- As we observe World Tuberculosis Day we will be talking to Esosa Ikolo– a writer and motivational speaker. Her mission is an interesting and important one, to enlighten people about the world’s second biggest infectious disease killing one person a minute.
Please give us your brief bio?
My name is Esosa and I am passionate about helping others realise and utilise their potentials, to dream big and give life to their dreams so that they live a purpose-filled life. I also lead a health campaign called Be Enlightened about Extra Pulmonary Tuberculosis- (B.E.E.P-TB). I’m a civil engineer and work as a project manager in Birmingham where I live with my husband and our two lovely boys of valour.
In a nutshell tell us your experience with TB
When I was in my 2nd trimester, I became mysteriously ill and got hospitalised. Unfortunately my doctor could not diagnose the cause of my illness and he put it down to pregnancy. As my condition worsened with excruciating pains and breathing difficulty, everyone became concerned and so my doctor was forced to carry out an x-ray on me. A sputum test was also done to check for Tuberculosis given I had carelessly mentioned having a spell of cough; the test for TB came back negative.
As days passed, my situation exacerbated. The negative test results coupled with being pregnant did not help and these thus made it harder for the doctors to help me too so I was left to my own peril. I was told things would be fine post child-birth so I remained in hospital waiting eagerly for when I would give birth and have my life back again. But this was not to be. When baby came, I could barely care for myself let alone be a mom to him in any sense and about two weeks post delivery, I began to lose sensation in my legs and the pains I suffered in my back and chest increased exponentially.
I feared I would die and was rushed back to hospital in an ambulance.
On arrival at the Accident and Emergency unit, an x-ray was done on my back and shortly after, what seemed like a joke at first, turned out to be that four of the vertebrae of my spine had decayed so much that they crumbled pushing into my spinal cord. This caused the partial paralysis from my abdomen down to my legs. To save my life, an emergency surgery was done and my spine was supported with rods to help the bones grow back and heal.
Weeks following I was told that they had tested a sample of tissue taken from around my spine and it came back positive with Tuberculosis!
“TB in my spine of all places”!, was my immediate cry. None of it made sense to me especially as I had done a test before and I tried all I could to educate the surgeon explaining that with my African background and sound knowledge in Biology, it just was not possible for me to have TB and not show the known symptoms. Unfortunately my speech fell on deaf ears and rightfully so because it was my word against the laboratory test result anyway.
What did you learn from that experience?
An awful lot! First of all I learnt about what Tuberculosis is and I mean the real TB not the text book. In fact I could caption my main lesson as, ‘the many faces of Tuberculosis’.
I was born and bred in Nigeria where I had lived for 28 years before coming over to England. And although I knew Nigeria to be TB endemic, my limited knowledge made me to wrongly generally associate TB with people of poor sanitary practice. As far as I knew, TB was characterised by coughing, occasional spitting of blood and weight loss which was why I was taken aback when the doctors suspected I had TB– I hadn’t coughed much and neither had I lost any noticeable weight.
Unknown to me TB can live in one’s body for years, even decades and not show up. This is called latent TB. It is believed that I may have had the TB mycobacterium in me for a good while and it only showed up due to my immune system being weakened by pregnancy–this is active TB.
That I had so looked forward to motherhood and live my dreams of being a mum to my first child and was robbed of it for months after his birth, was hellish. Being paralysed and lying next to him for months after I was discharged from hospital and not being able to lift him, tortured me. It was traumatising to say the least.
Despite what the surgeon revealed through the 2nd test result, I strangely still couldn’t bring myself to accept that what made my spine snap was TB. In addition, I most definitely was not proud to tell people I suffered from TB due to the stigma attached to it which I had already had a taste of in the hospital. And with the myriad of feelings I battled with, I shut up in every way. Fortunately, I snapped out of this one day after 7 good years when it suddenly dawned on me to live my dream of writing.
