Musical Medicine: Harpist Astrid Walschot-Stapp’s Journey With Lyme Disease
When Astrid Walschot-Stapp was eight years old, she had such bad knee pain that she told her mother, “It’s almost like thousands of little creatures are eating me from the inside out.” Prior to this, she had a near-death experience when she had a seizure that was so bad it caused her tongue to retract into the back of her throat. What she didn’t know then, and what she wouldn’t find out until many years later, was that she had Lyme disease. During the seizure she lost consciousness and recalls, “I remember being in this beautiful white light…there were strings and when I would touch them a tear would fall, and I always wondered about it.” In a string of serendipitous events, at the age of eight and in the midst of extremely bad joint and bone pain that were written off as growing pains, Astrid’s Kindermusik teacher insisted that she play the harp. The instructor even went so far as to make up a story about how they needed a child to practice harp lessons on just so Astrid’s mother would say yes. When Astrid began playing the harp, memories of that white light during her near-death experience came to mind. She realized that the images of the strings that she saw during her seizure were a sign of her life’s purpose to make people happy through music. Not only would she go on to do that, but Astrid would later come to discover that playing the harp was her strongest defense against Lyme disease.
It turned out that the soothing effect of playing the harp allowed Astrid to keep overcoming Lyme symptoms time and again throughout her life. In other words, playing the harp became a sort of musical medicine.
Throughout her life, Astrid always had health problems that were written off or swept under the rug. Her music, however, always kept her fighting through severe symptoms. Growing up in The Netherlands, Astrid played the harp throughout her childhood, but at the age of 18 she developed such bad knee and wrist pain that her passion became painful. At the time, she was under a lot of stress, and her doctor in Holland thought that her pain was just a side effect of personal problems. Though he didn’t understand the severity of her condition, or the fact that she had Lyme, he did connect with Astrid on a musical level, because he was a musician himself. He instructed her to bring her harp to his hospital and leave it there. That way, when she came in for appointments, he could teach her how to play again—almost like physical therapy. Astrid says, “This man helped me by removing me from the stress and teaching me a new technique with relaxation. He taught me to play so well, and I was so aware of my body that my body was able to get over the Lyme.” It turned out that the soothing effect of playing the harp allowed Astrid to keep overcoming Lyme symptoms time and again throughout her life. In other words, playing the harp became a sort of musical medicine.
After learning to de-stress through her music, Astrid spent many years without any flare-ups. She received a degree in harp performance and another degree in harp education from the Maastricht Conservatory, and then went on to study at the Royal Conservatory in Brussels and at the Royal College of Music in London.
Thereafter, she received the Prince Bernhard Fund Prize to study in the United States at Indiana University. When she was applying for the grant, one of the questions asked applicants to imagine what they would do upon returning to Holland (where there was virtually no harpist work) after studying in America and thus having the opportunity to play on big stages. Astrid’s response?: “I said I do not care on which stage I play as long as I make people happy. Even if I come back and there is no work as a harpist, I will go play in the hospital, I will play in an old folk’s home, I will play for anyone who will listen. I play to make people happy, it is not for my own fame.” That very answer secured Astrid the grant, and she fulfilled her promise of playing on various stages—large and small.
Even while playing at prestigious venues in America, including Carnegie Hall and the Kennedy Center, Astrid volunteered her time to play in much smaller spaces—hospital rooms. After her father had heart surgery in Holland, she began playing in hospitals in the D.C. area as a way of giving thanks and giving back. “I saw that when you play, the heart monitors they go back down to a normal rate and it was amazing to see,” she says. She played in the ICU, the chemotherapy unit, the prison unit—everywhere in the hospital she could, essentially. She explains, “I was playing, and I was helping people, and it felt good to do this, and they didn’t understand why I didn’t want be paid and I said, ‘No, I do it to make people happy.’” By playing the harp, she wasn’t only helping heal the patients she was performing for, but she was also healing herself. At the time she didn’t know this, but now, looking back after her Lyme diagnosis, she explains, “If our immune system goes down because of stress, Lyme can get a hold again and so can co-infections. When I play the harp, my stress level goes way down, even the vibrations help with the nerve pain, like a massage.” That is to say, her passion to help people via music inadvertently allowed her to help herself.
At Indiana University, Astrid met her husband who is a violinist. After graduating, they moved to the D.C. area where her husband got a job working in a violin repair shop and Astrid began teaching harp lessons. In D.C., she got to pursue her dreams of playing in big symphonies. “It was my dream to play in an orchestra on the caliber of the Baltimore Symphony and the National Symphony. To be in this blanket of sound is amazing. It’s just to be this little tiny part of this big whole.” In addition to playing with the Baltimore Symphony and the National Symphony, she also played with the National Philharmonic, the Washington Opera, and at Carnegie Hall, among many other large groups and venues. However, after her daughter Eliana was born with a severe heart condition, her jobs playing in big symphonies became few and far between. Still, she asserts that, “It doesn’t matter where you play. It matters if there is just one person who can be more relaxed. Sometimes people cry and you touch them.” For her, that’s what it’s all about.
Through much of her young adult life, Astrid had very few Lyme flare-ups. “I was fine when I was pregnant, I was doing amazingly well, I never felt so well in my entire life,” she declares. However, after Eliana was born, she had some complications. Astrid had to have several blood transfusions because of a retained placenta. She suspects that she may have gotten more co-infections from the transfusions, since blood banks don’t screen for Lyme disease. In addition to her own health problems, the stress of her daughter having to undergo four heart surgeries started to trigger Lyme symptoms. On top of all of the anxiety of caring for a sick child, she was subbing in the National Symphony Orchestra, playing at a church on Capitol Hill in D.C., and trying to continue to make a living to pay for the costs of her daughter’s surgeries. One night while performing, she started noticing half of her ring finger losing its strength and within a month she says she “went through her knees again.” It was at this point that her journey towards a Lyme diagnosis began.
