As a young child I came to know that my body was not like the bodies of those around me. My awareness, even in those very early years, would cause me to fully realize that this body I had been born into made it very difficult, in fact made it impossible, for me to move like normal people. I was to brutally learn that I was not a ‘normal’ child.
It was completely left to my Mother and Father to support me and their total devotion and commitment was and continues to be unconditional. From my earliest memory I recall them encouraging me to be strong and I would often hear them urging my able bodied sister and brother to also care for me. Having only one child with Osteogenesis Imperfecta (OI) would be difficult and stressful enough for any family, but my parents were faced with the reality of caring for three of us. I have two brothers, Wayan Piadnya and Nyoman Budiarta, who were also born with the same condition.
My very first memory of bone breakage was around two or three years of age. The emotional memory was incredibly painful but being confined to one room for six months while physically recovering was unbearable. Pain was my constant companion and I could already feel, although I didn’t understand the full extent of problems within my body, that I wasn’t ‘normal’. In those very early years my brothers and sister were my only contact for play and socialization.
As I grew and developed, my understanding and awareness of the full impact of my condition became painfully more apparent. By eight years of age, it was unavoidably obvious that throughout the rest of my life OI would create a large degree of separation. I had already, albeit reluctantly, decided to accept my body and to understand that there would be severe limitations, yet I was not sad about my reality. But I was deeply saddened by the response of others.
Fear and ignorance of my condition was obviously and understandably inescapable. Knowledge of Osteogenesis Imperfecta at that time was zero and parents of normal children were terrified that my abnormality could infect their children. But children are slower to see or be affected by difference and I had many opportunities to meet and play, although they would tell me that their parents constantly warned that they could become like me. These realizations would continue to bring me great sadness and I was to experience and suffer emotions associated with grief and loneliness.
In 1989 a local journalist, after learning about our situation, came to visit our family. A short documentary film showing our activities and highlighting our situation was produced and shown on local television. Shortly after that viewing many Balinese people came to our home. Representatives from the Bali Government also visited and a newspaper that had featured our story began to gather monetary donations. Shortly afterward, employees from the newspaper accompanied by those involved in raising donations visited my family. They explained to my parents that enough donations had been received to enable one of their children to have an operation. That enough money had been raised to cure the illness, sickness, disease, condition. They explained that the surgery may allow one of their children to be normal, to be able to walk.
My parents decided to fully explain the proposal to my brothers and me and to leave the decision to us. My brothers were understandably frightened and very reluctant about the prospect of major surgery and eventually they both rejected the offer. Even though I fully believed that I had accepted my condition, I began to imagine being able to walk, being able to help my parents, being able bodied, being normal. Even though the thought of surgery certainly also frightened me the temptation for my young self was just too much. The reward of strong bones, straight limbs and the reality of normality outweighed my fear. I agreed to undergo the operation.
In 1990 I was admitted to a small non-government hospital for a short period of observation. It was then decided that the best chance of success would be to transfer me to Sanglah Hospital, the largest public hospital on Bali, located in the capital Denpasar. I spent six months in Sanglah where an attempt to investigate and diagnose my condition began. While the doctors and specialists searched ‘everywhere’ hoping to find the reason(s) for my ‘situation’ I actually had fun while awaiting their findings. There were many children in the hospital, so I had many opportunities to play and get to know them and their families. I believe that because we were all ‘sick’ it took away any difference and gave us a common bond, a togetherness that allowed us to all be on the same level. My family would come to visit and stay overnight with me as much as they could, but when they couldn’t be there it wasn’t so difficult as I had my other ‘families’ to occupy my time and soften my sad thoughts of separation from my own family.
As time passed it never occurred to us that the hospital, their doctors and specialists had absolutely no idea what my ailment was, where to find a cure or how to fix something that is actually unfixable. They had never heard of Osteogenesis Imperfecta, no one at that time on Bali Indonesia had, so their approach was always going to be guesswork at best. An operation in the dark carried out by blind surgeons was pretty much what was about to happen.
Life for me continued as plans were made to move forward with the operation. The hospital had become like home and I remained happy and positive even though I was classified as very sick. The hospital staff would encourage me to sing and as time went on a lot of my daily activity was taken up with performing for other patients and their families. On many occasions I was offered money for my singing, but I will never know if it was for my performance or because they felt sorry for me.
For everyone else in the hospital, their treatment and daily living expenses had to be covered by their family, nothing was free. My treatment and daily care was funded by the donations raised; even my fathers transportation to the hospital and return home was covered.
The closest they came to a diagnosis was ‘glass bone,’ explained as ‘brittle bone,’ like the bones of a very old person. Unbeknownst to them and everyone else, their diagnosis was in fact Osteogenesis Imperfecta. Unfortunately much more research would have led them to a conclusion that the operation they were planning at that time was totally out of the question. As I have aged and looked back, I suspect that their rational for continuing with the procedure was a combination of face saving and donation usage.
