GUEST POST : IN THE LAND OF TORIA

While I was in hospital, my friend Victoria sent me photographs of her garden. There are gardens in my hospital, one in particular that I claim as my favourite, but while in a shared ward or private bay, there is no green to be found. Blue and cream aplenty but no living, moving green. So I thought I would share Victoria’s photos with you, with her permission, so you can see what cheered me...

Of course there are other ways to escape while in hospital. My new friend Mary, with the wandering mind, was not in Addenbrooke’s at all... she was in Selby in Yorkshire, and sometimes in the mining and weaving towns of her youth... sometimes she would give me directions to the cemetery nearby and sometimes she accepted that I was not real, I was a visiting spirit to whom mundane things of the mortal world would be of little interest. ‘How long have you been here, like this?’ Mary asked, her hand fluttering, indicating my other worldliness ... ‘Oh, I come and go,’ I answered. We spoke exactly the same language, Mary and I, both of us being of this world and not of this world. It’s all very mysterious, we both agreed.

When I was finally discharged I said goodbye to all my ward mates except Mary. I couldn’t bring myself to utter the finality. Mary had said I would return to her mind from time to time, and I told her I would never forget her. Mary Longbottom of Selby, Yorkshire. So why say goodbye?

(All photographs, except the last, by Victoria Kingsley-Pallant)

HALLOWEEN GHOSTS CAN BE SCARY

My friend Colette and I spent a few hours earlier this month recording a conversation we had about life with auto-immunity, the complex relationship we have with language - the patient-physician dynamic as well as the social dance. I edited it, divided it into two parts, and posted it on YouTube.

Colette is truly brilliant at the jigsaw puzzle of piecing together life in broken particles - her mind sees connections and after 40 years of being in a health-wilderness herself, she is now able to offer extraordinary support to others in the wilderness. In my case, Colette offered up the term PTSD. I may never have applied that to myself but I can see now that Post Traumatic Stress is exactly what I suffer from. 

I had a difficult appointment at the hospital a few days ago. In August, while sick with a campylobacter infection that had spread into my bloodstream causing sepsis, my consultant visited. I had asked her registrar the day before about Benlysta, the first drug to ever be licensed for Lupus, and my consultant felt she needed to inform me personally that I was not sick enough to qualify for it. ‘You need raging disease to qualify’ were her words. Words familiar to me. I had heard her say them in 2008, during a hospital admission which included a painful lymph node biopsy. The drug in question then was Rituximab. I proceeded to become sick enough with the necessary raging disease in 2009 and have been on Rituximab ever since. Life opened up, I travelled, I finally did my MA and I wrote a book. I learned something of the language necessary to navigate this complex life. But I keep failing; it is never enough.

Whether I can or should still receive Rituximab is once again in question. Biologics are both expensive and in their long-term usage, an unknown. Exactly what it is doing to my immune system after eight years in subtle ways is as yet unclear. I was already in a shadowy place this year with the infections, four hospitalisations, PICC lines and now this uncertainty while my body fragments once more on old lines. Not knowing once again what the future holds means I cannot plan for a Christmas trip to see my brother in Singapore. It means battling depression and anxiety on a daily basis. It means walking inexorably towards getting worse while having to accept ‘worse’ is only so in my subjective opinion. Halloween’s ghosts come in many forms.