicken Soup for the Soul was named by USA Today in 2007 as “one of the five most memorable books in the last quarter-century” and after 21 years of publishing, have sold over 100 million books in the United States and Canada alone. You now have the opportunity to bump that number past 100 million books by purchasing your copy of Recovering from Traumatic Brain Injuries: 101 Stories of Hope, Healing and Hard Work directly from the Brain Injury Association of Massachusetts. We are selling the book for $12.50 (this is lower than the retail price and includes the cost of shipping and handling) and proceeds from the sale of each book will help support our mission: to create a better future for brain injury survivors and their families through brain injury prevention, education, advocacy and support.

To order online, visit www.biama.org. If you are unable to order online, please contact our offices and speak to Sandra Madden, she can be reached at (508) 475-0032 or toll-free (in state) at (800) 242-0030.

When you receive your book, look for BIA-MA colleagues’ stories on pages 64, 86, 177, 310, and 361.  Stories written by other Massachusetts residents affected by TBI appear on pages 15, 80, 128, 195, 212 and 307.

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.

The Best “Job” In The World

Joan helped plan and execute a volunteer-run yard sale in 2011.

Joan helped plan and execute a volunteer-run yard sale in 2011.

Today’s blog is written by Joan Rauch, a BIA-MA volunteer who has been giving her time and talents for the past four years.

All through our lives we volunteer. Early on, we are often “volunteered” by our parents and become “committed volunteers” when our kids play sports or are involved in other activities such as scouting, music or the arts. At work and church, we are often “recruited to volunteer” for all kinds of worthy causes. To “volunteer” becomes ingrained in our daily lives, so much so, that we just accept that it is a job that must be done.

Then one day the thought of retirement brings the realization that we are now free to do whatever we want; to get involved in the things we have been waiting a life time to do. Some of us, like me, have been fortunate enough to be involved part time in the daily lives of our grandchildren. And many of us begin to look at the world in a different way; we look back and appreciate how fortunate we have been. Now that we have the luxury of time, we realize, that giving back, “volunteering” for the right cause, is indeed important to us. The ‘spirit of volunteerism’ becomes a part of us, centered in our thankful heart.

My own, ‘yes, I will’ moment came while reading the weekly insert in the Worcester Telegram. Volunteer opportunities filled several pages, but the one that caught my eye, was the one about the Brain Injury Association of MA. It was even located in my home town!

The article spoke about the chance to learn, to help and become a part of a vibrant and continually growing organization, one dedicated to people with brain injuries, their families and their care givers.

It has been almost four years since that article appeared and I know I made the right choice. I got to be a part of a welcoming environment, one that appreciates everything we volunteers do, no matter how big or small the job. As a volunteer, we are provided with on-going instructions for any task we undertake and we are permitted to attend appropriate client-focused education programs held by the BIA. We are accepted as part of the BIA team. We get to participate in activities involving brain injured adults and to experience, first hand, their  efforts to expand their capabilities and to witness their joy when they succeed.

As a volunteer, I get to work with other like minded people, ones who help add to my own sense of well-being and accomplishment. In a world full of possibilities, ”volunteering” at the BIA of MA, truly can be, one of the best jobs in the world.

Mommy of a Miracle: “You are not Alone”

Kristin Olliney

Kristin Olliney

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. 

“To the memory of Giovanni (Gio) Cipriano”

When Isabella survived her Acquired Brain Injury (ABI) I desperately sought out other parents of children with brain injuries.  Statistically speaking I knew I wasn’t alone and yet I couldn’t find any other parents.  I knew there were others, after all, every 40 seconds another American youth enters an emergency department with a brain injury.  I needed that connection with other parents who could relate to having a child with a brain injury.  Only another parent on this journey could fully understand the emotions that you go through when you have a neurologically typical child one moment and then a child with a brain injury the next.  At one point we all had a neurologically typical child, some of us longer than others.

I wanted to find an online support group.  I needed the option to “talk” whenever I wanted to, on my own terms from the comfort of my own home.  In-person support groups were not going to fit it into an already jam-packed schedule. Plus, I needed more than a once-a-month meeting.  I wanted a safe, non-judgmental place to go to at any given moment.  Most of the online brain injury support groups I found were a mix of survivors, spouses, significant others, friends, family etc.  While these groups have helped me understand so much about brain injury and in particular, survivors, I needed more.

