Kudos to some young people with hemophilia with great ideas. Billy Conde Goldman and Matt Tache have recently announced “Blood Vibrations.” This is an ongoing music project created by people in the bleeding disorders community.
In their own words: “The goal of the project is to provide a forum for creativity, expression and sharing. Anyone with a bleeding disorder (boys and girls, men and women) is welcomed to participate. We encourage collaborations and group works. Proceeds from the project will be donated to the bleeding disorders community. Pay it forward.”
They write that this project is run and funded by the community, for the community. There is no affiliation with or funding from any private or public organization or company.
Aspiring musicians with bleeding disorders, Billy and Matt look forward to your involvement!
I did it! Yessir, I’ve gone from cycling a paltry 21 miles back in June (to which Barry Haarde prodded me to go further) to 105.5 miles yesterday. Not bad for a 55-year-old mom. I’d jump up and down but my left knee is stiff.
On Saturday, I completed my first “century,” riding over 100 miles across Massachusetts. Many lessons learned from this event, and many parallels to our hemophilia community. In fact, I thought about our special community the whole way.
The first annual “Ride to Remember” honored two fallen police officers killed in June 2012 in the line of duty: Kevin Ambrose of Springfield, and José Torres of Westfield. My brother Tim Morrow, a K-9 officer in Springfield, my hometown, was a close friend of Kevin Ambrose. The ride raises
awareness of the perils of our men and women in blue, and also raises money for law enforcement families. So I couldn’t help but think of my friend Barry Haarde, who rode across America, both last year and this year, to raise money for Save One Life, and to raise awareness of our “fallen,” those with hemophilia who died from HIV, contracted in the late 1970s and early 1980s from the blood-clotting products they used. Barry posted a photo each day of his ride on Facebook of someone who had passed away, including his own brother, to honor their memory. Like our police officers, these young men sacrificed their lives so that others, including all our children today, can have a safer life. Only, they did not go willingly into this service. No matter. Heroes all.
About 250 police officers, colleagues, and family members, like me, gathered in Springfield, Massachusetts Saturday morning, September 21, at 6 am in the mildly chilly air. We were blessed with excellent weather: no rain, slight overcast skies for a while. While we milled about, eager to get going, like race horses twitching in their gates, we were reminded by Sgt. Delaney, who organized the event, this was not a race. We would stay
together as much as possible—very tough, as the roads were often one lane each way as we weaved our way through the charming towns of New England. My brother Tim and I are naturally competitive and wanted to break away (well, he later did!) but we complied as much as possible. He had trained weekly with his colleagues; I trained solo. I’ve never ridden in a group before. I looked about and saw a lot of hardware—expensive bikes, wheel, spokes, cables—and software—arms, legs, heads. I was a bit wary of riding too close to anyone due to my own inexperience in group riding.
We gulped down bagels and bananas and at 7 am shoved off, herded by a police escort of about 20 motorcycles to keep us in formation, much like a pack of helmeted border collies. What would get us through 105 miles to Boston? Not just bagels and bananas.
“Take it easy, baby…” (Take It As It Comes)
Music helps pass the time and motivates, so I thought of my favorite songs from my favorite band: the Doors, of course. I was amused at how many songs and lines seemed appropriate for this journey.
I was shivering in the misty cool air, but thought of our guide Jacob on Mt. Kilimanjaro: “Pole, pole…(slow, slow)” A journey of a thousand miles starts with a few steps. We were cautioned to go at a slow pace, 13 to 15 miles per hour. Now, 15 miles per hour is my regular speed, but here it was like crawling. It was challenging to have riders blocking my view, causing me to swerve, weave, wiggle
my front wheel to keep balance. The first rest stop was only 18 miles away, which also seemed too soon. We’re used to going 20-25 without a break.
We took it easy and it was. My fingers and palms would go numb occasionally from the morning chill but that would ease once
the sun rose. Stop #1: Palmer. So far so good. We laughed, joked, ate more
bananas and guzzled water. Tim and I would later mention we have never eaten so much in one day in our lives, but you have to eat. It’s the one piece of advice I
took seriously: eat every 15-30 minutes, drink constantly. My sister-in-law Lee made delicious sandwiches that went down fast. On we go!
