Wednesday, October 08, 2014
Over the last 2 months we have said goodbye to several people instrumental on our journey. Goodbye is never easy, though there are certain scenarios where it is meant to be for it is part of a necessary cycle. Though the intellect understands, it does not make it any easier on the heart.
While we did not have the opportunity to work with her for long, we saw the glimpse of possibilities through a summer intern named Kelsey. She brought much to the table. Her smile and youthful enthusiasm were matched only by her knowledge and will to succeed in her quest. And that quest – simply to see Tori succeed. I cannot imagine where we would be had she not decided to go out for coffee and to read the paper one morning. This simple choice led to an interesting read for a how I spent my summer vacation assignment titled, “Volunteering with a leading cutting edge research group making advancements in Augmentive Technology”.
Next, we said goodbye to James our music therapist. He was always so gentle and sweet. His smile and light blue eyes twinkled at the sight of Tori. She melted in his presence and giggled when he sang and guided her hands along the piano keys. He moved on to bring the gift of song to children at a major hospital system in Boston.
And then there was Steve our physical therapy student. Ever the professional, he was always so proficient, and polite. And he was also wrapped around her little finger. Gosh he loved working with Tori. She could pull all the barriers down with one dip of her head and an upward glance peeking at him through a stray strand of hair. His studies here are concluded and his internship and travels await him.
Finally, our last goodbye is probably the hardest. This will be made most difficult because she will be within our reach but unavailable to us. For years we visited this physician once every quarter for Botox injections to relax tone. Not one physiatrist in this entire state had a practice devoted to brain injury. There were sports related practices galore but none related to our cause. Then finally, on one of our quarterly visits she told us she was “moving” over and taking charge of rehabilitation services. We were home. And it was a loving and nurturing home. We grew under her tutelage. Now, she is moving on to an Institution that recognizes and will maximize her worth allowing her to nurture so many others in their most vulnerable states while inpatient and in the infancy of their recovery journey.
And while we will feel the void left by all I am reminded of the lyrics from one of my favorite songs:
I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…
Like a comet pulled from orbit
As it passes the sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good
Saturday, September 13, 2014
Today I run the BoldrDash – for the 3rd time. In many ways, each time is a first. A first, not only because Lynn Hall the race director and her team keep coming up with a new and improved course, but because each time another layer is added to the reasons for why I choose to be BOLD.
My 1st BoldrDash was more of a spiritual quest, a journey to unlock the metaphysical chains that bound me emotionally, a freeing if you would, a “let it go” to a way of thinking and a way of living that didn’t quite go all the way through. I prepared mentally and physically for that challenge and when the starter pistol rang on September 15th, 2012 I was in the best shape of my life. I tackled every obstacle (except one –the monkey bars) with zest, a smile never left my face and my mantra of “anyone can do one more,” ringing in my head. I crossed the finish line with the best mental focus I had had in years. And while I may have entered the race by myself I never felt alone. With each stride I felt the strength of all those who love and support me.
It was done. My challenge complete. I could put it behind me. But something happened. A band of people came forward to join me, to form a team, to be BOLD. In 2013 we were small in numbers but we were mighty in spirit and we were Torinados. I was not nearly in the same physical shape as the year before and to my delight my race partner was more than willing to push, pull and drag me along when needed. One of my favorite moments captured on film is a picture of my partner and I standing on pegs on opposing sides of a wall leaning in, shoulder to shoulder, bound to each other making our way down the course. My son and I navigated that course and crossed the finish line hand in hand. There are no words to describe that feeling.
The Torinadoes are a force to be reckoned with. Our numbers have grown. At Yawgoo Valley today among hundreds of other runners and spectators there will be a team. This team is comprised of friends, old and new and family. On the start line today will be my son, sisters, my brother, nieces and nephew. I will be running with friends, friends of friends and those I hope to come to call friends. Cheering us on from the sidelines will be a huge support system sending love, best wishes and bearing witness to our accomplishment. With my daughters name on our chests how can we go wrong.
