'The Other Woman'

Last Wednesday Robbie announced on facebook that he was undertaking a very long journey just to spend some time with 'the other woman'.

"05:42 x NMP - TAM/06:39 TAM - DBY/07:13 DBY - DAR/09:30 DAR - MBR/10:38 MBR - GMT - just to spend some time with 'the other woman' lol :D"

I was anxious, not because I was jealous of his 'other woman' - I have always known that I couldn't compete with her for his attention, she is rather awesome to say the least. I was anxious because his legs and back were not so good, and I was scared that he would not cope with a long day 'playing trains'. I think he was a bit worried too, but he is determined not to let his spina bifida stop him doing 'normal' things - and what could be more normal than spending the day with the object of your affection. I was right to be anxious, but I couldn't have foreseen that he would manage to injure himself before he had even left Northampton Station! They put some (allegedly) non slip strips on the stairs to the over bridge not so long ago and they have proved very challenging for passengers, they caused me to stumble a few weeks ago. Unfortunately Robbie fell twice as he was crossing the over bridge he cut his hand badly and acquired a selection of bumps and bruises. If they don't do something about those steps there is going to be a serious accident.

Despite his 'war wounds' Robbie had a nice but very tiring day in the 'deep north' with his first love. I would usually object to him calling a train female, but Royal Scots Grey is powerful, reliable, beautiful and simply the best - so 'she' must be female! 

Best Foot Forward

Robbie and I had a 'frank exchange of views' last night, I know it is silly to argue about trivial stuff but honestly how hard is is for a man to understand the difference between a dish cloth and a floor cloth!! We have the sense not to argue for long, there are so many more important things in life that it is foolish to argue about trivia.

We had a disrupted night which left me feeling useless or perhaps helpless is more accurate. I woke at 2.15am to find Robbie in agony, he was crying with pain and running through his extensive repertoire of expletives. He couldn't move and his leg was in spasm to such an extent that you could feel it 'jumping'. There was absolutely nothing I could do to help or to ease his pain. It seemed to go on forever, but in reality it was perhaps half an hour or so before the pain eased slightly. He was still moaning with pain at around 3am when exhaustion finally allowed him to fall  asleep. Sleep eluded me for at least another hour, I just lay there worrying and feeling useless.

This morning we had to get up a bit earlier than usual, to give him more time to get ready. I took him to the station so that he had extra time to walk to the platform. I knew he was worried about how he would walk from the station to the office, he mentioned it several times in the car. He said that he would just take his time and he would be OK. I wish I could do something to help, I feel so helpless. As he got out of the car he said "Best foot forward". I am so proud of him, even on a bad day like this he just keeps going. He doesn't give up and somehow he faces the day with a smile.

Tears at times have the weight of speech - Ovid

I will probably get into trouble for writing this, but sometimes you need to find words to express the way you really feel. In the last couple of weeks Robbie has said two things that have brought tears to my eyes. The first was so unusual and so out of character that I had to check with him that I had understood him properly. He said that he felt as if he should wear a label saying ‘I may look alright but I’m not’. Robbie has had to cope with spina bifida throughout his life and he has such a good attitude towards his disability that most people don't even notice it - he just gets on with life. So his comment came as a surprise.

He explained that it was very hard to cope with chronic pain. I am well aware of that, but I learnt long ago that he doesn’t want to be treated differently because of it. When I have tried to avoid situations or protect him in various ways I have had my head bitten off and been told loud and clear “I'm not a (insert expletive) cripple you know”. He is determined to be Robbie, a person who just happens to have a disability rather than being defined by it. He can do almost everything that everyone else can; he just needs to pace himself and to be creative about the way he does things. He doesn’t need a lot of fuss, all it takes is just a little bit of understanding and the freedom to do things his own way without constantly having to make reference to his disability. His comment reminded me that even if he is his usual bubbly self with a big smile on his face it is still hard, but in true Robbie style he is ‘just getting on with life.

