Notes and ideas from Terry Morgan

Finding the positive in brain injury

Anyone who can see the positive side has paid a price to see it.

This is how I arrived at the word price. When I was 38 years old I was on top of my game. A youth Pastor of one the largest most active and respected groups in Cincinnati, Ohio. We were known throughout the states and in many parts of the world. The ministry was good, times were good, and in fact I felt like a million dollars.

Brain injury changes everything

Then on May 19^th 1995 it all changed. While on a mission trip to Brazil, I fell 20 feet head first. Among many other injuries, I suffered a Traumatic Brain Injury. From feeling like a million dollars to having no feeling at all. From a million dollars to worthless. It has taken me 14 years and many experiences to where I am today. Which being is a survivor who now can see the positive side of TBI.

The price you have paid maybe higher than mine. For that reason, I don’t expect you to view TBI the way I do. Please allow me to share how after 14 years I have gotten my worth back.

Hypothetically my life was worth before the accident $1,000,000. To get my worth back, I have put some prices on things I consider the positive side of TBI.

• More time with family – Priceless
• Partially restored physical health – Priceless
• Partially restored mental health – Priceless
• Percentage of hearing restored – Priceless
• Percentage of tastes restored – Priceless
• Percentage of memory restored – Priceless
• Belief in people because of their response to offer help – $50,000
• Spiritual side of life increased – Priceless
• Confidence to do things again – $250,000
• Empathy for people increased – $25,000
• Sympathy for others increased – $25,000
• Love and understanding has increased tremendously – $50,000
• Aware of how much self worth is worth – $150,000
• Self worth comes from within not for something you can do – $150,000
• Real identity comes from who you are on the inside – $175,000
• Living within boundaries – $25,000
• Knowing we have limits – Priceless
• Being ok with who you are now and not what you were – Priceless
• Realizing your mental state might have changed but you are still priceless  – Priceless
• Understanding you can start over building a life without some of the baggage you had before – $50,000

Priceless!

I can see now things are worth much more than before. Some things are priceless and others add up to worth I had before.

The prices I gave certain items are much too low. For illustration purposes, I gave them an amount. I’m a much richer man because of my TBI.

It is my opinion that when we look at life from our heart and not circumstances we all can be wealthy. No one can take away that away from you. It is my prayer your life will be worth more than you ever imagine. Walk with your head up and know you are PRICELESS.

By Gwendolyn Gibbons

Life after traumatic brain injury

I’m one of the lucky survivors of traumatic brain injury (TBI). I am visually impaired in my right eye, have a few memory problems I guess, but I still have full use of my extremities. I can perform most household tasks with minimal guidance, and still enjoy many of the things I did when I was young, like going to parades.

I’m still living with my 77 year old Mother, and have the majority of my life. It’s a good thing, we have fun together, because in 1973 I was involved in a car accident, and needed her even more. I was only 22 years old then. I was working as a secretary in the records department of a local hospital, and was headed to classes at the business school I was attending when the accident happened. It was raining out, and the roads were slick. It was definitely not a day for a parade, but my life’s little parade made a sudden turn that day, one that wasn’t much fun. Luckily I was the only participant that day, so no one else was injured. The accident left me with a head injury, lots of broken bones, and an injured right eye, an eye that all these years later, still only provides a foggy vision.

Living a new life as survivor of a brain injury

But I was young. I had things to do. Since when has a broken bone stopped a young person? I don’t know how long I was unconscious, but I do know that once I woke up I was determined to get back to walking on my own as fast as I could. I couldn’t drive anymore, but I could sure walk to get where I needed to go, and I did.

I’m sure like most brain injury survivors there are periods of time I’ve forgotten, but I seem to be able to remember recent events, and luckily a lot of memories of my childhood are still there. Special times and events I always looked forward to, as well as memories of things most young women enjoyed doing. Memories of the “parades” in my life are still there.

Memory is still there after my brain injury

Perhaps one of my most precious memories is of those I spent on my Grandfather’s farm in Emporia, Virginia. I spent 16 summers of my life going there to help pick cotton and corn. They were summers that gave me a chance to spend time with my mother’s siblings, being spoiled and encouraged at the same time. I was encouraged to set goals for myself. They wanted me to do more with my life than they had with theirs. I was trying to do just that when my accident occurred.

My mother has grown comfortable over the years with my disability, and has no problem leaving me home alone while she goes out with friends sight-seeing at night, or hitting yard sales looking for bargains during the day. While she is out I’m busy doing chores around the house, thumbing through fashion magazines, or checking out the sale ads like I did when I was younger. When she is home, we enjoy watching Fashion Shows on TV, or the station showing homes for sale in the area. Come to think of it, we’ve both always enjoyed shopping, so it’s a good thing she can still drive, because I can’t anymore. She takes me anywhere I need or want to go, like to the 4th of July Parade here in my hometown of Hampton, Virginia.

I’ve always loved seeing the people along the streets, watching the bands and floats go by, hearing the squeals of the children, and hearing how people applaud the effort others have put in to help us enjoy it. I still enjoy going to movies too. I may not remember the entire thing, but who cares. I had fun. I’m still young inside, and I plan to remain that way.

