How I Continued Writing After CIDP Took the Use of My Hands.
On Anger, Assistive Technology, and the Staff Who Sat With Me
Ayoposi Ojelabi
Writing was not something I planned to do.
It was not a decision made calmly or with any sense of purpose. It began during rehabilitation in Southport as something much more immediate than that , a need to pour out anger, to document what had happened, and, if I am honest, to fill the long hours with something other than the ceiling.
I needed a distraction. Writing became that distraction. What it became later was something I could not have anticipated from where I started.
The First Problem
The first problem was practical and significant.
I could not use my hands.
Chronic Inflammatory Demyelinating Polyneuropathy had taken my upper limb function to the point where typing was not possible. My hands were too weak to operate a keyboard and too unreliable to control a phone screen consistently. I tried anyway. I would struggle with the touch screen, moving slowly through letters, losing words, losing sentences, the frustration of the effort undoing whatever I was trying to say.
It added to the anger rather than releasing it.
So I stopped.
The Two Staff Members
What came next I am still grateful for.
Two care staff members at the rehabilitation centre agreed to help me. They would sit with me, and I would tell them what to write. I spoke and they typed. It was slow by some measures but it worked and more than that, it gave the writing a certain quality of presence. Someone was there to witness the words as they formed when I could not yet record them myself.
I want to say clearly how much I appreciated what they did. It was not part of their clinical role. They gave their time and their patience to something that mattered to me, and without them the earliest writing would not exist.
The 3am Problem
But there was another problem that the two staff members could not solve.
Ideas do not arrive on schedule.
There were nights , many of them when I woke in the early hours with something I needed to document. A detail from the ICU. A specific memory from one of the transfers. Something that had surfaced from the months I had spent unable to speak, now pressing to be recorded before it faded again.
The staff were not on duty at 3am.
By morning, the thought was gone.
I lost more than I can account for to those hours. Things I had been waiting to write down, disappearing before I had any way to capture them. That was its own kind of frustration , not the anger of the illness, but the specific grief of losing words you had found and then could not hold.
The Device That Changed Everything
Approximately two months into rehabilitation I contacted the North West Assistive Technology Service, whose assessment and support provided the head-tracking system that made independent writing possible again.
My first contact with assistive technology had actually begun earlier during my admission at Salford Royal Hospital, where a physiotherapist referred me for support with phone access when I could no longer control my device reliably. That earlier referral became an important bridge to the later support that allowed me to return to writing.
What they provided changed everything.
It was a USB device connected to my laptop, paired with a small sensor attached to my glasses. By moving my head I could control the cursor. I could navigate the screen, select text, and type , not with my hands, but with the movement of my head against the technology designed to translate it.
The relief I felt when it worked properly for the first time is difficult to describe. The words I had been trying to reach were suddenly accessible again. I could write at a pace that matched my thinking. For the first time since losing the use of my hands, the words were no longer waiting for someone else’s availability.
I could wake at 3am, sit up, and document the thought before it left.
The backlog of things I had needed to say began to move.
What Happened in Seven Months
Within seven months of starting to write I had published two books and designed and launched a website.
People in similar situations sometimes ask me how that was possible. How someone in long-term rehabilitation, still dependent on ventilatory support, still relearning basic physical functions, could produce that volume of work.
Part of the answer is the assistive technology , without it the writing would have remained dependent on other people’s schedules and availability.
Part of the answer is that I had a great deal to say and a significant amount of time in which to say it. Rehabilitation involves long hours. The writing filled them with something purposeful.
And part of the answer, I think, is that the work mattered to me in a way that made the effort feel worthwhile even when the process was difficult. I had been through stages of this illness where nobody who had experienced the same thing had written about it in a way I could find.
I wanted to create what I had needed and could not locate.
My background as a network engineer also helped. The technical comfort with devices, navigation, and problem-solving made the transition to assistive technology less daunting than it might otherwise have been.
Why I Am Writing This Down
I am writing this particular piece because the question of how I write comes up often in the CIDP community, from people who read the essays, and from others navigating disability who are wondering whether writing is possible for them.
The honest answer is that it is rarely straightforward, and the path to it often runs through other people’s help and through technology that most people have never heard of.
The North West Assistive Technology service gave me back something I had assumed was gone. The two care staff members gave me a bridge before that technology arrived. And the anger that started the whole thing gave me enough energy to keep going until I had the tools to do it properly.
Writing began as a distraction.
It became a record.
And the record became something I hope is useful to people who are still in the middle of what I was trying to describe.
Ayoposi Ojelabi|AUTHOR 