Fatal Genes

When you are suffering from the symptoms of sickle cell, you want to end your life at that moment. The pain is so much that getting out of it by ending it all seems to be the only thought that creeps into your head.

My name is Blessing. I am twenty four years old. I live with sickle cell blood disease.  You may have read about the disease in a textbook, or researched it on the internet, so you know a thing or two about this affliction. I want to add my true life experience to your reading list. I want you to get a real and true picture of how I manage to beat the odds day in day out.

I am the last child of my parents. I have an elder sister and two brothers. I was ignorant of my condition when I was little. I grew up like a beautiful hibiscus flower amongst my three other siblings, under the strict supervision of our parents. My father is a clergyman while my mother is a teacher. Both my father and mother have sickle cell traits. Unfortunately, I am the only one with sickle cell blood disease. My siblings are unaffected.

The terrible pains started from childhood. I did not understand the reason for the pain until I found it difficult to walk. It was then I asked questions. ‘Mami, why do I have pain from inside?’ ‘Why can’t I walk like by brothers and sister?’ I was told nothing.  The nurses who attended to me knew I was a sickler, and my parents knew I had been diagnosed of sickle cell disease from birth. They told me nothing until the problem became more complicated. The series of agonising pain I had been having were sickle cell crisis related, which became so frequent, and so severe, I was sleepless for days.

During the crisis, to eat and drink was strenuous. Cold weather triggers the crisis, hence it was more prominent during the cold harmatan spells, November to January, and the raining season, May to August, and sometimes into September. What this means is that I am in discomfort for eight months of the year. Consequently I missed school many times.  Then again, surprisingly, I never repeated a class throughout my elementary education.  I want to attribute my academic competence to my mother’s coaching. She was determined not to allow failure in my studies.

The pains and wounds come and go. I had no friends at school, while I was made jest of because of my sores. Children can be cruel. They had no idea how much the “quarantine” was making me miserable inside. The perception was that someone with such horrific smelly sores must be a witch. I was not really angry. They knew no better. Deep inside though, my misery knew no bounds. I prayed for solace. I prayed for healing. I prayed to God to take the pain away. I prayed and prayed. I took part in school drama to take my mind off my illness and get a little happiness. Then my parents remained caring and loving, at least for a while.

I finished elementary schooling and proceeded to secondary school. My secondary education attendance turnout was no better as the crisis increased in severity and frequency. As things became worse, and the expense of taking care of my illness got out of control, I noticed that my father gradually lost hope, although my mother continued to be supportive. My father opted out of any further financial obligation, evidenced by his negative response to my mother’s request for medical allowance. He would tell my mother that money ‘has been deposited in the hospital,’ just to get her off his back. Soon enough nobody showed me love in the family, or gave me the care I so much needed. My sister refused to take me in. She said I was lazy, feigning my agony. My brother was the exception. He bathed my wounds, cuddled and consoled me when the pain took over my whole body.

My father’s sudden indifference, and my being constantly tagged a witch, gave me concern.  My mother, who initially was my caregiver, also lost courage in due course and abandoned me like my father. I was wasting their hard-earned money, they told me. They forgot that I inherited their fatal genes. I could handle societal rejection, but my parent’s denial plunged me into series of depression and loneliness.

When I became seriously ill in 1990, I was deserted and rejected. There was nobody to take me to the hospital, so I stayed at home, agonising in pains from the hip for several months. I could not walk, and felt no life in my legs. I had sleepless nights and my condition could best be described as hell on earth. I was left in this condition while my parents continued with their normal lives as if I did not exist. I had to bathe my wounds myself.

Then out of the blues, a kind-hearted nurse took my case up and brought me to a good hospital. I was treated and discharged to haematology clinic for follow up. It was shocking to be told I had a femoral head collapse consequent upon the long delay at home. Of course I had no money for regular clinic attendance, due to my deteriorating health.

I stopped school altogether in the meantime. I had neither the strength nor the funds to further my education. I developed a chronic leg ulcer around my ankles, a complication of sickle cell blood disease. This went on for several months and I had to return to the hospital, where I had skin graft put on the ulcers and discharged.

To my horror, shortly afterwards, the skin graft broke down and the leg ulcers resurfaced. My parents were angry with me. They continued to call me a witch and refused to take me to the hospital. The ulcers grew worse and nobody offered me a helping hand. I was in suffocating pain day and night. I could hardly walk. Even going to the bathroom was like climbing Mount Everest in the rain. This ordeal continued for another two years, and the ulcers started bleeding and discharging pus with foul odour. The colour of the ulcer became greenish. This I perceived as a dangerous sign and decided to leave home to save my deteriorating health and at the same time look for a solution to my education.

