1st November: Simon's first lecture

Simon gave his first public lecture since his stroke today. He spoke in front of around 40 speech pathology students at Flinders University on the subject of 'Living with Dysphasia'. You can see him pictured here with his speech pathologist, Kate Elliott, who has helped him to get this far. It was a wonderful speech, and the students gave him a sustained round of applause. Simon aims to write this up for a good journal. I am so proud of him.

There are quite long spaces between blogs now because our lives are so busy. Simon is about to graduate from the BIRCH programme at the end of November. Next he will start with the Springboard programme in the City, and we are looking forward to this next stage.

The powered wheelchair has gone back for some adaptations and to be covered in 'racing vinyl'. Then it will be his for keeps. It has been great for Simon to get around by himself. He can manage trips up to the village by himself, and is getting ready to go further afield. Jeremy, from the Royal Society for the Blind, is going to come back a couple of times to try out new routes, and maybe try access to various forms of public transport into the City.

We have opened talks with UniSA about return to work plans. They have moved Simon's School to Mawson Lakes (four hour round trip from McLaren Vale) so we need to have serious discussions about that. Simon will be in the City at least once per week for his Springboard programme, so I am hoping that UniSA can arrange office space for him at a convenient place in Adelaide.

Meanwhile, I have been working my socks off. So much marking I must be a markswoman by now. Only a few more weeks and I will be able to take a break; need one. I long to sit under a tree and read a good book from start to finish. I still read a lot, but in snatches. Most recently, I read 'The Winter of Frankie Machine" by Don Winslow (this was good), also Damian McDonald "Luck in the Greater West" which might have been less confusing had I known anything about the suburbs of Sydney. My favourite recently was Willy Vlautin "The Motel Life" of which the last two lines are "I hoped. Because hope, it's better than having nothing at all." For all you Hammers fans.....

There are snakes about in the Vale just now - waking up looking for a bite to eat. Skippy is on full alert. Luckily, there is quite a large population of frogs nearby (amphibians, you understand) and the snakes should get a good feed on those. There was a brown snake spotted in the garden of the house opposite us. By the time news of this reached us it was reputed to be 4 inches thick and eight feet long. A bit like those giant spiders that chase English tourists through the botanic park every year.....

Love Marian x

4th October: Marathon Backgammon

We had a lovely long weekend. I can't remember the reason for this week's public holiday (Queen's birthday maybe? Gaud bless her) but am very grateful for the day's rest. We had Blake visiting Friday/Saturday, he is the wonderful guy that loaned us his Grandad's wheelchair. We were so inspired by Blake; he is four years on from a massive brain injury. Now at Uni, he is developing into a very special man.
Saturday was taken up by the Australian Rules footie final (replay after an unprecedented draw the previous Saturday). Simon and I were pulling for St Kilda. This is a bit like supporting West Ham, and you might guess the result. Thrashed by around 60 points. They were robbed!
In the beautiful spring weather, Simon and I are living in the back yard. We spent Sunday playing backgammon. The last time we played, I could beat him so easily that I would let him win occasionally. This time he walloped me 6-Nil ! Always a bad loser, I insisted on playing on until nearly dusk, eventually prevailing at 7-6. But in truth, you cannot imagine how delighted I was at being beaten hands down in that first session. Our man is back.
We have been testing Simon's new power chair for the last ten days. He is great at driving - really accurate. My efforts at driving it leave large dents in the wall. The chair does need some further adaptation and will need to go back for modification, but we are nearly there. I have had my spanners out and made some elementary improvements.
We completed another paper this week. This was the write-up from Simon's keynote in 2009. Simon is making progress with the powerpoint that he is going to present to the speech pathology studens at Flinders.
Many congratulations to Stephen Pantlin and his wife on the birth of their little one. We hope that you enjoy every precious moment.
Tonight, my thoughts are with Sucheta. I am sending you an electronic hug, my friend, and next time I see you I will smother you with a real one.

Much love, Marian xx

22nd September 2010: Anniversary and other landmarks

We celebrated another wedding anniversary last Friday. Here you see us on that day pictured at our local Mexican restaurant (recently opened...the chef is not Mexican, and probably not a chef, enough said). However, nice ambience and we were happy.