“Keep your eyes on the road, your hands upon the wheel…” (Roadhouse Blues)
The pack was still thick as we kicked off to the next segment of the ride. I had to constantly monitor who was riding up on my right or left, who was slowing down in front. Hills. So many hills. Steep and
long. I’m not a big person, and I don’t have the quadriceps that some of these cops have, but I noticed on the hills I blew past a lot of the guys who could outgun me on a straightaway. I attribute this to my cross training and core workouts with my trainer, Dan. When the quads burn out, and they will quickly on these hills, the body kicks in other parts, like back and abs. Mine were primed and
ready to take over on hills. This is why cross training is so important: you can get serious back problems from overtraining one part of the body and not all parts. Yahoo! Up the hills I went, happy.
We passed through such quaint and picturesque New England towns: congregational church steeples piercing the blue skies above pumpkins plopped next to hay bales, antique shops. This is Sturbridge, our next stop and a historic town. I am baffled that I have never toured Sturbridge
Break On Through
Nothing can explain why, at the third stop in Charleton, I hit some sort of wall. I routinely ride 70 miles every Sunday; what was this all about? My mind felt fuzzy, quads buzzing with fatigue. I kind of stumbled in and grabbed some food. I resented having to stop so often, but you know, in the end, it was good the organizers made us stop. Otherwise we would burn ourselves out. I hardly saw Tim; he seemed to know everyone, and was busy chatting with his comrades. I actually am used to riding alone, and being alone, and didn’t really know anyone. I made a few friends, but preferred to use my rest time to stretch, eat and hydrate. Time to break through this wall. Maybe I should rename this section Pink Floyd’s The Wall?
Light My Fire
Well, things change! Back on the road, muscles got warmed up, and we hit a huge, long hill right off the bat. That was tough but again, I found the hills not a problem. I felt more motivated and competent and pushed it. Looking at the MapMyRide app, which charted my whole ride, I hit
18 mph at some points on this ride. Maybe that was down hill? Naw, because my speedometer said 35 mph going downhill. We were kicking it! This felt great
now. I learned something important about group riding, which I now prefer to
call team riding: you can draft. This means you ride behind another cyclist, who absorbs the brunt of the wind. You ride faster with less effort. I usually
can’t get above 18 mph, and even then only for a short time; now I was easily doing 19 mph with minimum effort. A lesson for teamwork, a lesson for our community. Stick together; lead; follow; be efficient; allow other leaders to take the helm when you get fatigued; listen to the leader, who spots danger first—Slow! Pothole!
Occasionally I would reach behind me and grab Snickers bars from the back pockets on my shirt, or Shot Blocks, or Gu gel, which give instant energy. Whatever I was doing it was working. Felt great!
Queen of the Highway
After 5.5 hours, we hit Grafton, next stop, about 60 miles in. We all checked in with each other: “How you feeling?” We lost a few riders and I watched the noble bikes sadly get hung on the inside walls of a truck, feeling badly for the riders. There were a couple of crashes too; riders who got too close to one another, or perhaps hit a pothole. My brother Tim even crashed. Flying downhill, probably at speeds over 35 mph, there was a sudden left hand turn at an intersection; he couldn’t slow down fast enough because the riders in front of him were going slower, so he thoughtfully went straight across the intersection, into a field and catapulted over his handlebars! Luckily, he hit soft ground and despite this spectacular landing, didn’t even have a scratch.
Only 40 something miles to go. This was so doable and easy! I plugged in my headphones now, and cranked up my music. We had a full police escort the whole way. The traffic in the oncoming lanes was stopped; all traffic in intersections was stopped. The world stopped for us!
Occasionally we had folks coming out of their homes to stand by the side of the road to cheer us on. Sweet. I felt unstoppable. Finishing was not going to be a problem!
I noticed that when hills appeared on the horizons, the riders, some 100 or more ahead of me, would swarm suddenly and become a huge pedaling mass. This is when I took to the incoming traffic lane,
as I could pedal pretty well up the hills, blowing by the big guys (and some petite women) who puffed and struggled. I started riding on the incoming traffic lane; I didn’t have to get too close to other riders, and had lots of room. Fun!
Stop 5: Ashland High School. Eat, eat, eat, hydrate. Stretch. Channel 22 news was interviewing riders, and providing live coverage. This was our last stop till Boston! About 30 miles to go.
“The future’s uncertain…” (Roadhouse Blues)
I was zooming along, when at mile 93—almost done—something kind of popped. In a second I had pain in my left knee, and couldn’t get it to work. I went from 19 mph to 9 mph in seconds. I could not
push that knee for anything. I think I was right on Rt 9, police motorcycles swarming around me, riders now zooming by me. I had been popping Tylenols the whole ride to help with general muscle soreness and specifically my neck, which has some arthritis in it. But nothing helped this. I hobbled along, dropping further and further behind in the pack.
