Category Archives: Advocacy

College Bound – Wishing our Ambassadors an Amazing Experience !

We have been so fortunate to know Sean Rowell and Madeline Uretsky at the BIA-MA. They are both amazing people and have been wonderful additions to our Ambassador Program. If you have not heard about our Ambassador Program it is comprised of  volunteer speakers who have either sustained a brain injury or have a loved one with a brain injury. The speakers vary in age and experience, but all share a desire to tell their stories to help others avoid this devastating tragedy. Sean and Madeline have both been part of our are program after they sustained their injuries.

If you would like to become an Ambassador please contact us at 508-475-0032 and ask to speak with our Ambassador Program Coordinator !

Sean Rowell_SlopesCongrats Sean Rowell !!

This spring Ambassador Sean Rowell graduated from St. John’s High School in Shrewsbury and will be attending Georgetown University.  Sean began speaking for our program in August of 2010.  Sean suffered his brain injury from a snowboarding accident at Loon Mountain.

Sean has made a number of speeches as an Ambassador.  This year, Sean was a panel presenter at our Annual Conference.  He has spoken to numerous clubs and organizations throughout the state, including,  the Worcester Rotary Club, Millis High School, Wilmington Rotary Club, Marlborough Rotary Club, Chelmsford Rotary Club, Stow Parent Teacher Organization and Fitchburg Rotary Club. The Wilmington Rotary Club invited Sean to also present to their High School Interact Program.

After his accident, Sean became certified to teach for the New England Disabled Sports Program at Loon Mountain.  As a coach, Sean guides guests in the snow sport of their choice on the mountain.   Through his assistance, Sean enables the students to experience the thrills and independence of skiing.

BIA-MA would like to sincerely thank Sean for all his accomplishments and association with our organization.  We wish him the best of luck in his studies and would like him to continue to be a friend of the BIA-MA.

Madeline

Congrats Madeline Uretsky !!

This spring, Ambassador, Madeline Uretsky, graduated from Bishop Fenwick High School in Peabody and will be attending Simmons College.  Madeline became an Ambassador for BIA-MA in April of 2012.  Madeline’s brain injury happened from a car collision and then five months later a severe concussion while playing soccer.

Madeline has made numerous presentations for the Ambassador Program.  In April, she was a panel member at the Whitehead Institute’s 2014 Spring Lecture Series for High School Students.  She has also made numerous presentations at many Rotary Clubs across the state including; Lynn, Billerica, Swampscott, Billerica, Tyngsboro/Dunstable, and Manchester/ Essex.   Madeline has also presented at our Pediatric Conference and was a speaker at the 10th annual Boston Acquired Brain Injury Support (BABIS) Walk.

In 2013, Madeline’s story was featured in the Boston Globe in an article on concussions and her story is also featured in many internet sites focused on concussions.  Madeline also wrote a chapter in the book, Concussed! Sports-Related Head Injuries: Prevention.

BIA-MA would like to sincerely thank Madeline for all her accomplishments and her dedication to our organization.  We wish her the best of luck in her studies and would like her to continue to be a friend of the BIA-MA !

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Grieving – Mommy of a Miracle

As a parent to a child with a brain injury, I can tell you that this journey is an emotional roller coaster from hell.  The truth is we grieve and most people on the outside just don’t get it because after all our child is still here.  This is my attempt to explain something that is hard to “get” unless you live it.

When someone you are close to passes away, there is a wake followed by a funeral and then the grieving cycle begins.  Generally the grieving cycle consists of shock and denial, followed by anger, then sadness, bargaining and finally acceptance.  When your child suffers a brain injury most  times you have a child who looks like they did before but they are an altogether different child.  Almost like a stranger was placed in their physical body.  We not only go through the grief cycle but are often times left with what has been called chronic sorrow.  Chronic sorrow is defined as the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions*.

