SKELETON IN MY CLOSET! MUMMY IN YOURS! By Gubli Natogmah

I love to write. You have probably noticed that by now. As to whether I write well or not, get my point across or not, effect change with my write-ups or not, is for you my audience to decide. I decided that since there was a power outage during the day, with my planned meetings having been scuttled, I would spend my night writing. So it was that I opened MS word, poised to write, yet all I could type was ‘A’. 

So I took a break. I spoke to a couple of loved ones on phone, trekked to Adenta station to print some documents and buy one or two items. I returned still not sure what to write. I sat in front of the TV, and a movie I had watched some time back was showing. It took my cousin to remind me of the title, LIKE STARS ON EARTH! Then there was a discussion on why Ghanaian movies can’t portray conditions like Malaria too. I thought Malaria was too well known to sustain a full length quality movie. 

Then the idea came to me. I realized then what I should write about. It was a Thursday. I had made my way to Adenta Station as usual to board my trotro bus (not that I owned one). I took a seat on the front row and as usual avoided the window seat right behind the driver because the sun’s rays shining directly on me usually made me sweat, one thing that could spoil my morning very easily. Next to me was a mother with her daughter. This child who looked like she was around 5 years was held in her mother’s arms quite tightly. Not that she was sleeping or feeling sleepy. Even in that position, she was very agitated and restless. Knowing how uncomfortable mothers can become when they realize their children are a source of discomfort, I ignored the kicks I received from this little girl struggling to break free. Intermittently, she would reach for her mother’s dress around her ‘chest’, just as a hungry 6 month old does when he/she wants breastmilk. Yet this girl was far too old for that. 

Along the way, we picked up a lady. She sat in the front seat. Judging by how neat her abundant natural hair was kept, a lot of time and effort must have gone into keeping it. So imagine then how this lady reacted when the little girl reached for her hair. 

It was Neuro Clinic day. I sat in one of two consulting rooms dedicated to our special patients. (Of course can’t possibly sit in two, duh!) From nowhere, bumped a girl into my room. I turned around to see which patient had strayed. Wow! It was her! The same girl who kicked me in the car. The same girl who held another passenger’s hair. The same girl who was restrained by her mother throughout the journey. It was the same agitated girl. I inquired. Of course I was curious. I was told she had ADHD. If you are looking forward to expatiation on this topic, sorry to disappoint. Please help yourself to it. 

She was not the only one that day with that condition. In fact there was a girl whose ADHD was even more serious. She ran around the consulting room all that while. Any intervention to keep her still elicited a temper tantrum- she fell to the ground, crawled around and cried. She picked a pen and asked for a paper. Did she even write anything? She burst her balloon and seized another child’s. She ran to her mother and back. Her mother was obviously worried. Yet how on earth were we who are supposed to know and understand her condition going to be unaccommodating? Admittedly though, due to her destructive powers, I started feeling uneasy. Multiply these two children seen one morning by 100 and we get 200 kids with this condition. ( wish I had data on Ghana). 

There is a child in class caned everyday because he probably has this condition which leaves him hyperactive and unable to stay put in class. Such a child will be caned all the time in class for mutiny. At home such a child will be branded as a rascal and disobedient, etc. Then next time you or I are tempted to brand someone and punish them for being their natural selves, please think ADHD first. It has been 24 hours now since I started writing. Initially I was short of writing material, yet now I am overflowing with ideas. Where did they come from? 

Well, watched another movie that moved me emotionally- FRONT OF THE CLASS! It was also about a health condition- Tourette syndrome. All throughout the movie, my mind wandered back to my time as a teacher in a basic school after SHS. I was the friendly teacher who wanted to impart knowledge to all. I rewarded and punished. I tried to stay away from the latter much. Yet there was this one intellectually challenged child who just couldn’t get it. I tried hard, yet he still just couldn’t get it. I became frustrated. I started caning him, sometimes out of my own frustration. I look back today and wonder if he had a real health concern. And there are many reasons medically for intellectual handicap. 

