On a late summer day in a small Pennsylvania town on the banks of the Susquehanna River, a young boy makes his way out of his school to the playground. The white sunlight bounces off the floors and humid air undulates with the noise of children yelling to each other as they climb and run. As the boy steps into the flat, warm light of the playground, he is keenly aware of his surroundings. Potential bullies are a constant, subliminal threat swimming under the current of his thoughts, but more obviously he must avoid flying kickballs and reckless children who, at any moment, might collide with him, sending him to the pavement and subsequently to the emergency room. Trying not to attract attention despite the conspicuous helmet covering his wavy, brown hair, he hurries to a bench with his book.
Many years later, this boy-turned-adult slinks into an elevator and winces as someone else enters after him, someone he does not know. As the doors close, he tries to fade into the corner and out of their notice despite being nearly six feet tall. The elevator ascends and he becomes aware that he is holding his breath—that he has always held his breath in the elevator. This poorly lit metal box provides no escape as it climbs, and every stranger is a potential threat. It is safer not to breathe on them. Doors open and as he exits, the man pulls his sleeves down to cover the needle tracks on his hands.
No, he’s not a heroin addict but, rather, a hemophiliac.
Blood Disorders
“My blood would taint your drink; it does not flow pure and noble like yours; stiff and cold, it is sluggish within me; it will not redden my cheeks. Therefore, I abstain from hot-blooded bonds.”
—Hagen in Wagner’s Götterdämmerung
When I received an e-mail that an accomplished opera singer wanted to publicly disclose his hemophilia, I knew very little about the condition. I believed that the disorder involved problems forming blood clots and people with it could die if their skin were cut. I knew nothing of causes or treatments. Some Internet investigation revealed that those with this genetic disorder are affected in ways more grave than I had imagined (see sidebar), but that scientific advances had led to revolutionary treatments.
When I found myself sitting across the table from this opera singer in Virgil’s Cafe in Bellevue, Kentucky, my Internet research turned from facts on the page to the reality of someone living with hemophilia. Over fried green tomatoes and chicken and dumplings, bass David Salsbery Fry tells me: “Disabilities don’t create obstacles to overcome so much as they become an essential aspect of a person’s being.” For Fry, his disability has shaped every facet of his life and his singing career, including his decision to conceal the disorder for the past 20 years—until now.
Courage
“Courage is not the absence of fear, but rather the judgment that something else is more important than one’s fear. The timid presume it is lack of fear that allows the brave to act when the timid do not. But to take action when one is not afraid is easy. To refrain when afraid is also easy. To take action regardless of fear is brave.” —Ambrose Redmoon
Fry’s family discovered his hemophilia when he was just three months old. This was very fortunate, because Fry received early treatment that has improved his quality of life ever since. He was initially treated with cryoprecipitate rather than the factor concentrates derived from pooled human plasma that were already in widespread use. This decision, while obligating him to visit the hospital for each and every injury that required intervention, significantly reduced his exposure to blood-borne pathogens and is likely responsible for his escaping the widespread HIV/AIDS epidemic that decimated the hemophilia community in the 1980s. He was mistakenly given one vial of factor concentrate, however, during an emergency room visit in 1978 that infected him with hepatitis B and may have co-infected him with hepatitis C.
While facing all of these challenges, Fry decided to pursue a career in medicine. “Since I wasn’t able to infuse at home until I turned 10, it meant a visit to either my pediatric hematologist or the emergency room if his office was closed,” he explains. “I spent a lot of time in the company of physicians, and they were rescuing me from my pain and immobility. Those are perfect conditions for hero worship.
“I really wanted to go to medical school as a kid, and that dream persisted through the start of college,” he continues. “I got into Johns Hopkins to study biology. I also began to get my treatment there, which was so exciting for me to meet the hematologists on faculty. When I told them about myself and what I was there to do, they shot down every one of my dreams in sequence, the very first time I met them. One of the fields I was interested in was hematology, but they said they wouldn’t recommend that as a specialization because I would be too close to the subject. They suspected I would have trouble remaining objective.”
Fry then told them about another aspiration. “Since I was already singing, my other interest was voice medicine otolaryngology,” he says. “Their immediate response was that I shouldn’t do that either because otolaryngology is a surgical profession, requiring you to work in small cavities where you cannot see your own hands as you work. Being hepatitis C positive, should I happen to cut myself, I might infect one of my patients.”