Meeting other survivors

As you know by now, my mother does the driving for me. Several months ago she began to drive me somewhere special twice a week. She drives me to a Clubhouse where I can interact with other brain injury survivors. I’m a member of the Kitchen/ Maintenance Unit there. I’m still performing household chores, but I’m learning more about how to multi-task and work with others to complete a job. If I have a question there is someone there to ask. I participate in the Meals on Wheels program in the local area with other members, and I’m doing things I never thought I would do again. I’m having fun and enjoying the parade of a lifetime. I’m part of this parade.

Denbigh House is located in Virginia.

Clubhouse for people with brain injuries denbighhouse@gmail.com or www.communityfuturesva.org

By Mary Margaret Yeaton from New Hampshire

Does anyone know where I left my brain this time?
Yesterday they put it back in my skull
But it must have run away while I was asleep
Because I can’t find it today

I thought I saw it in my dream
It didn’t look so good
But the damn thing had found my car keys
So I just figured it would wake up with me.

I am still looking for my keys
They must be with my brain

I already checked under the bed,
I asked the dog if she took and ran off with it.
I even checked the freezer hoping the kids didn’t
mistake it for hamburger.

I looked in the mirror
And didn’t see anything but my face
I asked myself where on earth I put it this time
I won’t tell anyone I answered myself
They will only laugh and say,
“Why that is ridiculous,
It is right where you left it!”

Where is that? Where is the place I left it?

If you think looking for your car keys is a pain
in the neck,
Just try looking for your brain!!!!!!

By Diana Lund in Illinois

Brain injury often goes undiagnosed – it’s just an accident!

I had a granduncle who, according to the family lore, was accident-prone. When he hammered, he missed the nail, struck his thumb and dented the wall. When he swung an ax, the tree fell his way. Relatives recounted that he broke every bone in his body and some bones more than once. He’s had several accidents on the job at the quarry, several home accidents and several car accidents – including a car accident on the first day he got his license back after several years of not driving. Good-hearted Alfred was hoodwinked by gypsies; they stole his wallet and later he let them into his home and they stole the contents of that too. The extended family thinks of him as having been normal – he played a savvy game of pinochle – with a string of bad luck. Now, I think that there must be some tie to brain injury; all those falls and mishaps are characteristic of a person with brain injury.

People think I’m normal but I have a brain injury

People call me normal too. My face and body are symmetrical and I’m mainly coordinated again. In conversation, I give relevant responses enunciated clearly. Only I can tell my wit is missing and my vocabulary shortened. Inside I scramble to keep up, to sound normal, to appeal natural. During the silence of night, I long to shed my deep-seated, lost feeling.

It won’t leave. All experience provokes it.

At a bike club’s invitational, I am handing out t-shirts at the registration table when a slim man, approximately my age – fortyish, approaches. His words startle me. “There you are. I’ve been looking all over for you.”

The rider obviously knows me, but I have no recollection of him. Not unusual, I play along. Possibly something he says or does will generate a flicker of familiarity in my brain. “Well, you found me,” I respond.

He continues, “I wanted to make sure you saw me so that I get credit for participating.”

Evidently, I’d pressured him into supporting our charity event. I want to show gracious acceptance of his financial gift. “Consider yourself with credit,” whoever you are.

“Have a good ride.”

Pleased with my acknowledgment, he departs. He has no idea I don’t know who he is. The next time I see him and don’t remember him, I’ll pretend again. And by god, I hope that I give him his credit.

Hiding my confusion after TBI

My confusion doesn’t always slip smoothly past others. At the end of a work day, in the block-long and block-wide company parking lot, the search for my car begins. Wandering down aisle after aisle, I run into a coworker who asks, “Can’t find your car?”

“Yeah, I’ve forgotten where I parked it.” Again.

Empathizing with me, she replies, “Oh, I’ve been scatter-brained like that before.

That’s normal. Good luck on finding it soon.”

Explaining my behavior after brain injury

People want to idenfity with their chums and naturally, try to explain others’ behavior by self comparison. If they have acted this way once before, then my behavior is normal.

They miss the totality of my existence; I make a string of mistakes—one after another after another. They are not seeing behavioral exceptions, but the rule.

Not only that, but the tips of our icebergs are all that we have in common. Upon finding her car, the placement jogs memories of having parked there. My experience is more like a valet had parked my auto; I can’t access parking-the-car memories. Having no internal record of the recent past feels frightening and hollow, like watery remembrances swirling down a tub with a leaky plug, abandoning me naked and cold.

Is a life lived if it is not recorded? Did “I” really exist?

Repeatedly telling me, “I understand,” minimized and invalidated my experience, no matter how well intended, no matter how much I wished it true. Out of frustration, I sometimes blurted out to the caring person, “But, I’m not normal.”

Typically, I heard back, “It can’t be that bad. I forget things, too.”

Unable to explain myself in enough detail on such short notice disconnected us further.

Mild brain injury is not so “mild”

Particularly after the first year of mild traumatic brain injury from a car accident, I had silent and invisible disablements, indiscernible to my daily contacts. If my acts weren’t flagrant, they’d lump me into slightly-off-my-game normal. Too many of the same errors and the tone would change to, “Okay, stop doing this. Stop being different,” with possibly some sardonic ribbing. Even people who knew I had a brain injury tended to discount the diagnosis in favor of my having control over my brain’s functionality.

