Texting Revolution for the Deaf

Texting is revolutionizing the way in which the deaf communicate.  I had worked in a school for the deaf for several years in the not too distant past and was surprised that it hadn’t occurred to me about texting when I read a story about it today.  The children I worked with were mostly under eight years old, so their written communications was still developing anyway.

Where the deaf were once limited to primarily communicating only with those who knew sign language, in the last 20 years cochlear implants have changed the landscape of communication for the deaf.  There was once a culture clash between the deaf who reasoned that they weren’t broken, and therefore didn’t need to be fixed, with those who wanted to be part of the hearing world and chose cochlear implants. That too is changing as it has been proven that children who are implanted as babies, when trained properly, can often be educated in a regular classroom by first grade.

The school I worked for was called Clarke School for the Deaf and is one of the most well-respected in the country. After nearly 150 years, they recently changed the name to Clarke Schools for Hearing and Speech which is more befitting. The main campus is in Northampton, Massachusetts, right next door to Smith College, with satellites up and down the east coast. I worked at the Jacksonville campus.

 Teaching the deaf to listen and hear was an awesome process to watch. No sign language was allowed at the school. Their job was to teach the children how to listen with their cochlear implants, or hearing aids, and then speak coherently and correctly. One day a group of college speech therapists was in observing, and it was obvious they were required to use sign language when addressing each other even though they weren’t deaf.  The kids at the school looked as them as if they were aliens and kept asking, “What are they doing with their hands?”

I wasn’t a teacher, but  rather a fundraiser hired to help raise funds for a new school. The first day a teacher of the older kids who were theoretically about first and second graders, invited me into her classroom across the hall to help out with a learning exercise for the children.  I was to stand in front of the class and they were supposed to figure who I was by asking questions.  At one point I told them I was hired to help them build a new school. They all stared silently. ( I would later learn that deaf children understand things literally.) So the teacher asked them how they thought I was going to do that – by digging the hole? And so it went. Oddly, all the teachers at the school were called by their first names, so when I left the classroom I pointed to my office and told them to be sure to say hi to me when they walked by, and that my name was Cam Brown.

From that day forward, I was referred to by the kids as CamBrown, all one word.  “Hi CamBrown, hi CamBrown” and on and on as they filed out to recess. It baffled the parents because they referred to me the same way at home.  I found it endearing.

Heather Whitestone McCallum, Miss America 1995

At our annual gala, Miss America 1995 Heather Whitestone McCallum was the guest of honor. If you remember, Heather is deaf, but could talk very clearly and even performed a ballet that won her the crown. Her Mother Warrior taught her to talk when she was growing up and was dumbfounded and distraught when Heather demanded in 8th grade to go to a school like Clarke. There she flourished in speech and academics, as well as socially. An expert lip reader, she didn’t use sign language and didn’t feel she needed a cochlear implant. Until she had a child. She said her son hurt himself in the backyard one day and she didn’t know it because she couldn’t hear him cry. That’s when the Mother Warrior in her kicked in and she decided she wanted to be part of the hearing world of her new family. She addressed primarily the parents with deaf children that night at the gala and filled their hearts with hope and determination.  And the knowledge that it takes a Mother Warrior to raise a deaf child.

Learning to hear with a cochlear implant is a lot of work. Those who have had prior hearing, such as Rush Limbaugh, say the sound is similar to the voice of Mickey Mouse. He had no trouble because he knew how to interpret the different sounds. But when you’ve never heard the knock of a door, how do you know what it is? Heather Whitestone tells a story of being in the family van and becoming unnerved by an incessant sound, until her husband finally realized it was the sound of her sons in the back seat sniffling.

So texting is an awesome tool for the deaf. They can do things just like others – call their children in to supper with a text, tell their teenager to turn off the light and go to bed, find out where their husband is in the mall, and communicate with the hearing world without skipping a beat. And in a pinch, if the lady at the hamburger counter can’t understand them, it’s a portable communicator. Type it in and hold it up for her to read.

