Emily Haarde surprises son Barry
At some point during our 50 mile ride last Monday, which would
complete Barry Haarde’s epic ride across America, I had to confess to him that
while I was pleased that I was keeping up with him, a world class athlete, at
his pace, I had only learned how to clip in my bike shoes two days prior.
Really.
I would not have done this ride at all if it were not for Barry’s insistence
that 1) I could do it, and 2) I had to do it as president of Save One Life, the
nonprofit I founded and the cause for which he just spent 49 days in a hard
saddle, cycling from the Pacific Ocean in Oregon to the Atlantic Ocean by noon
on August 6, raising about $35,000. Barry’s ride truly was epic: no one with
hemophilia, much less hemophilia/HIV, had even attempted this. Barry attempted
and was victorious. And I was so privileged to ride alongside him for the last
day.
Privileged but not worthy. I am such a cycling novice. Somehow,
Barry seemed to think that because I had summited Mt. Kilimanjaro last August
(if you read my blog from a year ago you know that I was pretty much dragged unwillingly
up that summit in the final 7 hours; the rest of the hike I did just fine), I was naturally going to be good at cycling. But my bike, an Orbea Diva, a very
expensive 50th birthday present to myself four years ago, scared me.
Yes, my bike scared me.
Its ultra light carbon frame, clip pedals and wacky gear shifting made it a totally different ride from the heavy, clunky but sturdy hybrid I had
been riding for years. When I first took the Orbea out for its maiden voyage, I turned to look behind me at traffic, in order to execute a quick U turn. I
promptly fell in the middle of Route 1 northbound in Rowley, Massachusetts—not a good place to be! I was mortified. I couldn’t get my darn feet out of the clips (you know something is bad when I say the word “darn”). I couldn’t get the feel of the bike; like a highly sensitive horse, the bike responded immediately to any slight shift in my body weight.
I couldn’t get the hang of the gearshift: what did the instruction manual mean by two clicks? I shifted gears like crazy, not knowing whether I was in
high or low or what. I rode the bike only twice that year, not enjoying either ride. I didn’t ride it at all the second year. My beauty hung on the garage
wall, ignored, like a forlorn trophy gathering dust. Last year I took it out a few times, scared, unsure and still not able to shift any gears. I marveled at the cyclists I saw, how they had mastered their steeds. I had little time to crawl back humbly to the bike shop and ask how to shift the gears. Soon, I told myself, soon.
.
Laurie and Barry about to set out
Then came Barry Haarde, with a wonderful idea to raise money for Save One Life. Barry was so taken with our cause, that he proposed something no one had ever done. Save One Life would raise the money with him, and support his trip. He joined America by Bicycle and 49 other cyclists, and embarked on a well defined route that would lead him to my backdoor, practically: Portsmouth, New Hampshire, just 20 minutes up 95 north from my house.
And he wanted me to join him that final day, to cycle 50 miles to dip our wheels in the Atlantic Ocean in victory.
But I was not worthy to wipe his clip-in bicycle shoes!
So I started rehearsing, mounting that feather light frame,
wobbling on razor thin tires, jamming my feet helter-skelter into the foot contraptions,
eventually snagging the pedals, and off I went. The most I ever cycled at one
time was 12 miles. My first venture of the day left me saddle-sore, bow-legged
and bruised badly. This is fun?
Undaunted, on Sunday, August 5, I waited for the cyclists to roll in, in Portsmouth, New Hampshire. And in they came: most of them were in their 50s and 60s, silver haired speed demons on a gorgeous
collection of elite machinery: hip clothes, excellent physiques, and not the least bit tired looking, despite having cycled 76 miles that day. Gulp.
Finally Barry coasted up to the Comfort Inn, where we waited with hugs for his achievement thus far. He had a wonderful, fantastical faith in my ability
to do the 50 miles the next day. Should I tell him now about the clip in shoe confession? Maybe I should tell him that I still couldn’t shift the front gears
at all. That might have an impact on my ability to climb hills. Nope. There were other things to do. Barry’s family had secretly flown all the way up from Orlando to welcome him and surprise him and we were keeping this a state secret. They had all checked in about 30 minutes before.
