Risks and Rewards

I love taking risks. Getting that adrenaline going; seeing how far I can push myself. There’s a great quote and I don’t know who said it: We don’t know who we are until we see what we can do. From going to graduate school on my own, to skydiving, to cooking (seriously), I love taking risks.

Today I went bungee jumping for the first time ever, in Queenstown, New Zealand, following the WFH Congress in Australia, because I’ve already done the skydiving thing many times, and then there was that gorilla in Rwanda last month…

So 439 feet over a canyon I leaped into the air, executing a perfect swan dive into nothingness, and enjoyed the air pushing against my face, roaring in my ears, the earth rushing up to greet me… then boing! I am gently pulled back from the earth and tossed upward, the way a seal might toss up a fish to swallow; down again slower, then back up again, hanging upside down. I yank a cord attached to my feet and instantly I am upright, and the guys switch on the wench that will haul me up to the platform.

I loved that first jump so much, I did another one right afterward. The guys on the platform loved that. Everyone else had left. Risk? Some, I guess. Reward? Bragging rights, and a massive, pulsating adrenaline rush that you can’t get too many places on earth.

Well, I’m not the only one in the community who loves risk. Barry Haarde  just finished on Saturday his third coast to coast ride, on a bike, racking up about one hundred miles a day. A day. A day! I did 100+ miles on a bike last September in one day and it just about killed me. Despite having hemophilia, HIV and a knee contracture, Barry is a human machine. I can’t imagine what his physicians must think of him. He must shame them; you can’t get fitter than he is, I suspect.

Barry Haarde: Legend, risk taker, reward giver!

There are lots of risks for Barry on the ride: physical problems like bleeds, injuries, illness. Logistical ones like accidents, bike problems. And psychological: what if he didn’t finish? Oh, the humiliation! But he did finish. He always finishes.

His reward? He goes down in history. He’s a celebrity. He’s a cool, righteous dude. He’s a role model for thousands of young people with hemophilia and a few older ones who have hemophilia and/or joint damage. Heck, he’s my role model. Dreams can come true. You’re never too old. Never quit. Think of all the cliches… they’re true!

And Barry posted on Facebook each day, as on previous rides, photos of those who died from contaminated blood, injected through their clotting factor. Intangible rewards: people who will never be forgotten, thanks to Barry. This included his own brother John.

And… tangible rewards for hundreds who will never know Barry, and never even know what he did. Barry raised over $45,000 for Save One Life (http://www.saveonelife.net), the nonprofit I founded to help kids with hemophilia in developing countries. For these kids, each day is a risk. They may not make it to the next without clotting factor. We’re here to help them get through childhood, because each child matters.

Barry writes on Facebook:

“Wheels for the World III” is now complete and our fundraising goal was met! We wish to thank all those who made our ride a success, who include (but are not limited to) our corporate sponsors, Baxter, Bayer, Alliance and Matrix Pharmacies, King BioMed, Colburn-Keenan, our many grass roots donors, America By Bicycle’s fabulous staff, my managers at HP for arranging the time off to complete the ride, and especially, Ken Baxter, for the countless hours spent on photo/video editing, phoning media outlets, and travelling all the way down to L.A. to document my departure. Thank you all and see you next year!!

Next year? Oh my gosh, that means he’s going to do it again! I also need to find a risky venture. Bungee jumping was a 30 second adventure while Barry’s was one month! Maybe I will ride with Barry. That would be the greatest reward.

Thank you, Barry! From the bottom of my heart, which at one point was deep in a canyon today.


Risk vs Reward

It was a perfect day in Massachusetts– for skydiving! Today I  jumped out, as they say, of a “perfectly good airplane” at 14,000 feet. On the way up, one of my friends couldn’t buckle up in the car as one of the seat belts was broken. This got me thinking about risk, our perception of risk, and reward. Most people would never go skydiving. They consider it dangerous, although your chances of dying in a car crash (from not wearing your seat belt) are much higher. Most people are shocked that I love to skydive, and not only that, that I encourage others as well.

For me, the rewards outweighed any perceived risk. Our perception of risk often determines our decisions. And things seem riskier 1) if we are not familiar personally with it–most people don’t ever skydive, 2) if it is sensational– and one skydive death makes the news, even while several car accidents will be overlooked, 3) if there is feeling of lack of control. We often “feel” more in control of our cars, and feel less likely to die in them.

This is my fourth jump.