Why should someone who looked normal not be held to the same standards as everyone else? I began to feel that it would have been better if I had a visible defect, like a black-and-blue shaved scalp.

Like my girlfriend Jill’s nasty head gash from a car collision. The doctors stapled her flesh back together. People became sympathetic and compassionate when they saw the dried blood, the jagged cut and the metal holding her brain in. I watched her for signs of a more profound injury, brain injury, which, fortunately, I could not find.

Unlike her, I looked unscathed after my closed head injury. The broken part of me was encased behind a smiling, pretty face, and mostly, my internal discontinuity appeared singularly as within-most-social-limits. No extra care needed here.

That’s just nonsense. When the brain, the master controller of operations, goes down, it can take years of intricate and delicate work to get that system running again. The healing process takes longer than the injured person’s acquaintances care to remain attentive. People prefer to think that you are fully recovered. They fill in erroneous reasons for unusual behavior. I didn’t return their phone calls because I chose to ignore them, not because I’d lost the inner nagging voice to remind me to call. I didn’t answer their email because they were unimportant to me, not because I hadn’t formulated an answer yet. Word spread around the office about my poor attitude and bad work ethic. My brain’s damage unrecognized, the gossip exacerbated my problems.

Normal is not the answer

After enough “You’re Normal’s”, I cringed at the glossing-over, uninvolved response. “You’re normal,” a superficial slap in the face, “You’re normal. You’re normal,” a platter of platitudes, stung deeply. Each day I strained toward attaining the far away goal of normal I supposedly already had. Suggesting ways to remember where I parked my car, reminding me about an unanswered phone call, or trying to calm me down when I over-reacted, would have eased my load until I could learn to compensate for my faults. Increasingly isolated, I came to resent “normal” people living blindly to my abnormal life. Another normal-looking brain injured woman I’d met tried to commit suicide because she couldn’t overcome problems that friends and family didn’t view as sizeable.

Nothing irked me more, no single misunderstanding damaged my social life more, than the misnomer of normal. Whoever would have guessed during my young, smart life that, someday, I would aspire to be normal, and afterward, daily, people would assure me that I was.

Work to include others authentically. Diversity enriches our lives.

By Mary Margaret Yeaton

Life was full of terror after my brain injury

I didn’t make this one up on my own. The inspiration I share with you is the blossom in a simple gift of kindness given to me.

It was Easter when the aneurysms in my brain ruptured and killed a portion of my right frontal lobe. Within weeks I was home – walking, driving and pretending to think that everything was okay.

By early summer I could no longer hide the terror I felt for myself. I was forgetting to eat, shower and take my medications. I seemed to have forgotten how to make coffee or soup. I was forgetting where my kids were and what I was supposed to be doing. Stuff I knew when I first got home, I think?

The gift of color helped me cope with the effects of my brain injury

Then a friend came over to visit and brought me a gift that colorized my life. With her, she brought a dry erase board and colored markers. With 4 simple colors we put together my first daily coping skill.

First we used the black marker to section off days of the week. Black became my separator color. I picked red to write down things about me, like my doctor’s appointments. I actually wrote, EAT, SHOWER, TAKE MEDS in red on each day of the week. I picked green to write things about my son, because he likes soccer and green reminded me of him. So I wrote “pick up @ 5 pm soccer” down on the board. Lastly blue was perfect for my daughter because that is our favorite color. So I wrote “work 6 pm” to remind me to pick her up from work @ 6.

When I held this board in my hands and looked at the colors, immediately I felt the recognition to the things in my life. They connected. Finally something to help me remember to take care of me and be the mother I want and need to be.

Over a year and a half later, I have graduated from dry erase boards to calendars and my day timer. My colors are still with me, from the creation of that dry erase board to this day. Every Sunday I write on my spaces with red, green and blue. I am no longer terrified if I forget something I think I should know, because if there is an important item it is written in red. If something refers to my son, it is in green and if it refers to my daughter, then it is blue. Schedules, medications, appointments, meetings and mom duty all have their color for my brain.

A color system for my brain

Many people involved in my recovery have told me what a valuable skill and tool I developed. My color code system has helped me retrain my brain to have a short term memory, helped in my cognitive processing, organizing and prioritizing.

What I know is how much safer and confident I feel getting through each of my days. I am able to make all of my doctor’s appointments and know where my kids are at all times. For if I forget, I have my notes in color to remind me. I feel that I have more control of my life and my recovery.

I know I am a stronger survivor and a better mother.

By Carole Starr

• Asking for and receiving help are not signs of weakness. They are the first steps toward regaining my independence in accomplishing tasks and goals.

• I am a strong person. I may have weak moments and I may get scared, but my determination, motivation and refusal to give up will always win out.

• I can work toward my goals, but I can also be happy with where I am right now.

• Giving in is not the same thing as giving up. Giving in means taking care of myself and doing what my brain and body need to continue to recover.

• I am not like Humpty Dumpty. My self-confidence, self-esteem and sense of self may have been shattered, but I will be whole again, not just a cracked version of my former self. I will emerge different, but stronger.

• There are things I like about the “new Carole.”

• My empathy and perception skills are stronger.

• I more clearly understand pain, suffering, failure, frustration, depression, loss of hope, and on the positive side, the joy in small things.

