I think i will make this my final blog. Not many people reading or responding these days and it takes up time.
Simon is well. We have many challenges with his disabilities that place great strains on us, but we are strong together.
It looks like he will be dismissed from UniSa very soon. That is a depressing thing for Simon because he always intended to get back to work, but two years is too soon after such a devastating injury, and the University were unable to provide any guarantee of access to their buildings. We still have not received the personal items that were in his office before he became ill. Personally, I now think that UniSa are poor employers and I don't much care that they hear me say it (I am also employed by them for Phd supervision). I won't work for them again, and will never recommend that anybody should. Enough said.
I would love to be able to tell you that Simon is walking, talking, writing and working. He does a bit of all of those things at about 15% (walking)-60% (talking). It would be nice if people who knew him and worked with him would keep in touch. It does help.
So I sign off now. Thanks to those who supported us all this time.
Our love, Marian, Simon, and Skippy xx
Thursday, July 21, 2011
Monday, July 4, 2011
4th July 2011: Nearly two years
Hi everyone,
On 6th July it will be the second anniversary of Simon's devastating stroke. He is alive and, although very disabled, he is quite well, and I feel so proud of him for this incredible achievement. I hope that you will join me in congratulating him and wishing him well. Simon would be pleased to hear from you. He can read and respond to email and has a gmail address that you can guess.
I am so busy that I cannot find time to visit this blog too often but will try to do so once each month.
Much love,
Marian
On 6th July it will be the second anniversary of Simon's devastating stroke. He is alive and, although very disabled, he is quite well, and I feel so proud of him for this incredible achievement. I hope that you will join me in congratulating him and wishing him well. Simon would be pleased to hear from you. He can read and respond to email and has a gmail address that you can guess.
I am so busy that I cannot find time to visit this blog too often but will try to do so once each month.
Much love,
Marian
Tuesday, May 31, 2011
31st May 2011: Winter approaches
Hi friends, sorry it has been so long. I work, spend as much time as I can with Simon, then sleep and try to optimise those three elements of my life. Actually I am failing in this and wondering what I should do for the best. I spoke with our Priest about this. He advised me to go where my heart sends me. Well, my heart sends me to Simon and to my students, so I guess that means that I have to stop sleeping! It will soon be the end of our teaching semester and I may get to have a break for a week soon.
No more complaining. Simon is trying to maintain his fitness, we exercise everyday and he goes to a sports physio twice each week. He also goes to the Springboard programme in the City once per week. This is a little bit tedious for him, sometimes he has to spend twenty minutes patting a balloon across a table - not quite the level of intellectual stimulation that we were hoping for. We do as much as we can at home. It would be good if any of you who live locally could come to visit Simon, he does lift when we have visitors (and by the way, we have a very good stash of fine wine and a spare room).
Simon continues to add to his music collection, we will soon need to build an extension to accommodate this. Meanwhile, I still enjoy reading eclectically - recently discovered Bryce Courtenay, 'Smokey Joe's Cafe', and very special was Leonardo Padura Fuentas, 'Adios Hemingway'. Now I can't decide whether I should read Hemingway or consign his books to the compost heap. Better not take the risk, just in case EH got to heaven.
We planted two fruit trees: a plum and a peach, both saplings from our neighbour Maria's garden. We have had good rains and so the garden is very productive. We already have carrots and beets, some chillis, radish, rocket, parsley, and even some mandarins.
Skippy is as fit and cranky as ever. If you never saw the utube on Simon's Cat, look it up, it is Skippy to a tee.
First day of winter for us tomorrow. All you folks in the Northern Hemisphere - have a good summer and make the most of it.
Much love, Marian
No more complaining. Simon is trying to maintain his fitness, we exercise everyday and he goes to a sports physio twice each week. He also goes to the Springboard programme in the City once per week. This is a little bit tedious for him, sometimes he has to spend twenty minutes patting a balloon across a table - not quite the level of intellectual stimulation that we were hoping for. We do as much as we can at home. It would be good if any of you who live locally could come to visit Simon, he does lift when we have visitors (and by the way, we have a very good stash of fine wine and a spare room).
Simon continues to add to his music collection, we will soon need to build an extension to accommodate this. Meanwhile, I still enjoy reading eclectically - recently discovered Bryce Courtenay, 'Smokey Joe's Cafe', and very special was Leonardo Padura Fuentas, 'Adios Hemingway'. Now I can't decide whether I should read Hemingway or consign his books to the compost heap. Better not take the risk, just in case EH got to heaven.
