Words Do Make a Difference in How We Treat People

By Shaun Best

When I returned from the hospital in 1978, I was overwhelmed by the unfavorable manner in which I was received.  Before my accident, I was headed for the US Air Force and the Olympics.  Those dreams were no more after I survived a three month coma in 1977. 

Upon starting school again I was legally labeled disabled, retarded, or handicapped.  At least I had a choice, I thought.  I went to my dictionary and learned that people who were described using these terms were not viewed favorably.  When I made this argument in school, people looked at me as if my cognitive challenges had robbed me of all my intelligence. 

I’ve worked for the last 30 plus years to enlighten others to the benefits of describing people with disabilities positively (challenged, challenges, differently abled, multiple intelligences, etc.) vs. negatively (disabled, retarded, handicapped, etc.).  I’ve worked on including people with different abilities within the community rather than excluding them due to fear.  I’ve continued this humane movement, in the hopes that some day others would see that words do make a difference. 

Luckily, in the last 30 years, many have seen the progression of these terms.  My work has been positively reinforced with the work at the Positive Psychology Center and the book Learned Optimism by Martin EP Seligman, Ph.D.  The optimistic explanatory style produces hope whereas the pessimistic explanatory style produces hopelessness.  Stated another way, pessimism results in psychoneuroimmunology  - a long term that describes how psychological events can change health and alter the immune system.  

Some lessons from learned optimism…

• Negative thinking is the disease.
• Using the power of positive thinking can be the cure.
• Develop an optimistic explanatory style.
• Avoid conscious negative thoughts.

I would like you to know that I have used the optimistic explanatory learning style since the early 1980s when I chose to use the term “challenged” to replace disabled.  Since then, I have created the Challenged Conquistadors, Inc. and have received hundreds of letters of support from around the world.  I’ve reduced the harsh manner in which some humans refer to others.  You can learn more about me and my work at http://www.headtohead.org/?art=255

For more information on this topic, see…

Adults with Brain Injuries :

 Myths and stereotypes about work and life.

The Essence of Interdependence:

 Building community for everyone

Together is Better:

Creating a community where each belongs

Ackerman, My Amazing Canine Companion

By Grace Peay

What’s a dog have to do with brain injury?

Ackerman? Amazing Canine Companion? What is a dog story doing in the Brain Injury Survivor Forum? I can answer that question. My name is Grace and just like many of you, I have a brain injury. A pick-up truck hit me while I was jogging on the sidewalk. But you have all walked that same brain injury path, and what is different about my journey is my wonderful canine companion who has given me back my independence and a new found purpose in life.

It all began almost 10 years ago, when I would have someone take me to a local pet store so I could play with the golden retriever puppies. There was just something about their bright beautiful golden fur and their eyes of love. I normally was nauseated, fatigued and had migraines non-stop, but in the presence of the pups I felt normal again. I didn’t even stutter. It would only last about 3 minutes, but I laughed when I played with them. I didn’t think I would ever laugh again. The only problem was the pups were so energetic I was not able to fathom how to take care of one.

Maybe an older dog would work. Off to the humane society. It was great for about 5 minutes – but I couldn’t walk straight myself – how was I going to walk a big dog? Even the smaller dogs that were full grown were too much.

I was depressed on top of being depressed about having a brain injury.

Special dogs for people with disabilities
Wait a minute. Maybe I could get one of those dogs trained for people with disabilities. Then I thought, no way… you have to be blind or be in a wheelchair and I just have a brain injury. I’m not disabled enough to have an amazing dog. So I moped around in a bunch of self-pity until I went to a disability fair sponsored by a local HealthSouth Rehab facility.

Immediately upon entering, I saw the cutest little black lab puppy in a yellow cape and a big yellow lab dog in a blue cape. My heart ran over as my brain and body followed along as best as they could. The puppy bounded to me, sliding to a halt. His name was Burn and he was being raised to be a Canine Companion.

“A what?” I said.

“A Canine Companion – a dog that has been trained for people with disabilities other than blindness,” responded the gentleman in the wheelchair with the yellow lab. “This is Candy. She is my dog. I have had her for 6 years.”

“You mean you don’t have to be blind or in a wheelchair to get a special dog?”

“No, there are people with MS, spinal cord injuries, cerebral palsy.”

“Brain injury?” I asked. My heart temporarily stopped waiting for the answer.

