When My Body Forgot Me

The Beginning of Unravelling

At the beginning of this year, I faced a kind of horror I never imagined. It started with tingling, then numbness, on the right side of my body. This had happened once or twice over Christmas, and as someone with Functional Neurological Disorder, I told myself, Maybe this is just a change in my symptoms. But after the third or fourth episode, I knew it was time to seek help.

Searching for a Name

I told my neurologist something new was happening. Silence.

So I travelled across the country to get home and to the hospital. When my neurologist finally reached me, she said it was hyperventilation syndrome.

By then, the right side of my body was weak, in ferocious pain, my face drooping. It was just after New Year’s, and my nearest hospital couldn’t admit me. Doctor’s offices were closed. My options were limited. I kept thinking: I’ve had a stroke.

The Diagnosis That Changed Everything

The diagnosis finally came: hemiplegic migraine.

A hemiplegic migraine is a rare kind of migraine that causes temporary weakness or paralysis on one side of the body, often mimicking a stroke. It can also bring vision changes, confusion, and trouble speaking. Most people recover within days. I was one of the unlucky ones who took weeks and months for the brain to recover fully. These migraines are unpredictable and exhausting, not just physically but mentally, because they affect how the brain itself functions and heals.

When I heard the diagnosis, I thought, OK, this will pass in a few days. But when my new neurologist, not the one who called it panic attacks, told me I would need three months off work to recover, I was in shock.

Living in the Twilight Zone

When something happens to your brain, you do not realise it. You think you are fine, thinking and speaking as usual, but you are not. It is like living in a twilight zone. I did not see how unwell I was until I tried to write a four-line email to my doctors. It took me 45 minutes.

That is when I knew: I am not well.

At the same time, thoughts raced. Three months off work? How would that even work? What would happen to my job, to me?

Finding My Way Back Home

It took two weeks to get home. I spent one week in the hospital; things went wrong, and I had to go back. Altogether, I was in the hospital for two weeks. When I finally got home, my family and I focused on recovery: finding therapists, organising medical support, doing whatever we could to get me better.

But the impact showed up in small ways too.

My hair was in braids, but I did not have the strength in my right arm to undo them. Once, I tried to get up off the floor, forgetting my weakness, and fell right back over. That is when it became real.

Small Losses, Sharp Edges

Even typing WhatsApp messages was nearly impossible. My friends kindly pretended not to notice my mistakes. I could not type because even when I knew what I wanted to say, my fingers would not hit the right buttons. Still, my dear friends made sense of my nonsense.

It stung when a friend, instead of asking how serious my injury was, said, “Why is your grammar so bad?” even after I had told them I had a traumatic brain injury.

It felt easier to tell friends who lived in other cities and countries than the ones closest to me. And understandably, it was awkward for them. Do they come and visit? Do they even want to see me like that? Do I want to be seen like that?

When Dignity Slipped Through My Fingers

I went to a hair salon, just a wash and blow-dry, nothing fancy. Even getting there was exhausting; I limped in, already emotional from the effort. At the reception, no one seemed to notice or care. After my wash, I stumbled away from the basins, misjudging both the steps and my own strength, and became overwhelmed. I started crying in public, right there in front of everyone, yet not a single person tried to comfort me or even offered water. I cried for the rest of the appointment.

As my sister said, I should have left, even if my hair looked a mess. Why did I accept being treated with less dignity than I deserved? It was a horrific, humiliating experience. I am still not over it.

What the Body Remembers

The repercussions kept growing. Even in January, I knew my hearing had taken damage. I tested then, hoping for reassurance. For a minute, I had it. But no, it became clear that the thing I had been pushing away was now far more imminent: cochlear implants.

I could not drive for months. My limits for fatigue, stress, travel, and life in general are lower than ever, and they were not high to begin with. Now, I am probably more susceptible to strokes.

The migraines, never a factor before, are now a constant. Pain varies, not presence. When I hit pain level seven, I start considering a painkiller. At eight, the medication begins. At nine, all action ends. At ten, that is days of non-function.

The Weight Carried by Others

And my child, my poor child. When she told me, “I did not know if you would make it,” my soul left my body for a minute.

The toll on the family is profound. I will not even get into that here, except to say that my gratitude to them is beyond measure. Without their support, I would have folded long ago.

The Kindness I Did Not See Coming

Even in all this, there were angels behind the scenes. I have not seen all of them, the people who quietly did things to help me through. Many of them were at work, taking on the invisible labour that made an extended sick leave possible.

My family and friends, each in their own ways. My medical team, God bless them, fought and advocated for me in so many ways this year. For every person who drags you down, others lift you up, keep you going, and remind you that this struggle is worth it.

Learning to Speak Up for Myself

Medical gaslighting is real. Real and dangerous. If you do not learn to advocate for your own health, the consequences can be dire. I have learned to ask questions, to insist on being heard, and to push back on arrogant assumptions. Trust in the system can be fragile. Belief in yourself cannot be. And if the doctor makes you feel bad about yourself, find another one. Life is too short to put up with bad medical practitioners.

Choosing to Keep Showing Up

But you know what? Work continues. Life is not a continuous sob story. Life is meant to be lived. And I intend to live it even if I have to make up for it with a lot of sleep afterwards.

At this point, you may be wondering, why am I telling this story? Why am I sharing this?

When something like this happens, you have to let it out eventually. It is too big to hold in.

It is also a way for me to acknowledge the journey this year has been. Next year, another journey begins: I have to learn how to hear again. The cochlear implant journey will begin.

So I have to recognise that I went through something and came out the other end. I am not the same as I was. I will never be the same. It hurt; it knocked me to my knees. But with support, I was able to get up and keep walking.

Yes, I wobble. Wobbling is now a part of my life. But I am still here.

And I intend to keep showing up. Even when it sometimes makes people uncomfortable, I will do my best to show up. This is my life. I intend to show up in my life.