Chris and I went to the Royal Cornwall Show yesterday, we got to experience some of those attitudes a little ourselves when we were out.
Firstly Chris hasn't totally lost his voice yet, but it is very slurry. I know he avoids talking a lot of the time, including to me as it is such an effort. We bumped into a few people we knew up there. In crowded places it is much harder to understand Chris than usual because of the background noise. I found myself translating a bit for him which was fine, but I think it was a bit frustrating for Chris, not at others, but at himself. We just tend to laugh together at home when he can't get a word out, I think it is a bit different meeting people who don't know you quite so well. Family and close friends were fine with Chris of course, but casual aquaintances, well I could see them shuffling their feet a little bit, I think they just felt awkward.
It is very easy to just ignore someone who can't speak very well. I am very aware of this when we have family gatherings at home, especially because Chris can't join in the eating part either. Conversations buzz around and he is there quietly watching and listening, it is so easy, no mater how unintentional, to leave him out and I find myself constantly fussing over him like a mother hen. God bless him for putting up with me!
I think being in a wheelchair has it's own challenges too. Chris wasn't alone up there. There was the facility to hire a mobility scooter and people had really taken advantage of that. I really have observed a difference in attitude though to people in a mobility scooter to those in a wheelchair like Chris. It is as though those on the mobility scooters are treated 'as normal', but once in a wheelchair slightly more like you must have a mental impairment as well. A couple of times there were some characters in suits walking round, you know, they are dressed up as animals or something promoting a product. They would ignore me, wave and approach children, but also Chris! What is that all about? Chris is very tolerant and didn't outwardly get offended or anything, but he did admit later that it is still uncomfortable for him having to use a wheelchair and intimidating too being in crowds. I can relate to that a bit being short, but it must be even more so to be so much lower than the general public milling around you. Trying to negotiate crowds in an electric wheelchair has it's own challenges and I found myself walking slightly ahead of him to guide him through.
I think being in a wheelchair has it's own challenges too. Chris wasn't alone up there. There was the facility to hire a mobility scooter and people had really taken advantage of that. I really have observed a difference in attitude though to people in a mobility scooter to those in a wheelchair like Chris. It is as though those on the mobility scooters are treated 'as normal', but once in a wheelchair slightly more like you must have a mental impairment as well. A couple of times there were some characters in suits walking round, you know, they are dressed up as animals or something promoting a product. They would ignore me, wave and approach children, but also Chris! What is that all about? Chris is very tolerant and didn't outwardly get offended or anything, but he did admit later that it is still uncomfortable for him having to use a wheelchair and intimidating too being in crowds. I can relate to that a bit being short, but it must be even more so to be so much lower than the general public milling around you. Trying to negotiate crowds in an electric wheelchair has it's own challenges and I found myself walking slightly ahead of him to guide him through.
I had to help Chris when he needed the loo. They have plenty of disabled loos up there, but the one Chris used was very cramp, especially with an EPIOC wheelchair. I had to go in with him as he was still attached to his backpack. There was just enough room for him to stand up to go to the loo, (he still insists on standing as long as he has support which is fair enough.) He also managed just about to reach the basin to wash his hands. He could not however use the hand dryer, there was just not enough room with his wheelchair in there and me. It is all very well providing disabled toilets, but at least make them big enough, sticking up a few hand rails and a ramp isn't quite enough really. When you are suddenly in a wheelchair facing challenges like these it is a steep learning curve.
The next challenge was finding somewhere discreet to disconnect Chris's feed and flush the PEG tube once his feed had finished. It was not easy, we weren't going to use a toilet..no way and almost considered using the family/baby changing area and quickly thought no, not suitable. We did eventually find a spot under a tree in a corner. I made sure Chris had his back to the crowds and I tried to do it as discreetly as possible. Bottled water, mug and syringe in hand I set to the task, no one was looking, why would they really, they would have no idea probably that someone could be fed that way. I however, yet again, missed the stopper on the end and unclamped the tube which meant everything I had just put down siphoned out again and then some, all over Chris and his clothes. Luckily I had another bottle of water so I repeated the task, making sure everything was sealed this time. I wiped Chris down as best I could. I apologised profusely to him and he just smiled and said,'Don't worry, it'll soon dry,' I do love my boy.
On the food front I still cannot get over feeling guilty eating infront of him. I treated myself to a pasty for lunch as I hadn't had one for ages, Chris insisted I had one too, but even though he says he doesn't mind, the smells of all this lovely food around him must be tortuous to him.
On the drive home it took 2 1/2 hours to drive 40 miles because we hit rush hour around Truro and we were stuck in a lot of traffic queues. (Yes we do have rush hours in Cornwall). A couple of times I thought Chris was having a throat spasm. Not here Chris, not here, thankfully they passed, but it is a bit or a worry when you don't know why or when they will happen.
(On a totally different note, though a sort of related subject, Chris is very, very determined to keep up with his oral health, especially now he can't eat as apparently there are more problems with your teeth through not eating than with eating. I find it distressing though as he gags when brushing his teeth, we have bought the smallest electric toothbrush we could find as his grip is weak and he has even stopped using toothpaste as he was told that it is the brushing action that is the most important thing, but the gagging is still awful. He won't give up though and still persists, but I do find it upsetting to listen to. It also leaves him with some choking issues after for a while. What to do?)
This disease is a bugger!!
Despite all of the above though, we are glad that we went to the show. Chris really enjoyed it. The day before he kept changing his mind as to whether he should go or not. Then it dawned on him that he might not be well enough next year and then he might regret not going (The Royal Cornwall Show is a big deal to the farming community). I think he was worried about needing to use the loo, but we just about coped with that as I said and also him getting a choking spasm. On that latter point it just shows they are truly random, the throat spasms, because it was dusty and around the vintage tractors it was smelly and he was fine.
Still we manage to get out and make some memories, we are off to the Hall for Cornwall tonight to watch 'The King's Speech.' At least we know what to expect up there.
Life goes on with MND.
