Survivor blog: The Medical Merry-Go-Round

Week 2: The Medical Merry-Go-Round

The summer holidays have finished and the fun fair on the heath where I live has packed up along with its merry-go-round and merry making. My traumatic injury got me onto the medical merry-go-round without a ticket, and no candy floss, music or pretty lights adorned the route. 

To be honest from the start my inpatient experience was not been that bad. As soon as I was admitted to hospital at the Royal London, I had excellent care. Maybe it helped me being 'one of their own' (ie a clinician -  physiotherapist). But even then the experience was fraught with challenges, miscommunication and delays. I was subjected to repeated assessments, waiting for medications, waiting for clearance for braces to come off, being told prognosis in guarded terms, with no absolutes. Forget merry-go-round, try roller coaster!

However, my hospital experience was easy in comparison to the transition to being an outpatient. Discharge home was quite possibly the hardest bit of my rehab. So be warned! 

Endless forms and appointments. Disability living allowance, blue badge application, outpatient physio appointments, appointments with rehab consultant, more (invasive) tests. All with the cherry on top: living unsupported! No chirpy physio or kindly OT, or slightly brusque nurse to brighten the day. No work to distract. And through the passage of time, being part of this endless cycle, round, of appointments increased my feelings of resentment and disappointment.

As an outpatient, the cycle of appointments can feel endless. You want so much to get your final discharge and get off the medical merry-go-round.

I remember attending one follow up appointment, and I went in sure that I was going to be discharged. I had already been discharged from one consultant. This was the last one, my break for freedom! I could almost hear the soundtrack to Mel Gibsons Braveheart ringing in my ears! In I went confident (minus the blue face paint), perhaps smug (and naive). Hoping I was entering on MY terms.

As you can probably guess I wasn't discharged. In fact I have never been. What shocked me was the hot angry flush and the cold salty tears that over took me. It was a blow not really medically but psychologically, I was so keen to get free.

As I discovered that day, we as humans live in boundaries; time, our bodies, our environments; these boundaries can be pushed to a certain extent: some of them being malleable, plastic even. They may change but they are there. There are limits. Being human means in some way we have to submit to this. We often perceive boundaries as bad, entrapping us; and for the brave, only there to be broken. But essentially they are good.

You see I need to be monitored. For my own long term and even short term health. Without it, I could be at risk of infection and further damage leading to further and more serious medical treatment. So even though I don't like, it even though I'd like to be free, I can't be and it is good. It doesn't feel it, but it is. 

So my advice is endure and even enjoy your medical merry-go-round. Some days will be 'merry and bright'; many won't. Push your boundaries, but don't obliterate them. Be wise. Listen. Reflect. And life will go on and around. 

Written by Alison Lyddon (Spinal Cord Injury C4 incomplete) MSc, MCSP, FHEA. 

Published 22nd September 2015

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