With dream number two shot down, Fry then mentioned his interest in singing. “I was also studying voice at Peabody at the time, and when I told the doctors that I was also a voice student, they said, ‘Aren’t you worried about microhemorrhages in the vocal folds?’” Fry recounts. “I honestly hadn’t given it any thought. But now, thanks to them, I was worrying about it plenty!”
Telling Fry he shouldn’t do something was ironically just what he needed to hear. “It was a disheartening meeting that threw me into a crisis as to my professional life,” he recalls, “but it also began to shatter the myth of the physician as ‘hero-god.’ In the end, it may have been helpful for them to be as negative as they were since this led me toward opera as a profession. It also motivated me to say to myself, ‘I’ll show them!’”
Fry recently took one of the biggest steps toward being forthright about his condition: revealing his hemophilia to his employers. In a letter to the general manager of the Metropolitan Opera, Peter Gelb, Fry explains the advances that have allowed him to pursue his dreams as a singer. “When the Metropolitan Opera moved to Lincoln Center [in 1966], a career in opera would have been all but impossible for someone like me,” he writes. “The hemophilia community as a whole was counseled to accept the physical limitations the disorder creates and choose a sedentary profession.
“Fortunately, a lot has changed since then. For over 30 years, I have had ready access to a medication that replaces the protein I naturally lack, allowing my body to heal in exactly the same way it would if I were not afflicted. It is much the same as a type 2 diabetic taking insulin to compensate for insufficient natural insulin production or a thyroid cancer survivor taking synthetic thyroid hormone to compensate for the loss of their thyroid gland. I take this medication regularly so that whether in rehearsal, performance, or just walking down the street, my body is as capable of healing from an injury as any normal person’s.
“This is not to say that my life is entirely normal. The method of administration of my medication is intravenous, which is a bit dramatic—long-term use has resulted in some prominent needle tracks on my hands. The injuries I received as a child in the years before the current class of medication was available to me have resulted in some joint stiffness and a bit of arthritis. I also have to contend with the psychological impact a disorder of this nature can have: for example, no matter how well managed my condition is, it is difficult not to think of myself as somehow fragile or incomplete.
“None of this is of any consequence,” the letter concludes. “For all intents and purposes, I am not hindered by my hemophilia, with the exception of the ignorance, misunderstandings, fear, and bigotry I encountered in the years before I chose to conceal my condition.”
“I’m Drowning!”
Experiences early in Fry’s youth prompted his interest in performing. “My love of singing started with a love of theatre,” Fry says. “The first solo line I ever had was in some elementary school Christmas show for kids where there was no snow but, instead, torrential downpours of rain. This was, of course, ruining Christmas. The only thing I had to do was say, ‘I’m drowning! I’m drowning!’ and when the time came to do this with an audience, I started yelling the line and making gurgling noises. It was my moment! Little things like that can hook you.”
This early interest in the stage proved helpful on many levels. “I continued to sing in some of these school productions, and it made it the dominant hobby of my childhood,” Fry says. “This came in handy, though. From preschool through fourth grade, I wore a helmet on the playground, even though I would usually sit on a bench and read a book. In fifth grade, I decided that was enough and I could protect myself. I was not wearing this helmet anymore! Early that fall, recess was almost over and I was walking back in when a stray kickball came out of nowhere and plunked me on the head. I wasn’t concussed, but I knew from everything I had been taught by my physicians that when I had a head trauma, I needed to get to the hospital as quickly as possible.
“I explained this to the school nurse immediately and she had no interest in calling my parents and no interest in getting me to the hospital. She was trying to explain to me that a hospital visit was only necessary if I sustained a concussion and was exhibiting certain symptoms. I asked her what these symptoms might be. She said, ‘Well, you might be confused about where you are, slurring your speech . . . ’—the short list. After she sent me back into the nurse’s room and left me alone for a few minutes, I started to ‘exhibit’ these symptoms in a feat of my theatrical skill, expressly to convince this nurse that she ought to call my parents. So, my acting skills as a child helped me get the care that I needed faster that day.”