• In many ways my life has more balance than it did when I was frantically rushing from one activity to the next.

• I have discovered that I really enjoy making crafts and gifts for family and friends.

• I understand how much a small gesture – a card, a phone call, an e-mail, a hug, a plate of muffins, a flower – can mean to someone who is going through a rough time. These things are often lost in our busy, time-starved world.

• I am closer to my family and friends. Even though some have drifted away, many of my relationships have deepened. I let people in more. I accept help.

• Even though I can’t work right now, my sense of career has never been stronger or clearer.

• I want to help others who are adjusting to having a disability, and I want to incorporate the arts into that. It’s as if the brain injury somehow added the missing piece to the skills I’d developed pre-accident.

• Attaching deadlines to my goals only sets me up for failure, frustration and loss of confidence. My brain is in charge of the pace of my recovery, not some arbitrary deadline.

• Small successes will gradually add up to big successes. I have to break my goals into small, manageable steps.

• I will probably always feel some sorrow when confronted by activities I can’t do yet, but the intensity seems to lessen as time passes and the list of things I can do grows as the “new Carole” gets stronger. I become less attached to the past, more joyful in the present and more hopeful for the future.

By Beverly Bryant, Maine

Wearing the label of brain injury

The right to fail seems to be reserved for that part of the population that is deemed creative, daring, confident and “normal”. Unless I have two good legs, two good arms and an uninjured brain, to fail is no longer a right at all. It is wrong.

Those labeled with a brain injury are told we tend to take on too many responsibilities. We set ourselves up for failure. We must limit ourselves. We need to be selective of our activities and prioritize our needs. We need to learn to say, “No”.
Others can try to do it and strive for that impossible feat.
We cannot set such high goals because we don’t have the endurance.

Others are expected to do their best at all times.
We are not expected to perform with excellence and are forgiven for less than our best.

Others can be daring when they reach for untold heights.
We are using poor judgment.

Others are exciting when they walk where no one’s walked before.
We are foolhardy if we do it and impulsive if we try.

Others are programmed to believe the sky is the limit.
We are programmed to believe the next task is the limit.

Others say, “No” when they wish to be self-assertive and strong.
We say, “No” and are labeled unresponsive and unmotivated.

Others do something different and it is praised.
We do anything and it is analyzed and deciphered.

Others remember well sometimes, but make the same mistakes again.
We do not remember and make the same mistakes again.

Others are absent-minded and laugh about the results.
We have brain injuries and it is not funny anymore.

We are Different, You and I.

At one point, so long ago, we were much the same. We thought the same and even looked the same. Then one day it all changed. Your life kept moving along and mine took a different path. We are both going in the same direction now, but on different pathways. I am sure you will get there before me, yet we will both end up at the same place eventually. That is all that is the same anymore.

No one truly understands brain injury unless, they’ve had to live with one.

If I should lose a limb, it would be a traumatic experience. But I would know what I had left to live with. I could make my own decisions and plan my own life. If they told me tomorrow that I have terminal cancer, I can not imagine the sorrow I would feel. But I could use those forces, spiritual, emotional, and physical that I spent my lifetime building to guide me. I could draw on my memories and the strength of character and personality to carry me through the hard times. I would know who I was, where I was going and what I had to work with.

A person with a brain injury returns home a different person.

My personality is changed. My memory is changed. My work habits are changed. My abilities are changed. My family is changed. My perceptions are changed. My reality is changed. I have to begin again to build those things that made me, ME

I am born again into a warring battle of desires and expectations.

Those who know about my injury expect less of me than I might be able to give. They are surprised when I do more than they believe I am capable of. Those who do not understand my injury expect me to do more than I can and they are disturbed when I cannot reach my old limits.

Yes, we are different, you and I.

You see, I begin from your failure. My best is accepted sometimes as your worst. And sometimes, my worst is accepted as indicative of my best. I am offended. I want better than that. I DEMAND better than that. I am a very capable person. I demand the right to blaze my own trail, wherever it leads; to forge ahead at my own speed, however long it takes and to be my own guide, regardless of how many directions I have to follow. I have the right to choose my own challenges and to follow my own heroes.

I demand the right to excellence.

I not only can do things, I demand to be expected to do them with quality and pride. I am capable and I need to be allowed the opportunity to show you. Like all people who strive for excellence, I will face failure. So occasionally I will need a warm hug or a word of praise or encouragement to pick myself up and begin again. There is no loss in failing because I am making the attempt to succeed and facing the challenge. The only real failure is never trying in the first place.

I have the right to fail.

I do not plan to, but I have that right. No one, absolutely no one, will ever take that right away from me. It is from that failure that I will move onward. It is from that failure that I will grow. It is from those failures that I will dare to be silent no more. It is from those failures that I will forge my excellence. WATCH ME!

By Lois Bousman 

The seizures changed my brain

I’m a daughter, a retired military wife, a mother, a registered nurse, an advocate for the disabled, and a traumatic brain injury (TBI) survivor. I’m a caregiver who has now experienced life on both sides of the fence.

I understand now what I had only observed before. The anger, fear, frustration, and uncertainty that come with a sudden illness or disability. That sudden loss of independence, the onset of financial difficulties due to job loss, and the depression that accompany them both.

