Memoirs Of My Heterotopic Ossification Life
It was a bright and beautiful morning in Aj city. I’d spent the night with a neighbour who was home alone and couldn’t sleep in their big mansion alone.
I never knew this day would unveil the big secret I’ve been hiding for some months.
I had a little disagreement with my aunt whom I was living with, it was a usual thing between us.
But somehow, the wrapper I had on my waist dropped and she was surprised to see such a big tumor on my right hip.
I’ve noticed this unusual growth on my hip, but I wasn’t bold enough to show or tell her about it.
It started like a small boil which I think resulted from a beating and the cane stripe on that particular spot refused to heal.
“What is this on your hip?” she asked and out of fear or whatever it was I had for her then, I quickly replied that I fell from a swing in school”.
“But there is no swing in your school” she said and I realized my mistake, I should have told her the truth, but I wasn’t bold enough.
I quickly found another lie “it happened in the playground fifteen minutes walk from school(there was truly a playground a bit far from my school)”.
She examined the growth and went to the nearest chemist and bought some antibiotics and analgesic.
“You wont put me in trouble” she said as she gave me the drugs.
Later that evening, she massaged the tumor with hot water. Being a nurse, I felt she knew what she was doing.
During the massage, she realized I could only bend my right leg halfway and she immediately understood the reason why I’ve been walking with a leap for some months now.
The next day she massaged it again, but in a more terrible way.
She made me bend my leg to touch my butts, but it was too stiff.
After much persuasion to bend the leg on my own, she decided to help me with it and she turned to a ferocious physiotherapist.
I was laying down on my chest and she did all she could till my leg touched my butts. She examined the other leg and saw a need to bend and twist that too, maybe to prevent it from becoming like the other leg, I’m still not sure.
All I could remember was the pain I experienced while all this was going on.
That day marked the beginning of a new life for me.
From the moment I tried to stand up from the floor where this pernicious therapy took place, till this very moment, I couldn’t use my legs properly anymore.
I felt my legs were out of joint. Few hours later, both knees were swollen three times its normal size.
October that same year 2003, I resumed secondary school.
My school mates where surprised to see the new way I walk, they knew I leaped before, but this new steps was a wonder to them.
The senior students mocked the way I was struggling to climb the stairs to my new class, but my classmates asked me to shun them and they helped me up the stirs to my classroom.
I cried thinking about this new way of life. “Is this how they’ll always mock me?” I thought to myself and I soon found an easier route aside the stirs that was easy to climb without anyone trying to assist me.
Life was terrible, my knees were getting stiff. I don’t know what this sickness was and my auntie didn’t see a need for me to go to the hospital even though she is a nurse.
I fell down severally, I couldn’t get attuned to my new style of walking. I was often in excruciating pain. My life had a new painful dramatic turn.
I had only seen my mom twice in six years. We were in the same state, but far away from each other.
I could barely recognize her when she came visiting in January 2004.
After much deliberation, I had to follow her home with the aim that my home town had a specialist hospital.
I was glad to leave Aj, but somehow I wished I could go back. All my early life was spent there.
My mom was so scared seeing me in that condition and I was surprised to see my sisters crying when I got to my home town.
I didn’t see anything wrong with me, at least I still did all the house chores back in Aj.
I still believe my mom didn’t sleep that night. She woke me up as early as “God knows when.”
Luckily, She is a nurse in that hospital.
When I got to the hospital, I had a special treatment that I never had all my life. Everyone greeted me specially and some who knew me before started crying, I didn’t understand why they did that.
After much test and X-rays, I was admitted to the hospital.
I was told I’ll be going to the theatre later in the evening. I had seen people being taken to the theatre in the hospital where my aunt worked and they always brought them back like dead bodies on a stretcher.
I was taken to the theatre the following day and I was so scared by all the lights and instruments around me.
I woke up in my hospital bed with much pain on my right hip.
I later knew it was just a biopsy.
Upon discharge a week later, I was told not to be far from the hospital and they still couldn’t diagnose me.
I had many diagnosis like, bone tumor, osteoporosis, cancer of the bone and many more till it ended with a query cause.
All through January 2004 i was in and out of the hospital due to the continual pain that made me faint sometimes.
I couldn’t make it to My last appointment with a specialist orthopedic doctor. My mom was there with all the test and X-rays.
Years later she told me the doctor had told her to give me her best cause there is little or no tendency I’ll see the end of 2004. “I’m sorry Ma, you’ll loose her” she said, trying to recall the doctor’s words.
Life in my hometown was different from the life I lived in Aj. While everyone will mind there business and go on with their daily activities, people in my hometown will poke nose and will ask questions about things that doesn’t answer to them.
Both knees were getting indurate by the day and it affected the way I walk.
Gradually the stiffness progressed to my hand and my right hand was getting stiff upwards in an akimbo way.
No one knows the form of this sickness and even with an advice from the hospital to visit another specialist orthopedic hospital, we didn’t see a reason to adhere to the advice.