Besides a penchant for drama, Fry also sang in the choir, played in the band, and sang in musical theatre shows during high school. When he saw his first opera, it seemed that everything he loved about music had been synthesized with everything he loved about drama. “It wasn’t until my sophomore year of college that I felt like I might be able to make a living of it,” Fry says. “That had partly to do with my frustration at being discouraged from going to medical school for the specialties that interested me and partly to do with singing the title role in Sweeney Todd at Johns Hopkins as a 19-year-old.”
When he thinks back on those early university experiences, Fry describes his young college self as incredibly naïve. “My first audition for Peabody Opera was at 8 o’clock and I had never heard of anything high school or college happening at 8 p.m., so I assumed they meant 8 a.m.,” he says. “So, I showed up to my first opera audition 12 hours early. I did not know that I ought to have an opera aria and I had never learned one. I also didn’t know that one is supposed to dress up for these things, so I showed up for the audition in a t-shirt and shorts. I had to start from there. I learned a lot of things the hard way.”
Living with a Mask
“Would that I lived in my own world always, in that depravity to which I was born. There I found peace of a sort.”
—John Claggart in Britten’s Billy Budd
Throughout his childhood, Fry was an advocate for hemophilia and freely discussed his condition with those close to him. But early in his singing career, biases began to affect his opportunities. One such instance happened when he was singing his first opera role in Candide.
“At one point early in the staging, the director asked me to hoist someone on my shoulders and carry them around,” Fry recalls. “As a plucky 19-year-old, I had no problem with that. One of the other members of the cast who knew me and with whom I had been open about my condition, yelled out, ‘But David, what about your health problems!’ The room fell silent and I felt hurt and betrayed by this person thinking she should impose a limitation upon me instead of me making that decision. I was quickly relieved of the responsibility.”
That experience convinced Fry that he should not be so open. “My solution was never to tell anyone again about my hemophilia,” he says. “I would rather have the assumption be that I am capable unless I say otherwise, instead of directors assuming that I am fragile and shouldn’t be asked to do anything physical.”
And until now, Fry has told almost no one apart from his family and physicians about his hemophilia. Drastically improved medication, even in just the past year, has made this concealment much easier. Fry’s hepatitis C has been cured because of new drugs, and his hemophilia treatment today is an entirely synthetic product that is manufactured instead of taken from blood donors. It is also a designer protein that has been fused with another molecule so that it persists in the bloodstream longer than natural human factor VIII would.
Nonetheless, the physical and emotional challenges of concealing persist. “When I was an apprentice at the Santa Fe Opera, the prophylactic dose was an infusion every other day, but the medication did not persist in the bloodstream very long,” Fry says. “When I was in the height of the season with rehearsals for two different shows during the day, a dinner break, and then a performance at night, I was infusing every day. The only way I could pull that off was during each day’s dinner break. I would drive back to my apartment, get out all of my gear, infuse intravenously, and then eat whatever there was still time to eat before I had to be in the chair for makeup.”
Because of Fry’s height and strapping appearance, stage directors often give him the more physically demanding jobs. “It was on the stage of the Santa Fe Opera that I had to run full tilt as a burglar trying to escape from soldiers at the beginning of Carmen,” he says. “I would get stopped and beat up on stage by a bunch of choristers playing soldiers. Some of them were a little overenthusiastic and one time I got punched in the jaw so hard that I felt my teeth slam together.
“I also did a scene as the Commendatore in Don Giovanni. I love doing that role, but you never have to trust your cast members more than when you’re a corpse on stage. There’s nothing you can do to dodge or protect yourself. You are at the mercy of everyone else. Part of the staging for this scene involved a fountain, and the floor was a little bit wet. Our very exuberant Leporello slipped in the water, couldn’t stop his momentum, and kicked me in the jaw so hard that I spun like a top.
“In those circumstances, I have been able to hold it together because, knowing the demands of the profession, I have the responsibility to protect myself and still do the job,” he says. “I have never missed a rehearsal or a performance. One of the reasons for that is that I know how to keep myself healthy.
“The other thing to keep in mind is that for the duration of time that I am onstage, I am functionally normal. I have the same ability to heal from injury as anyone else. The treatment of hemophilia has been a success story and that’s one of the reasons that I’m choosing to come forward now.”
