What Sickle Cell Cost Me
Sickle cell is a thief of joy and happiness. Most patients try to live through it all and smile as much as possible but this doesn’t take away the fact that some of these losses leave a permanent mark on our lives.
In Ghana, most illnesses are associated with evil and curses. My case was not any different and the lack of education on my sickle cell made it worse. This gave people reason to draw their own judgment. Parents prevented their kids from coming close to me. I did not get the chance to experience childhood with friends, playdates, etc.
I would be by the window watching other kids play in the rain and run after each other but all I could do was admire from afar. My parents feared I would get sick and made sure I didn’t do anything that could trigger a crisis. They were right, but most times I really wanted to experience them.
A trip to the US
During my senior high school days, I discovered that I loved to write poetry. It became an escape from my depression and I found a way to pour my thoughts and emotions into the words I wrote. I took an interest and participated in a poetry competition called “Poetry Jam.” I qualified for the national stage and won. The prize was a trip to the US for an exchange program.
My frequent crises kept interrupting the process (passport and visa appointments etc). And that was it. I lost the opportunity. One painful experience I can never forget or heal from.
A movie role
Acting has always been my passion. In senior high school, I joined a drama group and we competed in drama competitions. I was likely to win best actress or supporting actress in these competitions. Word got to the director of my school and he awarded me with a full scholarship.
After school, I decided to take my acting more seriously. I attended auditions hoping to get a role. I auditioned for an American horror movie to be shot in Ghana. The location was far from town in a forest. I got on set the first day and had a mild crisis (probably because of a change in weather in that area).
Unfortunately, I was playing a major role, and getting sick meant the shoot had to stop for a while or re-cast another person to take my role. The director and movie crew decided to re-cast out of fear that I could get sick again. I lost the role and the blessing that came with it. I haven't been able to recover from that to-date.
My love life
I don’t know if I should classify this as a blessing in disguise or a pain in the neck. When I started dating in my senior high school days, I was so reserved about my condition and didn’t want anyone to know that I had sickle cell.
When he found out and got furious, I thought it was because I did not tell him. Little did I know that the anger was because he thought I "came to ruin his life by slowing him down with my health issues and preventing him from building his dreams and empire.” To him, dating me would be a stumbling block to his career and success.
The breakup did not only hurt my feelings and self-esteem, I also got really sick and depressed; Feeling like I was not good enough because of a health condition that was s not even my fault. I’m glad I recovered from that. Love and relationships have never gone right for me and this finally influenced my decision not to date or get married.
Sacrifice and sickle cell
It is true that sickle cell can make indelible losses in the lives of patients. It is also true that most of these losses are impossible to recover from. But in my journey so far, I have found that positive thinking goes a long way to improving our lives. In all of this, I’ve moved on regardless. Even though I’m not where I wish to be, I’m not where I used to be. I’m grateful every day for that.
Have you had a special caregiver in your life?