The story of my sister’s illness

I was 13 when my sister took sick. I’d like to think that my sister’s illness had changed my persona. I considered myself as a very talkative and social person, then after my sister got ill I was quite the opposite – very quiet, sombre, angry and living in a fantasy world in my head. She had a brain tumor that was growing since birth. It made me feel like I was in a dream, as if there’s no way she could be sick, there’s no way that God would allow that. Mentally, it was as if the gears switched off and I wasn’t really here in the present. I remember one of the first couple nights in the hospital she said her head was hurting so badly, she let out a wretched scream of pain and anguish that it was as if I felt it. I was taken aback and my heart sank and my mind just turned off from then.

During the summer months, I was supposed to go to the hospital daily, just to check on her, and I hated it so much. It was so selfish of me. I hated the smell, and I hated the reality of seeing her lay there in pain, so helpless and couldn’t do anything to save her. I needed a break. I went to my cousin’s house and it was then that I heard my mom talking to my aunt, and she started crying. I spoke to my mom and she said my sister has been in a coma for a couple days now. I couldn’t believe it. I couldn’t believe they didn’t tell me as soon as it happened. I thought it was my fault, because I felt I needed a break and just when she needed me, she fell into a coma. I blamed myself so much for that. And I hated that they never told me. I hated that God allowed that to happen. I became a very serious and angry person for a long time after that.

I remember my mom and dad saying that the doctors said she would either die or become a vegetable. One day they were talking about her coffin and where they would bury her if she died. I was confused. How are we supposed to believe God would fix everything, then on the other hand talking as if nothing would be fixed. I refused to acknowledge death, and slipped further away into the fantasy world in my head. I lost myself in books, always reading fiction and imagining another life. That was my coping mechanism. I never cried or worried about my sister, I never focused on her enough to do that. I chose to ignore the situation.

The nurses at the hospital used to tie her hands to the bed because they were short-staffed and she would have seizures. Tied her down like an animal. To me, this was absolutely barbaric. She’s a human being!!! You can’t just tie her down like that! I was so ANGRY. If I could slap, kick,  beat every nurse and doctor in the hospital, I would. I really didn’t know how to deal with that emotion but it festered inside me. My heart overflowed with so much pity for my sister, yet again feeling so helpless towards her.

When my sister switched over to the ICU, there was one nurse who was very rough on her, yelling at her, rushing her to take her pills, being rough when trying to wake her up. Oh my god, lady, she is ill and in intensive care, what do you expect!! I stood beside the nurse and my heart swell and I felt like I was going to punch her in the face, I mean it. My parents were there too. I remember a very distinctive look on my mom’s face. Her eyebrows were furrowed and her eyes were a mix of anger and pain. What could she do? She can’t stay all day with my sister to make sure she was well taken care of, because she had to work to help my dad pay the medical bills, and send me to school. She can’t leave her in the hands of the nurses who obviously aren’t nurturing and don’t really care about my sister’s wellbeing. Her face was a mixture of pain and anger and helplessness. My inability to help my mom only made me more frustrated. My dad was extremely upset. He went to the manager and told them what was going on, and they manager and the nurse and my dad (and I think my mom) spoke in a room, and the nurse said ‘I’ll try my endeavor best”. I was filled with dread leaving my poor sister in the ICU for another day with incompetent people.

There were many days where my dad was working extra hours to pay the bills, and my mom was at church praying for my sister, or visiting the hospital with pastors to pray for her. She also hired someone to stay with her 24/7 because we couldn’t trust the nurses to do their job. I was often at home alone, and I realized that I could do anything I wanted, go anywhere I wanted and literally no one would know. Anything could happen to me in this house, no one would know at all. I didn’t go anywhere. All I did was made something to eat, and dive into my books, into my fantasy world. I didn’t want to hear or see anyone, because everyone wanted to talk about my sister and shove reality in my face.

The day she came home was a joy for everyone. I was about 15 at the time. She couldn’t do anything by herself. We had to help her to walk, eat, bathe, change clothes, everything. It was like having a baby. I remember I often had to bathe my sister when she was well enough to walk and stand on her own. I hated it. I hated it so much. And my mom realized it and stopped asking. Then I felt bad that I didn’t try to help joyfully. That I didn’t do enough.

There was one time when my sister pooped in the car and I watched my mom clean her up and she was so tired. I loved my mom so much. I don’t think anyone can understand how much. I remember watching her and watching my sister and feeling so helpless towards them. All the memories of how my mom was hurt so badly over the year flooded my mind (she was raised by a couple that abused her, almost raped, treated unfairly by her sisters, cheated on by her husband, betrayed by her sister who slept with her husband, and much more). And now she has to deal with my sister by herself. I cried for my mother, not my sister. My heart overflowed with love for her and I just wanted to be the child she always wanted to have. One that fulfills her desires so that she feels she did something good in life. I remember one day we were driving back from the country late at night, and it was a long drive, and I told my mom I was cold and she took off her sweater and gave it to me. I thought about that and how she gives so much love and barely receives any, and I wept.

My sister was dubbed ‘the miracle child’ because over time, she turned out quite normal. She was back to her jovial self, could do things on her own. She finished up high school and took driving lessons and was working. People marvelled at her recovery because it was clear that she would have died. My mom and dad both claimed that God saved her, and to this day, I always look at my sister as a testimony of how God can turn things around. I watched her recover and shock the doctors with my own eyes. She was under the care of the best neurologist in Jamaica, and she said her recovery was surprising. So whenever I’m having doubts, I always, ALWAYS look back at this time when my sister made a miraculous recovery.

Unfortunately, she had a relapse 3 years ago and is still recovering. She can still do everything for herself, but had to stop working because she’s very sensitive to loud sounds. But she is generally ok and for that I’m grateful. We all are because it could be a lot worse.

I’m 25 now, and when I look back, I realize that growing up I really didn’t like my sister at all. I was jealous of her in fact. She was the singer of the family, and my mom always said how they waiting 8 years for her because she had difficulty having children. She was the baby that almost died, but turned out ok. She was the singer of the family with long hair and pretty skin, warm and loving and everyone loved her. As for me, I was the smart one and that’s it. It’s an identity I’ve held one to up to this day, while my sister was everything else. In many ways I wanted to be like her so I could also be accepted. I am motivated based on positive feedback, and I felt like she was getting all of it. So yeah, I didn’t like her. We weren’t close because of my jealousy. I’m the one that pushed her away, and excluded her when I could. I’m the one that was selfish and didn’t talk to her. I was the villain. And I regret it. Because, maybe if we were close, I’d realize something was wrong earlier. But what’s happened has happened. I realize that if my parents should die now, my sister would be under my care, maybe for the rest of her life, I don’t know. I would pack up my things and go back to Jamaica, and take care of her as best as I can. It’s the least I can do, that’s MY sister, my only sibling, and I love her.

Until then, I’ll make the most of my time here in the US, fully aware that my time here is not permanent. I’ll enjoy my solitude and freedom for as long as I have it until it’s time to return. Bless my parents for their devotion and sacrifice, and bless my sister for being a fighter.

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