While Barry was upstairs getting settled in for the evening, his mom Emily, age 84, snuck down stairs and waited in the lobby armchair, just as cool as a cucumber, but giggling with anticipation. When Barry reappeared, he walked right by her, sat in an adjacent armchair and began speaking to me about the day’s road trip. The surprise was getting anticlimactic when the son didn’t recognize his own mother (who in all fairness was turned away from him watching the Olympics on TV). I eventually had to suggest that the nice lady in front of him might come to dinner… and then, what a sweet reunion! Barry had hoped his family would join him and so they did: brother, sister, nieces and cousins.
Dinner that night was a celebration and ceremony of the achievements of a diverse group. Barry was riding not only to highlight the plight of the
poor with hemophilia in developing countries and to raise funds, but also had been devoting each day in memory of someone who had died of hemophilia/HIV. This included his own brother and brother-in-law, whose photos he would wear on his back the next day, the final day. I would spent a lot of time on Monday staring at that back, staring at those wonderful men who passed away so young.
As we left the dining room, Emily, bringing up the rear, leaning on her cane for
Bagel Stop!
support, joked, “I’m the cow’s tail,” which made me turn and smile at her—this was a phrase I had not heard since my grandmother passed away in 1996. It was one of her favorite phrases. That phrase would dog me the next day.
Adrenaline was surging Monday morning! I hopped out of bed at 6 am, donned the very stylish cycling clothes. By 6:30 am we had gulped down many carbs at breakfast (oh my, could these guys eat) and straddled our bikes, ready to go. “Barry,” I timidly said, first confession about to seep out. “Could you check the air in my tires? The Orbea hasn’t been in the bike shop in… about four years.”
Oh yeah. It was at 20 pounds of pressure when it should have been 120 pounds.
Off we went! The day was cool, with thunderstorms predicted but which never emerged, thankfully. I was thrilled when we zipped away, over a
bridge, down the road. This was pretty easy.
Twenty minutes into the ride and I noticed I was really losing ground as Barry pulled away from me. Try as I might, I couldn’t recover. Wait—my bike was making an odd, rhythmic sound. Barry slowed down and I asked him about the sound. The front gear? I reached behind and squeezed my tire,
which was completely flat. A flat tire. Me. The interloper. Barry remarked he hadn’t had a flat tire in oh-about 2,000 miles, not since Wyoming. Me, 20
minutes into an historic ride.
We called the support van, which showed up immediately and changed the tire. This put us about 15 minutes behind everyone. What a difference when we began riding again! We zoomed along. Despite not being able to shift the front gear, it was permanently stuck in low gear, so I couldn’t manage any hills well.
By about 9 am we had our first pit stop (SAG, as they call them). Everyone gathered together, chowed down granola bars, peanuts, chips, fig newtons, oranges, replenished water bottles and joked about. Jeff and Al decided to switch bikes, not something recommended but after 3,600 miles, they must know what they are doing.
Off we went again; the miles passed easily and Barry and I enjoyed coasting by picturesque New England towns and back roads. Old Congregational
churches sporting white steeples, horses grazing in the fields, men fishing off bridges, rolling green hills and rich green trees. Barry couldn’t stop remarking about the lushness of New England compared to Texas, where he now lives. New Hampshire is a pretty state and typically New Englandish; it’s a state I turn to for adventure and fun. It’s here I go rock climbing and skydiving—and now cycling.
I confessed to him when I was feeling more cocky about my ability to master the clip in shoes just on Friday. Barry diplomatically didn’t comment.
The next pit stop seemed to come up quick: a bakery in downtown Exeter. Again? Really, guys? Bagels, donuts, coffee… I could have kept going
but it seems the team was eating its way across New Hampshire! Off we went again and this time no more stops…. So we thought.
The ride was going unbelievably well. Barry, having a rear view mirror attached to his helmet, knew the best times to pull alongside me and chat. Cycling is so much better when someone is along to chat with or pace you. I learned more about this remarkable man, the brother he lost, how he got
involved only since 2009 in the hemophilia community, how it took his brother’s death to push him to become a participant, then activist, and now, first person ever with hemophilia to cross the US by bicycle. With over 1,400 friends on Facebook, almost all related to hemophilia, Barry has become an icon in our community.