I now lost focus on the surroundings and barely noticed the spectators cheering us on; we went through Wellesley, then Newton. I had my eyes down and was pushing my right leg hard to compensate. Don’t quit on me now! Thankfully, there was a final stop at Boston
College (that didn’t show on our ride map), where we all gathered in a huge, heaving, blue mob.
I limped over to Tim, who was straddling his bike and gripping his handlebars, even though this was a 30-minute rest, like he was ready to bolt. He took me to the emergency team where they taped my knee. It
was the least we could do, and the most they could do. We waited on the grass
till 5 pm, when the organizers grouped us for the final push into Boston. There
was a ceremony waiting for us.
That was a painful ride. My beautiful adopted home city of Boston, the birthplace of America, all the familiar sites—the Citgo sign! Seeing that made us believe we can do it. But I couldn’t keep up
well. I felt I was the last rider (though Lee assures me I wasn’t). The streets were lined with thousands of people waving, cheering, with flags and banners for the fallen officers and for us. I was in a surreal zone mentally. Through Fenway, down a tunnel, popping up to Beacon Hill and our beautiful state house
with the gold dome forged by Paul Revere himself.
“This is the end, beautiful friend….”
It was done. 105.5 miles. As I sailed to the back of the State House, I saved my GPS map and stats, and then and there my second and last power pack died—perfect timing. Everyone had that “high” so familiar when you do something athletically great, and are so tired but so euphoric. My
brother Tim and I hugged; this is the first time we ever did anything like this
together, let alone apart (although he is quite a competitive athlete). My
sister-in-law Lee gets the credit for providing our gear when we needed it,
giving us fuel to keep us going, and being moral support!
A beautiful ceremony ensued, with full honor guard, and the heads of state of the law enforcement, including Attorney General
Martha Coakley. Though we were exhausted and hungry, we stood more or less silently for 90 minutes while the dignitaries went through speeches and read the names of every single officer killed in action in Springfield. Very sobering, very sad. Such heroes.
And while standing there, at this beautiful memorial, where the names of Officers Ambrose and Torres had already been added, it reminded me that we in hemophilia do not yet have our memorial. Our shrine, where names can be added, where people can come and pay their respects. Almost 10,000 innocent people with hemophilia and HIV died, becoming the sacrificial lambs for future better and safer treatment of hemophilia. Barry did an astounding ride last year and this year to honor them. Maybe it’s time to think about our own memorial to our own “Fallen But Not Forgotten.”
My brother Tim told me that the activity with the highest fatalities when you are a cop is approaching a vehicle, whether for a routine traffic stop or for suspicious behavior. You don’t know if or when the driver will pull a gun or if you will be struck by another car. That amazed me; how dangerous is their work! And for us, it used to be that injecting factor was as dangerous; you didn’t know which vial had HIV.
Now, we don’t have those worries. We have those fallen to thank. I hope someday we can, through our own memorial.
Yeah, that’s sort of the name of a Doors song. Like I tell my friends, it’s always about the Doors. Just read the book review below.
But this blog, actually, is not about Jim Morrison, but about your hematologist (unless he is named Jim Morrison). He or she will have a new gig in 2014.
Doctors, like your hematologist, will soon have to
disclose gifts and payments they receive from pharmaceutical companies. Under the Sunshine Act, a provision of the Affordable Care Act, pharmaceutical and medical-device companies will have to report almost every financial transaction they have with doctors, whether paid research consultation, paid speeches, or even having dinner with them.
That information will then be published on a searchable, public website as of September 2014. Why?
Many of our hematologists receive income from consulting and speaking fees from factor manufacturers. Now, this is normal. The hematologists and treatment centers carry out valuable research, on inhibitor formation, new products and joint disease. This is often funded by factor manufacturers. And the Sunshine Act is not trying to stop that. In one brochure, it says:
“There are many interactions between physicians and manufacturers of drugs, medical devices, and medical supplies that benefit patients and advance the art and science of medicine. The Sunshine Act transparency reports provide patients and the public with information on the financial interactions of physicians and industry. These interactions often drive innovation, discovery and changes in medical practice that may promote better patient outcomes. The congressional sponsors of the Affordable Care Act (ACA) reporting provisions have stated that this process is not designed to stop, chill, or call into question beneficial interactions between physicians and industry, but to ensure that they are transparent.”
