From a very young age, I was told by physicians that I would die before I got to age seventeen. Growing up in Trinidad, providers didn’t fully understand my condition. Even people close to me thought I was weak when I needed to go to the hospital after a day at the beach. They didn’t understand the depths of my struggles – I am not in control of my pain and blaming me only brings down my self-esteem. Sometimes I wondered: what am I living for? In those dark moments, I feel lucky to have had my mother always pushing me to the next level, developing my attitude of always wanting better for myself. She helped me realize that having sickle cell disease did not mean that I needed to put a pause on my life. My mom encouraged me to go out with friends, even if that meant I was in pain the next day because at least I was able to have fun. She made me realize that I was so much more than my condition, giving me the confidence to become a hairdresser and move to Canada.
The healthcare system in Trinidad is ten years behind. I would sleep on my mother’s lap or on tables in the hospital for three days at a time, hydroxyurea was expensive, and my family tried to donate blood for me when I had my gallbladder removed. When I came to Canada, the quality of my healthcare improved greatly, but I began facing new challenges: racism and discrimination from providers. There was one experience where an emergency department physician that I did not know said they would no longer see me the next time I came into the hospital, implying that they believed that I was drug-seeking. My stress levels increased, which sent me into a worse crisis because they were making all these assumptions when they didn’t know me. They made me feel scared to come to the emergency room the next time I had a pain crisis.
My anchor in recent years has been my son. I know that my sickle cell disease affected him a lot. When he was younger, I had to take him with me to the hospital or be away from him for four or five months at a time while I was being treated. He would come home from school, crying, when his friends told him that his mom was going to die. In 2010, my lungs collapsed, and I started on oxygen. My son, who was only 10 at the time, would come home from school, worried about me. At nighttime, he would get out of his bed to check on me and I would have to say to him, “I am the mommy here, you’re the baby.” He has always been there for me. Each day, I want to show him that even though I struggle, I continue to fight. To this, he says, “No one should have to fight this hard in life.” He has grown up to be the most incredible person and someone I am so proud of. My son is who I hold onto during those moments when I feel like giving up; he makes me realize that there is so much more to live for.