This week we were invited to have a look at a new rehab programme called Springboard. It is located deep in the centre of Adelaide and we were daunted by the journey. It turns out to be brilliant and exactly what Simon and I had hoped for. A post-medical rehabilitation programme that runs for 1-2 days per week. It includes speech therapy, physiotherapy, and occupational therapies. The people that we met were so positive and committed. They told living stories of other clients who arrived in wheelchairs and left walking. They are prepared to take us on for up to three years. We are hoping to combine this with a return to work programme for Simon.

Here we hit a snag. While in the City, we decided to walk across to Simon's office to pick up some papers and things. He had not been there in over a year. Astonishingly, his office building has no disabled access. We did get into the building with the help of a colleague, Adam, who hauled Simon's wheelchair up a step through a side entrance. It was impossible to reach Simon's office which is down a flight of stairs and there was no ramp. Most disturbing, the toilets were inaccessible for disabled people. I did think poorly about UniSA at this point. I have reported it all to the HR department and hope that they will be able to improve matters.

Not to be discouraged, Simon and I took our first trip on the Adelaide to Glenelg tram. These are accessible, but you have to let the driver know you are there so he can put a ramp out. The tram drivers were brilliant I must say. We stopped off at the City shops (Rundle Mall) for some inevitable CD shopping, then went onto Glenelg (the bay) by tram and stayed there for an hour.

It was an exhausting day, we learned a great deal, and returned feeling challenged but inspired. My inspiration is that I can now see a day when Simon will be independent of me; he will be able to make his own choices about what he does, when, how and who with. I know that very often he would rather be out with the lads than listening to my endless stories of the wonders of Flinders Uni in between commentary on the progress of my new vegetable garden (a patch of ground behind the shed).

Caught up with some research students today, one recently returned from fieldwork in Malaysia. Heaps of data, but the government policy context keeps shifting. No worries, it can only add flavour to the thesis.

Love to all,

Marian xx

30th August: Rosy knees

Spring is upon us and Simon has decided it is time to change into shorts! Having spent most of his day in the garden he has a wonderful pair of rosy red knees. We got into gardening at the weekend - more veggies: tomatoes, zucchini, eggplant, and far too many chili plants. We are in a contest with our friend, Kerry, to see who can grow the first zucchini from the same seed packet - this could get more competitive than Tenantry Down Allotment Association. We are harvesting spuds and so much broccoli. I have discovered that Broccoli and Blue cheese soup is delicious, and has the added benefit of being a super-food.

Simon is working on a powerpoint that he will present to speech therapy students at Flinders University later this year. Also working on a paper with Matthew G-C on issues concerned with the preservation of archives in low-lying pacific nations. This has been a very interesting project for all of us, and Matthew is making great strides as an early career researcher.

Have just completed the first round of assessment with my Management students at Flinders. I am so pleased to see them engaging and performing well at this early stage. I love them to bits.

Will post some pictures on our Wedding Anniversary.

Love Marian xx

30th July: Onwards and upwards

Simon has been making significant progress over the last few weeks. It seems like we turned a corner at the 12 month mark, and despite all the pessimism emanating from the research data, his progress has accelerated markedly. Simon now walks regularly holding onto a fixed rail and can manage as much as 50 metres in an hour. The effort that this takes is equivalent to me walking around 5 kilometres, and as a consequence he is losing weight again. In the last two weeks, Simon has learned to stand up from his chair without holding onto the rail. He can stand and balance for around 3 minutes at a time. Once this skill is fully honed he will be able to try walking with a quad stick.

Even more progress has been made in speech therapy. While it is true that my ability to interpret is now very advanced, Simon has been able to hold detailed and complex conversations with his consultant (the wonderful Professor K) and to make and receive telephone calls. He spoke with Stephen Pantlin last week, they were both close to tears I think. Simon now regularly sends email independently, and has stepped up his ebay activity to the extent that we may need to buy a new house to store all the new CDs!

Professor K has suggested that Simon should begin planning his return to work, and recommended that he start by attending some research seminars at the University. We are hoping to arrange this soon.

Meanwhile, we continue to wait for the powered wheelchair. It has at least been ordered, but outrageously we are told that we may have to wait until Christmas for delivery. I know that it is possible to telephone the manufacturers in the USA and have the chair custom-built and shipped within two weeks, but government departments don't work like that. Ho hummm.... It would be pleasingly ironic if Simon were to be walking independently by the time his chair arrived.