Shock and denial is the first step of grieving.  According to the Head Injury Center every 5 minutes in the United States a brain injury leaves someone permanently disabled.  When that brain injury happens to your child, shock sets in fast.  I remember looking at Isabella hooked up to all these machines, tubes and IVs everywhere, thinking is this really happening or is this a horrible nightmare that I will wake up from? I mean after all Isabella was fine all Thanksgiving Day, how did things go so terribly wrong so fast?  I was physically going through the motions but I was in complete shock.  There are chunks of time that I just don’t remember.  Denial is something that I never experienced and for that I am eternally grateful.  I think the fact that I was a single parent helped me a lot.  I couldn’t fall apart or deny what was happening because I was the one having to make major decisions that could lead to life or death.

Anger is the second step of grieving. For me anger is such a foreign emotion.  I am not an angry person.  I can only remember two times in my life where I was angry.  Yes I get mad or upset like everyone else but anger well that was not an emotion I was used to.  I was angry that my child was robbed of the life she was supposed to have.  Isabella was a 4.5 year old little girl who had the world waiting for her.  She was this happy-go-lucky, social, smart little girl who met friends everywhere we went.  She was in preschool and she was playing on a soccer team – the one thing she had talked about since for as long as I can remember.  Yet my baby girl was hooked up to machines galore and fighting for her life.  I was angry and I have my moments were I still am.  It is ok to have those moments as long as you are able to move forward.

Sadness is the third step of grieving.  It is when the reality of your child having a brain injury actually starts to set in.  I was sad that the child I had for 4.5 years was gone.  Isabella looked exactly the same yet was replaced by what seemed to be a stranger.  I was sad that Isabella had to go through and endure everything from therapy to tests to doctor’s appointments etc.  I was sad that things Isabella had mastered before her ABI were now so challenging or gone such as walking, writing, coloring, sitting up etc.  Watching Isabella struggle with not only the heartache of not being able to do what she once did but also seeing the  frustration she felt because she knew she could once do it.  I was sad and I still have my moments were I am very sad.  I allow myself those moments because I am human and I know that I will keep moving forward.

Bargaining is the fourth step of grieving.  It is when you try to find the reason or explanation as to why.  It is asking “what if”, “should’ve, could’ve, would’ve” etc.  Often times bargaining is people thinking that they are paying for past mistakes.  I am fortunate that this is not something I went through.  Quite frankly I believe that sometimes bad things just happen.  There is not a rhyme or reason, it just is what it is.  I knew that I did everything that I possibly could to save my child.

Acceptance is the final step of grieving.  It occurs when you have come to the realization that what was is no longer and you start your new normal.  Acceptance doesn’t mean that what happened is ok.  It quite simply means that you are living in reality and have an understanding that life is different.  I will never be ok with what happened to Isabella.  She was robbed of her life.  I have come to the realization that the path Isabella was on prior to her ABI will not be.  However that doesn’t mean that Isabella can’t have a life.  Will it be the same as she was set to prior, no, probably not but at the end of the day, all I want is for Isabella to be happy and live to the best of their ability.  Acceptance doesn’t mean that all is ok it just helps you to keep moving forward.

Chronic sorrow is how best to explain life with a child who has a brain injury.  You are repeatedly faced with a child who in most cases looks exactly like their old self.  However, they are completely different. I miss the Isabella I had for 4.5 years. She was so happy-go-lucky with not a care in the world.  When I have those small glimmers of my old Isabella (however brief and far between they maybe) I take advantage of it.  What I have found is that I love my new Isabella more than I ever loved the prior one.  It is hard to imagine that possible.  The Isabella I have now has become my hero.  I admire her courage to face each day no matter how difficult it maybe.  I admire her determination and I hope she never loses that fight.

“The only people who think there’s a time limit for grief, have never lost a piece of their heart.  Take all the time you need.”  unknown

*taken from www.chronicsorrow.org

SAMSUNG CAMERA PICTURESGuest Blogger, Kristin Olliney-Apruzzese, 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.

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.

