In December 1999, I had yet another opportunity for travel. From September, I have been doing intensive volunteer work (approximately 30 hours a week) at a Cheshire Home in Ireland. Amongst the many rewarding experiences I have had here is that I have become good friends with a woman named Siobhan. Siobhan is a year older than I am, twenty-eight, and is severely disabled by cerebral palsy. She can control her eye movements, which she uses to communicate (she is not able to communicate verbally), and can, with effort, control her head movements, which she uses to steer her electric wheelchair. She has very little control over the movements of the rest of her body. An opportunity has come up for Siobhan to move into her own chalet within St. Patrick’s Cheshire Home. This chalet is one of eight semi-detached houses consisting of a bedroom, living room, bathroom and kitchen, and is connected to the main house through a covered passage.
In order for her to live semi-independently, it is, above all, necessary that she be able to call for assistance if she needs it. Ideally, she would also be able to perform some simple functions for herself – things like opening and closing her door, and turning her lights on and off. She was selected to travel to France, to an experimental centre named Apahm, which would attempt to design an environmental control system for her. I was privileged to accompany her, along with another carer, her mother and a translator.
After a great deal of deliberation and investigation into travel alternatives, we decided to fly to Brussels (in Belgium). Other members of the Cheshire Foundation traveled separately to attend an international conference at Apahm. They brought Siobhan’s electric wheelchair, while her manual wheelchair accompanied us, by air. They met us at Brussels airport and we drove from there to Dunkerque (in the north of France). Although the streets of Brussels were apparently filled with festivities (we arrived on Saturday 4 December 1999, the day of the Belgian prince’s wedding) we missed it all, taking the ring road around the city and heading straight for Dunkerque.
We arrived in Dunkerque in good time, although exhausted, and promptly got lost! But Dunkerque, while not very attractive by day with its post-war architecture, was magical by night. We passed an ice-skating rink on the side of the main road. It was filled with gliding skaters and warmly dressed spectators, and surrounded by trees filled with white fairy-lights. I have seldom seen anything so unexpectedly enchanting. I was later to discover the same rink by daylight - rather unattractively taking up the town’s main square, Jean Bart.
On Sunday we had a late, lazy morning, recovering from the stress and tiredness of the day before. We got up at about 9:00 am, got ourselves ready and organised our ‘supplies’. Then Siobhan was ready to get up, and we started to help her. I usually take about 90 minutes to get Siobhan up and ready - washing, dressing, breakfastin and all the other morning necessities. On Sunday, two of us were helping her, so it should have gone more quickly. But the fact that our routines were upset, and that we had only just gotten up ourselves, made us a bit slower. Apart from anything else, we were staying in an automated assessment flat and it took quite a while for us to work out which switches controlled what. Also, we were interrupted by a knock on the door, and one of Apahm’s technicians/nurses arrived to see if we were okay and had everything we needed. Our translator wasn’t with us, and I knew the most French out of the three of us, having been studiously listening to a Basic French cassette for a month or so. BASIC is the key word here. Nevertheless, with her few words of English and my few of French, we managed to establish communication, and I managed to introduce ourselves, haltingly answer some of her questions about ourselves and our plans, and tell her we had everything we needed. When she left I felt a little shell-shocked (I had been expecting our translator to be with us whenever necessary) but also rather proud of myself.
Sunday was the day that we dined in a chateau in Cassel, with all the conference delegates. About 90 minutes drive from Dunkerque, the chateau did not have a very impressive exterior, but the inside was beautiful. We had a lovely lunch, with about 7 courses and at least as many wines. In front of a roaring fire, with candles on the tables and a piano playing in the background, it was a memorable meal. The owner was fantastic, and willingly liquidised Siobhan’s meals in the blender we had brought with us. At this meal (which lasted about three or four hours), I met a woman from Spain and a Flemish couple, which meant that I communicated in four languages in one day - English, French, Afrikaans and Spanish. Admittedly, both the French and Afrikaans/Flemish conversations were very basic, but I still felt hugely proud of myself.
