Burning Bright

Chapter One - 2

Nadia woke up by four in the morning. She knew all the sleeping would affect her sleep pattern eventually. She reached for her bottle of water and drank half of it.

If there was one thing Nadia prided herself on, it was her ability to take things in stride and be hopeful. She might have a good cry before that, but she usually accepted reality and was able to move on with optimism. To do this, she usually went back in time and played her life in her head, as she was presently doing. She was not sure why, but this helped her to move on whenever she had something to accept. The crying usually preceded the acceptance, but today, she did not feel like crying.

For Nadia, facing the horrendous reality of sickle cell anemia had begun when she was three years old. That was when she had started experiencing the extremely excruciating bone pains called “crises.” Before then, both she and her parents had thought she was just a normal little kid.

A crisis could be triggered by a wide range of phenomena, including but not limited to: extreme weather conditions, infections, malaria, physical, mental or emotional stress, dehydration, insufficient blood, change in hormone levels and pregnancy, among others. On any given day, there are a handful of phenomena that could make a person with sickle cell anemia have a crisis. Treatment of a crisis involved administering analgesics, rehydrating intensely and treating the causative factor, where applicable.

At age three for Nadia, it had begun with the incessant joint pains and the paleness. Her wise grandmother had told her mother that Nadia looked sickly to her, but her mother didn’t think so. After the pains persisted, she went to get her checked and to her consternation, found out that Nadia had sickle cell anemia. Apart from being upset, she had been confused, because given her blood genotype (AS) and Nadia’s father’s (AA), it was impossible for Nadia to be a sickler (SS, a person with sickle cell anemia). Offspring could have the SS genotype only if each of their parents had at least one S in theirs.

Nadia’s mother had reconfirmed her genotype to be AS before heading home to tell her husband that there must have been a mistake with his blood testing. Obviously, he had to be AS also – not AA. To her mother’s grave shock, she had found out that Nadia’s father had known the entire time. He had told her his blood type was AA because before their marriage, she had been worried about the possibility of having an SS child. His reason for hiding the truth had been that he did not want to lose her and also, God would take care of their children, no matter what their genotype turned out to be. 

Her mother had felt betrayed and tricked. She was very aware that God would take care of her children, but she also believed that making informed decisions would save them from suffering, to begin with. She had known the pain sickle cell anemia could cause and she had not wanted that for her unborn children, that was why she had specifically asked about his genotype before marriage. She had cried unremittingly, but finally accepted her fate and that of her daughter.

Nadia’s mother had given her all the attention and care she deserved and as a result, people were always shocked to learn that Nadia had the disease, because she did not look it. Nadia knew she was lucky to receive all the care she did, but there was still the fact that sickle cell anemia had no cure and no amount of care could have saved her from all the physical and emotional torture she had been through because of it. Also, she wondered why her mother had gone on to have four more children, when it was a huge risk and she had seen her suffer from childhood. Luckily, three of the four had been free of sickle cell, but one had had the same luck as Nadia. Unfortunately, he had died at age four, a year after his pain had started.

Nadia’s faith had become rather impregnable over the years, and she believed that her sickness had a lot to do with it. When the topic of spirituality came up, she found out that many people had made faith a priority much later on in their lives than she had. Even in her family, she had seen for herself how her brothers and sisters had taken their sweet time to become serious about issues of faith.