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

LPS-0720

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.

Mommy of a Miracle – The Truth

kristine & isabellaWhen Isabella was born I made a promise to her that I would always tell her the truth no matter what.  It hasn’t always been easy but I have kept my word.  When Isabella was originally in the hospital with encephalitis I took pictures of her every day.  If she was going to die, I still wanted pictures of her last days.  Thankfully Isabella survived and when we made it home I made a picture book for her.  It is called Isabella’s Journey.  In this book are all the pictures that I had taken of the hospital and inpatient rehab.  I wrote the book from my experience to her.  It was my heartfelt emotions, fears and everything else included.

When I wrote this book and others found out they discouraged me from telling Isabella about her brain injury.  They didn’t feel it was appropriate to show her the pictures or tell her the truth.  To me that was a crazy thought given that this happened to HER.  In my opinion Isabella had every right to know the truth.  I also knew that this book would help answer questions that could come up later in life.

The book is on Isabella’s book shelf and she likes to look at it.  We do not read the words as they are not appropriate for her to hear right now.  That said, she knows the gist of what happened.  We talk about the boo-boo in her brain every day.  After all Isabella’s brain injury has severely impacted every aspect of her life.  Isabella and I refer to the book when she asks questions such as what the scar on her arm is from (the PICC line).

Last week, Isabella was in the shower and she was not being safe.  Out of desperation I told her that I knew a little girl who got a boo-boo in their brain from falling in the shower.  It briefly stopped Isabella for that moment.  A few days later I had to remind her again about being safe in the shower.  Isabella responded something but I couldn’t understand her.  I asked her to repeat it and she said it again but I still couldn’t figure it out.  Finally she yelled, “How did I get a boo-boo in my brain”.  I froze for a minute because the question caught me off guard.  The moment I have waited for had arrived.  Prior to that moment I knew that Isabella understood she had a boo-boo in her brain but I also knew she hadn’t put all the pieces together yet.  Isabella had never asked how she got a boo-boo in her brain.  I explained to Isabella in very simple terms that she had gotten very sick and she slept for a long time.  I told her that the boo-boo in her brain happened because she was so sick.  As soon as Isabella was out of the shower, she grabbed the book so we could talk about it more.

While others may not understand why I made the book for Isabella, I know that it has been a very important tool in helping her understand what has happened.  I have always answered her questions with enough information to satisfy the question.  As Isabella gets older and can handle more info I will provide it.

How have you explained the brain injury to your survivor?

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.

Mommy of a Miracle – Regression

kristine & isabellaIsabella’s brain injury journey began over three years ago. I have learned that recovering from a brain injury is not the steady climb forward as often found with other illness or injury.  This journey is a series of really high highs and really low lows.  In our experience it is filled with one step forward and three steps back.  Regression is the hardest part.

Regression often times has a trigger.  That trigger could be a sudden change in care, medication side effects or an additional stressor such as work or school.  Regression with a known trigger is stressful enough but regression without a known trigger is terrifying.  Isabella has been regressing for quite some time.  Initially, the regression was triggered by the start of public school.  Isabella has since begun home school; however, she never recovered from that initial set back.  Our silver lining is how well Isabella has done academically since the start of home school.  That said, every single part of Isabella is starting to be affected by this regression; physically, emotionally, behaviorally, cognitively, psychiatrically, etc.  Isabella’s migraines and headaches have dramatically increased to every single day.  Her tics and anxiety have also increased significantly.  The regression continues.  It really accelerated once HyperBaric Oxygen Treatment stopped. HyperBaric Oxygen Treatment is the medical use of oxygen in a pressurized chamber.  I hope that someday Isabella can return to that treatment.