I was amazed when I found out that the rest of the party were heading straight to Belgium for a dinner. Siobhan, Nuala and myself, however, decided to go back to Dunkerque. While the conference delegates started yet another meal, we went down to visit a neighbour, Sebastian. Sebastian also has cerebral palsy, although his condition is not the same as Siobhan’s. He is able to talk and has much more control of his movements than she does. He speaks four languages, operates a computer and lives by himself in his own apartment, which has also been fitted out by Apahm. He has carers who come in for an hour in the morning, two hours at midday and an hour at night, and has set his apartment up so that he is able to control most of his environment. We spent a couple of hours at his apartment, drinking wine (of course) on Sunday night, and again on Tuesday night. When his mobile phone above his bed began ringing during our conversation, I thought Siobhan’s face would split in two, her smile was so wide!
On Monday, we discovered that Siobhan’s assessment would only begin at 2:00 pm. Some of the party went out for supplies from the local supermarket and to do a little exploring, while Siobhan and I stayed in the flat and read. When the others returned, I escaped for an hour and a half and explored Dunkerque by foot. I was back well in time for the assessment, which went well once the initial chaos (with everybody talking at once and everything having to go through our translator) had died down.
The assessment was interrupted with the arrival of all the conference delegates. They had come to tour Sebastian’s flat and the assessment flat in which we were staying. Of course, this would be the moment that Siobhan and I would choose to get stuck in the glass elevator (yes, just like Charlie)! After a crowded session in each of the flats, the conference delegates (thankfully) left, and we were left once more with Yvre and Phillipe. This time, we were able to sit down quietly and work out what was needed for Siobhan. They intend to implement a system whereby Siobhan can wear a laser beam on her head, either by a headband, a pencil-like stick behind her ear, or some other device. A removable control pad can be attached to her chair, or placed next to her bed. This will be about the size of an A4 sheet of paper, and will be divided into up to 16 sections. By pointing the beam at a section, she will be able to control a specified function. The sixteen potential functions we looked at are:
We then arranged that a trial system of this kind would be brought the next day, so that we could see whether Siobhan would be able to manage it. If necessary, we could halve or quarter the number of functions that Siobhan starts with in order to make the sensor areas bigger and easier to navigate. Bear in mind that Siobhan cannot do any of these things alone at present. To even be able to succeed in controlling four of these functions, her independence and quality of life can improve dramatically. She could, for example, call for help when she needs it, turn her bedroom light and television off when she wants to sleep, and open and close her front door.
That night we went out to dinner, once again with all the conference members. Because Siobhan had had some difficulty with the food at the chateau, she decided to eat before we left. We, once again, had a wonderful time at the restaurant, and drank a great deal of Beajoulais Noveau, a very enjoyable wine indeed. At the restaurant, we met a woman from Portugal, named Monica. She is a physiotherapist who was attending the conference, and she was soon giving Siobhan’s hands and feet therapeutic massage - which was wonderful, as Siobhan was missing her physiotherapy sessions back at St. Patrick’s. It was midnight before we left.
On Tuesday we got up early in order to be ready for the people bringing along the materials for Siobhan to test. We waited, and waited, and waited - eventually they arrived, only to tell us that the materials had not yet arrived at the centre. They were able to tell, through postal tracking, that they had entered France, but they did not know exactly where they were or when they would arrive. This was devastating. They said they would return again in the afternoon and again the next morning, in the hopes that the materials would have arrived. We decided to go out to spend the morning walking around Dunkerque and shopping - I promptly spent a great deal of money. As well as a few Christmas presents, I bought myself a pair of sunglasses and a pair of slacks. I received, as a gift, a beautiful satin nightdress, and I also went on a mission to buy postcards and the correct stamps for each country to which Siobhan and I wished to send them.
The materials had not arrived by the afternoon, and Edith (our translator) and I went to a travel agent to find out what our options were. We had many options, all of them extremely inconvenient and costly. We were unsure when the materials would arrive, some of our party had to return to Ireland for work-related obligations, and we did not have sufficient medication for Siobhan to stay more than a few extra days. We decided, in the end, that it would be better for Yvre and Phillipe to fly to Ireland with the test materials, and also use the trip to examine Siobhan’s chalet. Hopefully, this will happen some time in December.
We spent our last evening visiting Sebastian. On Wednesday, 8 December, we got up and dressed, and discovered that the materials had still not arrived. By the time we had packed, it was just about time to leave. After a rather long and worrying wait for the vehicle (which had gone to stock up on wines to take back to Ireland), we drove back to Brussels and flew to Dublin. Then, the last lap, a three hour drive back home to Tullow.
The trip was exhausting but well worth while, although we were very disappointed at not being able to test the system.
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