And today, the third time – the charm. 2014 has been a challenging year. I’m not where I would like to be as far as race ready. I haven’t gotten back to the Cathy of 2012. But that’s okay because I won’t stop trying to reach my goals whatever they may be. That’s what I learned from my 1st Boldrdash. Whatever your obstacles are in life the only time you fail is when you don’t try. If you can’t go over it, go under, if you can’t go under, go around and sometimes you just have to go through it.
Someday I would like to run faster than a speeding bullet, jump higher than a small building or at least onto a box, but for now being able to get “up” a ski slope rather than down it is a triumph in itself. The athlete buried inside me hasn’t given up yet. Maybe it’s the 4th year. Whatever your goal is go for it, be BOLD. That’s what the Torinados are just about to do – wish us luck!
Wednesday, April 23, 2014
Source: Providence Journal
BY GABRIELLE M. ABBATE
Rhode Island is a state with some of the world’s greatest parents — parents who have the confidence to understand they don’t need to be the “cool” parent, who don’t need to be their child’s best friend. We have parents who do the right thing every day, even on days when their children tell them they “hate” them.
And to those parents who have no clue? It’s okay if your child “hates” you. Good parents know two things: Their child really doesn’t hate them but is simply trying to manipulate them; and when they are temporarily hated it is because they did something to protect their child.
We’re tired of apologies. We’re frustrated with parents who host parties and then serve alcohol and drugs to their children’s friends when they don’t even know if that friend is a diabetic, is taking an anti-depressant or has a medical condition that could be life-threatening when mixed with alcohol.
How is it that these parents and adults disregard their moral responsibility and even the financial liability of creating a dangerous environment that may eventually ripple out onto our streets as drunk and drugged driving fatalities, alcohol poisoning, drug overdoses and other serious injuries? Their unreasonable fear of alienating their children and doing the right things leads them to do very dangerous things.
In the end, they rarely win. No one does.
Few parents would let their child participate in a sport without protective gear. Yet these same parents offer them brain-altering substances. They fail to appreciate the reality of addiction. Talk to most addicts and many can tell you the exact moment in their teens when they took their first drink. Today their story is one of addiction or struggling recovery.
Many in our society are trying to get guns out of the hands of young people, to keep them safe and out of harm’s way. We lock up guns in our homes, but we seldom lock up alcohol. We invest billions of dollars in our educational system but lack the common sense to keep young people safe for learning with well-developed brains. We applaud parents who hide poisons, plug up electrical sockets and put safety gates in front of staircases to protect young children. But how does it happen that we become so overly confident with their safety at age 12 to 18 that we deliberately introduce them to dangerous substances and dangerous environments?
These questions beg a more fundamental one: When should a parent or a community abdicate the safety of a child? When the child is 5? 10? 15? Yes, children want to become independent of their parents. They want us to step away. That’s the natural order, something they should desire. But their choices are not always in their best interest. Whether they are 3 or 16, we owe our children protection and safety. It is their right to receive them and believe that they have them.
There are fundamental things parents can do to help eradicate this growing problem:
British blogger David Bly once said: “Your children will become what you are; so be what you want them to be.”
This commentary piece isn’t filled with statistics that support why we need to remain vigilant. The Internet is filled with credible research. We encourage parents to look at the numbers and look in the eyes of any child and solemnly pledge to protect him or her.
Gabrielle M. Abbate is executive director of the Rhode Island chapter of Mothers Against Drunk Driving.
Wednesday, April 23, 2014
Source: Providence Journal
WARWICK, R.I. — The North Kingstown police reached a deal Tuesday to drop a charge that a local mother violated the state’s social-host law by allowing teenagers to drink at her daughter’s 16th birthday party in exchange for her contributing $5,000 to Mothers Against Drunk Driving.