“Sure,” a couple resembling Mr. and Mrs. Santa Claus just 30 years younger and 30 lbs. lighter, replied. “Burn is the third puppy that we have puppy raised for Canine Companions for Independence. We get the puppy when it is 8 weeks old and keep it until it is just over a year. We go to puppy obedience classes, and then socialize the puppy by taking it to malls, churches, hospitals, grocery stores; anywhere we can think of a person would need to go. This gets the puppy used to any environment, any situation, so that when it gets paired with a person with a disability, the puppy (or then dog because the dogs are usually 1½ to 2 years old upon graduation) will be able to stay focused on the person.”

“Wow, so you guys are puppy raisers. Then the puppy goes to puppy college and then if the puppy graduates from puppy college it gets matched with a person.”

“Yes, but puppy college is pretty hard. The puppy learns how to open and close doors, pick up keys, pencils, change, turn lights on and off, retrieve telephones, shoes, umbrellas and, of course, give lots of attention, companionship and love.”

“Okay, where do I sign up and how much does it cost?”

“The dogs are free to the person, but there is an application fee, and if you get to go through the 2 week training, there are also food and travel costs involved. And to sign up, just contact Canine Companions for Independence. The application is a bit lengthy and the waiting list is long, sometimes a wait of two years or more.”

“Oh, you don’t know how you guys have made my day.” My brain and body actually felt like it was running along with my heart, out the door and home to get working on the application process.

Applying for a companion…

And work it was. A 7 page application in which I had to tell my sleep habits, eating habits, likes, dislikes, exercise habits – more questions than a dating service (although I am actually guessing – I’ve never filled out a dating service questionnaire, but they did want to know about my family, friends, dates). Oh, also I had to write an autobiography – just a mini-sized one. They were trying to get an idea of what kind of person I was. My doctor had to complete a form, along with my therapist and a personal friend.

Canine Companions for Independence puts so much care, joy and love into each pup that they want to make sure that each applicant accepted to their waiting list would benefit from the dog and also provide a loving home for the dog. It took me about 3 weeks to compete the application and another 6 weeks to hear back.

They invited me to come to their facility for a personal interview, so I went on December 5, 1997. For 3 hours, we talked about my brain injury, my strengths and weaknesses, why I thought a Canine Companion would help me, where I lived, how I lived, everything except what I would do as Miss America. (Didn’t get it? That’s ok. It was just a joke.) I then got to interact with a 7 month old puppy-in-training named Kilpatrick. I got to walk him on his leash, tell him to sit and then have him come to me from across the room. That was the best part: to have a beautiful golden ball of joy rush into my arms and give me kisses without knocking me over. He was so gentle, yet so loving – almost like he knew what I could and couldn’t handle without anybody telling him. Boy, was I exhausted after that interview – but an “okay, this is cool” exhausted.

Then 10 days before Christmas, I got a letter from Canine Companions for Independence:

Dear Grace,

After reviewing your application materials and from your interview, we would like to extend to you an invitation to be placed on our waiting list.

That was all I read. I felt like I had just gotten accepted to attend Yale medical school (my dream before being hit by the truck). I stuttered out a scream and jumped like a rabbit with two broken legs, but it was all with joy. “God,” I said, “I must have done something right; I don’t know what, but a special dog. I’m waiting for my amazing, special dog.”

Now, this is where having a brain injury comes in handy. My ability to keep track of time, whether it was hours, days, or months, stopped ticking when the truck hit me, so the waiting actually didn’t seem too bad.

“HeHeHeHello. AAAA dog. You you have a dog for me. You you think. Come come to Santa Rosa. Oh, yes.”

The “Yes” part didn’t stutter out and neither did making all the arrangements to get to Santa Rosa, California from Indian Rocks Beach, Florida. (Canine Companions has 5 complete training facilities now: Santa Rosa, CA, San Diego, CA, Long Island, New York, Orlando, FL and Ohio.) After an approximately 10 month wait on the waiting list (extremely short and very fortunate on my part), I was off to California with the hopes of returning with an amazing fluffy golden retriever.

Meeting the dogs…

The first day of class was extremely overwhelming and exciting at the same time – the way heaven will probably be on the first day. There were 5 other people in class to be matched up with a dog. We listened to everything the instructors said to us three times harder than anything that had been said to us before. We all had a feeling that if we could be matched up with a special dog – just for us – our lives would be forever changed. Maybe we could regain some of the independence and joy that had been lost.

