A few months back, I came across some interviews I did back in 2005. Finding them buried in the Area 51 of my computer archive inspired me to do some more. This time though, instead of focusing exclusively on the gaming community, I reached out to some of my Nerdcore friends and bleeding disorder community blood brothers. Both “bleeder interviews” (Vaughn Ripley and Johnny R) were very well received by you loyal readers, so I figured I better do some more!
It is with great honor that I recently had the opportunity to interview Barry Haarde. Now, it is entirely possible, you are not familiar with Barry. I know I wasn’t until two years ago, and I’m a bleeder!
Barry Haarde, at 50-years-old, has the unfortunate distinction of being a charter member of the Hemocaust generation. This was a period of time in the early 80s when factor concentrates (the medicine hemophiliacs take to prevent or stop bleeding) was tainted with the HIV virus. Because HIV was relatively unknown at the time, there wasn’t an accurate test for it. Barry, like 10,000 other bleeders, including his brother and brother-in-law, contracted HIV.
One thing about living during the Hemocaust I haven’t really talked about is the discrimination bleeders suffered. The news was rife with stories about HIV & AIDS being the “gay disease” because homosexual men were the first to test positive. There was also Ryan White, a 13-year-old hemophiliac living in Kokomo, Indiana, who contracted HIV from contaminated factor in the news, because parents and teachers didn’t want him attending their school anymore. This lead to a lot of bleeders being called things like, “Hemo-Fag,” or, “AIDS Boy,” even being bullied just to see if they’d bleed to death from a bruise (these specifically happened to me, but I have heard similar stories from other bleeders). Even though today more information is known about HIV and AIDS, there is still a stigma attached to testing HIV positive. This leads me to my interview.
In 2012, Barry Haarde left Ashland, Oregon, and rode 3,667 miles, finally coming to a stop in Portsmouth, New Hampshire. Travel time, 50 days! With that ride, Barry had become the first “3H-er” (Happy, Hemophiliac, HIV+) to ride a bike across the United States. His motivation: to fight the stigma associated with HIV, raise money for Save One Life and to show why bleeders are the #BAMF-ers of the world (ok, ok, Barry didn’t say that last part, I did)!
In 2013 and 2014 Barry rode from coast-to-coast two more times. That’s over 10,000 miles of cycling, but three trips across the USA wasn’t enough for Barry. On May 30, 2015, Barry left San Francisco, California, to start his longest ride: a 4,000 mile trek across 13 states. His goal was to raise $40,000 by the time he reached Portsmouth, New Hampshire, on July 21. I am pleased to tell you, through generous donations from across the world, Barry surpassed his goal by almost $500!!
Now that I have rambled on-and-on, fanboy style, let’s get to why you really came here today; to meet Barry Haarde!
Jay Bishop: Everybody in the bleeding disorder community knows who Barry Haarde is, but for my readers who are “clotters,” who are you?
Barry Haarde: I am one of the “Ten Thousand,” a term known in the bleeding disorders universe that refers to the nearly ten thousand hemophiliacs who contracted HIV in the early 1980s from the blood products used to treat hemorrhaging in the joints and tissues. We also contracted hepatitis C from plasma and other blood derivatives, which can cause liver disease and even death from liver failure. I lost a brother and brother-in-law, both of whom had hemophilia, to hepatitis and AIDS respectively.
If you don’t mind answering, when did you contract HIV or learn you were HIV positive?
There was no definitive test for HIV until the end of 1984 and most of the nation’s hemophiliacs were brought in to be tested because we were known to be at high risk for any pathogen that entered the blood supply. I received a positive test result in late ’85 and very little was known at that time about what exactly it meant to be HIV+, but we knew it wasn’t anything good.
Tell me about your cycling. How did you get started riding across America and why do you do it?
I originally got into the sport after having my knee replaced in ’99. For the first time, I was able to be more active and athletic. One thing led to another, and over a period of time I reached the point where I could tackle rides well in excess of 100 miles. I had to take a break from riding for about four years to treat hepatitis C, but afterward, at the end of 2010, I began developing a concept for doing a transcontinental ride to benefit Save One Life, a charity which provides financial assistance to people with hemophilia in developing nations who lack access to medication due to its high cost. As far as anyone knows, no one with hemophilia had ever ridden a bicycle across America, so it seemed like kind of a ground breaking undertaking and well worth the time and effort given the amount of funds we were able to raise.
Your most recent ride of 4,000 miles, ended in July. What goes through your mind at the end of the ride versus at the beginning? How many miles have you ridden so far?
In the beginning, the riders are thinking mostly about getting over the Rockies. There are many passes to get over and we ascended to over 11,000 feet on the most recent tour. Towards the end of the ride, most people are just thinking about getting it finished and not crashing or making any dumb mistakes that would put finishing at risk. Ironically, I got run off the road by a car just a few days before the end of this year’s tour, but I was able to get back on the bike and finish, though I was a bit beat up for quite some time afterwards. Since I began keeping track in 2002, I’ve ridden about 80,000 miles and have averaged 10,000 miles per year since 2011.