But MADD, whose mission is to stop drunken driving and prevent underage drinking, wants nothing to do with the money, according to Gabrielle Abbate, executive director of MADD in Rhode Island. The organization will not accept the contribution.
“The sentence sends the wrong message about the dangers of providing alcohol to those who are underage,” Abbate said. The law needs to be enforced to its full extent and should apply to everyone regardless of their financial situation, she said.
Under a plea agreement reached before Judge Frank J. Cenerini in Kent County District Court, the police agreed on Tuesday to dismiss misdemeanor charges against Jayne Donegan accusing her of violating the social-host law by allowing underage drinking at her 251 Wilbert Way home and of assaulting a police officer.
In addition, Donegan entered a not guilty filing to a charge that she obstructed a police officer who responded to her home. A not guilty filing means the charge will be dismissed if Donegan is not arrested in the coming year.
Donegan’s lawyer, William P. Devereaux, said his client learned from the experience, namely how fast word spread about the party, spurring uninvited, older guests who drove cars to descend on her home. Her daughter’s invited guests did not have their drivers’ licenses, he said.
“It was a situation where there was never any evidence that she procured alcohol or allowed alcohol to be consumed in her house,” Devereaux said. “She has not admitted to anything.”
Reached Tuesday night, Devereaux said that Cenerini mandated the plea agreement.
If MADD chooses to reject the money, “that’s entirely up to them. The contribution was made in good faith by Ms. Donegan.”
He said he would meet with the town prosecutor about other possible recipients.
The police went to Donegan’s house Jan. 25 after they received a complaint about teens drinking alcohol and running through the neighborhood and urinating in people’s yards, according to a police report.
When the first officer arrived, he saw a “swarm of kids” running from the house and spoke with a boy and a girl outside who admitted that they had been drinking, the police report said.
The police report states that Donegan initially refused to let police in, saying that she was an attorney who knew her rights and that they did not have a search warrant. Donegan’s LinkedIn page lists her job as Textron’s senior associate general counsel.
The police said they advised her that they had reason to believe that there was underage drinking on the property and that they also needed to check on the well-being of juveniles.
The police said that while Donegan was calling 911 to have the officer removed from her house, he checked the basement where there was loud music, black lights, glow sticks and bottles of alcohol scattered about, as well as a “beer pong table” for the drinking game. The police say that two minors were taken to a hospital for intoxication and that another minor received a summons for marijuana possession.
Officials have said that the party, which was reportedly a 16th birthday party for Donegan’s daughter, was attended almost exclusively by East Greenwich teenagers.
North Kingstown Police Chief Thomas Mulligan said Tuesday that he believed the disposition was appropriate given that Donegan had a clean record prior to the incident. Donegan did not get preferential treatment, he said.
Mulligan was not aware of MADD’s position and could not be reached for comment Tuesday night.
Those accused of violating the social-host law face a misdemeanor charge. First offenders who plead no contest or are convicted face $350 to $1,000 in fines, up to six months in prison, or both.
Wednesday, March 26, 2014
Life as you know it can change in a moment. Most times change of any significance is the outcome of some master plan or concerted effort towards a desired goal. And sometimes that change can be the result of a choice, self-directed or randomly selected – consequences you could never have predicted, imagined or even thought possible.
Today marks 11 years since a change of unpredictable, unimaginable magnitude – activated by another’s choice – struck our family.
So impossible, at times it seems a lifetime ago. Yet, at others, because the wounds are still so raw, feels as if it just happened.
The distance between “then” and “now” could be measured in so many ways. It could be measured not only by the marks on the calendar but by the rounding of my shoulders or the sluggishness to my step. It could be measured by my sons’ amassed knowledge of neural activity and his familiarity with rehab terminology. It could be measured by the marked improvement in my daughters’ stamina and endurance for therapy or by her increased need for and the sheer numbers of her durable medical equipment.