First up was learning how to give a command and when to give a correction. Out came the first dog. Carpet Dog. Carpet Dog was a 6 inch diameter wood block surrounded by carpet with a smiley face drawn on one end. Each of us took turns all morning getting the wording, timing, and feel of a leash down perfectly with good Carpet Dog. “Okay, let’s break for lunch and when we come back, we will use the real dogs.” “Oh my gosh, real dogs.” We all wanted a dog so bad but were all terrified at the thought of having a live dog at the end of the leash instead of Carpet Dog.

Again, I had the overwhelming feeling coupled with excitement as each dog was brought out of the kennel. We all used that dog to practice our commands and corrections. We learned a few more commands like, “sit, heel, side” and “let’s go” using all the different dogs just one at a time.

“Okay, great work you guys. Here is a quiz to take back to your rooms and bring back tomorrow. We will be using all the dogs the whole time tomorrow, rotating all the dogs with each of you so you can be thinking about who works with you best. See you at 8:30 a.m.”

Making a match…

Yeah, I want a fuzzy, fluffy Golden Retriever, God. But then I realized I better just be real grateful I am even there to get an amazing dog – yellow lab, black lab or fuzzy retriever. Tuesday morning we jumped right in learning new commands. The one thing different was no Carpet Dog. We all had a dog to use. And rotate we did. Everybody used all the dogs numerous times. It was really dizzying and that was because I had vertigo. There were 6 of us and about 10 dogs. Scooter, Salinas, Orlena, Iselin, Ackerman, Alexander, Willoby, Tovah, William and Andrea. What a day – trying to remember the name of the dog you had at the time, which command to give, and keep track of which dog you thought you worked with best. It was easily more exhausting than running a marathon.

“Ok, everybody put the dog in the kennel and sit down. I need each of you to write down on this piece of paper the top 3 names of the dogs that you think work best with you. Then tonight all the instructors will go over your choices, your application – especially the portion with the type of lifestyle you have and each dog’s personality and try to come up with the best match possible. We try to go by your wish list but sometimes we see something that will work better for you and we follow our instinct. So fill in the paper, put it on the table and we will see you at 8:30 a.m. tomorrow. We will pass out your dog to you so you can get to know each other the next week and a half of team training.”

Oh, tomorrow. I am 14 hours away from an amazing dog. I liked Ackerman but he wasn’t fuzzy. Since he was the smartest dog in the class, he will probably go to someone who is more disabled. (I had not learned yet that there is no measure of disability.) But I knew who I didn’t want – Scooter. Scooter was a black lab who acted like a scooter. We were supposed to handle the dogs and make sure they didn’t scoop up food or treats off the floor. And Scooter would scoop it up off the floor before you could even get out, “Don’t Scooter.”

“DDD” and the food was gone and my friend who had gone with me to the training was screaming, “He got it! He got it!” at the top of her lungs and everybody turned and looked at me. Scooter would stand there with his head hung sort of low like a vulture waiting to pounce on the next victim, but with this, “It was your fault” look on his face. Oh, no – I did not want him. A fuzzy Golden Retriever. That was what I wanted, so I just quickly put down Iselin, Orlena and Willoby.

All I could think of Tuesday night was how bad I wanted a fuzzy Golden Retriever, and how much I didn’t want Scooter. Then I always quickly told God whatever dog was the best for me – I was just grateful to even be there getting an amazing dog trained specifically for people with disabilities other than blindness. Again, the brain injury was helpful because you really can’t stay focused on any one thing for a long period of time and the fatigue factor involved in Team Training is so high, that Wednesday morning seemed to come fairly quickly. I got to the training room and, in my chair, muttering this silly mantra in my head “Please not Scooter, please not Scooter – but I am grateful to be here, so whichever dog is the best for me God, will be great,” and then back to, “Please not Scooter.”

This was probably one of the first times since the pick-up truck hit me that I had a definite opinion on something. The instructors began passing out the dogs. Salinas, Orlena, Alexander, and Iselin were all eagerly getting acquainted with their partners. Only 2 dogs were left, Scooter and Ackerman, and only 2 humans left, Julia and I. Scooter came out next. He sort of was wagging his tail like he knew something I didn’t. The instructor began walking him towards me. “No God, please no – but I will be grateful.” Just before my next “No God” – right before my first possible heart attack, Scooter stopped and his leash was handed to Julia.

She was so excited and Scooter – I had not seen that dog show so much excitement, as when he was paired with Julia – his tail was wagging, all 4 paws were doing the happy tap. He was like Fred Astaire tap dancing with Ginger Rodgers, only Ginger Rodgers was Julia. And Julia was just as excited to get Scooter. I was so happy for both of them and what surprised me was it wasn’t just being happy because I didn’t get Scooter, but because someone else who could use a dog to gain independence and companionship in an often dependent and companionless life, just got her dream realized.

