It's Merely Routine Now Jack and I have been married for eleven years. We live happily together, like most other married couples, sharing our daily routine, our joys and our sorrows. But there the similarity ends, for since birth, we have both suffered from Spinal Muscular Atrophy – a slowly progressive disease affecting all the voluntary muscles. Jack and I have never walked, yet our lives at present are all we ever dreamed of. It is 8 a.m., and the door buzzer penetrates our half-sleep state. Jack fumbles for the plastic tube tucked under his pillow. Snuggled beneath the bedclothes, I hear the bleeps from the box under our bed as Jack activates his "Patient-Operated Selector Mechanism" to release the lock on the front door. Kay, our first helper of the day, enters. We here the blinds being opened in the living-room, and the clink of the milk bottles being carried into the kitchen. Jack's breathing tells me that he is trying to snatch those last few minutes of respite. Luckily, I regain my alertness almost immediately. Glancing round the bedroom. I still cannot take for granted its dιcor in our own choice of lemon and green. The ceiling track, supporting the electrically-operated hoist, is as familiar and normal to us as any other part of the furniture. Bright and cheerful, Kay appears in the bedroom doorway, "Hello. Quite cold outside." Our helpers are just ordinary people from all kinds of backgrounds, but to us they are special. The various payments we hand them never compensate for all the care they show. Soon, a bowl of water is placed on the bedside cabinet, and my morning wash commences. We exchange tit-bits of information. "Traffic was awful today. Cycling is really dangerous. I shall have to rush off afterwards – I'm house-hunting this morning." Occasionally, I have to interrupt: "Can you take the towel out of my ears, and say that again, please?" My own contribution to the conversation may then be interrupted by the flannel passing over my mouth! It is all treated as a matter of course – all part of the process of getting up. I am almost oblivious to the fact that I am disabled, and unable to move myself to any appreciable degree. I feel so "normal", and to me, my physical condition is more of an inconvenience than a serious disorder. Jack is actually affected to a greater extent, though no such weakness is reflected in his character! As he clings to his semi- consciousness, I am gradually washed and dressed at his side. What good fortune for him that I have to get out of bed first, before he can be rolled over! Aided by the hoist, I am lowered into my electrically-powered wheelchair, where I sit straight and well, supported by my surgical brace. Special arm-supports give me a greater range of movement for everyday activities. I now position myself at the dressing- table, and do my hair and my make-up, while Jack is being dressed. Conversation on his part usually begins with a few grunts which mean "I don't wanna get up", but within half an hour, he is going through the same procedure with the hoist. Being mobilised in his own powered wheelchair, he starts to whistle, and takes more interest in the conversation! By this time I am filling the teapot from the kettle which stands neatly on its pouring stand to save any lifting. I listen from the kitchen as Kay continues with her news and views, while the electric shaver buzzes round Jack's face, carefully avoiding his moustache and long, bushy sideburns. I carry the cereal bowls through on a special wooden tray which has a hundred-and-one other uses during the course of the day, and usually stays on my lap. At about 9.30 a.m., Kay completes her tasks, and we say goodbye and thanks. Now we are alone. Our attitude changes almost with the sound of the door being closed. From being accommodating and even entertaining, as one tends to do in company, our own relationship emerges. Without his spectacles, Jack's blue eyes retain a certain sleepy look, which I love to see. "Morning dear." We touch hands, or perhaps give each other a wry smile. "Had a good night?" "Must make some phone calls this morning." Our breakfast of cereals and fruit juice is a leisurely affair, since we can eat only slowly, anyway. And we revel in this quiet part of the day. Our Home Help makes three visits each week, for a total of five hours. She does the heavier cleaning, and assists with my week's washing. In her chatty, friendly way, she soon learned to give me the scope to do what I can in the way of housework, which must be a difficult assessment to make with each of her various clients. The next helper we ourselves pay is our mid-day lady, Kathy. Even the half-hour toilet routine is by no means a dull affair, and we soon become involved in hearing yet another of Kathy's comical experiences. "What do think happened to me this morning? My ruddy dog pinched my slipper, and buried it in the garden! Got coffee cheap at the Co-op – do you want some? Where are you going today?" And so it goes on. From mid-day, we are usually left to our own devices, unless we go out anywhere. Our next paid assistant is not due until about 9.30 p.m., when the process of getting to bed takes roughly an hour. But this does not necessarily mean that we will see no one else before then. "It's nice to think 'they' do things like this for people like you". "I expect 'they' keep an eye on you, though?" "Still, you don't really have to worry – not like ordinary people, eh?" We force our smiles, and make non-committal remarks! However, those who know us well fully realise that what is referred to as 'all this' could hardly be said to have happened overnight! While admitting to a certain amount of good fortune, a high percentage must surely be attributed to hard work and patience – not just on our part, but on that of many others. The good fortune was being given the opportunity of having our own home in the first place. Nevertheless, it was all a gamble. Like most other unprecedented projects, it could not guarantee any lasting results. But let us look back in time, and see how it all began.