I think we can read between some lines. If you receive a large sum of money from a particular manufacturer, and you have the ability to write prescriptions, might you be a little bit biased in wanting to prescribe that manufacturer’s products?
I don’t think that question has ever been studied or answered, at least in hemophilia. Maybe the answer is no! Never! Great. But… until we have such data, there is always the possibility that there could be prescribing bias. And in hemophilia especially, we have always guarded the patient’s right and ability to have choice of product. I mean, I have devoted the last 23 years to that subject.
So the Sunshine Act is here to ensure Pharma doesn’t get carried away in generously funding research and educational symposia to the point where it is inadvertently influencing physicians, and that physicians keep track of how much they are earning and receiving from whom. Makes sense.
And physicians will have the right to review their reports and challenge reports that are false, inaccurate or misleading. It’s all for our good, the patient, the consumer, the money-generator. Another good thing to come out of the ACA.
Great Book I Just Read
The Doors Examined
by Jim Cherry
Cherry was a writer for The Examiner and in this superbly crafted book, reports the well known stories and scores of not so well known tidbits and facts about the Doors, the iconic rock band from the 60s. You will learn not only new things about the Doors, but connections to other songs, singers, rock bands and record companies that are fascinating. The book deftly networks the albums, songs and band members with their times, which were explosive. He delves deeply into Jim Morrison’s psyche and writes about how his poetry fueled the Doors’ lyrics and his antics on stage. And not just the Doors in the 60s, Cherry traces the Doors’ cultural influence all through later years, into film, art, TV, poetry and music. A Doors concert in which a fan was hit with a chair became Pete Townsend’s (The Who) inspiration for a scene in Tommy, “Sally Simpson.” Iggy Pop and Patti Smith each watched Morrison on stage and decided then and there to become stars. Cherry even covers the grave at Pere Lachaise Cemetary and Morrison ghost sightings, and Doors tours in Venice, California (sign me up). The writing is concise and firm, but the chapters do jump around chronologically and sometimes get redundant. Still, a totally fascinating and well written book about a ground breaking band, which in 6 years left a permanent influence on music and our culture. Speaking of being biased (above), I am just a little when it comes to the Doors! Four/five stars.
While catching up on some insurance reading, I came across this article, which gives some food for thought. I’ve been giving insurance symposia around the country, and we have been focusing this year on the “Marketplace” websites, but this never even crossed my mind!
“Buyer Beware: Obamacare creates an opening for confusion and scams”
Government Bureaucrats aren’t the only ones preparing for a key component of President Obama’s signature health care law that goes into effect this fall.
Health care exchanges, the marketplaces where people can buy soon-to-be required insurance, launch Oct. 1, and experts warn that their debut
could create a prime moneymaking opportunity for illegal scammers and others looking to capitalize on consumer confusion. “There are people licking their chops and saying, ‘A sucker is born every minuet,’” says Elizabeth Abbott of the consumer group Health Access California.
There are two main types of potential snares for consumers: outright cons and insurance-like plans that give the impression of offering
more coverage than they actually provide. Regulatory agencies are already on high alert for fraud. Both the Federal Trade Commission and the Better Business Bureau have posted warnings about Obamacare-related identity theft. And in Pennsylvania, one enterprising insurance broker set up a website with the official state seal and the title Pennsylvania Health Exchange. The site was removed after a warning for the state insurance department.
Some quasi-insurance products expected to proliferate come October are ‘discount medical plans,” which promise lower health care costs in exchange for a recurring fee. Many of these plans lure customers with language that implies comprehensive coverage, but the reality is far more limited.
“The problem is, people pay the money, buy a plan, and when they get sick, they find out they don’t’ have the financial security they thought they had,” says Minnesota attorney general Lori Swanson, who has sued several discount medial plans for deceptive market practices. Consumer watchdogs are also wary of plans that reimburse consumers with set amounts for doctor visits or hospital stays, regardless of the actual costs.
Obamacare bans some forms of skimpy coverage, but with enforcement left to the states—some of which are less than enthusiastic about
the law—don’t count on those misleading plans disappearing overnight. “Will the states crack down on them?” asks Timothy Jost, a law professor at Washington and Lee University and an expert on insurance regulation. “Well, a number of states
aren’t enforcing the Affordable Care Act at all.”