After being diagnosed with Lyme, Astrid learned that not one, but two of her harp students also had the disease and were patients at the Jemsek Specialty Clinic.
When she visited her primary care physician, she was written off as crazy. Her PCP told her that she was just having a bad reaction to stress. When Astrid’s ANA test came back negative and she still insisted something was wrong, her PCP refused to see her again. She explains, “My husband was telling her, ‘She cannot turn over in bed, she is not a hypochondriac, something is really wrong.’” The PCP’s assistant hung up on her husband. At that point, Astrid checked herself into an emergency walk-in clinic and they did an ANA test that came back positive. She says, “So I had something to point at and say ‘Look, I’m not crazy!’” Still, the next PCP Astrid saw refused to believe she had Lyme. This led her to a third doctor who diagnosed her with Lyme but who was very costly and wouldn’t give her any medicine for her pain. She explains, “He said, ‘There’s nothing I can give you,’ he didn’t treat the co-infections, so for a year I was on three antibiotics everyday without breaks and without nerve medication, and I thought I was dying.” Feeling so sick, not being able to work, and having to care for her sick child who still needed another heart surgery—Astrid grew a bit distraught. However, she says that once she admitted to herself that she was angry, “almost peace settled upon me, and then this inner voice said everything will be alright.” Soon after, Astrid found the Jemsek Specialty Clinic.
After being diagnosed with Lyme, Astrid learned that not one, but two of her harp students also had the disease and were patients at the Jemsek Specialty Clinic. They, too, had first gone to other doctors who told them that they were crazy and wouldn’t treat them properly. When they recommended that Astrid make an appointment at the clinic, she thought it would cost more than what she could afford. To her surprise, an appointment with Dr. Jemsek cost less than an appointment with the doctor she was seeing at the time.
When Astrid started seeing Dr. Jemsek, the first thing the staff did was get her stable. She asserts that after just a month, “I started feeling like I was a human being again.” Now, the clinic is in the process of treating the co-infections. She’s undergoing treatment for Babesia now and next they will move on to treating Bartonella. After that, Astrid says she will “be on the home stretch.”
For Astrid, music is both a coping mechanism and a passion.
Though Astrid is able to get through most days fine, she starts to feel pain when night approaches. “During the day I’m fine—at 5 p.m. it’s witching hour and the nerve pain starts and it’s horrible,” she says. However, the strange thing is that she does not get nerve pain when she knows she’s playing a concert that night—a testament to how her passion for music continues to help her manage her symptoms. She attributes this relief to adrenaline, because as soon as the concert is over and she’s driving home, the pain sets in. She believes this could be due to leftover nerve damage, which can take a few years to heal. However, she professes, “I can walk again, my energy is getting much better, and I’m getting there. It’s slow, but that’s alright…I’m playing through the pain. I can play and I can be with my daughter, and that’s the main thing.” For Astrid, music is both a coping mechanism and a passion.
Before starting treatment at the Jemsek Specialty Clinic, Astrid recounts, “I had all this beautiful music in my head.” Dr. Jemsek explained that these were auditory hallucinations due to the Lyme infection in her brain. After starting treatment, they eventually stopped. However, the music in her head was so lovely that she began writing it down so that she could play it on her harp when she felt better. When she got well enough to play again, she did just that. Her friend that’s a recording engineer even let her record the music, which she now listens to sometimes, as she affirms, “For some reason, it is very comforting to listen to.” Essentially, even in a disease that is so brutal, she was able to find something so beautiful.
Astrid believes in staying positive, but that does not mean she is without her challenges—one of which is isolation. She feels that she has to hide her Lyme disease from others for fear that it will affect her professional opportunities and even personal relationships. She jokes that, “One day, I plan on just coming out!” That being said, she says that she has a wonderful husband and wonderful friends, as well as students with Lyme that she can relate to. “When you meet people who have Lyme you feel like you are family,” she explains. As many Lyme patients know, this camaraderie is so important.
Astrid is passionate about raising awareness as she gets better and better. She likes to connect to other people that are suffering and affirms, “We learn to live every second in the now and not think about the future.” She is also a strong believer that you have to fight for yourself. “You have to be your own advocate and do research and find the right doctor for you.” For her, that doctor is Dr. Jemsek.
When asked what advice she would give to newly diagnosed Lyme patients, Astrid asserted, “Keep holding on to all the good there is in the world and focus on the positive things.” When she’s in really bad pain, she likes to watch funny movies. Now and again, she struggles with being a mother with Lyme disease because she is sometimes in too much pain to play with her daughter. When that’s the case, she says, “I just snuggle with her and watch a movie. Children will learn that life is not always fun and that there is pain and that’s okay.” She also says that, for those who are newly diagnosed with Lyme, it’s best to do all the practical things too, such as detox and “take the freakin’ painkillers.” She explains her own initial reluctance to painkillers, “There was a time that I felt like I had to not take them and suffer, but then your environment suffers.” Essentially, there’s no shame in taking the necessary steps towards feeling normal again.
Ultimately, Astrid believes that she has learned a lot from having Lyme disease. It has allowed her to meet a lot of wonderful people, try new things (such as making her own shampoo and Kombucha), and witness a lot of miracles along the way. “If you are open to them, there are lots of miracles,” she says.
Astrid Walschott-Stapp and her husband teach music at The Frederick String Initiative, which they run out of their home in Frederick, Maryland. She also plays as a freelancer at concerts, funerals, weddings, recitals, and other events. You can learn more about her music at www.marylandweddingharp.com. Her daughter, Eliana, still needs one more heart surgery but is doing better.