Jan. 19, 2001 my life and that of my family seemed to come to a screeching halt. I was sent home from the hospital where I was working the neurology unit after a physical therapist noticed I was behaving in a manner unlike myself. She said I wasn’t verbally responsive, I froze in place, and just stared off into space. Whatever occurred didn’t last long. But rather than assist her as I had been doing earlier, I just returned to my nurse’s station when it was over to continue whatever I had been working on.

Two months later, after all the EEGs, MRIs, CT scans, and PET scans, I was diagnosed with complex partial seizure disorder. My neurologist at the time told me it seemed some neurons had migrated into both of the temporal lobes and destroyed tissue. Suddenly I had to follow the same instructions I had been giving to others just 2 months before. I had officially crossed that fence and it hurt.

Learning about a new “ME”

What had been a life full of dreams, goals, and laughter seemed to no longer exist. I couldn’t be “me” anymore. The seizures became more frequent. I had lost my independence and had to rely on my family more and more to help with tasks considered unsafe for me to do. With each new limitation, I wondered if I would ever get to cross back over that fence. At times, I gave up hope.

I’ve listened, researched, and learned about my disorder. Most people are familiar with those once called Grand Mal, Petit Mal, and even the Dropsy of the past. Mine is different. The only way I knew that a seizure had occurred was when I accidentally cut or burned myself in the kitchen. Or I would find myself in another room wondering why I was there. Most people may not realize when I’m just standing there staring that I’m possibly having a seizure. Like them, I don’t know.

But my husband and sons know when they see them. Initially the seizures were up to 20 or more per day. They tell me those were obvious to them. I would clench my hands, stare, and not answer them. I did not have a clue as to what I was listening to, or doing during the event.

Drilling into my head

In March of 2004, I underwent intra-cranial monitoring. I went into the hospital with long red hair. I came home bald after an 18 day stay, 20 holes drilled into my head, and wires inserted directly into the tissue of my brain. My sons described my head as a cross between a baseball and golf ball because of the incisions and holes. I don’t recall a moment of my in-patient stay. I only know the surgeons found exactly where to go in to remove damaged temporal lobe tissue. My neurologists were able to get an even better description of my seizures and the number I was having.

In July of 2004, I had a right temporal lobe craniotomy. (This time I came home looking like a horse had kicked me up the side of my head.) The neurosurgeon removed damaged tissue on that side. He took away some memories too. Memories of past events. Memories of childhood. Memories of being a young parent, memories of people, and memories of music. Since there was less damage to the left temporal lobe, they chose not to do anything at that time. Almost 4 years later, that side still is intact.

Holding onto some memories

What never left me were my memories of being a RN. The memories of caring for so many others with both brain and physical injuries. I never forgot how hard I fought to locate resources needed for them to survive. I never forgot how much I believed that, “There’s no such thing as can’t or won’t”, especially when it came to a child.

I admit that there are still times I have problems with memory and comprehension. I leave myself lots of notes, and keep a steno pad nearby so I have a growing list of items to get from the grocery as I notice something is needed. I can pay bills and balance a checkbook down to the penny. It’s amazing what you can do just by using varying colors of pens.

It’s been 4 years since the surgical procedures. I’m driving again, but only on clear days, never during inclement weather, never during high traffic hours, and never for a day or 2 following a seizure. I have yet to attempt the interstate and stay as close to home as possible.

Finding myself again

I’m beginning to feel like myself again. I’m a member of a vocational rehab clubhouse for brain injury survivors. I’m an advocate for survivors, and I’m working with the Department of Rehabilitation Services in hope of returning to my career field in a different capacity. It would be unsafe for the patient and myself to return to bedside care. Whatever I do, I know it is going to be focused on fighting for the needs of others.

I’ve experienced life on both sides of the fence. I have a better understanding now. I’m ready to continue to fight for the benefit of all.

By Kimberly Carnevale

Faking a disability or handicap is unethical and unacceptable

Recently, I’ve gained a new and unexpected clientele – business owners who believe that their establishment had been visited by (and in many cases, damaged by) “imposter” service dogs.

“Imposter” or “fake” service dogs are a growing problem throughout America. This is the canine version of illegally parking in a handicapped parking space. Many people have forgone any type of morality and have obtained vests and attached patches to illegally gain entry to public places with their pet dogs.

“This is the canine version of illegally parking in a handicapped parking space.”

Some offenders believe that their dog should be allowed to go with them everywhere and can’t see the harm in passing off just one dog. They know it is illegal, but do it anyway. Others believe they are justified because they have a disorder. Having their pet dog with them eases symptoms and they may even carry a doctor’s note.

The Federal law is very clear. For any type of service dog to accompany its partner in public, it must be trained to do specific tasks. There are an alarming number of handlers who have not done any required training of their dogs or learned the laws that govern service dog use. There is a difference between a pet and a service dog. Passing off any dog that is not specifically trained as per the Americans with Disability Act, state, and local laws is illegal and is a federal offense with carries federal penalties.

Emotional support dogs

These dogs serve a great and positive purpose, but they are not service dogs according to the law and are not permitted public access (Source: Psychiatric Service Dogs).

