Ch.1 — the bedroom’, ‘Ch.2 — University’, ‘Ch.3 — Blue Light’, Ch.4 — A&E, Ch.5 — Survival.

The ‘fucking little shit’ why didn’t he tell me that I may have multiple sclerosis? ‘You knew and dodged a difficult task. You fucking coward!’ fumed Rebecca. ‘Fuck, fuck, fuck why did he leave the task to Google and me?’, asked Rebecca feeling alone and frightened — very frightened.

Rebecca felt winded; punched in the stomach. She had a knot in her throat and the sensation of a thousand butterflies fluttering in her tummy. Her breathing rate had increased. She was hyperventilating and needed air. She opened the window and lit a cigarette. As she inhaled she had a flashback to childhood. The scene was of Mrs Smith slouched in her wheelchair in front of the TV with a food-stained bib around her neck. Mrs Smith was Charlotte’s mother. Charlotte was a close friend from school. Charlotte and Rebecca had met in reception when they were five. They were best of friends for most of their early school years. They were still in contact with each other on Facebook. Charlotte was now at university in Newcastle.

Mrs Smith has MS. In the beginning Mrs Smith only had a limp. She had a stiff right leg that would drag when she was tired. Her foot would often catch on things and she would fall. She was always hurrying to get to the toilet. Rebecca remembered the occasion when Mrs Smith hadn’t made it the toilet on time. It had happened after school; at pick-up time. The shared embarrassment on that occasion — in front of all the children and mothers — had made her MS their MS.

Despite having MS, Mrs Smith was always upbeat. She was never sad or downtrodden. She would always see the funny side of things. She would always crack the best of jokes. Mrs Smith would often say the most inappropriate things. But everyone would forgive her as the things she said were always very funny. She always referred to Mr Hallett, their maths teacher, as being the man with the small willy. She said he suffered from a small willy syndrome. Rebecca and Charlotte only understood what she meant when they were a lot older. Whenever they reminisce about their childhood the size of Mr Hallett’s penis invariably comes up and they would burst into laughter. Regardless of her foibles Rebecca loved Mrs Smith and Mrs Smith loved Rebecca.

By the time Rebecca and Charlotte got to secondary school Mrs Smith was using a wheelchair. Earlier this year, shortly after Charlotte and Rebecca completed A-levels, Mrs Smith moved into a care home. In short, Charlotte’s dad couldn’t cope. The thought of becoming her only carer scared him. Charlotte was an only child. Her imminent departure to University had triggered a crisis. He couldn’t imagine life on his own with his wife. Charlotte provided him the much needed respite from the relentless pressure of looking after her. Their social worker had had the foresight and had stepped in. She arranged a respite admission for Mrs Smith in a local care home so that Mr Smith could take Charlotte to University. The admission was then extended from 2 weeks to 6 weeks and then made permanent a few weeks ago. Mr Smith had used his new found freedom to visit Charlotte in Newcastle. He hsd extended his visit to do a walk along the Northumberland coastal path. His first holiday on his own. Rebecca knew about all this as Charlotte had posted pictures of her and her dad on her facebook timeline. Mr Smith had a huge smile on his face. Gone were the dark rings under his eyes. He looked rejuvenated and full of energy. She had written that her dad had started writing a book. He was going to call it an ‘Idiot’s guide to being a carer’. He wanted other people in his position to have a field guide on how to care for their spouses with MS. The irony is that society had relieved him of this task and he was now free to pursue other interests. Selfish interests?

Charlotte daydream was shattered by a knock on the door. She stubbed out her almost finished cigarette. She opened the door and let in a tipsy Dan. His college had won their pre-season warm-up rugby match that had left him a good mood. The celebrations had gone on a pint or two too long. Dan was amorous and pulled Rebecca close to him and gave her a lingering kiss, whilst guiding her to the bedroom. Rebecca decided in that moment that she was not going to tell Dan about her eye. She was going to have to cope with being blind in one eye and hope nothing else would happen to her. Telling Dan about her having optic neuritis and the possibility of having multiple sclerosis was going to have to wait.

Chapter-7 Re-engagement



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Gavin Giovannoni

Neurologist, researcher, avid reader, ms & preventive neurology thinker, blogger, runner, gardener, husband, father, dog-owner, cook and wine & food lover.