When I didn’t find an online support group specifically for parents, I started my own on Facebook called, “Parents of Children with Brain Injuries.”   I had hoped to have at least a few parents join.  One-by-one as parents joined, I realized that I was no longer alone and neither were they.  We found comfort in knowing that while our paths may be different, the journey is the same because we all have that common bond of brain injury.  We all belong to that “club” that we never asked for or imagined we would belong to.  That feeling of being isolated from the rest of the world had ended because we finally had each other and we are surrounded by parents who “get it.”  Our child survivors range from babies to adult children and our stories vary by how the brain injury occurred.  We are all at different places on this journey.  Some of us are brand new to life with a child who has a brain injury and others have been doing this for quite some time.  “Parents of Children with Brain Injuries” has become our safe non-judgmental place to vent our frustrations, cry over the heartache of what has happened to our children, and cheer each other on while sharing the victories that others couldn’t possibly understand.

Having a child with a brain injury has changed us all.  Our children are now faced with a very different life as are we.  Some of our survivors are being bullied because of those differences.  We struggle with helping the rest of the world understand that while some of our children look exactly the same, they are now completely different on the inside.  We all go through the process of grieving the child we had pre-brain injury and accepting the child we now have post brain injury.  We support each other in that moment of weakness when you don’t possibly think you can make it another day. We get angry when another survivor is treated unjustly by the school, the rest of the world or by family and friends.  We share possible treatment options, how to raise awareness, discuss medical procedures, medication experiences and how to fight insurance companies.  We celebrate the successes of hearing a nonverbal survivor make a sound, watching survivors figure out how to throw a ball or walk.

Two weeks ago, we had our first loss.  A new member joined and she had a child struggling to survive a brain injury.  Unfortunately that child did not make it.  Words cannot express the sadness that was felt.  I have never met this mother nor her child, and yet my heart ached just the same.  After all, at one point most of us were in that same position (watching our child die), praying our child would make it through the night and defy all possible odds to survive.  The reality is that every five minutes someone dies from a brain injury.  That someone has a parent somewhere.

What started out as my need to connect with other parents of children with brain injuries has forever changed who I am as a person, a mother and a caregiver.  I may never meet these amazing parents but I can’t imagine my life without them.  This group and our members have had such a profound impact on me.  I can’t express how much these parents have changed my life.  If you haven’t found a brain injury support group, I highly recommend it.  When you find the right one, you might wonder how you ever survived without them.

To locate a support group in Massachusetts, visit http://www.biama.org/groups.html and click on BIA-MA Support Group Listing. Or, click here.

Don’t Wait, a guest post by Catz LeBlanc

Catz LeBlanc goaltending for her handball team.

Catz LeBlanc goal tending for her handball team.

Today’s blog is written by Catz LeBlanc, a member of the ‘Amazing’ Brain Injury Support Group in Framingham, Mass. Originally from Madison, WI, a former Physician’s Assistant, collegiate soccer goalkeeper, ice hockey player, team handball goalie and mother of an “amazing son,” she suffered a sports concussion as a team handball goalie. Two months later, she suffered a more severe concussion when her Volkswagen Beetle convertible was rear-ended by a truck and totaled. Searching for a book to provide some comfort, guidance, understanding for her challenges with the fallout of a traumatic brain injury, she found none. So, she wrote one. She continues her rehabilitation four years since the injuries.

Don’t Wait

Everyone is so busy.  No one has enough time, no one has enough money.  Someday, someday, they will do what their heart and soul desire, in the meantime, so much needs to just get done.

Last week a woman said she thinks she has maybe five to seven decent years of cognitive function before she may succumb to her older siblings’ demise.  There was urgency in her voice, tired of helping everyone else, everyone always needing something from her–she just wanted to live her own life–with whatever remaining quality she has.

If I could, I would fill Gillette Stadium to capacity, everyone shouting “Yes, you, do it! We give you permission!” If I could, I would have all the birds in Boston sing outside your bedroom window, “Wake up! Wake up! Today’s the day YOUR life begins!”  If I could, I would have the planes at Logan fly over you, pulling signage, “TODAY! Yes, you, Today- GO FOR IT!”

It would be tricky, but we might be able to have you professionally kidnapped, to somewhere you can finally do what your heart and soul have been whispering.  Trickier still would be to have all the family and people connected to your loathsome to do list- have THEM professionally kidnapped and dropped off with provisions to an island to care for themselves for the next whatever number of years.

Perhaps your next fortune cookie will read, “This is it. Last call-You have 6 months of quality left. Use wisely.”  Would you change your priorities then?  What’s it going to take to have you put you on the top of your list?  Are you waiting for a parade with bells and whistles, a marching band, to let you know, OK-Now! Go ahead, FORWARD march!

Human illusion of time left in our lives, it’s funny how we somehow calculate it, as if a physics equation.  Denial is a powerful thing. Human nature is human nature.  “I’ll just get these two more things done and then I’ll sit down and give myself 30 minutes for me.” And then the door bell or phone rings, postponing again and again. Before we know it, another decade or more has passed.

We are delusional about our lives–Start today, tomorrow noon at the very latest.  I’ve already been to the land of a compromised brain and it is a Godforsaken place.  I’m still stuck there precariously living within my limitations, receiving punishing consequences if I rebel.