Barry announced my milestones: “Twenty-four miles, twice as long as your longest ride!” “Thirty-five miles…” and then “Just two miles to the
high school…” where we could congregate, do a group photo and then be escorted by New Hampshire’s Finest to the Atlantic Ocean at Wallis-Sands Beach for the wheel dipping ceremony.
And then disaster struck: Barry’s bike made a terrible noise and he pulled over to the shoulder, on a residential street with magnificent homes.
Only two miles from the “finish.” His chain had snapped. With characteristic Zen calm, he said, “That’s it. I’m done.” And then added ruefully, even smiling, “Figures. I’m always the underdog.”
I happen to like rooting for underdogs. He called the support vehicle, but wasn’t sure just where on the route we were. I thought it was North Street; Barry thought it was West street. The driver got the wrong street number and waited for us down the road somewhere. Precious minutes were ticking
by. At 11:45 am, with or without Barry, the team would cycle to the beach and dip their wheels. Barry just had to be there!
“Take my bike,” I begged. “It’s important that you finish!” But Barry patiently explained 1) it’s a girl’s bike (but it’s only 2 miles!) 2) the seat is too low (well, bend your knees!) 3) I can’t bend my knees due to arthritis (Oh. I felt stupid; all this time I never noticed that Barry couldn’t bend his right knee beyond 45 degrees. And he did this all across America on that knee?) 4) The seat is too low. (But…but….)
The support vehicle finally showed, and Mike, the driver, was none too pleased. Tension was mounting. He thought they couldn’t fix the chain in
time. Take my bike, please. Mike then took my bike, muttering “Where’s your personal support vehicle?” and jacked up the seat, as high as it would go, “without it snapping in two,” he warned. Barry sat on it; his feet couldn’t even clip in to the pedals. But off he went. It was amazing how fast he zipped off; before we even got into the van—with Mike frowning at an unregistered rider in the support van (me)—Barry was
just gone.
We drove in to the high school, begged everyone to stop the photo shoot to wait for Barry and what seemed like agonizing minutes was really only
about 5. Barry wheeled in, looking like a teenager riding a little kids’ bike. He got cheers and whoops from his own teammates, and a few jokes. Amazing victory; seriously, the Olympics held no greater charm for me than this sweet moment.
After the shoot, the police positioned their cars and everyone slowly cycled to the beach, an armada of wheels, helmets and great big smiles.
Al, the joker (every team has one) kept declaring, “I want to be last!”
But Al, someone shouted, Laurie is! “Aw, she doesn’t count!” he quipped. And I agreed; me, the cow’s tail, didn’t count. I only did 50 miles,
and these cyclists did over 3,677! 50 days to my one day!
A huge crowd was waiting at the beach, as they knew to expect the riders. People of all ages, applauding at their achievement! Present too were
Save One Life staff and Janie Davis of Baxter Healthcare (Baxter sponsored the ride) and even a few local families who so kindly came to give their support.
We dipped our wheels in the chilly Atlantic, amazed at how this day turned out. It seemed no obstacle, no matter how close to the finish, could
stop the incredible Barry Haarde. His mom, standing by his side in the brilliant sunshine, beamed. So proud of her son, as she should be. So was I; so were we all.
Congratulations to Barry Haarde and to all the cyclists that day; I do believe you don’t know who you are until you know what you can do, and
pushing yourself to near-extremes is one way that adrenaline junkies like Barry and me find out. I didn’t know I could do 50 miles on a bike I was afraid of. Barry didn’t know he could do over 3,677 having hemophilia, HIV, a half-useful knee. I think when you attempt feats with a purpose, a cause greater than yourself, a cause that helps others less fortunate, you find strength within, and resources within, you never knew could be possible.
And just to prove it, Barry pushed me some more. You’d think he’d want to rest after traversing the US? No way: 12 more miles the next day in Massachusetts; up to 6 am Wednesday to drive to Maine and do another 12 miles all along the gorgeous coast of York. I couldn’t think of a better way to share his victory. And I can’t wait to do the next ride with him.
Special thanks to Baxter Healthcare for sponsoring Barry’s ride! Thanks to all who donated!
