Spending almost ten years being a tuberculosis patient made March 24 more meaningful to me. It is World TB Day. For cured patients like me, it is a good time to look back and reflect on how tuberculosis has transformed my life.
Twelve years ago, I was first diagnosed to have tuberculosis. This coming May 15, I will be at my 3rd year of being TB Free. In between these periods was a long and agonizing story of how my tuberculosis turned into an extensively drug-resistant case that relapsed but ultimately ended into a victorious defeat of tuberculosis. Yet, though I survived XDR-TB, the reality is that it has made one of my dreams unfulfilled and has left me incapable now of doing some of the things I used to enjoy. Reality has taught me to let go of these and enjoy playing the cards my hands are dealt with.
When I was in college, I dreamt of becoming an auditor for a big auditing firm here in the Philippines. That’s why I studied hard. Then I got TB in 2001 during my last semester in college. I continued my studies while receiving TB treatment. I passed the Certified Public Accountant’s board examination on October 2002 and was jobless until October 2007. Those five years of my life was idle because of tuberculosis. I learned to let go of my dream to become an auditor, first, because I felt that it was too late to start a career as an auditor five years after passing the CPA board exam, second, the job as an auditor requires long hours of work which I felt could compromise my health more and third, I was not sure if they would hire a TB patient still undergoing treatment (thought no longer infectious). I downgraded my dream and instead asked the Lord to restore my health so I can practice my profession in some other ways. My prayers was answered when I got my first job as finance assistant at Tropical Disease Foundation which was the same institution that treated my XDR-TB.
With the long years of TB treatment, I developed an irreversible hearing loss. They said you can’t have the best of both worlds and that there should always be a trade-off. Because I wanted to live, I traded off my hearing. There’s no other option for survival and I had to adjust to what the present TB treatment could offer.
Doctors said that I already have profound hearing loss in both ears. Though audiometry test said I was already a candidate user for hearing aid, the doctor said that if my work does not require me to talk a lot to other people, I can go without a hearing aid. Now, I struggle talking to people through phone or skype and at times had to ask them to repeat what they just said or I confirm from them if what I heard was right. Whenever I talk to other people, they have to speak louder than the usual and we have to be facing each other so I can understand them better. I lip read so I can understand them easier. But lip reading is hard if the person or things I am listening is not in our local language. And that was one of the difficulties I have to deal whenever I travel alone for advocacy activities outside the country and I felt it made me less of an effective TB advocate.
Now I prefer watching downloaded English movies with subtitles at home rather than watching it in theaters. I used to love listening to music and could easily memorize the lyrics of the song just by listening to it, now it’s impossible. I do not use earphones as it makes my ears hurt. I could not hear anymore the chirping of birds, meowing of cats, and other little sounds in the surrounding. Also, I could no longer tolerate very loud sounds so whenever I ride the train going to work or watching movies in theaters, my earplugs is my best friend. To be honest, there are times that I am disappointed with myself.
Now I am happily married and is working as an accountant in an international NGO which is also involve in tuberculosis project in the country. I am planning to go back to school to finish a master degree and of course to have children of my own.
I always believed that there is always a reason for everything that happens under heaven. Maybe what happened to me is truly in the master plan of our Creator but I also want to believe that all these things happened so that I could share a story where humanity could learn something from it and those people and institutions that could make a difference in changing the lives of people affected by tuberculosis may continuously be motivated to work for the betterment of TB diagnosis, care, and treatment.
Now, my dream is that one day, unlike me, TB patients will no longer need to endure late and incorrect diagnosis, long treatment period, bear with toxic anti-TB drugs, experience stigmatization and suffer from TB treatment aftermath. Access to fast and accurate diagnostic tests, effective less toxic anti-TB drugs and proper health care are needed to keep up with the fast changing face of tuberculosis.
With the possibility of totally drug-resistant TB, I hope that this dream will not be prevented once again, in any way, by tuberculosis itself.