Last year I interviewed Bruce Maddern, MD, a physician who was instrumental in getting the cochlear implant program started in Jacksonville about 20 years ago. He said that because cochlear implants were still a deaf culture hot button, he gathered all the community players together at his house for a dinner party. And it was at that dinner party that he realized, among the hearing and the deaf, he was the only person at the table who couldn’t communicate with everyone because he did not know sign language.  He said that rocked his world in understanding how the deaf feel.

Who knew that the past-time that drives many parents nuts would be another magnificent tool in the toolbox for the deaf?

DON’T HANG UP ON HARRISON FORD

“Make sure the guy that plays you in the movie is 6’5″,” John Crowley joked to the crowd this morning, referring to Brendan Fraser in the recently released major motion picture  Extraordinary Measures. “And don’t hang up the phone when a guy calls and says he’s Harrison Ford, read about your story in the Wall Street Journal and thinks it would make a good movie.” (Ford forgave him.)

John Crowley spoke to the crowd at Brooks Rehabilitation’s “Celebrate Independence” about the extraordinary measures he took to keep his two children alive when they were diagnosed with Pompe Disease and given less than two years to live.  When daughter Megan was 15 months old and son Patrick was just seven days old, the doctors told them that their children’s inherited disease was so rare that there was no cure. And no one was looking for one. Pompe Disease means the body can’t break down sugar, glycogen to be specific. It eventually affects the heart and muscles.

Harrison Ford plays Dr. Robert Stonehill, the scientist who Crowley went to for help finding a cure in time to save his children. (Crowley told me this morning that the Ford character was actually a mixture of several scientists he worked with.) With time running short, Crowley quit his job as a financial consultant and all the security that goes with it, and began drumming up investors to help him. Other than having a Harvard MBA and business know-how,  he really didn’t know what he was doing. He simply had a mission to keep his children alive. $200 million later and  a biotech company bought and sold, he didn’t find a cure for his children, but he did find how to keep them alive.  He then had the hurdle of getting them actually included in the clinical trials for the medicine, and that mission was equally daunting.  He persistence, and his persistence alone, made it possible. “I think I did my job,” he says. ” As a dad, I did what I had to do. I don’t think that makes you a hero.” 

His message to the room full of people who had struggled to overcome their own physical limitations, and their families who supported them, was that it cannot be done alone.  Take help where you can get it. Sometimes it’s unexpected.

He told of trying to give his family a normal life. As normal as one can be when you pack up the family, the nurses, the grandparents, medical gear and go to New York City for the Macy’s Thanksgiving Day Parade.  What he didn’t know was that the crowds on the sidewalks are about ten deep everywhere to watch. And his daughter’s wheelchair was a 300 lb. monster. Trying to appear to the family that he had everything under control, he approached a police officer to see if they could move the barracade so they could have a better view. An officer who initially growled a threat to him about moving the baracade even an inch, then saw the family in tow with two kids in wheelchairs and ventilator gear, and he soon forged a path to the parade like Moses parting the Red Sea.

He also told of how when his daughter was of the age to attend kindergarten that her mother insisted she attend the neighborhood school. Megan’s mind was sharp. At kindergarten graduation, the pricipal told him that at the beginning of school he got many emails and phone calls from parents not wanting their child in Megan’s class because it might be to traumatic for them. After a year of friends, birthday parties and school plays, the principal said he got just as many emails and calls from parents asking for their child to be in Megan’s class next year.

While listening to Crowley speak, I thought about my recent posts regarding Mother Warriors  and all they do to keep their sick children going.  I found myself writing a Warrior Father type of story in my head. And then Crowley mentioned his wife Aileen, and how she took care of the children alone while he flew all over the country raising money and meeting with scientists.  But it didn’t stop there.

He added that none of it could have happened without the actions of a woman named Abbey Meyers , a self-proclaimed “housewife from Conneticut,” just like Polly Murray who spearheaded the discovery of Lyme Disease. Meyers is credited with being the primary force behind the getting  the Orphan Drug Act of 1983 written.  This is an act that President Reagan signed to give generous incentives to pharmaceutical companies to bring drugs to the market for these rare and little known diseases. It gives companies a seven year monopoly on the drugs they bring to market, like a patent does but without the lengthy process to go through. After the seven years is up, there is usually no competition from other drug makers because the biotechnical process of making these drugs is to hard to replicate for FDA approval. Meyers’ Mother Warrior persistence helped enable an entire biotech industry to find cures.