We planted two fruit trees: a plum and a peach, both saplings from our neighbour Maria's garden. We have had good rains and so the garden is very productive. We already have carrots and beets, some chillis, radish, rocket, parsley, and even some mandarins.
Skippy is as fit and cranky as ever. If you never saw the utube on Simon's Cat, look it up, it is Skippy to a tee.
First day of winter for us tomorrow. All you folks in the Northern Hemisphere - have a good summer and make the most of it.
Much love, Marian
Friday, March 18, 2011
19th March 2011:
A while since I've been online here, sorry about that. Much to report, and mostly good. Simon is now several weeks into the Springboard programme in Adelaide, and has successfully passed his probation period there, so he can stay with them for up to 3 years. The programme is run mainly by volunteers and involves lots of group sessions. Simon finds some of these a bit humdrum e.g. they often have a session where they pat a balloon across the table to each other! However, this is interspersed with valuable speech therapy and physio. It is a very long journey for him, so we have decided to just go on one day each week. We go to a local sports physio twice per week, and he is making good progress there.
Last week Simon gave his second speech at Flinders University to the Speech Pathology students. He did really well and we received some wonderful feedback from the students. He is going to be a regular guest speaker for them from now on. Next week, Simon, Matthew and I will give a seminar at Flinders Business School, this will be an important milestone, and we hope that it will launch Matthew's research into a new phase.
We have had a great harvest of squash, tomatoes, peppers, and chilis. I am now trying to persuade some carrots and beets to grow. My neighbour, Maria, advises me about the moon-cycles which give an indication of the best times to sow seeds. This may be where I have been going wrong in the past.
My sister, Margaret, set off on a cruise holiday today to Japan!! I hope that they will be safe. They are very good travellers, but even so, when you are stuck on a ship there are not so many options. However, Margaret is the type of person who would wrest control of the ship and turn it around by herself if necessary. I fully expect to see her steaming up the Torrens with a jolly roger at the mast, wearing an eyepatch and shouting "Arrhharrr, Jim lad...."
Our air conditioning is broken, and is going to be horribly expensive to repair. Luckily, we have not had a hot summer and so we have managed without. I will need to repair it because the same system also gives us heating in the winter. Simon needs heating because he is not able to move around enough to keep warm.
We bought a new PC and this is helping Simon a lot. I am trying to set up narrator and want to get some dragon speak software. Anyone used this? Any good? Next week, I will give my first live on-line tutorial - very scary but I want to crack the technique. We still have limitations, because Oz broadband is underdeveloped at best we have ADSL, not even at the speeds we were getting in the UK five years ago. There is a national plan to improve this but it has been contentious and many delays. I am involved in a project to deliver an MBA with a regional/rural focus, and I desperately want to get the online stuff working well. My poor long suffering undergraduate students are the victims of my experiential learning. Don't worry, I will look after them, even if I have to replicate the tutorial physically each week.
Skippy caught a mouse recently. He strutted around the house triumphantly for many days.
We feel blessed to be in this part of the world that is so untroubled. Even other parts of Australia have been terribly damaged this year, and it has been terrifying to watch that happening. I don't know if prayers help, but I keep trying.
Lots of love, Marian
Last week Simon gave his second speech at Flinders University to the Speech Pathology students. He did really well and we received some wonderful feedback from the students. He is going to be a regular guest speaker for them from now on. Next week, Simon, Matthew and I will give a seminar at Flinders Business School, this will be an important milestone, and we hope that it will launch Matthew's research into a new phase.
We have had a great harvest of squash, tomatoes, peppers, and chilis. I am now trying to persuade some carrots and beets to grow. My neighbour, Maria, advises me about the moon-cycles which give an indication of the best times to sow seeds. This may be where I have been going wrong in the past.
My sister, Margaret, set off on a cruise holiday today to Japan!! I hope that they will be safe. They are very good travellers, but even so, when you are stuck on a ship there are not so many options. However, Margaret is the type of person who would wrest control of the ship and turn it around by herself if necessary. I fully expect to see her steaming up the Torrens with a jolly roger at the mast, wearing an eyepatch and shouting "Arrhharrr, Jim lad...."
Our air conditioning is broken, and is going to be horribly expensive to repair. Luckily, we have not had a hot summer and so we have managed without. I will need to repair it because the same system also gives us heating in the winter. Simon needs heating because he is not able to move around enough to keep warm.