Meet Ackerman…

As for me, 2 of the fuzzy Golden Retrievers were gone so that left one fuzzy one. The instructor had already gone back and gotten the dog I was matched with, so when Julia and Scooter’s dance of excitement was over, I was handed Ackerman’s leash.

Ackerman? Wait a minute, I thought. Ackerman, he is the best dog in the class. How did I get him? Surely he was going to go to someone more disabled – you know in a wheelchair or something. I looked too normal. I looked down at him and then at all the other dogs, thinking, “Is he as pretty as the other ones?” I wasn’t totally sure about this.

We went through the morning lecture and began the afternoon session practicing commands. Over and over – I was getting so dizzy and so tired. Everybody else was holding up well. I had to sit for a minute and rest, while the others practiced. You know there really is no degree of disabled: no more disabled than you or less disabled than you. We all just have our challenges to overcome and find our way over them and down many paths. I learned this while getting matched with Ackerman. And just as I was sitting in the chair resting, Ackerman leaned up and kissed my hand that was holding on to the chair. I looked down at him and said, “I think I’m starting to like you” and he wagged his tail in agreement.

Ackerman and I have been a team now for 7 years. Everyday I learn something new, and each day I laugh and I am able to live on my own. With Ackerman, even though I have a brain injury and am not the person I was, I feel as though Ackerman has taught me, and continues to teach me, to become the person God meant for me to be.

If you would like more information on Canine Companions for Independence, please contact them at:
www.cci.org

Or write to: CCI, P.O. Box 446, Santa Rosa, CA 95402  (707) 577-1700

Who Ever Said Marriage Would be Easy after Brain Injury?

By Beverly Bryant in Maine

Building and maintaining relationships after brain injury

 I often wonder, “Who has those perfect relationships before a brain injury?” You know the ones we always miss so much after our brain is scrambled. The ones we look back on and say, “God! We had such a good thing going. We understood each other, had patience, couldn’t wait to share the day’s adventures with each other, had oodles of friends and understanding colleagues.”

It is a universal problem after brain injury to find communication is suddenly very different and difficult. Family becomes a source of frustration and misunderstanding. Therapists and counselors don’t feel that we have the ability to demonstrate sane judgment. Friends suddenly disappear like cockroaches in the light.

We don’t act like we used to. We don’t react like we used to.

Our behavior is described as inconsistent and unpredictable. We lose the ability to trust others. In the process, we lose the ability to trust ourselves. Dreams, once shared of a future together, are lost in some vague fog of hopelessness and despair. It sounds like the end of the world, as we know it. But it can be the beginning of reality for many persons who have endured a brain injury.

My relationships before my brain injury

My husband and I had worked for most of our adult lives to build a secure and loving environment for our children and ourselves. It involved working in financially secure jobs, retraining and reeducating ourselves as times changed, and being sure that we stayed abreast of changing times and circumstances.

We shared a relationship that was loving, functional and productive. Most cherished were our children. We spent much time trying to offer them the best opportunities in education, life and hopes for their own future.

After my brain injury, our priorities suddenly changed drastically

My husband and I no longer shared a 50-50 marriage relationship. He became the caregiver and I took on the submissive role of the patient. It took years to retrieve our former relationship, (if in fact we really ever did). For once you are forced to give up your independence and control over your life, it is very, very difficult to reclaim it.

Reclaiming or regaining relationships involves accepting yourself for who you have become. It also involves developing your new strengths. For if we cannot accept what we are left with, then it is impossible to move on with living.

Moving on involves the process of grieving

Grieving is a cyclical process. It comes and goes with time. But we must grieve to get over our losses so that we can learn to let go…so that our family and friends can also learn to let go. It is the letting go that lets us start on the road to becoming. That road involves risk-taking and sometimes, it is very hard to let go.

I know one thing for certain in my recovery. If my husband had not been willing to let go, and allow me to take risks – allow me to stumble and fail and then decide on my own, whether to use those failures as stumbling blocks or stepping stones – I would still be relegated to 24 hour supervision, instead of being totally in control of my life five years later.

It has not been easy

Marriages do not naturally grow stronger after brain injury. But I have learned that if you had a good marriage foundation before the injury, then you have a better chance of “making it” after brain injury.

Gordon and I had been married for 28 years and he was my best friend. Yet we still had to relearn how to communicate. Many times it was not what we said to each other, but how we said it.