“Service animals are animals that are individually trained to perform tasks for people with disabilities such as guiding people who are blind, alerting people who are deaf, pulling wheelchairs, alerting and protecting a person who is having a seizure, or performing other special tasks. Service animals are working animals, not pets”—United States Department of Justice, Civil Rights Division)

If a dog does nothing more than accompany a person into an establishment to “keep them focused” or “ease anxiety”, they are not in compliance with Federal law that plainly states and specifically requires task training. There are many tasks that a psychiatric service dog can learn to do to meet the legal requirements. (A full list is available at: http://www.iaadp.org/psd_tasks.html )

Imposters avoid the costs of training

It costs $15,000-$20,000.00 to train a service dog. Untrained pet dogs are simply not equipped to deal with many unforeseen public distractions that service dogs have been carefully and meticulously prepared for.

“The high cost reflects intensive and high level training that takes hundreds of hours that ensure the dog to be obedient and able to perform its job in a variety of situations.”

A growing number of imposters are simply (and illegally) mail ordering vests, slapping on patches and claiming their pet dog to be a service dog. They then have the audacity to dare anyone to confront them, claiming protection under the Americans with Disabilities Act – the very law that they are in violating.

There are also unscrupulous businesses making a profit on these fake service dogs, by offering to “certify” or “license” them – at a cost. There is no such “certification” or “licensing” approved by the Federal government. Many of these businesses set up their own standards and charge a fee online, without ever having seen the dog.

“…He admitted that he was not disabled, and that his dog was not (or ever would be) a service dog – he simply wanted to get a vest and claim service dog status to get into a no pets facility”

Where’s the harm?

Congress is fully aware of this issue and is currently reviewing a bill that tightens the ADA’s definition of a service dog and increases the severity of penalties in response to this growing, and potentially dangerous problem. They are coming down hard on offenders who are bending the ADA.

“…there are plenty potential disasters waiting to happen when close attention is not paid to the careful socialization and intense training that a service dog needs in order to be safe and effective in a public environment.”

Pet dogs that have not received the proper socialization, high-level obedience, and distraction training are apt to misbehave (or even bite) in high stress environments. Stores, movie theaters, restaurants and other public places are filled with stressors that most dogs have never encountered in their lives as a pet. There are no short cuts to introducing a dog to such things. Precise attention and hundreds of hours of careful training and socialization are the keys to producing a calm, consistent, and properly behaved service dog.

“…ill behavior from imposters give real service dogs a bad rap, and service dog handlers are having even more difficulties with access.”

Business owners have rights too

Business owners who have had experiences with imposter service dogs can be less than jubilant when a real service dog comes into their establishment, leaving the business-client relationship strained. It is critical that business owners be made aware of these imposter dogs, to learn how to protect their clientele and their business interests, while abiding by the law and protecting the rights of real teams.

To think that many people are “cheating,”  by passing off untrained (or barely trained) pets as service dogs, when so many handlers are spending incredible amounts of money and taking the time to properly train their service dog to the level of a highly-obedient and task-trained canine, is infuriating. The immorality of this issue propels me to set out on a new mission to right a tremendous wrong.

Business owners who suspect they have been invaded by an “imposter” service dog are not expected or required to sit idly by while damage occurs or the smooth running of an establishment is interrupted.

“Current law provides for stiff federal penalties (including heavy fines and jail time)—even for first time offenders.”

There are legal steps that can be taken to stop these imposters in their tracks and help recoup damages. If you are in doubt as to whether a dog is a real service dog, you may legally ask the following:

1. Do you have a documented disability? (Note: you may not ask what the disability is.)
2. Is that a trained service dog? If the answer is yes, and you still doubt the validity of the team; you may ask what tasks the dog has been specifically trained to do for the person with disabilities.

Any properly trained team has been fully versed in the law, knows their rights and responsibilities and will have no issue answering such questions. Alternatively, if a person balks at answering these questions, or becomes unreasonably defensive; you may be dealing with an imposter. You may want to consider phoning the police to intervene.

If the dog enters your establishment and exhibits any type of behavior not expected of a service dog (urinating/defecating, damaging goods, sniffing/bothering other customers, barking, growling, snapping, etc.) you are well within your rights to ask them to leave. If the dog or its equipment is not clean (visibly dirty or emits an unpleasant odor), you are within your rights to ask them to leave. If the handler gives you any trouble; call the state police barracks nearest your location. For illegal handlers with “imposter” or “non-task trained” dogs; beware – Uncle Sam, the entire service dog community, and myself are onto you, and we’re cracking down.

***Note: This article is not about, nor designed to discriminate against, any program and/or owner-trained, physical or psychiatric service dogs that have been well trained to fully meet federal requirements; and handlers who have learned and fully versed themselves in federal, state and local law. This is an alert about the vastly growing problem of people who are illegally, and often intentionally, passing off their pet dogs without learning about governing laws, or providing any specialized training and task work for their dogs as required by law).

About the author:

Kimberly Carnevale is an author, disability advocate, and motivational speaker. She is the President and founder of Canine and Abled, Inc. (the award-winning program featured on TV, magazines and in her first book). She is invited to speak nationally on service dog law, business service dog education (including policy and procedure revision/implementation), and corporate motivation.

Kimberly presents her award winning educational and character-building assembly to schools, scout troops and other youth organizations throughout the country, and has been published numerous times nationally and internationally as an expert in her field.