It had been nearly six months since I had been home or seen those closest to me.
With a diagnosis of glass bone confirmed the operation to correct my condition was scheduled. We were given information on how the operation would proceed and informed that newspaper and television networks had been invited to record the event.
At this time my family and I were feeling a mixture of excitement hope and fear. There was great excitement at the prospect of being cured, gentle and quiet feelings of hope for a normal life and unspoken fearful thoughts that it could all go very wrong. We visited the temple and prayed that our anxieties would be converted to strength and success.
I awoke in a different room, a much cleaner more modern room with space for only three beds not forty beds. It was very unlike the room that had been my home for six months. The new room felt very good but my new condition felt very bad.
This new pain was like nothing I had experienced before; it was bone breakage on a much higher level. My mother soothed my fear, listened to my anxieties and explained that the operation had made my legs straight. I would need to be very patient.
I dreamt about the operation or thought I had. I watched how they cut through my skin and muscle, through to the bone. How they opened my leg bones and how they inserted metal rods to make my legs straight. I watched as they closed and stitched. Then I realized that I was actually fully awake, watching it all on a television in the room. I looked down at my feet. They were straight. I cried.
They had operated on both legs and initially it looked as though success had been achieved. But stories are made up by chapters and my very real story was only a few pages young. I ended up staying in my clean new modern room for one more month but as money from donations had started to rapidly deplete I was returned to my original room. After another month I was allowed to return home. Donation money had been fully spent.
There had been no issues and the excruciating post operation pain I had experienced had decreased to a bearable level. My parents were told to bring me back to hospital on a weekly basis for check-ups. I was going home, after nearly eight months, I was finally returning home.
After one month and regular checkups my plaster casts were removed. My legs were straight, my feet were straight, I was normal. I felt very weak and believed it was due to so many months of inactivity, my muscle strength needed building up again. My new improved condition remained stable for approximately one year but as I started a second year of ‘normality’ it became painfully apparent that the leg bone curvature that had been corrected was beginning to bend again. So after two years post operation I was becoming increasingly worried that success was heading to failure.
As my anxiety grew and my bones continued to bend I was horrified to notice that the rods they had implanted were starting to protrude from my skin. I became frightened and told my parents how much pain I was experiencing. I cried constantly and was absolutely terrified at the sight of what was poking out from inside my legs. We returned to Sanglah Hospital and consulted the doctors, asking what must be done. They told my parents that another operation must be performed as soon as possible to remove the rods but that such an operation would be very expensive. With no donation money left, this reality would of course be a major problem. We had no option but to leave and attempt to find a way to get money for the operation. My parents called our whole family together to explain the situation and the severity of my condition. It was decided that our cow would be sold to hopefully raise enough money for the operation to proceed.
It was 1992, Osteogenesis Imperfecta was still unknown and my family had sold our cow for 300,000.00 IDR to pay for an operation to remove metal rods from my legs.
I returned to hospital and waited for one month without any operation. The doctors explained that there were many people requiring operations and that I would need to wait. They explained that because we were poor my priority on the operation list was very low, but that it could be sped up if we could obtain a letter from our Head of Village explaining that we were very poor and needed the operation quickly. Unfortunately our Head of Village was very reluctant to assist and it looked as though my situation would worsen. Thankfully my family were able to convince him that my situation was painful, very dangerous and if left untreated could be life-threatening. I had been in hospital for nearly two months when finally permission was given to perform surgery once again.
I awoke from this second major operation with the same sensations as the first. But the physical pain I was experiencing was much worse this time. The metal rods had been removed but they had tightly bandaged what was left of my bent legs straight again. The pain was unbearable, my leg bones were actually broken in pieces and I called to my Father to bring my Mother to me. I screamed every day in pain, without any relief, I wanted to die.
Each morning the Doctor would open the bandages to check the wounds and then tightly bandage my legs straight again. I would cry that I wanted to go home and was told that if I ate and became stronger then I could go home. After another month it was decided that I could go but we were unable pay for all that had been done. We attempted to discuss our situation with the hospital but they were not at all interested in our story of poverty. After discussions with government officials who were willing to listen, full charges were paid and I was discharged and transported home by ambulance. My parents were instructed to bring me back to hospital each week for check-ups and removal of stitches when my wounds are healed.
In just a few years I had gone through two major operations. I had been hopeful of a cure, excited about being normal and ultimately disappointed as it became obvious that everything had gone wrong and nothing had worked. I could not face going back to hospital, to the place where I had felt so much pain and suffering, I removed the stitches myself. The immediate physical pain and blood was outweighed by the emotional fear, constant stress and terrible torment associated with past experience.
My journey from glass bone to brittle bone and eventually to Osetogenesis Imperfecta (OI) would hold many challenges. I would learn a lot about the condition, come to know a lot about human nature and continue to be aware to this day about what it takes to survive.
To survive and function as a disabled person in a world that sees normal as the only option.