Time August 19, 2013Great Book I Just Read Into the Abyss: An Extraordinary True Story [Kindle]
A small commuter plane goes down on a subzero night in 1984 in Canada; only four of nine people survive: the 24 year old pilot, the first Muslim politician in North America, a policeman and his handcuffed prisoner. The next 36 hours reveals each man’s character, impacts them for life, and bonds them to one another for life. The prisoner saves the lives of the other three and becomes a national hero. This amazing story, expertly told, delves deep into the minds and hearts of each man before and during the accident, and follows them 20 years later to see what has become of them. The incident helped to change Canadian aviation. The author is the daughter of the politician, one of the survivors. Five/five stars.
I’ve had some great travel this summer: from the picturesque beaches of Cape Cod, Massachusetts and the bustling island of Martha’s Vineyard, to the canyons and deserts of Arizona. But Kodiak Island, Alaska could be one of our country’s best-kept secrets.
South of Anchorage, tucked away in the Gulf of Alaska, Kodiak Island was born in a geological eruption, a volcano, and is a jagged piece of real estate lacking
roads and harboring crazy weather patterns. At 100 miles long, it’s the second
largest island in the US. Only about 6,000 people live here, half of who belong
to the Coast Guard. Indeed, Kodiak Island is home to our largest Coast Guard
facility, thanks to its proximity to Russia and here to protect Kodiak’s
massive fishing. Verdant mountains landmark Kodiak, the biggest town, and
across the bay, ripples of blue mountains as far as you can see. It is a
stunningly beautiful place.
It’s also a challenging place to raise a son with hemophilia. I came here to visit my
dear friend Kerry (Fatula) Halter, who lives in Kodiak with husband Ron and son
Stephen. Kerry and I met years ago at a hemophilia event, and you know
chemistry… we just clicked and have been good friends ever since. She moved
from Pennsylvania, where she was executive director of the Western Pennsylvania
Chapter of NHF, back home to Kodiak, her birthplace, two years ago. She and I
had been plotting ever since about having me come and visit. My schedule
finally permitted, and I took the 15+ hour flight from Boston to Alaska, my
first trip there.
different, no doubt about that. You sense at once upon landing in Anchorage that this land, these people, embody the American can-do and pioneering attitudes. This is their land, their lifestyle, and ain’t nobody going to tell them what to do! It’s the perfect life for an outdoors person: hunting and fishing are key occupations and diversions. Everyone in the airport seemed to be wearing camouflage. I must have missed that memo. And there was an abundance of men; Kerry later told me in Alaska the ratio is one woman to four men. Lest you think these will improve your odds of getting a date, know that these are real mountain men, bearded outdoor types who work hard and play hard, and seem happy outside in the cold and rain as much as inside having a beer at a local brewery. And people are friendly and forthright. It’s a fascinating culture switch. Kodiak appeals to me on many
Kerry and I started our four day visit with a rainy, shrouded day on Thursday, in which I couldn’t see anything. No mountains, no bay, no fishing boats… nothing. She stressed how beautiful Kodiak is, but I was just happy to be here. Stephen looks great! I had last seen him two years ago, and he has matured into an articulate 10 year old who has adjusted well to his move. We celebrated by going to the Coast Guard station, where Ron works in aviation, to the theater to see “Pacific Rim.” So it’s my third time to see this movie, but worth it as it’s a fun and explosive summer CGI movie by the renowned Guillermo del Toro. All three of us whooped when the opening scene subtitle read “Alaska,” where the “Kaijus” begin attacking, and much of this long opening is set in Alaska. But I wondered why I never paid attention to the word Alaska before. I saw the movie twice and never paid any attention that it was set in Alaska. I realized sheepishly that like most Americans, we pretty much ignore our 49th state, even when it’s being ravaged by giant alien creatures. Granted, our largest state (and I mean large, totally dwarfing hefty Texas) only harbors 1 million people, half of whom live in Anchorage. You never hear much from Alaska, and probably, Sarah Palin did much to remind everyone that we have a 49th state.
Despite its stunning beauty, Kodiak is not always an easy place to live: prices are astronomical ($5 a gallon for gas?) as everything needs to be flown or shipped in. Fresh fruit? Kinda rare. Kerry warns me that before purchasing any fruit, it must be squeezed for freshness, and to check expiration labels of everything. There are few roads outside of the main city, and you need to fly a charter plane here and there. Planning ahead is key.