It is easy to imagine the expansive list of things that will never be because of this change and to measure the void these will leave. You cannot deny the loss of life as we knew it, or the pain and grief it has instilled. It stares at you, it haunts you. It could, if you let it – threaten to pull you under.
So much was taken on March 26, 2003 – so many hopes and dreams for the future were wiped away. Yet, so much remains – for we still have each other. Since that fateful day, always steadfast by my side is my rock – my son. Soon, he will marry and together, with the young woman he has chosen to be his wife they share in the love and care of Tori. At the center of us all is Tori. To have her truly gaze upon you with those big brown eyes stops you right in your tracks. And, if you are lucky enough to be gifted with a smile, it is as if you have been granted absolution such is the power of her spirit.
There are moments as a parent that make your heart leap. The moments when your vision immediately begins to cloud for you are unable to see clearly through the rising tears and you feel a catch at the base of your throat. For me all it takes to provoke these feelings is the sight of my children, engaged – loving – together.
It is the moments, the minutes in our lives that all add up to complete the story. For while it is wonderful to project, or expect a lifetime – what we truly have is the now.
It is the moments when you realize how much a smile – a word – a glance, can change your day.
It is the glory of and the gratitude for the warmth of the sun, reassuring conversations, and the sound of infectious laughter. It is the ability to watch your child have a restful night and an uneventful morning. It is the army of people that have watched over, prayed and cared for us that have created moments so beautiful and loving they have touched us to the core. We can measure these years in the moments spent with family and friends, old and new that have come to walk with us on this journey.
60 minutes an hour. 24 hours a day. 7 days a week. 365 days a year. Yes, today marks 11 years or 5,781,600 minutes. Moments to reflect – to appreciate – to love. Because, Life as you know it can change in a moment. Choose well.
Monday, January 06, 2014
Source: Providence Journal
PROVIDENCE — Dan Bacher has an easy, gentle manner as he intently watches Cathy Hutchinson’s head and eye movements for the subtle responses she offers as they communicate.
He has driven to the East Taunton, Mass., group home where Hutchinson lives to attach a new Windows computer tablet to her wheelchair and show her the software he and a team have developed for her. Since Hutchinson suffered a brain stem stroke in 1996 that left her body nearly motionless — but her mind alert — she has lived with a condition known as “locked-in syndrome.” For her, communicating is difficult and time-consuming, but she persists.
Bacher launched the nonprofit, SpeakYourMind Foundation Inc., last January to create better, less expensive communication tools for Hutchinson and people with degenerative neurological diseases.
He began SpeakYourMind while working as a research engineer at BrainGate, the collaboration between Brown University and a number of renowned academic institutions that has pioneered an experimental brain implant. The BrainGate team helps people with severe paralysis interact with computers and regain some movement.
Bacher, 29, still works at BrainGate part-time, but he’s focusing most of his efforts these days on developing SpeakYourMind. He’s collaborating with Brown students, who’ve helped him determine how to take the nonprofit to the next level.
“He’s a unique individual. … He relates to academics and the medical community and the patients and the students,” says Brendan McNally, associate director at Brown’s Business Entrepreneurship and Organizations program, who has connected those students with Bacher. “He’s exceptional. He’s got some of those God-given skills and qualities.”
Bacher said Providence is the ideal place to locate SpeakYourMind because it has the right mix of resources.
The Brown University Institute for Brain Science, for example, is conducting groundbreaking research with BrainGate. Engineering students from Brown and the University of Rhode Island are equipped to solve real-world problems. And, Bacher says, the Rhode Island School of Design offers an “amazing addition” to the world of assistive medical technology, which hasn’t relied much on design until now.
Plus, Bacher praises the local startup scene, including groups such as the Founders League and Betaspring, as well as the social-enterprise movement that’s working to develop nonprofit and for-profit entities seeking to solve world problems.
BrainGate drew Bacher to Rhode Island in 2009. After he earned a master’s degree in biomedical engineering from the University of Pittsburgh, he was working toward a Ph.D. there conducting research with monkeys to create technology that interfaces with the brain. But he abandoned that Ph.D. program for the opportunity to conduct research with people, instead, at BrainGate.