Book I Just Read
The Road Less Traveled: A New Psychology of Love, Traditional
Values and Spiritual Growth by M. Scott Peck
An appropriate title to read after this road trip, but not nearly
as exciting. Written in 1978, the book explores the meaning of love through the
eyes of a psychoanalyst. Love, as he defines it, is a journey that helps
another grow spiritually. Peck delves into meanings of love and discipline,
expressions of love, and shares vignettes of how people overcame emotional
difficulties. He describes the difference between love and being “in love”—which
was well written. I read this in the 1980s and thought it was brilliant; rereading
it again, I now see it as dated, fairly academic and dry, and limited. Who can
really say what love is, when there are so many types of love? The first half of
the book is more about love and mental health and taking personal responsibility for navigating life—good stuff; the second part gets into spirituality, God,
science and Christian values. Some of his take on religion vs. science is a bit
head-scratching. I found the first half of the book more readable and useful
than the second half, which was muddled and lost focus. Two out of five stars.
Last year I summited Mt. Kilimanjaro to raise money for the nonprofit I founded, Save One Life. We’re starting to corner the market on “adventure fundraisers.” This year? We conquer the
American highways with “Wheels for the World”!
On Monday, June 18, Barry Haarde, a 46-year-old Texan living successfully with hemophilia A,
HIV and hepatitis, from Texas, will start a 3,667 miles coast-to-coast bike ride from Astoria, Oregon to
Portsmouth, New Hampshire to raise funds for Save One Life. This is the first time someone with hemophilia will bike across America for charity!
Save One Life is a Massachusetts-based international nonprofit that provides direct financial aid to impoverished people with bleeding disorders in developing countries. Founded in 2001, Save One Life provides one-to-one sponsorships for almost 1,000 beneficiaries in ten countries. In addition, it provides funding for camps, scholarships for students and support for outreach to locate patients in rural areas. Barry is one of our dedicated sponsors.
Please help support Barry!
Pledge by the mile or by the state; make a one-time donation or sponsor a child—all proceeds go towards operations and programs to help Save One Life’s mission. Thanks to Presenting Sponsor Baxter Healthcare International for helping to make this possible!
Today is the birth day of Frank Schnabel, a California businessman who over 60 years ago founded the World Federation of Hemophilia. All across the globe today, the hemophilia community celebrates unity, that we are one family united by a protein deficiency that causes prolonged bleeding and suffering.
We are divided only in access to treatment. Up to 75% of the hemophilia global community has no access to factor. We are trying to close the “gap,” as the WFH puts it, by donating factor medicine to those in need.
Help continue to unite the world hemophilia community. Donate unused or unwanted factor to Project SHARE, or sponsor a child with hemophilia in poverty through Save One Life. Give back to those in need, and to honor those who have gone before us.
I love getting older. Really! Part of the joy is watching all the young boys I have known with hemophilia over the past 24 years, both here and abroad, grow up. I just went out to lunch in Waltham with a friend today, which is not a town I normally visit, and who should walk into the restaurant? A mom of a boy I have known with hemophilia since he was 2. We chatted for a bit. Her son is in college now, like mine. I get a warm glow thinking of how lucky our sons are to survive despite this disorder.
Not all children with hemophilia worldwide are so lucky. And you normally don’t expect young people like our sons to think of such weighty matters; after all, they have college, jobs, video games and girls on their minds. But one young man stands apart from the crowd, and I have known him and his family for years and years. Diane, his mom, is one of our biggest sponsors for my nonprofit Save One Life. The Horbacz’s sponsor 30 children! And next week, they journey to India for the first time to meet their sponsored children.
Not only that, but Matthew, only in high school, has decided to try to help us hit 1,000 sponsored people with hemophilia through his school.
On the Save One Life website, Matthew writes: “I cannot say that I ‘suffer’ from hemophilia, but the impoverished children in developing countries truly do suffer from a condition that could be so easily improved through better medical care and access to medication. Now if one of these kids falls and hits his knee, do you know what he does? Nothing. Medication is not available, and he may not even have access to ice. Rather than giving himself an infusion, he has to wait it out and pray. For those who are lucky enough to not know what internal bleeding feels like, let me tell you that, even with proper medication, it’s NOT a pleasant experience. Your joint will become swollen, your movement is severely restricted, and it’s very painful. Now imagine if this happened to you and there was absolutely nothing that you could do about it. You knowingly had to endure the pain and suffering while kids in wealthier countries like America who “suffer” from the same exact condition are able to live completely normal lives.
