A Miracle in Time for Christmas A year of waiting for the right help By Dusty Wentworth

One year ago, as Christmas lights flickered across Norfolk, I sat in my wheelchair staring at a stack of unanswered job adverts. The season felt distant, muffled by exhaustion and uncertainty. I was no longer thinking about celebration. I was thinking about survival. In October 2023, I collapsed and was taken to hospital. I was diagnosed with Functional Neurological Disorder. Scans also revealed a brain aneurysm. I was told it was stable. At the time, the focus was on managing the FND symptoms that had abruptly dismantled my independence.

I was transferred to a neurological rehabilitation centre as part of my treatment. In April 2024, while still there, the aneurysm ruptured. What followed was a subarachnoid haemorrhage, a four-week coma, and a life that did not resume where it left off. Independence evaporated. Simple tasks became logistical exercises. I was left living with the consequences of brain injury, severe PTSD from military service, fibromyalgia, Functional Neurological Disorder, and full-time wheelchair use. None of these conditions behave predictably. All of them demand constant adaptation.

What I needed was not just care. I needed a personal assistant who could help me live day to day and help me keep moving forward. Someone who could support personal care and practical living, but also help me sustain the work that gives my life meaning. Writing, consultancy, and public commentary did not stop mattering because my body failed. If anything, they mattered more.

What followed was a year-long fight with systems that could not accommodate complexity.

The Endless Wait Begins

After discharge, I contacted every NHS outpatient service I was referred to. Each reviewed my case. Each declined. My needs were described as too complex. PTSD episodes that lock me into flashbacks. Fibromyalgia flares that make even fabric painful. Functional Neurological Disorder that brings tremors, weakness, and sometimes silence. A nervous system recovering from catastrophic injury.

I was told repeatedly that nothing suitable existed. Referrals dried up quickly.

Care agencies were next. I contacted dozens. Their model was built for routine elderly care, not a disabled veteran in his fifties whose health fluctuates hour by hour. Fixed rotas, rigid packages, narrow task lists. Medication prompts and hygiene, yes. Flexibility, no. There was no space for symptom spikes, creative work, or days when writing mattered as much as washing. Fees were high and the service limited. Staff turnover was constant. Inflexible scheduling clashed with the reality of my conditions. The NHS could not handle complexity. Agencies could not bend.

Taking Control

Direct employment became the only option. I wrote job descriptions that reflected reality. Assistance with transfers, dressing, and medication management. Day-to-day living tasks when brain fog made organisation impossible. And crucially, support for my work. Managing correspondence, scheduling content, research, outreach, and helping me build something sustainable from a life disrupted by injury.

I posted everywhere. Local boards. Online platforms. Veteran networks. Weeks passed. Then months. Silence.

Doubt Creeps In

By spring 2025, doubt had set in. Applications arrived sporadically, but none truly fit. One candidate had care experience but froze at the mention of PTSD. Another was confident administratively but unwilling to manage physical support outdoors. A third had business skills but no tolerance for chronic pain episodes that stop me mid-sentence. I was honest in interviews. This was not a neat role. It required constant adjustment. One hour might involve managing a pain flare. The next might involve editing an article on masculinity or disability. Enthusiasm often faded once the full scope was clear. My conditions do not follow a script. FND can take my voice without warning. Fibromyalgia can knock me flat for days. PTSD can be triggered by a sound or a headline. Add cognitive fatigue from brain injury, and managing care and work alone became unsustainable.

By autumn, hope had thinned. Christmas loomed again, bringing with it the familiar isolation. 

A CV That Changed Everything

In November, an email arrived. Attached was a CV and a cover letter from David, a local university student. He had experience supporting vulnerable adults, including mobility assistance and mental health crises. He was studying cyber security.

What mattered was not the credentials alone. It was his tone. Calm. Direct. Unflinching. He wrote about understanding complexity through personal experience. About adaptability. About dignity. About my writing and why it resonated.

We arranged an interview for early December. David arrived on time and unguarded. I did not soften anything. I described the realities. Morning spasms. Pain flares. Flashbacks. Cognitive fog. The constant unpredictability. He listened carefully and asked practical questions. Not polite ones. Useful ones. By the end of the interview, it was clear. I offered him the role. He accepted immediately. His start date was 15 December.

The Difference Competence Makes

On his first day, we covered everything. My conditions in detail. Triggers. Medication timings and side effects. Transfer protocols. Emergency plans. Then the work. Writing schedules. Consultancy goals. Long-term projects I had been holding together alone.

I expected a learning curve.

The next morning, David arrived with a written summary. Every detail accurately recorded. Medication cross-referenced with symptoms. Condition timelines. A flexible weekly structure that allowed for flare-ups and university commitments.

Alongside it was a combined care and work plan. Practical adaptations for my workspace. A realistic content schedule. Secure systems for managing files and correspondence. Clear priorities.

It was meticulous. Calm. Professional.

For the first time since leaving hospital, things moved forward without me having to hold everything in my head. Work did not stall when pain surged. Opportunities were not missed because my voice failed. I could focus on thinking and writing, not firefighting.

Christmas, One Year On

Week two brings us to Christmas. It is early, but the difference is undeniable. Tasks are completed. Projects progress. Plans feel possible rather than theoretical. Care no longer consumes all available energy.

The year was brutal. NHS dead ends. Agency rigidity. Bureaucracy. Doubt. The constant fear that needing too much meant being left with nothing. This Christmas is quieter. Not celebratory in the conventional sense. But grounded. Stable. For the first time since my collapse, I am not managing alone, and that is enough.

Merry Christmas.

#Dustywentworth

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