ONE-YEAR MEMORIAL FOR LATE AFRIMA BOSS’S WIFE, MODUPE DADA, HOLDS SUNDAY IN LAGOS

Beautiful, strong, and deeply spiritual, Fikayomi Aaron has walked a path many couldn’t imagine. Diagnosed with a rare bone disorder at a young age, she endured years of pain, rejection, and emotional trauma — yet emerged stronger, finding purpose through faith and writing. At just 10 years old, her life took an unexpected turn when unexplained pain unravelled into heterotopic ossification, a rare condition that causes bones to grow abnormally in soft tissues.

In this exclusive interview, the Kogi State-born writer and publishing coach opens up about living with disability, battling suicidal thoughts, and how she found meaning in her pain — a story of resilience, faith, and unwavering hope.

What do you do for a living?

I’m a writer, ghostwriter, publishing coach, and I also help authors publish their books, both digitally and in print. I live in Egbe, Lagos State.

If you could describe your life in one word since your condition began, what would that be?

The truth is, I didn’t have a clear diagnosis at first. My family and I kept moving from one hospital to another, guessing, assuming, and treating everything at once. For years, no one knew exactly what was wrong.

My hands became stiff and locked upward. My joints gradually froze. At different times, doctors called it osteomyelitis, then a bone tumour, and so on. It was a journey filled with confusion, pain, and uncertainty.

It wasn’t until 2021, just four years ago, that I finally received an accurate diagnosis. By then, I had spent years living in the dark, not understanding what was happening to my own body.

Everything started when I was 10 years old. I wasn’t born physically challenged — I was a happy, energetic little girl chasing dreams like every other child. So when my body began to change, it felt like watching my life take a turn I never saw coming.

If I were to describe my life since then in one word, it would be challenging — very challenging.

There’s a different kind of pain that comes from losing what you once had: mobility, strength, freedom. I remember the frustration, the anger, the long nights of tears. I remember asking God, “Why me?” But over time, I realised that even if life didn’t give me the story I expected, I still have the power to rewrite the ending.

As a child, I dreamed big. I wanted to be a nurse or a journalist. I admired women like Funmi Wakama and Aisha Bello — strong, confident, and eloquent. I would sit in front of the TV and say, “One day, I’ll be like them.”

What were the early signs you noticed before your diagnosis?

At 10, I started finding it difficult to walk or do simple tasks. I noticed a tumour on my right hip, and it became hard to bend or move my leg properly. Gradually, more tumours developed on the right side of my body. Anytime I fell or someone hit me, another one appeared.

We moved from one doctor to another because frequent medical checkups were expensive. My father died when I was two, so it was just my mum and six children. Travelling for tests was difficult.

When were you officially diagnosed?

I finally got a proper diagnosis in 2021, after a corrective surgery on one of my hands, which had been completely locked upwards. The doctors managed to straighten it, but I still can’t use it. My other hand is still stiff upwards.

The medical report confirmed I have a rare bone disorder called heterotopic ossification.

Aside from mobility challenges, did you face stigma in school?

Honestly, most of my peers were kind. But even in a crowd of 100 friendly faces, there will always be two or three who mock you.

Some classmates mimicked the way I walked. I would hear whispers like, “That girl in that class who can’t walk properly.”

One of my most embarrassing moments happened in school. I was 12, and one day, I was so pressed but couldn’t walk fast enough to the toilet. I urinated on myself in class. Some laughed, others helped me clean up. It was humiliating.

That must have been tough. How did you cope afterwards?

The next day, I told my mum I didn’t want to go to school again, but she insisted. I went reluctantly.

Sometimes my siblings had to carry me awkwardly up the stairs to my classroom. I’d beg them to drop me at the door so I could walk in on my own. Still, some classmates mocked me. It was painful.

At the point of diagnosis, did the doctor tell you the cause?

Yes. They said it’s a rare condition affecting soft tissues and tendons, often triggered by trauma or injury.

Have your parents ever treated you differently from your siblings?

No. I’m the fifth of six children, and my mum has always been loving and supportive. She’s my biggest cheerleader.

Have you ever felt misunderstood, even by people close to you?

Yes, many times. Especially when it comes to faith. I believe in miracles — because I am one myself. Doctors once said my skeleton would freeze and that I might not live beyond 18. But here I am at 32, still standing.

What do you miss most about your old life?

I miss going to school. I didn’t go beyond JSS 3 in 2006 because accessibility and mobility were difficult. I’ve since taken online courses and still hope to return to school someday.

Living with a disability has reshaped my understanding of life and resilience. There were moments I wanted to give up. I attempted suicide more than four times — but none worked. I believe I’m still here because someone needs my story.

What keeps me going is knowing that my existence gives others hope — especially my mum. I can’t give up after all she’s been through for me.

How old are you now?

I turned 32 in February this year.

Have you had to correct people’s misconceptions about your condition?

Yes. A family friend once told me to confess if my mum offended me, suggesting maybe I was a witch. I was only 13. It broke my heart.

In 2009, a nurse relative gave me some drugs, hoping they’d help. I reacted badly. My stomach swelled due to fluid buildup — it took several surgeries, the last one in 2024, to remove it.

Doctors later found that trauma triggers tissue calcification in my body. Some of my internal organs, including my cecum, are now affected.

You mentioned undergoing surgeries. Are you better now?

Not completely. I have to manage it carefully. I’m on a special diet — mostly liquids and vegetables.

What keeps you hopeful?

I’ve survived suicide attempts, and I believe I’m still alive for a reason. When people see me, they see hope. I also think of my mum and her sacrifices — I can’t give up.

I’m currently writing a book titled “Is Disability a Burden?”, which will be launched on November 29th. It’s the first of eight books exploring disability and resilience.

People often say persons with disabilities don’t find true love. Has this affected your relationships?

Yes. Sometimes people date you out of pity or curiosity. But there are also those who love sincerely.

I’ve had a few serious relationships, but societal judgment made things complicated. My biggest fear is childbirth — how my body would cope. For now, I’m focused on my purpose and my books.

What message would you like to pass across to anyone living with a disability?

My message is simple: you are more than your condition. Your disability is a part of you, not the whole of you.

Living with a disability can be tough. Society may see your wheelchair, limp, or hearing aid before it sees you — but don’t let that define you. You are not an object of pity; you are a person of strength and courage.

Find your voice, tell your story, and connect with people who truly see you. Someone out there needs your story to find hope.

And finally, give yourself permission to dream again. You can still live, love, work, and make a difference. You are not broken — you are beautifully human, capable of shining in your own unique way.

Interview by Temitope Adetunji

Culled from Punch Newspaper