“Kids in poor countries are unable to live normal lives–many do not even make it past their teenage years. Through Save One Life, for $20 per month, you can help save the life of a child with hemophilia with food, medicine, and education. After discovering Save One Life and reading about the suffering children, it inspired my family and me to sponsor a child. It started out as just one child, but over the years that number grew. Today we proudly sponsor 30 children.
“This April my parents and I are going to India to meet the children we sponsor and bring life-saving medical supplies. However, seeing children who do not yet have sponsors will be a most painful experience. How can I go empty handed to visit these kids in great need? Well, I don’t plan to. My plan is to match each kid I meet with a sponsor. Therefore, I am asking for your help. Please help me meet my goal of finding 35 sponsors before April 4th. Please consider sponsoring a child or possibly making a donation in support of my mission to India. Please help Save One Life. Together, we can make a difference. Thank you and God Bless.”
Matthew represents the future of America, and this life-changing visit will surely plant seeds that will sprout in the years to come. The power of one young man with hemophilia to change the world! It’s humbling and admirable. Visit www.SaveOneLife.net to learn more and to support Matthew’s mission.
And ask yourself: what have you done for a suffering person lately? What’s your mission in life? Find it and live it; take it from Matthew. There are many ways to directly help those who suffer, through Save One Life. Good luck, Matthew and God bless you!
Great Book I Just Read The Island of Dr. Moreau by H.G. Wells The gifted Wells has created an unsettling sci-fi masterpiece that impacts at many levels. Superficially, Pendrick, a British scientist, is shipwrecked on a remote island where he finds strange creatures, combinations of man and beast. Eventually he meets Dr. Moreau and his assistant Montgomery, who are conducting horrible vivisection experiments on animals. Eventually Pendrick learns they are attempting to transform animals into human beings. Pendrick watches in horror at the unfortunate outcomes, which seem a mockery of nature. The creatures are subservient to Moreau, who rules them with “Rules” and whips. With the references to hairy beasts, dark skins and intelligible speech, Wells clearly makes an indictment of the British Empire, subjugating and attempting to civilize the “lesser” people of the world in India and Asia. It also is a statement on evolution: can we evolve “down” as well as up? And finally, humanitarianism. In trying to make the beasts into men, is Moreau trying to make the animal culture/nature into something better, but also something it is not? Moreau plays God and attempts to alter genetic codes, nature and destiny. Extremely well written and very hard to put down. A literary classic. Five/five stars.
Remember this slogan? It was found on bumper stickers in the 70s, from what I recall. Maybe this was my first attempt at editing: were they trying to say, “What on earth are you doing, for heaven’s sake?” Like, “Are you crazy or something?” Or maybe, “What on earth are you doing for Heaven’s sake?” as in, what’s your purpose here on earth before you go to Nirvana, Heaven or get reincarnated as an insect?
I thought of this bumper sticker when I read the essay submitted to me by friend and colleague Adriana Hendersen. She is a one-woman agent for change in Romania, and has changed the lives of dozens of boys forever. This is excerpted from the November issue of my newsletter PEN. In case you missed it, read on…
Why Am I Here? “Why are we here?” is a philosophical question concerning the purpose of life.
“I have asked myself many times why I am here, but with the emphasis on here, in the US.
“In 1970, I seemed destined for a different life, in Romania. My father was sentenced to spend his life in a communist prison for criticizing the government’s decision to deny the family the right to emigrate; and we, his children, were supposed to be sent to reeducation school. But we didn’t know that our situation had been receiving international attention. Following pressure from the United Nations and various churches, the Romanian government asked us to leave Romania immediately. It was a magnificent, magical, miraculous exit. We were the first family in Romania to leave legally, not only with a passport for emigrants, but also carrying an American green card.
“As a young girl I never once looked back, or even thought about what I had left behind. I thought I would forget Romania, and hoped I would forgive. I pursued everything the US offered: freedom and opportunity. I had a wonderful family, a big house in the suburb, cars, trips around the world, a closet full of designer clothes. Most important, my family was healthy. Yet it felt like something was missing.
