My Dates With An Sma Quadriplegic

Sophie (not her real name) joined my Devotee Yahoo group and posted a photo of herself in her power-chair, and expressed an interest in meeting a devotee. She was in her early 40s at the time, intelligent (she had a BA, and was studying for an MA), attractive, obese (another plus for me) and almost completely paralysed due to spinal muscular atrophy: she had been severely disabled all her life.. I contacted her, and we agreed to meet in her home town in Essex, in the town's Wetherspoons pub.

When I arrived, she was already there with her helper, drinking coffee. She was holding the cup with both hands, just above waist level, and drinking through a straw. She finished it and her helper took the cup off her, straightened her up as she was keeling over the the left somewhat, and left us. We chatted about all sorts of things, she told me about herself, and I told her about myself. (I was in my mid-50s and divorced at the time). I bought us drinks - beer for me, white wine for her. She got her right hand into position to hold it by crawling her hand up her ample abdomen with her fingers until it was as high as she could get it. I then put the glass in her hand, a straw in the glass, and the other end in her mouth. I had noticed by now that she had the full range of movement in her fingers, but that they were weak and very clumsy. Her shoulders being completely paralysed, and her elbows very weak and with a limited range of movement, she could not bring her hands together in front of her - her helper must have done it for her with the coffee cup. The joystick on her chair was on the right arm, and there was a mobile phone attached to it by a cord.

Eventually, we left, and she suggested we visit the town's museum. Getting her chair in and out of the lifts, backwards to get in, was quite difficult. Later, she asked me to hold her phone while she texted her helper to pick us up in her van. The clumsiness and weakness of her fingers made this somewhat laborious, but eventually she managed it, and her helper arrived after a few minutes, opened the rear of the adapted van and lowered the wheelchair lift. Sophie manoeuvred her chair onto it, the helper raised the lift, and then strapped Sophie in. I got into the passenger seat, and we headed for her house.

In her living room, while her helper prepared a meal, she told me more about herself, and asked me many searching questions about my devoteeism. It transpired that I was her first-ever date, she having always assumed that she was "not girlfriend material", as she put it.

When the meal was ready, her helper fed Sophie and herself, while I ate mine. Eventually, I left.

Our next date was a theatre visit to 'Shakespeare's Globe', in London. Her helper (a different one - she had a team of them) parked the van in the designated space and then left, and we went round to the entrance, and took a lift up to the cafe, since there was some time to spare before the performance. We had coffees, she through a straw as usual. Eventually, a volunteer conducted us back-stage to a lift - a very wide one, so she could go in forwards and then turn round - which took us up to the first balcony, where we were shown to a wheelchair-accessible box. During the performance, of 'Doctor Faustus', I noticed an oldish bloke sitting behind us glancing at Sophie from time to time. He was trying not to be too obvious about it, but I recognised the signs: he was a fellow-devotee. When the time came to leave, she asked me to put her right arm onto the arm-rest: it had fallen off to the inside, and she couldn't get it back on.

On a later meet-up, she was drinking wine through a straw as usual, when she suddenly said "take my glass - I'm going to drop it". I did so, and from then on, at every subsequent date, I had to hold her glass or cup for her, her hands having become too weak and clumsy.

On another London date, we went to a pub on the South Bank, which involved crossing a cobbled street. Sophie got shaken in her chair, and ended up slumped over to the left (if she fell to one side, it was always the left, due to spinal curvature). I had to straighten her up by putting my hands under her armpits and pulling her forwards and to the right. This was not altogether easy, given her size, but devotees reading this can imagine my feelings.

She was frequently hospitalised with chest infections, when her SMA would advance, it being an opportunistic condition. We had more dates, over the next few years, and she got noticeably weaker over time. She died in 2019, in her mid-50s.