John Crowley has recently published Chasing Miracles: The Crowley Family Story of Strength, Hope and Joy. It’s not as much about the steps he took to save his children, but rather the lessons he learned along the way. The lessons all good Warriors learn through the eyes of their children.

Note – John Crowley’s book is available in the gift shop at Brooks Rehabilitation  in Jacksonville at the corner of University and Beach Boulevards.

Part II: Mother Warriors in the Lyme Disease War Zone

Daryl Hall, of the famous singing duo Hall and Oates,  likened Lyme Disease to “a  roving gang of street germs.” Hall contracted the Lyme bacteria and several co-infections from the bite of a deer tick, as most people do. 

Daryl Hall

The disease hit him hard and he found himself having to cancel concert dates. He also found himself in the unlikely position of becoming a national voice for Lyme Disease as he discovered the byzantine world of trying to get treated.  

Lyme Disease is now one of the most politically charged issues in the medical community. The debate crescendoed to such a point that in 2008  Attorney General Richard Blumenthal of Connecticut, where the Infectious Disease Society of America is headquartered, ordered an anti-trust investigation that found serious flaws in the group’s process of writing the Diagnostic and Treatment Guidelines in 2006. It also found  unreported financial conflicts of interest.  

The guidelines have a far-reaching impact in the medical community as many physicians use them to determine treatment.  Insurance companies also use them to deny care. Over and over. Which is downright scary considering, next to AIDS, Lyme Disease is the fastest growing infectious disease in the United States and the No.1 vector borne disease.  

Lyme Disease in the United States was first discovered in Old Lyme, Connecticut by a Mother Warrior: Polly Murray.  Without her persistence, doctors may have never identified what was making so many in her town sick. Vilified initially as ‘a doctor chaser,’ in 1971 Murray set out on path of information gathering to explain why her family, as well an increasing numbers of children in Old Lyme, were coming down with identical mysterious symptoms. When she approached the health department, her doctors told her she was simply stirring up trouble. Doctors initially deemed it all in her head when they couldn’t identify the cause.  She continued to dig and survey neighbors without interest from the medical community. As the circle of victims widened, she got media attention and her path finally led her to a Allen C. Steere, MD, a physician at Yale.  Steere listened.  

In her book  The  Widening Circle:  A Lyme Disease Pioneer Tells Her Story, Murray wrote: “They were spirited, like archaeologists who’d unearthed an intriguing artifact, some bit of pottery that promises even greater riches will surface with just a few more turns of the spade. I certainly shared their enthusiasm. On the other hand, I’d been “in the field” for a while, and I knew it wasn’t going to be easy to figure everything out so fast. Whatever this illness was, it was complicated, in that it involved so many systems of the body, and my instincts told me it was going to elude definition for some time to come.”     

Ultimately Steere and gang identified the causative agent of the disease as the spirochete  Borrelia burgdorferi. One would assume  nearly 40 years later that technological advances would have found the perfect diagnostic test as well as a magic bullet to kill the bacteria. In actuality, we’ve hardly progressed. What has happened in the ensuing years is mind-boggling.  

Dedicated physicians in the Northeast found themselves treating Lyme Disease patients full-time as the reports of their care was shared with others who were ailing. They never set out to become Lyme physicians, but the patients kept coming in droves. They were learning together what treatments worked by trial and error. These are the doctors who would become known as “Lyme literate ” or LLMDs. Patients were desperate for relief.  The standard blood test to identify the Lyme bacteria isn’t anymore sophisticated now than it was then.  It’s wrong at least 50% of the time and the CDC says it should not be used for diagnosis, but rather clinical observations. But doctors continue to use it.  