“When the Iron Curtain fell in 1989 and images of the harsh realities in Romania besieged the world, I could not ignore my country and people anymore. The question “why am I here” started to nag me.
“As a child, all I could think of was survival. Now, with my newfound freedom came a desire to succeed. When success wasn’t enough, I started to look for significance. I wanted to give back, to make a difference, to acknowledge the blessings that were bestowed on me and possibly see if there was a reason for my being here.
“I was at a loss about what I could do, and for years I looked for some cause I could identify with. Then I met a woman who was looking for medicine to help a boy with hemophilia in Romania; he needed corrective foot surgery to walk. I barely knew anything about hemophilia, and the little I knew was mostly inaccurate. After a quick and shocking lesson on hemophilia, I began a quest to find the miracle medicine. It wasn’t easy, and the more I searched, the more I lost hope. I made hundreds of phone calls, all over the world, trying to source any kind of donation. It was a test of endurance and tenacity. I had one phone call left to make, the call to Project SHARE. They immediately shipped the factor, and the rest is history. That was more than 10 years ago.
“Since then, I know why I am here. The boy had surgery and his wish was granted: he is now walking. That’s when S.T.A.R. (Start Thinking About Romanian) Children Relief was born. S.T.A.R. is a multipurpose organization with an emphasis on healthcare and a focus on blood disorders. Through S.T.A.R.’s efforts and donated factor concentrate, many Romanian boys and adults with hemophilia have had their lives improved or spared. On World Hemophilia Day, April 17, 2004, S.T.A.R. organized the first-ever hemophilia symposium in Romania. And S.T.A.R. organizes and hosts Camp Ray of Hope, in its sixth consecutive year this past summer, the only camp for children with hemophilia in Romania.
“S.T.A.R. is also Save One Life’s partner for Romania. We have 59 children and adults with hemophilia sponsored through Save One Life. I know most of the beneficiaries personally, and have visited them at home or seen them at camp where they play with carefree enjoyment. I get to see them smile and hear them laugh. It feels awesome to be so intimately and personally involved.
“I never thought I would be involved in charity or volunteer work. I don’t have the personality. I am shy, withdrawn, introverted, not the type that would organize international conferences and fundraise for summer camps. It’s said that we, in the nonprofit world, change other people’s lives. That’s true, but in the process, our lives change too. We have a purpose, our life has meaning, we do things we thought we could never do. That’s a terrific feeling! We give a little, but we get a lot back.
“I know—Romania is close to my heart, and I have a vested interest in helping my people. But to anyone who, like me, is searching and wondering if there is something more than just the fleeting pleasures in life: if you want to make a difference or improve a life, while you improve your own, consider sponsoring a child. Look at the Save One Life website, where many with hemophilia are waiting to be sponsored. Pick a country, pick a child. Put a sparkle in those eyes that look so hauntingly and sadly at the lens. Bring a smile and a chance for a better life. It’s a small gesture that will bring priceless rewards. I know why I am here. Do you?”
Maybe the bumper sticker needs to simply say: “I know why I am here. Do you?”
Adriana Henderson is founder and president of S.T.A.R. Children Relief, a nonprofit dedicated to helping Romanian children in need. She was born in Romania and immigrated to the US, where she has lived for the past 40 years. She is a graduate of UCLA, and lives in North Carolina with her husband Tom, who often helps with her charitable work. They have two daughters. Visit www.starchildrenrelief.org
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An appropriate title to read after this road trip, but not nearly
as exciting. Written in 1978, the book explores the meaning of love through the
eyes of a psychoanalyst. Love, as he defines it, is a journey that helps
another grow spiritually. Peck delves into meanings of love and discipline,
expressions of love, and shares vignettes of how people overcame emotional
difficulties. He describes the difference between love and being “in love”—which
was well written. I read this in the 1980s and thought it was brilliant; rereading
it again, I now see it as dated, fairly academic and dry, and limited. Who can
really say what love is, when there are so many types of love? The first half of
the book is more about love and mental health and taking personal responsibility for navigating life—good stuff; the second part gets into spirituality, God,
science and Christian values. Some of his take on religion vs. science is a bit
head-scratching. I found the first half of the book more readable and useful
than the second half, which was muddled and lost focus. Two out of five stars.