I went to a College and got an admission into an advanced academic programme to study Education, and continued to visit the hospital to treat the deteriorating leg ulcer. One day, I went to see the Chairman of the hospital’s medical advisory committee to ask for financial help. Although I was weak, I climbed the stairs that led to the Chairman’s office. Unfortunately, I got exhausted mid-way. Everything around me dimmed, my vision blurred, and I collapsed at the doorstep. I was taken to the emergency unit by an office worker. Bad news; the Chairman was unavailable. Nonetheless, I was admitted but eventually discharged since I had no money to pay the hospital bills. I was told my legs would be operated upon, which got me really worried. How could I pay for an operation when I had no money to buy food and other basic essentials? Going back home to source for funds was out of the question. I wasn’t welcome there anyway, so unavoidably, the hospital became my home. I had to get the ulcer dressed every day.

With no source of income, my daily meal became a difficult task. A few good people, among the hospital workers, gave me money once in a while. Even in this near-to-poverty situation, I had frequent sickle cell crisis. Sometimes I was treated free, other times I was not attended to because I had no money to pay for treatment.

When my health got a bit better, I went back to College but unfortunately, so much work had been done in my absence, I had to defer my admission. I was so sad, lonely and miserable, but was comforted by my faith in God. I attended a Pentecostal ministry. I joined the Christian drama group. Members of my church visited me once in a while. I had no father, mother, nor siblings to talk to. No friends to share my thoughts; nobody to share my pains; no place to go; no work to do. My condition, of course, grew worse with my inability to continue College.

I did not give up. I took my troubles to one of the medical doctors who enrolled me in a computer school and paid my tuition fees. I still attend the computer school, but I have not been regular due to my ill health. In the midst of my chaotic lifestyle, I was able to cope and learned fast. I am almost through with my studies and hope to establish my own computer college. I still desire a university education sometimes in life, all the same taking it one day at a time.

A formal presentation of my case was made to the Chief Medical Director of my hospital, who sent a letter to my father, inviting him. My father did not honour the invitation. I was readmitted into the female medical ward as a result of another episode of sickle cell crisis. The hospital management, God bless them, finally operated on my legs free of charge.

  My sickle cell crisis is now only once a year. But it is terrible when it comes. When the crisis hits, that day is pure hell. My legs feel as if they are being axed. Sometimes the pain comes without abating for five minutes. I cannot sleep. I cannot pass urine because it is so painful, my muscles cannot contract because of the pain. Breathing is difficult and I get dizzy.

At such times drugs are prescribed for severe pains. I take six tablets of Fortwin analgesics a day. Another drug prescribed to provide relief from debilitating pain is an opiate analgesic which I react to. It pushes my tongue out each time I take it, so I had to stop the medication.

I will like to get married and have children, but my love will not be blind. I am a living evidence of the result of blood cells incompatibility.  As far as I am concerned, there is nothing like marrying for love if you are going to carry the burden of fatal genes. In circumstances when, out of ignorance, the deed is already done, it is unfair to abandon your children.

As regards my parents, and in fairness to them, they tried. It is just that they were overwhelmed by my constant agony. Who wants to see his or her daughter writhing on the floor every day and screaming? I think the problem with my parents was that, they waited for too long for me to fall ill. They should have prevented the pain from happening in the first place. For instance, I walked to school one day, and when I got back home I was in pain. They gave me analgesic. Couldn’t they have put me in a taxi or a car and taken me to school? Why make me walk when they knew it could trigger a crisis? So it is better to prevent pain. Preventing a problem costs less than trying to cure it.

My pain and agony continued as an abandoned child and a sufferer of the vices of ignorance. I see my case as inheriting fatal genes from my parents; hence my appeal to people is to avoid a marriage that would put a child in bondage. Lovers with the sickle cell trait ought to go for genetic counselling before getting married. Love shouldn’t be blind, not in the age of technology when there are several healthier options.

My story is just one out of several others, but it is cheery to know that not all parents of sickle cell children leave them to go through such agony alone. I know a couple of parents that shower so much love and unlimited funds to make their afflicted child comfortable and not lacking the best medical care that money can buy.

I want to send out the message that sickle cell is not a taboo, but an unfortunate genetically transmitted blood disorder that results in the production of abnormal cells. So next time you meet a sickle cell patient, show some love and understanding.

Story Credit: Waving in the Wind by Bisi Abiola

Photo Credit: Creative Commons.