This is especially true with hemophilia. Stephen is the only child with hemophilia on the island. His HTC is in Anchorage. Clinic visits take planning. The Coast Guard will fly them for free in a noisy, unglamorous C-130 (that’s a big plane!), but only one parent can fly and it flies on certain days of the week. Otherwise they have to take a commercial flight. Now flying from Boston to Anchorage is not as expensive as you think, about $490. I could pay that much trying to get to Newark sometimes. But the one hour flight from Anchorage to Kodiak?$500, thank you very much.
So visits to the HTC are expensive. Thankfully, in any medical emergency, the Coast Guard
will fly him no matter what.
And emergencies are to be expected as Stephen also has an inhibitor. I watched him
last night loading up his factor, and preparing to have it pushed into his PICC
line. What was it like having hemophilia on the island? “It’s ok,” he replied
matter-of-factly. “I can mix my own factor but need to have it pushed in.” [I was
not about to do that; Kerry and Ron were out getting us a movie for the night] He chatted about sleeping over his friend’s house, going to the rodeo that day; in short, he leads as normal a life as anyone. Quite remarkable. No fears about having hemophilia with expert medical help so far away.
He put it further in perspective for me. “If I were still living in Pennsylvania, I’d still have to drive an hour to the HTC, so it’s the same thing pretty much.” Wise child!
And he has connections; the Alaska Hemophilia Association in Anchorage is well established, and is operated by Kerry’s aunt, Louise Cobb! But Stephen has to contend with things most school kids do not. Kodiak is home to the famous Kodiak bear, a massive brute. There are thousands of them on this island. One was spotted once in their neighborhood, and so Kerry had to accompany Stephen everywhere, particularly to the bus stop, armed with Bear Spray (pepper spray), which works effectively to deter a bear attack. Still, it was frightening.
Stephen also takes advantage of the outdoor life that Kodiak offers. He fishes;
salmon is rampant here and we witnessed thousands of salmon clogging the rivers, spawning. He flies; he gets to drive the family’s 4-wheel vehicles up and down the beaches and through the woods. The
4-wheelers are risky for a child, but Stephen will grow up knowing how to manage one. I imagine he will grow up learning how to hunt as well. Kerry and Ron were talking about hunting, and how delicious fresh venison is.
the clouds cleared as fast as they arrived and the day was mild and sunny. We
drove an hour away to Cliff Point beach, where we drove the 4-wheelers, beach
combed and picked at washed up jellyfish and thousands of shells. We then explored
Fossil Beach, a stunning beachhead guarded by two massive cliffs of volcanic
rock. Here are large rocks that were flung from the center of the earth in one or
two cataclysmic eruptions long ago, with shells and even tree trunks deeply
embedded in the stone. When you touch them, you touch the earth’s geological
history. Despite the setting sun and cooling air, the boulders were warm to the
touch, like living, breathing organisms.
Kodiak has so much to offer. I wish all Americans could see this extraordinary treasure. Yes,
life is a bit more challenging due to hemophilia, and inhibitors, but Stephen
is managing just fine, thanks to his proactive mom, the readiness of the Coast
Guard to assist (thanks to Ron!) at any time, and Stephen’s own can-do spirit
which compliments well the culture and attitude of Alaska, and his new life in
Laurie in rock heaven!
Great Book I Just Read
Pilgrim’s Wilderness: A True Story of Faith and Madness on the Alaska Frontier [Kindle]
by Tom Kizzia
A true but horrifying story of “Papa Pilgrim” who dragged his wife and 14 kids to a 420-acre mining claim embedded in Alaska’s Wrangell–St. Elias National Park. McCarthy’s townspeople were intrigued by the ultrarighteous preacher and his charming pack of fiddle playing kids, but when Papa bulldozes a 13-mile road through the park, and claims public land as his own, the federal government takes an interest. Eventually there is a showdown, even as his children, now teens and adults, try to break away from their father’s abusive and hypnotic hold over them. Papa is none other than Robert Hale, born and raised in upper-class Fort Worth, Texas, who is suspected of murdering the daughter of future governor John Connally when he was 20. This exciting piece of reporting is a caveat for those who cave in to anyone spouting religion, politics or any doctrine: Think for yourself. If it doesn’t look right, it isn’t! So many suspected something was wrong with the family but chose to look the other way, because Papa was a “Christian.” And children suffered horribly. Four/five stars.