As physicians continued their dedication to these patients, they would be astounded and terrified of what came next. Slowly, one by one, physicians with full-time Lyme Disease practices were being investigated by medical boards and having their licenses pulled.  And patients were as terrified as their doctors.  What would happen to these patients if they had to go back to doctors unfamiliar with Lyme who told them what they really needed was a shrink? The insults patients endured seeking treatment was humiliating.  

There soon grew an underground communication buzz between patients to identify physicians who treated Lyme. To this day, patients and Lyme Disease advocacy groups do not post lists of known Lyme physicians.  On message boards, physicians are referred to by initial only, such as “Dr. C.”  Patients are very protective of the doctors for fear they will get caught up in the witch hunt. And many have.  

I didn’t know all this when my daughter’s diagnosing physician told me she couldn’t treat her. I was such a Lyme neophyte. She was a Side B physician and knew treating a Lyme patient could draw unwanted attention to herself.  I asked who she would recommend, and that’s when I learned that LLMDs in the south were few and far between, most especially pediatric LLMDs.  And those up north had waiting lists of a year. One year? There were plenty of fine pediatric infectious disease physicians in town, but they were likely to use the inaccurate blood tests to dismiss her.    

The doctor sent me home to research Lyme Disease and with some information on having my daughter tested. Since I had never heard of Lyme Disease, I began by looking at the symptoms and writing hers that matched on the back of an envelope. When the envelope was full, I simply stopped. She had 95% of the symptoms listed. Many of them started subtly when she was around four-years-old and escalated or added symptoms as the years progressed.

Very Pronounced Bullseye Rash

To my knowledge, my daughter never had the telling bullseye rash that 50% of patients get. That’s proof positive one has Lyme, even when blood tests still show up negative.     

 

My daughter was tested three ways:  

1)   The standard Lab Corp blood test called the Elisa, incorrect more than 60% of the time.

2)   A test by IGeneX  in California  performs the Western Blot that is 96% specific only if the person is making antibodies. If not, they use the PCR to check for it in DNA.

3)   The Q-RIBb  (Quantitative Rapid identification of borrelia burgdorferi ) test by Bowen labs in Florida where they bacteria is flourescent stained and observed through a Darkfield microscope. They actually photograph the Lyme spirochete in the blood samples.  (Called a spriochete because of its corkscrew-like shape, similar to the syphyllis bacteria.)

#1    Negative
#2   Probably
#3   Definitely  

I wasn’t clear why we were doing all these blood tests if the diagnosis was supposed to be a clinical one anyway. Even the CDC said that was the way to go. What  I learned, however, is that blood tests are done to appease insurance companies and to use it as back up documentation in case the tests come back positive.  

The doctor assured me my daughter had Lyme, and surprised me as well by announcing that she would take on my daughter as a patient after all.
I was over joyed as here I had a physician a mile from my house who personally understood Lyme and who could treat my daughter immediately. She wasn’t an infectious disease physician, but she was a trained pediatric hemotologist who decided to change the focus of her practice chronic diseases after contracting Lyme herself.  

There was one caveat:  she told me I needed to understand that she would “never ever go to court to testify for me.”  That was it? No big deal. Who was saying anything about needing to go to court anyway?  

Oh, how that one little statement would come back to haunt this Mother Warrior as our Lyme journey continued, deepened, and became downright bizarre.  

END OF PART II

Mother Warriors in the Lyme Disease War Zone

In her New York Times best seller, Mother Warriors, actress Jenny McCarthy writes of the courage of mothers dealing with their children’s autism and fighting back against a medical system that has all but abandoned them. Mother Warriors are women forced to take matters into their own hands for their children or be sentenced to having to sit back and watch them suffer as the medical world shrugs.

A number of years ago, when I was producing the Children’s Miracle Network Telethon,  the mother of one of our “Miracle Children” on whom I was doing a video made a statement that never left me. She was describing the torment of watching her 12-year-old son have excruciating headaches that made him vomit. The doctors said nothing was wrong, he probably just didn’t want to go to school. The dad made him go to school even when he was throwing up. Deal with it. The doctors refused to do a CAT scan until the mother’s relentless insistence wore them down. The results: a tumor the size of an orange in the base of the son’s skull. Surgery immediately.