Rewind even further. The year was 2000 or 2001. I was in either class 6 or form one. I usually taught my younger brother and his friend. They were, if I remember rightly in class one. I knew my brother was sharp from his class performance, but he just would not outperform his colleague during our lessons. I tried to get him to concentrate and learn to spell his name rightly in addition to accomplishing other class appropriate tasks, but his friend was mostly a step ahead. That too was frustrating. I became impatient and frustrated. I thought he was slow and not as intellectually capable. I told him off. Today he is an electrical engineering student in his first year of study. Watching him grow, we all knew his hyperactivity and dexterity will come in useful one day, obviously that was years later after my tutorials ended. 

I have my own story to tell. I didn’t have a clean bill of health growing up. I had issues. I still do, though. I always knew there was something wrong, but neither I nor the doctors could figure it out. It was a requirement that all first year students find out their sickling status. I did. On the request from it was written- SICKLING POSITIVE! Even before I could submit it to the doctor for review, my curiousity wouldn’t let me sleep in peace. I thought I now knew why I had those health issues growing up. I knew very little about sickle cell disease, but I knew enough to start worrying. I got so worried that I searched our library extensively for information. I saw one useful book on the subject written by Prof. Ahulu. I can’t remember the title though. I read and read and read. I got worried knowing all that. I checked for life expectancy and if I remember rightly, the oldest patient known to have the disease was Nigerian in his 70s or so. 

These were tough times. These were the first few weeks in school. I remember calling home and asking my parents about their statuses. In my mind, they were to blame for my plight. Review date came and I submitted the report. I was now asked to do an Hb electrophoresis. It was at this point that I realized that I was AS. Then I knew what ignorance had led me into. 

Fast forward to this very day, and I know there are many who don’t know their sickling genotype. Many of those who do are health professionals. It is they who constantly are reminded about the difficulties children with sickle cell disease go through. It is they who see the frustration and regret parents who care for such children silently express. Others simply don’t care. They leave the decision to God. If He has taken care of generations before us who didn’t know their statuses, won’t He do same for us? Well I am a realist. I know that ignorance sometimes is our way of escaping responsibility, but just you wait till you are tested. 

I know an enlightened father, who before he married his wife got tested. He was AS. So he knew he couldn’t marry another AS based on the chance that they could bear children with the disease. His wife got tested and was declared AC. The lab technician who conducted the test told him that once she wasn’t AS, they could get married with no issues. So the two love birds got married. Their daughter fell sick very often and went from hospital to hospital. She was treated for malaria most of the time only to fall sick after a short while. It was during one such hospital attendance that she was tested. She was found to be SC. Imagine the shock and anger her father expressed on hearing such news. Even the laboratory man who advised had erred to the extent that a lifelong consequence was being felt. He intimated that he wouldn’t have married his wife if he knew. He said he would have the other child tested. He even suggested divorce! Where did all the love go? 

I have many other such experiences. Even personal once exist. But those should be for another day. What I have tried to highlight are: knowledge should abound. All should be informed about the various health issues that exist, which though may not be as obvious or prevalent as malaria and pneumonia, can either be prevented or managed to ensure that people don’t unduly suffer, for, for lack of knowledge, people perish. Also the information should be properly packaged for widespread consumption. And as I have sought to highlight, movies are a very useful medium. After knowledge becomes widespread, individuals should make informed choices however hard in the interest of those unborn, regardless of religious inclinations or the strength of the love bond shared, for as I have come to see, the emotional and financial cost involved in caring for children with special needs can weigh down and wear out whatever love there ever was. 

Finally, can’t we have a national policy which ensures that all students entering SHS should be tested and know their statuses before admission. This would precede the time when boys and girls start taking decisions with lifelong consequences. Education should be intensified. A foundation can be set up to fund research and educational campaigns. Movies should be acted. Documentaries should be made. All these in a bid to promote awareness and render this morbid threat extinct.

By Gubli Natogmah