There are about 3 million jumps in a typical year in the US, and about 30 deaths. This is about one person per 100,000 jumps. One website says “You would have to jump 17 times per year for your risk of dying in a skydiving accident to equal your risk of dying in a car accident if you drive 10,000 miles per year.” So odds are good you’ll be fine!

So what’s all this got to do with hemophilia? Some people are still very insecure about infusing factor concentrate. We are writing up a big article for the August issue of PEN about recombinant and plasma-derived factor concentrates. There are risks with any medication, and of course we had sensational deaths with hemophilia many years ago. This has made many fearful of products. But all US products are considered safe by the US FDA. These are among the most scrutinized drugs on earth, and we run a higher health risk eating at a fast food restaurant than infusing factor.

Sometimes it all has to do with perception. My perception of skydiving? The rewards far outweigh the risks. I feel the same about factor concentrate, too. Read the August issue of PEN to learn more about safety of our products, and if you ever want to shake up your world, get on the edge, have an adventure, try skydiving!

“Life is a daring adventure, or is is nothing at all.” Helen Keller

No Guarantees, No Refunds, Just Life

I went on my annual white water rafting trip to Maine this past weekend. Our outfitters are CrabApple, a family owned business in the Forks, Maine, that does a great time of giving you a thrill of a lifetime. If you haven’t tried white water rafting, make it a goal for the coming year. It’s a great family experience, as well as personal adventure.

It was a scheduled dam release, with huge 25 foot waves, and class IV rapids, and the dam spewing 8,000 cubic square feet of roiling water into the Kennebec gorge. People often gage adventure sports by their risk level. Many people are afraid to try rafting; if they listened to the safety lecture about potential risks, you might see why. Our guide Jason told us one family scheduled for the weekend had quit at the last minute, changing their minds about the risk level.

“They had a bad experience last year, and decided not to risk it again,” he said.

What was the bad experience? we asked. A broken nose from a wayward oar? A near-drowning? Vertigo (which I got last year; very bad, lasted two weeks)?

“They fell out,” he replied.

Fell out? Yes, they fell out and were caught in the cold churning water. No doubt this can be a shocker, but pretty much everyone who falls out is brought back in again, and then you have a dynamite story to tell the rest of your life. This family was brought back in by their guide, safely, though I am sure they had a quick moving swim and swallowed and choked on a bit of water.

When you sign up for rafting, you are shown a video of what the trip will be like; you are given an in depth-safety lecture. You are taught what to do should you fall out. All very humorously related by Wade, who had us in fits of laughter. Of course white water rafting is no joke. You have to pay attention and battle some high water, rushing toward you, slamming you in some cases, rapid after rapid. You work in unison, following your guides commands: “All back!” “All ahead!” And you are with about 12 other rafts in your outfitters, and then can see many more rafts from other outfitters. You are never alone.

What I didn’t quite get is what that family expected. When you go rafting on raging waters, there is always a chance you could take a spill, get knocked over, flip the raft. You are blasting through rapids, after all, and this is not a gentle sailing trip. Not to expect this is foolish and unrealistic. Of course, nobody in particular wants to get “dumptrucked,” as the guides say, but it can happen. I’ve gone five years now and we’ve never had it happen. And on this trip, Wade himself, the guide, in another raft, got flipped like a pancake right off the back of the raft and had to swim like mad to get back to it, all of it caught on video which we watched and roared at later. Of course Wade got totally razzed from the rafters and the other guides.

So when you accept the reservation to go rafting, you must include the possibility, however remote, that you could go for a wild swim. In fact, I think that’s a huge part of why people go: to see what will happen. To see how they will face the unexpected, the unknown. To see what life offers them. To see what they are made of.

We all accept risks when we decide to have children. And there are so many more risks than those in rafting. Hemophilia, an incredibly rare disorder, is one of those risks. So rare, you couldn’t ever imagine that it would happen to your child. But there you are: a child with a life long, obscure bleeding disorder. I didn’t want this, but I couldn’t cancel this trip. Couldn’t return for a refund or exchange. I had to take what I got and deal with it somehow. And we did. We had ups and downs, we got slammed around a few times. We made mistakes, didn’t follow the rules, couldn’t control the river of events, and realized we didn’t have a guide all the time. But we made it. With learning as we go, a lot of teamwork, we made it.

All of parenting is a grand risk, and all of life is a grand risk, and you must take what comes, with no guarantee on the outcome and no refunds or cancellations. A rapid is a rapid, and hemophilia is hemophilia: something that catches your breath, can make you scream, is a wild ride, often out of control, but at the end, you’ve done something amazing, you’ve mastered something others fear.

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