Dr. Leigh Hochberg — one of the BrainGate doctors, Bacher’s boss at Brown and a member of the SpeakYourMind board of directors — says he sees “great synergy” between BrainGate and SpeakYourMind. Like Bacher, Hochberg has seen the limitations of systems designed to help people communicate.
Regardless of whether people involved with BrainGate have been using inexpensive or expensive devices, Hochberg says nearly everyone expresses frustration that the equipment hasn’t worked, is unreliable, takes weeks to get fixed or doesn’t get repaired at all.
“They were more often in the closet, stacked up with other technologies that had failed, than actually being used,” Hochberg said. “And while that might be OK for a toaster, it’s not OK if it’s somebody’s primary method for communication.”
Both Hochberg and Bacher met Cathy Hutchinson through BrainGate, where she was one of the first participants in their clinical trials.
A computer chip implanted in her brain allowed her to move a robotic arm by thinking about doing so, pick up a coffee, move it toward her lips and sip the drink through a straw. Yet she struggled with her existing communications technology.
Watching her, Bacher says, is how the idea for SpeakYourMind was born.
He began crafting low-cost alternatives. He posted on Internet forums, seeking volunteers to help alter software to meet the needs of individuals. People responded and gave their time to help those in need.
At Hutchinson’s house on a recent morning, it took a few minutes for her to communicate her strongest need to Bacher. Finally, an email she had sent earlier arrived in his inbox: Could he contact the company that built her $10,000 communications device and ask them to fix it?
Of course, he told her, but instead, he was ready to remove that old computer from her wheelchair and give her the Windows tablet — which cost $800 — and teach her how the new communications software would work.
Relying on the tablet’s built-in camera to observe her ever-so-slight head movements, Hutchinson began using a “radial keyboard” that displays letters in groupings, like those on a telephone dial pad. As Hutchinson’s head moves, the computer’s cursor selects letter groups, and algorithms work to offer all the possible words she might be spelling out. Hutchinson then selects the correct word, sometimes before “typing” all the letters, so she can write her thoughts with the computer and communicate with someone in the room or via email.
It doesn’t work perfectly yet, but Bacher showed her how it functions, gave her time to practice, and took note of what worked and what didn’t.
“It’s still a little sensitive, huh?” Bacher asked as he watched her attempt to select letters. “You like it?”
Hutchinson, 60, welcomed The Providence Journal into her home to watch Bacher work with her. But she answered questions before the visit, in a short email she composed with her old communications software, a task that took 45 minutes.
“I’m excited about the future of sym,” she wrote, using an acronym for Bacher’s nonprofit. “I have faith in sym and I’m very optimistic about the help it will bring to so many.”
Bacher tells Hutchinson how much he likes the sticker she displays on her wheelchair: “My legs don’t work, but my brain does.”
View the original Providence Journal article.
indiegogo.com/projects/speakyourmind-foundation
Wednesday, December 04, 2013
It is midnight and after arriving home from the MADD Candlelight Vigil Tori is finally settled in bed.
After all the years of attending this solemn event this is the first year I did not trust my voice, or my legs enough to walk to the podium to speak and to light a candle. It certainly was not for want or desire.
It had been a challenging day from durable medical equipment being well…, not so durable, to a young woman being uncomfortable and inconsolable, to trying to replace a cancelled caregiver – the hits kept on coming. Finally, things seemed somewhat steady and I was even able to meet my commitment to perform, go to work and leave the house for a total of 2 hours.
