I am 58 years old by the time I am writing this story. Physical fitness and holistic wellbeing have always been a priority in my life. I was part of the Indonesian national swim team in the '70s and remained as an Indonesian Master Swimmers before I moved to Sydney, Australia in 2017 and joined the Sydney Master Swimmers club there. I can describe myself as strong, healthy and fit I have always been but it changed in just a second when I was diagnosed with TB meningitis (tuberculous meningitis).
It started in mid-2018 when I had severe headaches, dizziness, stiff neck and back also sweating badly when I got into bed. This happened on and off until the end of the year. I felt it was just exhaustion and pressure after moving to another country. I took paracetamol when the headache came and it went away the next day. One time when I was in Jakarta, Indonesia, unbearable headaches and sweating got me again. I called my doctor and was asked to do some tests. The result was paratyphoid. I was given some medicines and was told to go on bed rest for a week. I was feeling well when flying back to Sydney. But the headache and sweating persistently came and went after a few days. One day when I was at a friend’s house around January 2019, I had all the symptoms back with my stomach hurting and I couldn’t pee at all. My friend immediately called the ambulance and was taken to a district hospital – Ryde Hospital. I fell into a coma and I was told I was unconscious for ten days but I never asked in detail whether I was in a coma or was just being unresponsive. I then was transferred to a principal tertiary referral hospital - Royal North Shore Hospital. I was diagnosed with TB meningitis.
I remember seeing myself at the hospital with doctors and nurses around me. The doctors at the time were quite questioning about this disease I had because TB meningitis was not common in Australia. I possibly picked up the bacteria during my job assignments in remote areas in Indonesia a few years back which laid passive for quite some time in my body. I would never know about this because I never had any symptoms at all. I spent the first three months only lying in bed and was given a bunch of treatments like blood tests every day, also CAT (computed axial tomography) and MRI (magnetic resonance imaging) scans and a regime of various drugs to take every day. Twice lumbar puncture procedures were performed during my six months stayed in this hospital. The procedure referred to as a spinal tap, is a procedure that is required for obtaining and sampling cerebrospinal fluid from the spinal cord. It was very painful and I wasn't allowed to move for hours afterward. I started doing physiotherapy daily three months later and began with training my motor and basic mobilizations like sitting, getting dressed and even how to get in/out of the wheelchair from the bed. The team doctors were the best, they made weekly plan meetings for my progress with me attending. Within six months, I was transferred to another hospital - Prince of Wales Hospital (POWH) for further rehabilitation. In here, I continuously underwent my mobilization therapy for another four months. In the following months, I learned to use a walker and to be able to do most basic things like bathing, and dressing myself. I was also provided sessions with a psychologist to prepare my emotional health after being discharged from the hospital and back to everyday life.
I was finally discharged from POWH on 16th October 2019 and decided to go back directly to Indonesia since I hadn’t seen my father in his last days before he passed away during my hospitalization. I flew back to my family although in a wheelchair with a catheter attached to me and still had a moon face because of steroid medication for TB. The time has been challenging, painful, and often scary. I’ve lost ten months of a year of my life. I continued back and forth to a referral hospital in Jakarta to keep track of my development and carried on taking Rifampicin and Isoniazid (TB medicines) for another six months as an outpatient. I am back in Jakarta, Indonesia for good. Four years later, as I am writing this story, I still have limitations such as walking with a cane, balancing, short-term memory loss, anxiety, tingling in both legs and numbness from the waist down to both legs as well. I then consistently keep up my physiotherapy, having acupuncture therapy and also do aqua aerobics once a week with a therapist coming to my home. I am back swimming even with limited swim strokes but I am grateful to be back to what I love. I know I still face a long road of rehabilitation, but I keep believing God is always with me and that one day at a time will take me where I need to be, whatever that is.
TB meningitis destroyed part of my life but I am very grateful because there are people out there who contract this devastating disease and are not always as lucky as I was. I am lucky to be alive for that I also have to thank my family, friends and team doctors, nurses, therapists all of whom worked so hard to make me progress. Sharing my story has been an emotional process for me, but has also brought me a sense of accomplishment. I see my journey as a masterpiece in progress, a testament to my strength, self-discipline, and the power of the human spirit.
Sylvia Djawahir
![]()