We did get given a new powered bed for Simon - we can raise it up and down, lift the head rest to a near sitting position etc. This is much more comfortable for him, although a bit odd with both of us in adjoining single beds. I feel the cold without him. I have tried to persuade Skippy to sleep on my feet to warm them up, but he prefers to sleep on Simon's tummy.

Heard some rumour about Beckham joining West Ham. Oh yeah....

Love Marian x

July 5th: 365 days

We are exactly one year into Simon's journey. I take a deep breath and hold back some tears. I remember the terrible things that were happening that night a year ago, the confusion, darkness, pain, fear, hopelessness. What if I had lost him? When I saw him this time a year ago he was covered in tubes and wires and a priest was standing over him. We have come a long way.

Simon was at the rehab clinic today and I was at work so we did not get to mark the day, but tomorrow we will. Simon will have lunch with Jeremy from the Royal Society for the Blind - Jeremy helps Simon to find his way around the town in his wheelchair and they sneak into the pub quite often, I think. Tomorrow evening, my family are gathering at our house for a pizza extravaganza (take-away). We will celebrate Simon's survival and our future.

In the last year I have learned more than I was ever taught or self-taught, and come closer to Socratic truth than was comfortable. The one true thing that I know... I love Simon.

Love Marian xx

19th June: Hello again

It has been a long time since I found my way to this blog, sorry guys. Have been very busy juggling work, home, and Simon's therapies. Today finds me up at an early hour having watched the England match at 4am.

Simon continues with rehab therapy. He travels twice a week to Fullarton for physio, and has speech therapy at home. We are still waiting for a powered wheelchair, although there is some hope that this might happen soon. I was unable to buy this independently. We have had many ups and downs: a couple of falls, pressure sores, and the inevitable depression. On the upside, Simon's speech is really improved, and he has recently made good progress in physio. This week he walked 6 lengths of the parallel bars in the gym (around 60 metres in total). He has also been cooking 2-3 times per week using a slow cooker and lots of chili!

Simon has rediscovered E-bay and has successfully bid on around a dozen CDs. He has also worked out how to download music again. Music has been a lifebelt for us. We managed to go to a concert two weeks ago. A local band, the Yearlings, were playing in McLaren Vale in an old converted church. It was a bring your own grub arrangement. Simon and I turned up with fish and chips in newspaper - everyone else had delicate platters and canapes!

We have had plenty of rain which is good for our veggies. My spuds are up, and the greens are nearly ready. We have grown some wicked, blow-your-socks-off radishes and some rather pathetic beans. I have a constant battle with pests and insects and can often be found hunting caterpillars by moonlight. I found a tip in an old gardening book which advised placing fake plastic butterflies amongst the brassicas to deter the cabbage white butterfly. I spent several hours manufacturing plastic butterflies from old margarine tubs only to discover that they attract the blighters!

Simon's speech therapist is helping him to learn to use his mobile phone. We are planning to go to Noarlunga next week to buy a phone with a full keyboard so that he can text more easily. If you receive odd messages, you might expect them to be from Simon. Apologies to Aidan who regularly gets phoned by accident being first in the address book. By the way, congrats to Aidan on qualifying for his bus pass.

Skippy is as canny as ever. He has our care assistants wrapped around his little paw persuading them that he hasn't been fed for a week and desperately needs an ear rub. It has been cold here and he is a master at finding the warmest places to sleep; we could patent him as an organic heat seeking device. To his credit, the mice have disappeared (there may have been some RatSak involved).

My sister, Margaret, has been having a battle with skin cancer on her face. She has been very stoic about it, but it is a rotten thing. Last night the two of us went out to dinner together for the first time in years. It was really nice. Inevitably we ended up reminiscing about our complicated upbringing . There are only two people in this world that I have truly hated. The other one was Margaret Thatcher.

Thanks to everyone who has kept in touch through the blog and on email. Again, my apologies for being such a slug with the blog. I know that my family in England have been through some difficult times with the passing of our dear Aunt Jean. We have been thinking of you all.

I pick Greece to win the World Cup - who will bet me a dollar? Am even prepared to double it up on West Ham winning an away fixture next season....

Love Marian x