Once I returned it was time to leave for the vigil. As Tori descended in the lift I noticed the wheels of her chair were jammed and I scurried to meet her. Instead I fell down the stairs breaking my shoe and spilling water for her evening feed all over me. Righting myself and unjamming her wheels we proceeded to enter the van. As I backed up the ramp my good heel caught in the slat, I walked out of my shoe and turned my ankle. Continuing on, securing Tori in place and locking her in, I finally sat in the driver’s seat. I then discovered I had the wrong set of keys. Undeterred I ran into the house, grabbed the correct set, came back out, turned on the ignition and realized we needed to go back inside, change and start all over again.
At this point I wanted to put my head in my hands and cry. Not because of the series of mishaps befallen me but more so because I knew we would soon be in a room filled with people unable to experience such day to day mishaps.
Had I lit a candle this evening I would have lit one in honor of missed opportunities. Not only the missed opportunities of picking up dirty laundry off of the floor although it’s been discussed a hundred times, or the missed opportunity to remind someone to stop and get the dry cleaning on the way home, or to tuck in your shirt, or smile for the camera. But I would light a candle in HOPE that all of us do not miss the opportunity to tell those around us how much we love them, or miss the opportunity to say thank you to those who keep our roadways safer for all of us and to those who put their lives on the line every day for people they have never even met. I would light my candle in HOPE that we never forget that even in the face of unbearable pain and grief and loss at the heart there is love.
I look forward to the vigil every year. Yes, I am certain the anxiety of what was to come contributed to my clumsiness throughout the day. It is hard to put into words the feelings that go into this evening. And yet, I cannot imagine not being there. I cannot imagine not being with those who know, those who you only have to look into their eyes, to feel their arms around you and those for whom no words need to be spoken to understand. While the grief is palpable, so is the love. I light my candle that no one miss the opportunity to experience unconditional Love and eternal Hope.
Tuesday, October 29, 2013
When Tori was 9 years old she rode a horse for the first time outside of birthday parties and pony rides. The horse was named Sparky and within 10 minutes he broke away from the trainer and threw her to the ground. Tori got right back up and on the same horse.
Today, all these years later, once again Tori got back in the saddle. The farm was traded in for a therapy room and although this horse was named Sparky as well, he required an electrical outlet for his inspiration rather than a special treat.
Hopefully one day the mechanical horse will be replaced with a real one and then it will be Tori herself who will be “throwing” all of us onto the ground and on our knees in admiration and thanks.
Monday, October 14, 2013
Webster’s Dictionary states the definition of anticipation as 1. A feeling of excitement that something is about to happen and, 2. The act of preparing for something. Carly Simon says “anticipation is making her wait”. I say, anticipation becomes reality Tuesday morning, the 15th of October.
This feeling of excitement something is going to happen has been a long time coming. It began in the middle of a sleepless night in 2008 when the only light in my room came from the flickering of the television. In awe I watched a program repeated from its original airing in 2006 of a doctor making discoveries in the world of altered states of consciousness. Not wanting to break the spell I was under, as if any sudden movements or introduction of increased light would arouse me from some dream, I reached to open a nightstand drawer and fumbled to find a pen. With pen firmly in hand and finding no pad to write on, I grabbed a Kleenex box, turned it upside down and began to write as the credits rolled.
Thousands of Internet searches, hundreds of emails and phone calls, dozens of case studies, a few well placed introductions and 5 years time have led to this moment.
9am tomorrow morning the journey begun in 2008 continues-but this time rather than on the outskirts-through the front door.
“We can never know about the days to come” – but…, Life as you know it CAN change in a moment – or, over the course of 5 years. Thing is you’ll never know unless you try…….Anticipation is making me wait….
Friday, September 27, 2013
On September 27, 1990 a beautiful light came into this world and appropriately we named her Tori. There was no way we could tell what lie ahead and yet her name says it all. In Japanese Tori means bird, able to fly above and in old English the translation is for victory or victorious. The American translation is conqueror.
My translation is a joy to behold, an honor to love, and a privilege to call my daughter. Along with her brother she has brought incredible meaning, unconditional love and, just as children should – lots of gray hair into my life.
23 years old baby girl. Momma loves you.
