WHAT CIDP LOOKS LIKE TO THE PEOPLE WATCHING

On Esther, Tiara, and Adeyemi and What They Gave Without Knowing How Much It Cost

By Ayoposi Ojelabi · Published: 04 June 2026

Every essay I have written about this illness has been written from inside it.
From inside the ICU bed. From inside the silence of a cuffed tracheostomy. From inside the frustration of a body that stopped cooperating. From inside the long nights and the slow mornings and the months of progress measured in movements too small for anyone else to see.

This one is different.

This essay is about what the illness looked like from the outside. Specifically from the outside of three people who were close enough to see everything and stayed anyway. Not because they were the only ones present during this journey. But because they were the ones who truly understood it from the very beginning until now.

Esther. Tiara. Adeyemi.

Esther

I will say this clearly. Esther is one of the strongest people I have ever known.

Not strong in the way people mean it when they say it as a compliment to someone who is struggling. Strong in the specific, practical, sustained sense of a person who decided at some point that this situation would not break either of them, and then held to that decision through every stage of what followed.

She believed in me more than I believed in myself.

At the most critical moments in the ICU, when I could not speak, when the alphabet chart was the only way anything I needed could be communicated, she would come. She would hold my hands. Tiara would be there beside her. And they would sing together, as a family, in a room full of machines and monitors, as though the room were anywhere else.

I watched her face during those visits.

She never let it show. Whatever she was carrying outside that room, whatever the weight of it was, she did not bring it to my bedside. She acted normal. She behaved as though this was a situation with a clear and positive outcome, as though my survival was not in question, as though the version of the future where I came through this was the only version she was considering.

I knew it was difficult for her. Of course I knew. A man in the ICU for months, a daughter to raise, a home to manage, a career to sustain, a husband who could not contribute to any of it. The cost of that is not invisible to the person causing it even when they cannot do anything about it.

But she never made me carry the cost of her difficulty. She showed up with her full positivity every time, and she left whatever else she was managing outside the door.

I had suicidal thoughts during that period. Dark nights when I did not want to see another morning. I could not tell her. Not because she would not have listened. But because of the positivity she was radiating so consistently that I did not want to be the thing that broke it. Her belief in my survival became something I had to protect. In protecting it, I protected myself.

She did not see my illness as something I would not survive. Even at the point when I felt most hopeless, her certainty about the outcome was so unwavering that it became the thing I borrowed when my own ran out.

I do not know what it cost her to maintain that. I think it cost her more than she will ever say. But I know what it gave me. It gave me no choice but to keep fighting.

Tiara

I genuinely do not know how to describe my daughter.

She is my angel. I say that not as a sentimental expression but as the closest word I have for what she actually is. Because what she gave me during this illness, she gave without understanding what she was giving, without calculation, without any awareness of how significant it was. She simply loved her father and showed it in every way available to a small child.

She knew I was sick. Children understand more than adults assume they do. She knew the hospital was serious. She knew the machines were important. She knew her father was not the same as he had been.

And she responded to all of that by loving me more intensely than before.

She would climb onto my ICU bed just to kiss me. Not cautiously, not carefully, the way adults approach a person connected to machines. She climbed up and kissed me the way children kiss their fathers, without ceremony, because I was her father and that was what she did.

She would sit on my lap and wrap my hands around her even when there was no movement in my hands. She would arrange my arms herself, position herself in them, and settle there as though nothing was wrong with the picture. My hands could not hold her. She held herself in my arms anyway.

When I was being wheeled in the wheelchair, she would climb onto my lap and sit there for the journey. Every time. As though a wheelchair was simply the vehicle her father used and she was the natural passenger.

She would examine my gastrostomy tube with the curiosity of a child examining something new and interesting. No fear. No distress. Just attention.

She told me she would bring me doughnuts in the hospital. With the complete seriousness of a small child making a significant promise.

And every time she came to visit me in the ventilation unit, she brought flowers. Not bought flowers. Yellow flowers she had picked herself, somewhere on the way, pulled from wherever she found them. She brought them every visit. The same yellow flowers each time.

I do not think she understood what she was doing. I think she wanted to bring me something and she brought what was available to her. But those flowers, picked by small hands and carried into a ventilation unit, said something that no other gesture during that entire period said quite as clearly.

I am coming to you. I am bringing you something. You are worth the effort of finding something to give.

She is extraordinary. Truly. I say that as her father but I also say it as a person who watched a small child navigate a situation no small child should have to navigate, and do it with a grace and an affection that most adults could not have managed.

Adeyemi

Adeyemi never acted like I was sick.

That is the most important thing I can say about what he gave me and I want to sit with it for a moment because it sounds simple and it is not.

Most people who visit someone seriously ill adjust their behaviour. They speak more carefully. They choose their words. They carry a quality of concern that is well intentioned but also a constant reminder that the situation is serious, that the person in the bed is diminished in some way, that things are not normal.

Adeyemi did not do that.

He came as if nothing was happening. He behaved the way he always behaved. We insulted each other. We yabbed each other in the way that old friends do, the kind of banter that only works when both people know the history well enough to know exactly where the line is. He did not soften it. He did not treat me like someone who needed to be handled.

Even in the ICU when I had no voice, when the tracheostomy meant I could not speak, he would still come and yab me. Still the same energy. Still the same Adeyemi. And I would respond. Not with words because there were no words available. But with my face, with my expressions, with whatever communication was possible. He read it all and responded to it. The conversation continued even without speech.

I could ask him for anything without feeling like I was asking. That distinction matters more than it might appear. During serious illness, dependency becomes its own weight. Every request feels like a reminder of what you cannot do yourself. Every favour feels like it adds to a ledger you will never be able to balance.

With Adeyemi there was no ledger. He did everything without making me feel I owed him. He came, he helped, he yabbed me, he left, he came back. The cycle continued without ceremony and without the kind of gravity that would have made it harder to receive.

He made me feel normal. In a situation where almost nothing was normal, he walked in and made the room feel like something closer to ordinary.

What They All Did

I have thought about this a great deal since the worst of it passed.

What Esther did, what Tiara did, what Adeyemi did, were three different things. But they produced the same effect.

They made me feel like myself.

Not the person connected to machines. Not the patient. Not the diagnosis. Not the man who could not speak or move or contribute or stand. But the person I was before any of this happened. Esther’s husband. Tiara’s father. Adeyemi’s friend of over twenty five years.

The illness tried to reduce me to a condition. The three of them refused to see me that way. Not because they were pretending the illness was not serious. It was serious. They knew how serious it was better than most. But they chose, each in their own way, to keep relating to the person rather than the patient.

That choice, made consistently over months and years, was not a small thing.

It was the thing that made survival feel like something worth achieving rather than just something happening to me.

I was never alone in this. I have said that in other essays. But this essay is about what that actually looked like. It looked like a wife who sang at a hospital bedside. A daughter who picked yellow flowers on the way. A friend who yabbed you on the ICU bed when you had no voice to yab him back.

It looked like love. Specific, consistent, unremarkable in its daily expression, and entirely extraordinary in its cumulative effect.