“A mother knows,” is what Ann Ford told me that day. A mother knows her child better than any other human being and she knows when something is wrong. If it hadn’t been for Ann Ford’s refusal to let the physician dismiss her son as a malingerer, he would have been dead in no time. As it was, they weren’t even sure he would make it through surgery. The physicians ordered him immediately to the hospital and watched in amazement as John and Ann Ford left with their son Joey. “We’ll be there in two hours,” John said. “First I want to take my son home and apologize to him for not believing him and pray for his survival.”  Those prayers worked as Joey recovered wonderfully.

I know many of these Mother Warriors; I am one myself. They are the mothers of children with Lyme Disease. 

They are mothers who have often taken their children to twenty or more doctors before receiving a diagnosis of Lyme Disease.  By that time the children are so sick that they have missed an inordinate amount of school and the school board truancy employees are calling. They scour the internet to connect with other Mother Warriors for support, information, advocacy and how to find a physician who is “Lyme literate.” And sometimes legal help. They are mothers who have learned to take a deep breath every time a well-meaning (and sometimes not so well-meaning) person remarks “But she doesn’t look sick,” rather than saying, “And you don’t look ignorant.”  They are the mothers who are  bone weary tired after nights up with children crying, “Mama when will the pain stop? When will someone figure out how to help me?”  followed by days of working full-time jobs while calling home constantly. In between, they keep daily and hourly calendars of their children’s symptoms and pain levels, administer meds, keep track of missed homework, deal with the a school system that is dropping hints that maybe what the child really needs is a shrink, and ignore friends and family when they see Johnny in one of his rare good moments and admonish mom that she better make him get his butt up for school in the morning. And sadly, they are the moms who increasingly have to make the tough call to cut contact with those friends and family members who make the situation worse with overt negativity and disbelief that their child is even sick. Where once these mothers tried to explain everything to those who questioned, they now try to not engage in the subject for fear of where the discussion will lead. And they become isolated in their Lyme world because there is rarely any time, energy or money for anything else.

I never forgot Ann Ford’s “a mother knows” comment when I was seeking answers for my own children’s illness. It sustained me when some in my own family didn’t.

I tried everything to find relief of the pain for my daughter who was about 12-years-old when the worst of it hit, the same age as Ann’s son Joey was.  After hospitalization and no diagnosis other than a bad case of cytomegalovirus, her pediatrician referred me to a physician in town who dealt with chronic pain proclaiming she was the person who could help her. But she was out of the country for a month and that meant 30 more days of daily pain and wailing.  The chief of pediatrics at the hospital asked my daughter if she thought she had some weird disease, or she just wanted the pain to stop. “Just stop the pain,”  she begged. He then referred me to a craniosacral therapist when I was more than willing to try alternative therapies.  After a number of treatments the therapist was concerned my daughter needed something ‘more’ and we were referred to an acupuncturist and myofacial pain therapist. This woman, Shannon Goossen, was able to help relieve my daughter’s pain so much that I was joyous with relief that we had finally found the answer, even though she warned that Hayden’s symptoms were some of the worst she had ever seen. Unfortunately, even with great progress, after four or five treatments, Shannon raised concern too that “something else was going on like a virus or allergy” and she needed to see a physician.  By that time the physician was back in the country.

We went to see the physician and within 20 minutes  she told me “You have a very sick little girl. I think it’s Lyme Disease and it’s one of the worst cases I’ve seen.”  When asked why she thought so, the doctor told me she had all the classic symptoms and more, and the doctor herself had it, so she knew. Okay, what now?  The doctor took me through the tests and treatments options. When I asked her what as a mother I could do to help my daughter, these were her exact words: “Quit your job and stay home with your daughter for six months even if it means you have to sell your house.”

Damn. This Lyme Disease was some serious stuff.

But it was when the physcian told me she wouldn’t treat my daughter that I began to learn about the politics of Lyme Disease and how it was spawning a whole new crop of Mother Warriors.

  

END OF PART I