Writings
These essays are drawn directly from lived experience of serious neurological illness.
They are written for patients, families, and those who want to understand what serious illness actually looks like from the inside.
These essays follow the timeline of illness, from first symptoms to intensive care, tracheostomy, and the long road of rehabilitation. Written for people living with the condition, their families, and those who want to understand.
01
What I Would Tell Someone Newly Diagnosed With CIDP
9 min read
You have just been told you have CIDP. This essay is written directly for you.
02
Living With CIDP: My Story of Illness, Intensive Care, and Recovery
5 min read
The full personal account from the first symptoms to intensive care, tracheostomy, and the long road of rehabilitation.
03
When Nobody Knows What Is Wrong: The Long Road to a CIDP Diagnosis
5 min read
The early stage of Chronic Inflammatory Demyelinating Polyneuropathy, before the diagnosis, before the name, is a period of profound uncertainty.
04
Why CIDP Recovery Can Be Slow Even When Treatment Is Working
6 min read
Steroids that made things worse. IVIG that helped, then stopped. The exhausting, nonlinear reality of treating a rare disease.
05
When CIDP Affects Your Breathing
5 min read
Most descriptions of CIDP focus on weakness in the limbs. This essay is about what happens when the illness reaches the respiratory system.
06
When CIDP Takes Swallowing
5 min read
Losing the ability to eat is not something most people associate with a neurological condition.
07
When Pain Becomes Ordinary
4 min read
A reflection on how repeated pain can become part of daily life and change your relationship with illness.
08
When CIDP Affects The Mind
4 min read
CIDP affects more than movement and sensation. This essay examines the cognitive and psychological dimensions of the illness.
09
When the Curtain Stayed Open
2 min read
On witnessing a medical emergency in the opposite ICU bed , the curtain closed too late, and what it means to lose sight of a crisis while the sound of it continues.
10
When Someone Dies in the Next Bed
2 min read
On lying in intensive care while someone dies behind a curtain a few feet away and the strange, disorienting fear of loss it can bring even in the darkest days of illness.
Where the illness essays follow what happened, these turn toward what it meant.
Where the illness essays follow what happened, these turn toward what it meant. They examine identity, meaning, and what recovery looks like from the inside.
01
When to Trust Yourself
4 min read
On the discharge that cost him his independence, the risk he took later that gave it back, and what it means to live inside a body you can no longer fully forecast.
02
Fighting the Wrong Battle
6 min read
Recovery from serious illness is not always the straightforward process the word implies. This essay examines what happens when the direction of effort is misaligned.
03
When Desperation Meets Manipulation
3 min read
On desperation, spiritual exploitation, and what it costs to stop trusting your own judgement when illness strips away certainty.
04
How I Continued Writing After CIDP Took the Use of My Hands
5 min read
When CIDP paralysed my hands, writing, the thing I had done most of my life, became physically impossible.
05
When the Technology Gets Better
6 min read
Assistive technology changes quickly. This essay is about living at the intersection of illness and innovation.
06
The Kind of Miracle I Was Waiting For
4 min read
I had been waiting for a dramatic reversal. What came instead was quieter and harder to name.
07
Guarding the Mind
2 min read
When the body cannot be relied upon, the question of mental integrity becomes urgent.
08
CIDP: When the System Hands You Over
5 min read
After ten months in intensive care, I transferred to a rehabilitation facility. This is what I found waiting.
09
When I Finally Accepted the Wheelchair
5 min read
When the wheelchair was first offered, I refused it. This essay is about what it took to change my mind and what changed when I did.
10
Living With CIDP: What It Costs the People Who Love You
6 min read
Every essay I have written about this illness has been from the inside. This one tries to account for what it looks like from the outside.
11
Tiara and the Quiet Strength of a Child
3 min read
My daughter did not stop being a child because I became ill. This essay is about her, and what I learned watching her adapt.
12
The Many Faces of Pain
7 min read
Pain in CIDP is not a single thing. This essay attempts a taxonomy of what it actually consists of.