What started out as fulfilling a dream ended as an exposé. With my quest to understand more about the surgical procedure and the cause of my illness, I met with my surgeon and interrogated him. I also dug into my medical records and pregnancy diary to capture relevant detail I needed and with a much wider research on TB, I discovered that it has two main variants–Pulmonary (TB) that is TB in the lungs and Extra TB and Pulmonary (EPTB) which is TB found outside the lungs. It was after this time that the penny indeed dropped. I wept bitterly the entire time I wrote my manuscript and wished that I had a hint of this information 7 years ago. I wished I knew that TB did not start and end in the lungs but could affect several places in the body showing a range of symptoms. I was also angry with myself and with my doctors for not picking this up at the initial stage when the symptoms showed.
With this, I was even more determined that no more would I shut up and feel ashamed about being a TB sufferer but I would join my voice and story to others and promote greater awareness about the deadly disease so that more lives can be saved. This led to the start of B.E.E.P-TB campaign.
Yours was surely an ordeal, how were you able to overcome the trauma?
It really was and if I’m honest, I don’t think I managed it well at first because I was angry, sad and too weak in my mind and of course body. There were times I queried God asking Him all kinds of questions. I am naturally quite a strong person but at some point, I literally gave up on being able to walk again and be a proper mum to my son. I recall when the physiotherapist came to commence my walking rehabilitation, due to the additional pain the exercises inflicted, I refused to do it. But I believe God used a nurse to get me back on my feet. One day a nurse came to me after seeing how reluctant I had been to the physio; she gave me a good talking to telling me that I had better cooperate with them unless I wanted to become part of the hospital furniture. And this changed my mindset!
Also knowing my family had me in prayers gave me some assurance that things would be fine especially when I could not pray. My faith got rekindled and I began to see lots of possibilities in my difficulty. It was like I needed that pep talk from the nurse and infact I know God positioned different people within the hospital and outside who spoke positively into me.
Amazing story, this is obviously your life passion now, how has your book been received?
It is in a way and there is every reason why it should be. It’s exactly a year ago that my book got published and since that time till date, the feedback and surveys results I continue to receive reveal that there are so many people who like I was, are oblivious of TB and its variants. While those who know of TB, feel it’s a disease of the past. With my campaign, I now work with health departments and organisations and grab opportunities such as this to educate people. Since I started, the response has been phenomenal; I meet many people who have quizzed me wanting to learn more about what to look out for if infected with either PTB or EPTB. Some said they have similar symptoms that have prompted them to immediately book an appointment with their doctor while a few said they regret not knowing of this beforehand as if they had, their family member would still be alive.
An interesting thing about the feedback is that about 95% of the people who have shown utter surprise about the TB facts I tell them are mainly of African/black descent. It is a known fact that Tuberculosis is referred to as ‘black man’s disease’ although it is also contracted by non-blacks. W.H.O report sadly reveals that Nigeria is one of the top 5 high incident TB countries in the world with India inclusive. So the point here is, if there are many of us Africans or blacks who are unaware of our so-called disease, this means there is a lot of work to be done to educate people about TB and this is why I continue to do what I do.
The feedback I get forms a part of the reasons I chose to speak up about my experience so that lives can be helped. No one deserves to go through what I experienced and definitely no child should be made to suffer because the mum is sick of an illness that could have been otherwise helped. Knowledge is power and in this case, ignorance is not bliss. I paid the price and now live with the consequence but others don’t have to.
With your busy schedule how do you make time for your family?
It is a challenge but I am motivated by my passion and determination to help others and when I remember this, I keep forging on. I however try to maintain a balance as each aspect of my life is important.
Apart from your book and B.E.E.P-TB what else are you working on?
I have commenced writing my second book which is gripping inspirational resource– a recommended must read when it gets published. I also have a blog site where I write on different subjects and contribute to a number of authors’ blogs and newsletters as well as a website.
And in addition to writing, I am into public speaking where I give motivational and transformational talks on various subject to audiences including organisations and students.
I have a forthcoming new project which I am keeping close to my chest for now so can only say, watch this space!
Thanks so much Esosa for your inspiring and educative story!