The second thing that he did that brought tears to my eyes was something he wrote on Facebook

“....as they say, 'behind every great man, there's a great woman', I am far from great, but I would not have survived the last two and a half weeks, without the love and support of Mrs J! Thank you Mrs J, I love you very very much x ♥ x”

I am certainly not a great woman, just a very determined one. I am like a Jack Russell Terrier, I may lack height but I am as brave as a lion and I never give up. Robbie isn’t the only man in my life with a hidden disability; my son has autistic spectrum disorder. He manages reasonably well these days, but it hasn’t always been that way and there have been times when it has taken all of my strength and determination to ensure that he had the right support. Apparently I became a bit of a legend among his school friends because on a couple of occasions I had to deal with teachers who failed to take account of his specific needs. Thankfully most of his teachers were excellent.



Robbie’s words meant a lot to me. I am pleased that he values my support, I often feel useless because there is so little that I can do to make things easier for him. Perhaps just listening and trying to understand is more helpful than I realised - and heaven help anyone who makes things harder for him!

Robbie, I may be understanding but I don't miss much - don’t think I haven’t noticed that the quote you chose was suspiciously close to a Groucho Marx quotation!

“Behind every successful man is a woman, behind her is his wife.”
                                                 Groucho Marx

No Easy Answers

Robbie and I were rather anxious when we went to the hospital to see his consultant yesterday. We were surprised to find that we didn't have to wait very long until Robbie was called into the consulting room. The consultant explained that the MRI scan had been worthwhile because they were able to get some good pictures of Robbies spine and the pictures had been reviewed by a specialist at Oxford. As expected there was clear evidence of the damage caused by his spina bifida and they could see that his spinal cord was significantly longer than normal with less smaller branches coming from it. The good new was that there is nothing on the scan pictures to suggest that there is any tethering of the cord at the moment. There were words of caution too, Robbie should never have a lumbar puncture or any procedure on his lower back because it could cause serious damage. So the messsage was to keep walking, to accept the falling over and the pain as just part of him and to take great care of his lower back because if anything goes wrong with it they will not be able to put it right. It sounds a bit grim and it would have been nice if we could have found a way to stop the falls and to deal with the pain, but we didn't really expect that. I think we just have to be grateful that the news was as good as we could have hoped for. So now he just has to learn to bounce when he falls over and hopefully he will try not to fall in front of a car or a train!

Legs Behaving Badly! 06.03.08

I took Robbie to the hospital for his tests this morning. I was asked to go in with him which turned out to be a very good thing. He had to take off his shoes and socks and pull up his trouser legs, then he had to lie back on an adjustable chair like the ones dentists use. The tests only took about fifteen minutes and I don't think Robbie found it too painful, but it did make his legs jump about a bit. The conclusion was that the nerves in his legs are not too far from normal, well normal by Robbie standards anyway. He likes being unique and his legs are no exception, one is longer than the other and one foot is four shoe sizes bigger than the other, so I think 'unique' just about sums it up. They have concluded that the problem is probably the result of nerve damage in his lower back due to his spins bifida, and this is preventing the nerve messages reaching his legs. They wanted to do an MRI scan to get a better idea of what is going on, but Robbie said he couldn't cope because he is claustrophobic (allegedly). I intervened at this point and Robbie finally agreed that they could arrange an MRI scan, after all if women can cope with giving birth and the many other indignities we encounter, I am sure he can cope with one MRI scan. He will just have to close his eyes and imagine that he is on the bottom bunk of the sleeper train!

Robbie was upset afterwards because it is very unlikely that there will be anything they can do to stop him falling over or to ease the pain, and it makes him frustrated. I think it is always better to know, and it has ruled out a separate cause for the falls so we are a bit further forward. Now we have to wait for the MRI scan appointment and in the meantime Robbie will continue to act like superman to prove that he is OK, but don't worry I have warned him that wearing his pant outside his trousers would be taking it too far - it would be more Homer than Superman!