Ms. Carnevale is available to advocate for the rights of service dog handlers (who fully meet the requirements of “disabled” and “service dog” as per the ADA), and to businesses who need employee sensitivity, service dog, and/or disability training, or feel they have encountered “imposter” service dogs in their establishment.

Kimberly also consults in service dog training/acquisition, helps assist people with disabilities train their dogs to the title of service dog, and has plans to build a breeding/training/provision center in the near future. She can be contacted through her website: www.CanineAndAbled.com

By Kimberly Carnevale

My brain’s not working right

It’s time to take my daughter to preschool. I check myself in the mirror one last time, just to make sure that everything’s in place. The image I see of the seemingly well-put together woman belies the internal storm that rages inside my injured brain.

My daughter is still half-asleep and wants to stay home from school today. The temptation to let her teases me with the thought of falling back into my still-warm bed, but I don’t dare. I’m not going to be much fun today, and I know she needs to go to school. The mere thought of getting her dressed and driving her to school overwhelms me, but the thought of having her home and having to entertain her all day terrifies me, and so I seek comfort in the quiet support of my service dog and push forward.

By some miracle, we are finally dressed and headed out the door, service dog by my side, keys in hand, and child clean and dressed appropriately. We’re late (again), but we’re on our way. Just as we step outside, my observant five-year-old points out that I’m still wearing my bedroom slippers. They feel just like shoes, so my brain couldn’t tell the difference. I run back inside the house, trying to calm down so that I can create the picture in my mind of what my shoes look like, find them, and put them on. I remember when processing was automatic, and oh, so much easier. My brain is on manual operation status these days, and sometimes the engineer isn’t able to operate it very well like today.

Living with a brain injury

Last week, I was the picture of health. My daughter got to school on time everyday, all her projects were completed and turned in, and I was productive and able to cross things off my to-do list.

No matter what priorities I have, no matter what responsibilities I have, my brain is in shut down mode, and no amount of coaxing, prodding, or willing it to do what I want it to do is going to work. I’m at its mercy; but hey, at least I look fine. At least that’s what the image in the mirror tells me. I may look fine, but I’m anything but fine.

Cognitive dysfunction stepped in and took over my life yet again. It’s like an unwelcome guest that shows up without warning, takes over your home and life, creates havoc and refuses to leave until it’s ready. I know my life is not my own until my functioning returns to an acceptable level, and that the ride ahead is going to be a bumpy one.

The unexpected

It all started yesterday–without warning, without a telltale sign that it was coming, BAM! My life had been taken hostage by brain injury once again.

I had plans to have my taxes done after I dropped my daughter off for school. I realized that I’d forgotten her social security card, and swung by the house to grab it. While in the filing cabinet, I saw a book that I was supposed to send out last week. I’d forgotten all about it. I reached for an envelope to put it in, but couldn’t find one. I then remembered that I was out of stamps, and went to search my purse to see if there were any left in there. While on my way to my purse, I saw the prescription for an ultrasound that I was supposed to get laying next to my laptop. I had put it there to remind me that I needed to make the appointment. It took me a year and a half to finally get the help that I needed; and only after an exhaustive search turned up a social worker who fixed my insurance issues and arranged the initial appointment was I able to finally see a doctor. I’m pretty sick and need three abdominal surgeries, and the ultrasound is my first preparation.

Results of reality

I picked up the prescription that had the office phone number on it, and began to dial the number. The recording on the phone said to have all social security numbers and insurance information handy; and I realized I didn’t have my insurance card on me. I hung up the phone, just as it started to beep. I’d forgotten to plug it in last night to charge, and the battery is doing dead. I go into the bedroom to plug in the phone, and go back to the other room. What was I doing there? I didn’t remember. I saw the drawer of my filing cabinet still open, and was reminded that I needed my daughter’s social security card. I grabbed it, and started to put it with my other tax papers when I noticed the prescription sitting by my computer. I realized I’d never finished that task, but now with the phone in the bedroom, my insurance card in my purse, and needing to get to the tax preparer; that seemingly simple task loomed large and overwhelming.

I took a deep breath, called my service dog, and headed out the door to the tax preparer. I finally arrived at the town hall building where volunteer CPA’s do the taxes of low-income families. I pulled into the parking lot, which was empty, thinking to myself, “Great, I’m not going to have a long wait!” But then I realized there were NO cars there at all. The building was closed. I felt myself get really angry, after all, I had put so much into getting ready for this appointment, and the nerve of them not to show angered me.

I went to the municipal office next door and asked the girl there if she knew why the tax preparer wasn’t there today. She said, today is Wednesday; they’re not in today. I started to protest, when it suddenly dawned on me, TUESDAY! I was supposed to go to get my taxes done on Tuesday! Feeling totally overwhelmed and deflated, I returned back home, back to the mess that I’d created looking for my daughter’s social security card, and back to that blasted prescription that taunted me; a blatant reminder of my cognitive dysfunction and subsequent meltdown.

Still time for preschool

Back to the present, wearing the proper foot attire, and now a full twenty minutes late leaving for my daughter’s trip to school; I finally get my child, my service dog, and myself loaded into the car. On most days, we chatter about what the day might bring, say good morning to God, and sing along with the radio. Today is different. Today, the sound of my daughter’s voice, which usually makes my heart leap with joy, grates my nerves like fingernails on a chalkboard. When it doesn’t stop, I feel overwhelming anxiety bubbling up and tears spring to my eyes. I can’t turn the radio on, because mixed with the sound of my daughter’s voice; the cumulating sounds would be the end of the control that I’m holding onto by a thread.