Challenges Lead to Insight
“I’m a lonely man, Susannah, an’ ever now an’ then it seems I gotta have somebody . . . ’cause it’s a lonesome work I do.” —Olin Blitch in Floyd’s Susannah
When Fry talks about his secret life and the struggles of his illness, it’s quickly apparent that these challenges have brought him a unique perspective on the characters that he sings. His answers reveal how our challenges can easily become our strengths.
“I don’t want opera companies to hire me in spite of my hemophilia,” he says. “I want them to hire me because of it and the perspective that it gives me, the unique take that I am likely to have on characters as a consequence. I will confess that the life that I have led takes me to fairly dark places. For that reason, I find affable, everyman characters to be the greatest challenges and villains to be the most natural. Blitch in Susannah is broken in a very different way than me—but he is broken, and I love playing him.
“I have found things to relate to in all the villains that I have played. It doesn’t mean that I wish to emulate them in real life or that I have the same homicidal tendencies lurking within me, but my perspective allows me a different inroad to their character.
“Stephen Wadsworth gave a masterclass at Juilliard while I was there and he said, ‘Opera singers are damaged goods. Why else would anyone choose a profession that involves getting up in front of a room full of strangers and screaming “Ah!” at them?’ Some of the best performers who have graced the operatic stage have faced incredible challenges.”
Advocacy
Twenty years ago, doctors told Fry he might endanger himself should he choose to pursue a singing career. Now 20 years later, Fry wants others to find hope and inspiration in what he has accomplished. “I was told in no uncertain terms that my singing career was something I shouldn’t attempt,” he says. “If you don’t have an example of someone who has succeeded in the position you want, you don’t know that it can be done. You are told to find a sedentary profession and protect yourself.”
Being open about his disability is how he can pave the way—for both singers and opera companies. “By making the decision to disclose, no child with hemophilia will have to ask if it’s possible for a hemophiliac to be an opera singer or a stage actor, because the answer will be ‘yes.’ They can point to me and say, ‘He’s doing it.’ Likewise, if an administration is on the fence about whether to cast someone with my condition or one that is similar, every success that I have will help to put that concern to rest a little bit more. That’s a very strong motivation.”
Although Fry looks back with some regret, he also looks forward to the good that will come from talking openly now about his disorder. “In the end, concealing my hemophilia was both misguided and selfish,” he concludes. “I regret my decision when I was 19—and now that I’ve made a different choice, I’m excited to see how things will progress as I live in a more open and honest way.”
Sidebar
What Is Hemophilia?
Fast facts from the National Hemophilia Foundation (Hemophilia.org).
Hemophilia is a genetic bleeding disorder that prevents the blood from clotting normally. The primary symptom is uncontrolled, often spontaneous bleeding in different areas of the body. The amount of bleeding depends on the severity of hemophilia. Internal bleeding, which commonly occurs in the spaces around joints, frequently results in pain and swelling. If left untreated, it can cause permanent damage.
• Hemophilia results from a missing or deficient protein needed for blood clotting. The two main forms are hemophilia A (factor VIII deficiency) and hemophilia B (factor IX deficiency).
• Hemophilia A occurs in 1 in 5,000 live male births. Hemophilia A is about four times as common as hemophilia B. The number of people with hemophilia in the United States is estimated to be about 20,000 individuals.
• Both hemophilia A and B are X-linked recessive chromosomal disorders, which means that hemophilia occurs much more frequently in men than in women. There are, however, other rarer bleeding disorders that impact men and women equally.
• The worldwide incidence of hemophilia is not well known, but is estimated at more than 400,000 people. Approximately 75 percent of people with hemophilia around the world still receive inadequate treatment or have no access to treatment.
• There is currently no cure for hemophilia. There are very effective treatments available in the U.S., but they may require lifelong infusion of expensive drugs that are manufactured from human plasma or through recombinant biotechnology.
• Nearly 90 percent of Americans with severe hemophilia became infected with AIDS in the 1980s when blood and plasma donations in the U.S. were not properly screened for HIV.
• Improvements in donor screening and current viral inactivation measures in the commercial manufacturing process have made clotting factor products very safe. CDC’s blood safety surveillance system, in place since 1998, has found no reported cases of HIV or hepatitis infections associated with clotting factor products among hemophilia patients.