Other than cycling, what’s the biggest risk you’ve ever taken?
Back in the 80’s/90’s I made a living as a professional trombone player, which meant I spent several years touring the country and the world. Given my extensive medical problems that was probably a bit nuts, especially since at that time it was not particularly wise to talk about one’s HIV status, or even to mention having hemophilia. Although it was pretty well known back then that many hemophiliacs had contracted HIV and many had already died from AIDS. I was really out there on my own, but I just did it anyway because I figured I really didn’t have much to lose.
My brother, Jeremy, added Vaughn Ripley’s cape to your photo for the cover of a recent issue of HopeFactor (which by the way, we still have not received our two autographed copies from you). Is there a huge rivalry between you and Vaughn?Yes, we have a rather viscous competitive thing going, but of course it’s all in good fun. We even had a competition to see who could round up the most Facebook friends in the hemophilia community which had some rather unanticipated and comical results. We both do the HFA “Gears for Good” bike ride on the east coast and it always turns into something of a hammer-fest between the two of us along with Paul Brayshaw who rounds out the bleeding three-some. I keep trying to get Vaughn to tag along with me on one of these cross-country rides, but the man just seems to lack the guts, so I guess that’ll be left to me to do.
Between the two of you, who can ride further? Faster?I’ll let you ask Vaughn that question, but as you’ve noticed, my four-times-across-the-county record remains unchallenged, so I’ll just let that speak for itself!! I must say, however, that Vaughn’s done some pretty major mountain climbing efforts, something I’ve never gotten into at all, so he’d drop me like a rock if I ever tried to chase him up to some mountain summit.
If you had a chance for a “do-over” in life, would you still have hemophilia?That’s a great question, and you know, I’m sure very few people (if any) would be willing to trade places with me and live my particular life, but I honestly think that this far into it, I wouldn’t trade it away for a so-called “normal life”. I’ve met some of the most heroic and amazing people and many of the incredible experiences I’ve had would never have happened were it not for hemophilia and HIV. The worst of it was losing my brother and brother-in-law and seeing a lot of fellow “blood brothers” suffer and ultimately lose their lives to the same things that I’ve somehow been able to carry on with, so we’ve all paid a terrible price to get this far. Nevertheless, I see perfectly healthy people all around me who’ve destroyed themselves with drugs or alcohol or whatever, so I’ve always been a firm believer in the concept that it’s not what happens to you in this life that determines one’s level of contentment, but rather how we choose to respond to it. A good poker player can take a bad set of cards and still win big with it, so life is all in what we choose to make of it.
Which three people (famous or otherwise) would you most like to invite to a dinner party? (For the record, I have asked my cousin Vito to steal Vaughn’s factor supply since he didn’t invite me. You’ve been warned!)Well, YOU, of course, but otherwise I’d start with Ryan White as well as his mother, Jeanne who I’ve had the privilege of getting to know in the last few years. They showed us all by example, how to live with both hemophilia and HIV/AIDS and still come up smiling at the end. Ryan died from AIDS over 25 years ago, but his name still comes up often in conversation among the hemophilia and HIV communities. Of course, I’d invite my mother who was a rock of strength and perseverance from long before HIV entered our lives. She raised two sons in the era before factor concentrates, which should earn anyone a Nobel Prize in courage all by itself.
You’re a severe hemophiliac, do you infuse on-demand or prophylaxis (prophy), IV or a port?
I tend to prophy only when engaging in riskier activities, such as riding across America. I have no target joints, which is very unusual for a severe bleeder my age, so I can generally get by on an on-demand schedule unless I know I’m going to be very active for a period of time. I absolutely recommend prophy to the kids and young adults, however. Why develop the potentially crippling joint problems if you don’t have to? I grew up in the era before ports, so have never used one.
What advice do you have for our little blood brothers and sisters?The advice I find myself giving most often is quite simply to not let hemophilia define their lives or limit their activities. The four rides across America were all about sending that message and I think it speaks for itself. We now have a severe bleeder in the ranks of pro-cycling- a guy by the name of Alex Dowsett, from England, and I think that the fact that one of our own has made it into the ranks of professional sport speaks volumes about what is possible today.
Other than cycling, how do you spend your free time?Well, that’s an easy one- “what free time??!!” I still work full time and have been doing a fair amount of travelling around and speaking at hemophilia events around the country, so needless to say, that all keeps me rather engaged most of the time.
Thank you again Barry for the great interview! For the record, I’m unsure who’s the bigger hemo-bamf, you or Vaughn. I’m thinking 2016’s ride needs to be a coast-to-cost race between you and Vaughn. Winner takes all, including the cape!
To learn more about Barry and his Wheels for the World campaign, and about sponsoring a child with hemophilia in a developing country, visit http://www.SaveOneLife.net.
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