I had to develop faith that he was interested in my welfare and not just trying to take control of my life. He had to have faith that I could make decisions that were safe and logical. Both were hard. We had to realize that there would be times when neither of us would be satisfied with the results.

We also had to come to grips with the fact that there would be friends who would choose to end relationships…and that was OK. Maybe it was because they could not understand the changes taking place, didn’t like who I had become, did not have the time to deal with the challenge, or just could not accept what happened. Any way you look at it, we lost friends…and that always hurts.

We also found that we made many new friends. They tended to be ones who also were involved in the brain injury community and who had a basic knowledge of what we were dealing with and offered validation, support, education and referral.

In a book I wrote on brain injury, my husband shared a part of himself by writing about our relationship.

“Relationships are meant to change. We grow and are challenged by change. The kind of change we experience may not always be what we planned…. We are fortunate enough to have a good foundation on which to build. I hope I have shown Bev that there is strength in having someone who cares for her and loves her through the good times and the bad. She has taught me that whatever I want for myself is worth fighting for. That’s what makes our relationship so strong. I am looking forward to the person she is becoming rather than who she was. I am happier thinking about the future rather than the past. Losing that still hurts a little.”

Finding and maintaining relationships after brain injury is hard. But let’s be truthful. Building meaningful relationships is always hard. We spent a lifetime developing them before our brain injury. Spouses and family members need to get used to changed personalities, changed behaviors, and changed dreams. It takes time…and a lot of help on our part.

Note from the Survivor Forum…

Bev has written two books on her experience. For a preview and ordering information, visit her website at www.bbryant.com.

Guns Can’t Think

By Eric Nelson

New Year’s Eve

I wish I could tell you what year but I can’t, because I can’t remember. All I can remember is that it was a New Year’s Eve when I learned that guns can’t think, and I became a Brain Injury Survivor. I was at a friend’s house when I learned this valuable lesson.

A gun only works when someone picks it up to use it or just look at like I did. I didn’t know it was loaded, but as I was looking at it I must have pulled the trigger because I shot myself in the head. Apparently I wasn’t thinking either, or the accident wouldn’t have happened. I would have thought before picking it up had I been.

Up-Bringing

My brother and I grew up learning from our mother and grandmother how important it was to stop, look, and listen before crossing a street. We were warned to look before we leaped. Both women stressed how important it was to think about the consequences of our actions, but I didn’t. Instead I’m reminded (every time I look into a mirror and see that scar running from the edge of my forehead, and making an interesting swoop across my scalp) of the fact that guns can’t think.

The Gun

My life changed a lot when that gun and I didn’t think. I had been into running track and playing football during High School. I moved on after High School to attend Roosevelt College in Chicago. I went in as a Business Major, but graduated instead as a Licensed Practical Nurse. I can’t tell you what type of nursing I went into because I can’t remember, but I do remember I was continuing my studies so I could become a Registered Nurse like my mother, even though I knew the stressors she had endured while trying to work and raise 2 boys. My brother and I did our best to help her around the house, but we could only do what boys can do. We tried to cook and clean. We weren’t the best, but at least we tried.

I know I married the girl I dated while in High School and that I have 2 beautiful daughters. I can remember their names, but when another member of the Brain Injury Clubhouse I attend asked me their ages I couldn’t remember. Even something that means so much to me, I can’t remember anymore. I just know they are mine even though their mother and I are no longer together.

And Now

I’m a brain injury survivor. I’m a man who has to rely on others to get me where I need to go. I’m someone who always enjoyed learning but need help to learn now. The staff and other members of the clubhouse help me to learn new things on the days I attend. As I become comfortable with a new task I do my best to help others to learn as well.
I recently graduated from the VCVTP Job Club (Virginia Clubhouse Vocational Transitions Program) where I learned a lot about myself, my strengths and weaknesses. I know I can’t return to nursing and even if I tried I couldn’t remember what my duties entailed. But I’m hoping with all the new things I am learning that one day I can find a job I can do safely and possibly remember how to do it right.

I’m hoping at the moment that there are young people reading this story. They need to know that it’s up to them not to make the same mistake I did. They need to know that guns can’t think, but they can. If they don’t stop and think they could end up becoming another victim of brain injury or worse, they could be dead. That’s not what I want or anyone else wants for their futures. If there aren’t young people reading this, then I’m asking that adults take the time to talk to their children as well as other young people about the fact that Guns Can’t Think.

Denbigh House, located in Virginia, is a clubhouse for people with brain injuries. denbighhouse@gmail.com www.communityfuturesva.org