October 2004 I resumed school in my hometown. I’d spent almost a whole school year at home and even with the plea to have me in my normal class, the school didn’t consent.
I had to repeat JSS1.
My new school and new class helped me ease the boredom of sitting at home doing nothing. I was really embarrassed cause I was the only one with a different chair in the whole school.
All eyes was on me as the only student with a health challenge.
I couldn’t use a walking aid or a wheelchair, which made it worse to cope sometimes. But I had this big chair and a funny locker that I use in school.
It got to a stage I couldn’t scrub my legs while bathing and I saw a need for someone to help me out when my knees downward was becoming dark than other parts of my body.
I hate the idea of having anyone in the bathroom while I’m bathing, but I had to succumb to that.
I couldn’t and still can’t sit on anything low and I can’t walk on or climb up anywhere too high, even if it’s a little high.
Every August was a marathon of severe pain for me, I don’t know why it was August alone.
But August 2006 changed my life.
It was during the long vacation and I was struck with the pain again. I think the pain was more severe than usual and I started saying some scary things. This made me end up in the hospital for a week.
I was discharged a week to resumption and everyone felt I couldn’t resume yet. “Maybe you should rule out this term and resume next term, you’ll be stronger then”. My mom said when I mounted pressure about my resumption.
Even though I didn’t have friends, the school walls was the only place I found joy. Though I was always ashamed and embarrassed, I found solace in the school environment.
I was at home doing nothing all through first term and second term, I got my things ready to resume, but I got hit by the big bomb “You can’t resume yet. We have hired a home teacher for you. You can write your junior secondary school exams from home”. Said my mom.
I cried! I hate the idea of a home teacher. Little did I know I’ll never go back to school again till date.
When the teacher resumed, I cried the more. He said I didn’t need a textbook and he brought some primary school books to teach me saying “these are the books you need for your junior WAEC exams”.
My mom believed him, but I knew those books very well. I used those books as an attachment to our textbooks in primary four.
I tried to explain to my mom, but she felt I’m saying these due to the hatred I had for the man.
Well, all thanks to him, I never wrote any exams and he thought me for a year and eight months before my mom considered my words.
My bones kept growing stiff after each episode of pain and there was some certain growths like boil on some certain parts of my body and there was white pulse with bony particles oozing from the the growths.
My last visit to the hospital for checkup was 2008, the hospital had an orthopedic specialist from the United States.
He examined me and my X-rays and he still couldn’t diagnose it. He said my muscles were turning into bones, but he will take my test results with him to the states for proper reading.
He sent a mail in 2009 and said he’s sorry, he couldn’t find any diagnosis for me and I might end up on a wheelchair.
Days turned into months and months became years and my health was regressing.
I attempted suicide severally and all I wanted was to end it all. I overdosed on sleeping pills always, but I didn’t work. It only made me unconscious for a while.
I easily feel stressed out and my hands, especially my right hand was already bent and stiff to my elbow joint.
I became reclusive, I felt I didn’t belong to the society. I didn’t believe in myself and no one was there to help me understand myself.
I also shy away from my immediate family and I didn’t have any friends.
I took numerous oils all in the bid of being healed. I had different encounter with different Pastor’s cause we believe my challenge was spiritual.
2014 depression set in again and I tried to cut my wrist, but somehow a voice told me I wasn’t the only weird one and my condition isn’t completely strange.
I began a research on ossification(that was the last diagnosis I had). I searched all through Google and Wiki, I felt bad when I couldn’t get any link to my condition, but I relentlessly kept searching.
I found a diagnosis after a long while of misdiagnosis(I had diagnose myself with the wrong type of ossification). My condition is a rare bone, muscle, tendon disorder which is difficult to diagnose. It’s called Heterotopic ossification.
Heterotopic Ossification (HO) refers to the formation of lamellar bone inside soft tissue structures where bone does not normally exist. This process can occur in structures such as the skin, subcutaneous tissue, skeletal muscle, and fibrous tissue adjacent to bone. In more rare forms, HO has also been described in the walls of blood vessels and the cause is mainly trauma to the affected part.
It has no known cure, but it can be treated at the early stage.
The tumor on my body is the formation of extra bones in the wrong place.
Knowing this brought me so much joy. Even though I wished we could take my findings to the hospital and see maybe there’ll be any corrections on my bones surgically or via therapy, but there was always an excuse “no money”!
Since I knew more about my health, I knew I was half against the battle and the excruciating pain subside on its own. The growth melted away and left me with scars.
I still have some slight pain that’ll keep me in bed sometimes, but I’m doing just fine than when I was living in the dark about my health.
I still hobble and my hands are still stiff to my chest.
Dear Nigerian’s, I know and believe there are Spiritual forces around us and the hospital bills is not really interesting, but can you shun this facts and save a soul from pain?
I believe most people who are dead today might still be alive if we took extreme measures to help them.
Hi, I’m Fikayo and I’m living with a rare disease that affects my bone and I didn’t see reasons to visit the hospital.
Now I know it wasn’t spiritual and I’m not the only WEIRD one.