As Isabella’s symptoms worsen and more skills are lost, further medical tests are performed.  With each test result I find myself in a catch 22.  I don’t want a test to reveal anything new is wrong and yet not having answers on how to stop this regression is terrifying.  I think about the parents I know whose child with a brain injury regressed (due to varying reasons) and their child still hasn’t regained what they lost.  My biggest fear is losing the Isabella that I do have.  I have recently started taking some video of Isabella laughing and talking just so I have it.  It is devastating to think that without answers anything is possible, will she continue to regress and eventually stop talking or laughing?  Will she lose her physical ability to walk?  Will she….?  At this point, I have more questions than I do answers.

The other day, Isabella fell asleep in the car right before we got home.  I decided to sit in the car and let her sleep for a bit.   As I sat there watching Isabella sleep so peacefully, I just started crying.  I am not a crier and yet here I was crying my eyes out.   As a parent to a child with a brain injury, this journey has been one of the most rewarding yet most devastating experiences I have ever had.  It is heart breaking and gut wrenching watching your child make progress only to regress without reason.  Isabella has worked so hard to get where she is and to watch that slip away is devastating.  I am her Mommy.  I am supposed to be able to make it better and I can’t.

As I wait for an MRI, I pray not for a specific outcome but instead I pray that somehow some way things work out so that we can best help Isabella.  In the meantime, I continue to cherish every laugh and every smile.   When I see glimpses of my Isabella, she reminds me that she is in there and she is fighting like hell to get out.  That helps me fight like hell for her.

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

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.

Mommy of a Miracle – Too good to be true

kristine & isabella“Too Good to be True”

March was Brain Injury Awareness month.  While those within the brain injury community are aware of that, most of the country is not.  Cougar Town, which stars Courtney Cox, Busy Phillips and Josh Hopkins is a show that airs on TBS.  In March, Cougar Town aired an episode titled “Too Good to be True”. A member of my support group mentioned that the episode was offensive to brain injury survivors.  I had never seen this show before so I watched this episode to find out more.  The episode was about a man named Tom, who lied to his daughter about his life including that his friend Grayson had a “head injury” from hockey.  As a parent to a child with a brain injury, I was upset by what I saw.  While I understand that television shows are made to entertain and certain material is subject to interpretation, I was offended.  I know Cougar Town and Hollywood’s stance would be that I shouldn’t watch it then.  While I can respect that, I hope together as members of the brain injury community we can help educate others including Hollywood on brain injuries.

During the episode, Grayson, who was supposed to pretend he had a brain injury said “So, Tom told his daughter that a head injury turned me into a simple, good-natured man-child who needs help dressing himself.  That’s humiliating.”  This statement may be true for some brain injury survivors but not for others.  Not all survivors need help dressing.  Some survivors have minimal side effects while some face life altering changes.  For those that do need help getting dressed I am sure that it can be a humiliating experience.  Isabella could dress herself at 4.5 years old prior to her Acquired Brain Injury (ABI).  Now Isabella needs help getting dressed and that makes her feel like a baby.

As the episode of Cougar Town came to an end, the characters all had lunch at Grayson’s pub. Tom’s daughter said and I quote “The food at Gray’s pub even tasted like it was made by someone with a head injury.”  I found this statement to be extremely hurtful and highly offensive.  Many brain injury survivors go on to be productive members of society.  They go on to have careers and families.  I am not sure how anyone could tell whether food was made by a brain injury survivor or not.  Food can be horrible regardless of who makes it !

In my opinion, this episode of Cougar Town perpetuated the stereotypical brain injury survivor as one who is stupid and child like.  Brain injury survivors are some of the strongest, most amazing, most brave and insightful individuals I have ever met. They have survived what should have killed them.   Many brain injury survivors spend the rest of their life trying to regain what had been lost because of their injury.  They are forced to deal with the physical, psychiatric, psychological, emotional and behavioral effects of the damage to their brain.  They are abandoned by a society that sees them as “fine”.  They are isolated by family, friends, co-workers and others who have no idea the extent of the challenges that they live with daily.  This episode just adds to the misperception.  We can change the way Hollywood and the world perceives brain injury by continuing to raise awareness and by educating others.

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.