I hear my daughter say, “Good morning, God!” a blatant invitation for me to continue our morning prayer ritual out loud, but instead, I tell her, “Honey, lets talk to God silently in our hearts today, okay?” Her little face falls with disappointment, but she just says, “sure, Mom.” and I’m sure that she’s praying that God gives her Mom a new brain, one that works.

We finally arrive at school, and I take a few deep breaths to prepare for the plunge into the cognitively assaulting environment. I leave my service dog in the car, not because I don’t need him; nothing could be further from the truth, but not many parents take the time to teach their kids about service dogs, and being pointed at, shrieked at, and trying to keep a multitude of excited, grabbing little hands off of my service dog is simply not in my realm of capability at the moment. So I trudge on, totally overwhelmed and without my service dog which is the only thing that makes these moments bearable-the vital support I really need.

“It’s only for a few minutes” I tell myself, picturing myself signing her in, helping her hang up her things in her cubby, and clearing out of there as fast as I can, not engaging anyone in a conversation that I can’t hold right now. Everything goes according to plan, and with a final hug from my little one; I’m able to make my escape. But her teacher, who had been helping kids off the bus, catches me in the hall. “Hi! How are you this morning?” “I’m struggling,” I say, as a means of apology, trying to escape the engaging young woman. “But you LOOK great!” My interpretation: “Ah, you LOOK fine, so you must not be all that bad, buck up, things aren’t that bad!” “Looks can be deceiving,” I manage to choke out, completely and totally overwhelmed and now upset on top of everything else. I flee for the door before I embarrass myself with the tears that threaten to fall. I nearly run to my car, which is parked in the handicapped parking spot. I’m sure that the casual observer would mock me for this; as I LOOK fine, so I must not really need a handicapped parking space. It would never occur to an outsider that because of having a service dog, I need to have extra maneuvering space the larger spots provide, or that being closer to a building means my dogs feet stay cleaner and free from debris, and that by saving steps everywhere I can, I rest my injured brain and am better able to get through an entire day. But they can’t imagine what it’s like, and I’m in no shape to explain it to them.

Morning continued

Once in the quiet haven of my car, I quickly pull out of the parking lot so as not to be flagged down by someone who knows me. I try to listen to my favorite station on the radio to distract me from the overwhelming panic that is overtaking me, but the DJ’s voice that I normally enjoy listening to, hurls spikes into my brain, and the music feels like needles in my head. I turn off the radio and try to talk to God instead. Even my own quiet voice inside my head is deafening, and so I force myself to concentrate on the road and my driving. By this time, I’ve graduated from mere sound sensitivity to movement sensitivity-not good. With every car that passes by, I feel like someone is punching me in the stomach. The trees that pass by taunt me and push me even further into the great abyss of anxiety. I want the world to stop and let me off, but of course, that isn’t happening.

I finally arrive back home, and I rush into the quiet sanctuary of the house. I have a mountain of things to get done today; but they’ll have to wait, again. In order for me to be able to function at all this afternoon when my daughter gets home, I need to do nothing, look at nothing, think of nothing, and heal. The thought of going back out into the world terrifies me, but I can’t think of that now.

My stomach growls, and it dawns on me I haven’t eaten breakfast today. My daughter eats breakfast at school, and I usually fix myself something after I drop her off. I’m very hungry, but the thought of trying to fix myself something to eat is overwhelming, and I give up trying. I must rest, for after I pick my daughter up, dinner, bath time, and bedtime rituals loom ahead. It’s a daunting feeling, but as I head into my room back to the quiet serenity of my bed, I pass by the mirror and catch a glimpse of myself. “But you LOOK fine.” I think to myself. Looks sure can be deceiving.

Author’s Note:
Traumatic Brain Injury affects millions of people, their family and caregivers. It disrupts lives, breaks up many marriages and puts a strain on relationships. The fact that many symptoms are behavioral, emotional, or cognitively based makes it difficult for the casual observer to be compassionate, and many times, TBI patients are wrongly accused of “being lazy, irresponsible, have lack of control, or just plain crazy.” TBI patients feel a sense of loss over their lives, and feel badly for the behavior that they have trouble controlling. Many are misdiagnosed, and suffer symptoms for years before proper treatment is provided. Others have trouble accessing resources, and get lost in the system, never fully able to take advantage of programs/assistance that is available to them due to the lack of advocacy.

If a patient doesn’t have close friends or family members to navigate the very limited resources that are currently available for Traumatic Brain Injury, they miss out on health care, daily support, and even basic care needs.

Traumatic Brain Injury is often invisible to the casual observer; but just because a person doesn’t show outward signs of a disability, doesn’t mean that he/she doesn’t suffer from it; and all the challenges that go with it.

Education and awareness is key to patients with TBI to find the compassion, tolerance, and assistance they need.

Kimberly Carnevale http://www.CanineAndAbled.com Copyright C 2008

by Kimberly Carnevale and Sarah Lynn Communications, L.L.C.