Will we be one of the lucky ones who suddenly dies peacefully in their sleep, self-sufficient until their last breath, life list completed in total?  What are the odds of that?

How about listening to that inner voice?  I can hear the resistance rallies revving up, all the reasons why you can’t do what you say you really want to do.  No need to answer me. It’s your life.

P.S. Here’s a sample refrigerator note.

Dear All,

I have come down with a rare form of L.M.N.O.P. and am quarantined for a bit.  Don’t bother to phone or text as my room doesn’t get the tower.  Take excellent care of each other and don’t worry about me.  I will be just fine.

 Love,

Your spouse/Sibling/Parent/Grandparent/Neighbor/Friend/Friend of a Friend…

Catz’s book, Tell Me This: Encouragement and Hope after Brain Injury, a pocket guide for athletes, veterans and civilians, is being published by Lash and Associates and will be released this coming winter.

What Brain Injury Survivors Want You To Know

Today’s blog is compiled by The ‘Amazing’ Brain Injury Survivor Support Group of Framingham, Mass., one of 34 BIA-MA support groups around the Commonwealth of Massachusetts. It was then published in Lost and Found, A Survivor’s Guide for Reconstructing Life after Brain Injury, by Barbara Webster, BIA-MA’s Support Group Leader Liaison. If you want more information about joining a support group, click here. 

What do  brain injury survivors really want you to know?

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem. If there is more than one person talking, I may seem uninterested in the conversation – but that is because I have trouble following all the different “lines” of discussion and it is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! and it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me, allowing me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience as well, trying not to interrupt, allowing me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory and know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time, it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. ( It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD, obsessive-compulsive disorder, but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional issue as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Think A-Head Redesigned and Revamped, Coming to a School Near You

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Students get ready for prom. Do they know the dangers of drinking or drugging and driving?

Did you know that the brain contains 100,000 miles worth of blood vessels–enough to circle the earth four times?  The brain contains 100 billion neurons, which are cells, known as gray matter, that process all of the information in your brain. Each neuron is connected to other neurons by up to 40,000 synapses. This means that the number of connections in the brain outnumbers the number of stars in the universe.

Did you know that the brain is made up of 75% water, and uses 20% of the oxygen in your body at any given time?

What a powerful organ…one worthy of protecting, since it houses so much information and capability.  However, brain injuries are the leading cause of death and disability in young adults and teenagers. The recorded instance of concussion, car crashes and substance use by this group is increasing. So, what can be done to enlighten students and give them knowledge, allowing them to make better choices for their own safety?

The Brain Injury Association of Massachusetts has a solution. Think A-Head is a dynamic, school-based program that has been teaching students to avoid risk-taking behavior and develop healthy living habits for nearly 20 years. This curriculum is tailored to the age of the students and to the specific needs of the school and its community. The program offers a core curriculum with amendable activities based around the following issues:

  • Brain Injury: General knowledge of the brain, brain injury, high-risk groups and behaviors
  • Drugs and alcohol: Breaking down drugs to include depressants, stimulants, inhalants and prescription pills and the affect on the teenage body and brain
  • Impaired driving: How alcohol affects driving, the dangers of impaired driving and the increased risk of sustaining a traumatic brain injury (TBI)
  • Seatbelts: The benefits of using them and the detriments of not using them; statistics on usage and common misconceptions about seatbelts
  • Concussions: Focusing on sports concussions, signs and symptoms, and information on what to do in the case of a suspected concussion; the roles of coaches, student athletes, teachers and school systems in this process

www.bigstockphoto.com

You may have experienced this program in your school before. However, BIA-MA has completely revamped the program to be a more effective educational and preventative tool. Your students will experience new presentations with interactive question-and-answer sessions to make sure they are really consuming the information. In addition, a brain injury survivor speaker will be on hand to discuss their experiences with brain injury and to also pose situational questions to the students. When reality is standing before them, how do they respond?

Thanks to a generous gift from the Sarah W. Rollins Charitable Trust, BIA-MA is able to offer this redesigned Think A-Head program at a discounted fee of $75 for the first program and $25 for each additional program held at your school on the same day. Think A-Head aims to inform and engage students and supply them with applicable knowledge so that they can make more informed choices during a most impressionable time in their lives.

Science has proven that neurons continue to develop throughout an individual’s life, at least in some parts of the brain. In addition, fresh cells are actively involved in the formation of memory. This organ should be protected, as it serves as the “engine room” or “control room” for all of your body’s faculties. An individual’s choices affect the brain on a regular basis.

To bring the Think A-Head program to your school in Massachusetts, visit the webpage today to book a program (or more!) and learn more about how educating students about the risks and impact of brain injury helps them make better choices. To book your program immediately, click here.