Our Journeys

Patient story

Minju Choi

Minju ChoiSince my PAH diagnosis two years ago, it’s been an incredible journey both emotionally and physically. I am a classical pianist and have played the piano since I was four years old. When I was first diagnosed, the doctor told me that I needed to cancel all my concert engagements and piano competitions in order to relieve my stress. I was so discouraged by this news. I was also told to visit PHA’s website in order to be better informed. As I was reading all the information on the website, I froze in my chair staring at the computer. You can only imagine the cold rush that was going through my blood veins. I felt the whole world shutting down on me. The website explained in clear words everything I was mysteriously experiencing for the past seven years.

I was not prepared for my career to end in five minutes at a doctor’s office. However, canceling these concerts did relieve me of stressful responsibilities. Physically, I wasn’t able to practice for hours the way I used to be able to only a few years before. Until the day I was diagnosed, I blamed it on my work ethic; I must have lost my passion. I kept asking myself, “What the heck is wrong with me?” I was depressed and didn’t know why I felt so fatigued after just 30 minutes to an hour of practicing. It was like losing my identity. I didn’t know who I was anymore.

January 2009 brought many drastic changes in my life. First, I started seeing Dr. Erika Berman Rosenzweig at the Columbia Hospital. After having lived in New York City for more than 10 years, I also moved back to my hometown, Indianapolis, to be near my family. I needed a certain kind of support system that I could only get in my hometown. Life in the city was too tough for me as a PAH patient.

Thanks to the amazing care I have received at Columbia and to the constant love and support I receive at home, I have been feeling like a new person. At the hospital, I am now known as the patient who asked if I could run my six-minute walk test. Every time I go in to do the walk test, I now have to hear, “This is a WALK test, you hear? You can’t run!” I can climb stairs now without huffing and puffing. I can walk uphill without noticing that I just did so.

Emotionally, it’s been quite a journey as well. When I was first diagnosed, I was scared. Fear ate me up for months. I was also angry. I questioned many things. As a pianist, I have learned to live on stress my whole life. Musicians thrive on stress and on pushing themselves to the extreme limits physically and emotionally. But once I accepted PAH as part of my life, I decided to put it to good use. I have discovered PAH to be, in a way, a blessing in disguise. I started having a better relationship with my mom, and I am no longer afraid of her. The disease relieved me of her constant pressure in my music career. You see, the disease changed her as well. It changed my whole family. It freed me from the impossible self-pressure and gave me a reason to be more kind and patient with myself.

PAH has also made me become more honest. Honest to myself and others. I have become more confident in expressing my thoughts and feelings verbally to others. It has brought me closer to my friends — those who take the time to remember the disease’s name and not just say “some weird heart thing.” It has also ended relationships for the better. I have met friends of friends who have come up to me to say they have been praying for me daily. Praying has been the source of peace and strength in my journey, which others may find in meditating, yoga or in praying themselves.

Most importantly, having PAH has pushed me to actually reach for my dreams and make them come true. Since moving to Indianapolis, I fulfilled a lifelong dream of creating a music program for inner-city school children. It’s called Aspire Music Program. I teach piano privately for free as part of an afterschool program at a local inner-city school. I also have talented high school pianists who volunteer to teach the students. It adds another dimension of meaning to my career as a musician.

Having PAH has forced me to ask many questions that I normally would not if I were just a regular young single woman. This disease has made me strong and brave enough to get out there and try to fulfill my dreams like creating Aspire. I have nothing to lose. I have also started performing regularly again. This season, I have performed concerts every month around the country. The passion is back. I am so hungry to share my music with others. I have noticed that experiencing this journey has added a new depth in my piano playing. This disease has given me the kind of freedom that I didn’t have before my illness. For this, I am truly grateful.

Gratefulness is what I feel these days. I am so grateful for the amazing improvements I have made physically. I see myself as a strong young woman, a sister, a daughter, a friend, a teacher and a performer. I don’t see myself as a “sick person.” Yes, I do have to take my medications every four hours. But I am a person before I am a patient. It does not mean I am not fragile or that I don’t worry about the disease. I am so grateful for having a sense of true contentment. Anything is possible when one feels great physically and emotionally.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.