We bought a new PC and this is helping Simon a lot. I am trying to set up narrator and want to get some dragon speak software. Anyone used this? Any good? Next week, I will give my first live on-line tutorial - very scary but I want to crack the technique. We still have limitations, because Oz broadband is underdeveloped at best we have ADSL, not even at the speeds we were getting in the UK five years ago. There is a national plan to improve this but it has been contentious and many delays. I am involved in a project to deliver an MBA with a regional/rural focus, and I desperately want to get the online stuff working well. My poor long suffering undergraduate students are the victims of my experiential learning. Don't worry, I will look after them, even if I have to replicate the tutorial physically each week.
Skippy caught a mouse recently. He strutted around the house triumphantly for many days.
We feel blessed to be in this part of the world that is so untroubled. Even other parts of Australia have been terribly damaged this year, and it has been terrifying to watch that happening. I don't know if prayers help, but I keep trying.
Lots of love, Marian
Thursday, February 3, 2011
4th February: Start of Springboard programme
Simon began his new rehab programme on Wednesday. We have to travel into the City for this, and here he is having survived the first day. We went into Rundle Mall to pick up his beloved watch - he is showing off the new strap.
Simon goes to the Springboard programme twice a week - a long journey for him, so next week I have booked us into the youth hostel for the night so that he doesn't have to travel so much. We will see how that goes.
The first day at Springboard I was permitted to stay and participate, but they made it fairly clear that this was an exception and after that Simon has to attend on his own. They are a jolly bunch of people, very positive, and I can see him getting on well with them. They did give him a bit of grief about wearing his hat indoors. They wanted to take it and put it in a cloakroom. Simon never lets his hat out of his sight, and he stood his ground. Quite right.
I have been back at work, teaching and dealing with the supplementary assessments. Now it is time to get ready for the new semester. We have a number of new research students starting and they all need a bit of attention, but hopefully the other students will help them to settle in. A lot of them are from overseas and a long way from home.
We managed to find a decent paver 'Dave the Pave', and he spent last week relaying our patio, and the driveway. It had got very wavy which was not great for Simon's safety. He did a great job. He also removed a flower bed and paved over it which has upset Skippy who was accustomed to using this flower bed for his morning constitutional. Each day he goes out, looks at the new pavers and sniffs them, in the hope that somehow his treasured flower-bed will be restored. The first photo shows him stretched out in the middle of what used to be the flower-bed. Note our wheelchair accessible vehicle in the background (it is a monster and I am still learning to drive it).
Many thanks for the birthday cards for both of us. I had some lovely presents, including a luxurious pair of pink Ugg slippers. Reet cosy.
Love to all,
Marian x
Thursday, January 13, 2011
January 13th: Simon's big trip to the City
It was Simon's birthday yesterday. After unwrapping presents, we headed off to the City for our first overnight stay in a swish hotel, the Crown Plaza in Adelaide. We went to the cinema and watched "The King's Speech"; Simon was able to relate to the subject of that story and we both felt inspired by it. We had a good day out. It is challenging to stay away from home even in the best hotel, but we learned a lot and will know more the next time.
I am amazed by Simon's courage and his ability to engage people even with limited communication. I found him in a record shop this morning, he had the owner turning over his entire collection looking for rare R&B material; we spent thirty minutes in a cafe and the owner exchanged personal email addresses with him because he wants to talk more about further education; everywhere we go, people love Simon. I think they always did, but he didn't feel it. Now he does, and he appreciates all of your good wishes. Thank you so much for all of the video messages on facebook (and thanks to the genius Asher). We were in tears. It was so good to see you all.
I am teaching tomorrow, a postgrad course on Negotiations. Am tempted to go in with a single powerpoint slide stating: "Split the difference", but I have to make it last three days so must make it more complicated... In truth, I have some fiendish stuff lined up for them and my assessment plan is entirely reflective (Tom, you taught me well and we love you).
Love Marian x
I am amazed by Simon's courage and his ability to engage people even with limited communication. I found him in a record shop this morning, he had the owner turning over his entire collection looking for rare R&B material; we spent thirty minutes in a cafe and the owner exchanged personal email addresses with him because he wants to talk more about further education; everywhere we go, people love Simon. I think they always did, but he didn't feel it. Now he does, and he appreciates all of your good wishes. Thank you so much for all of the video messages on facebook (and thanks to the genius Asher). We were in tears. It was so good to see you all.
I am teaching tomorrow, a postgrad course on Negotiations. Am tempted to go in with a single powerpoint slide stating: "Split the difference", but I have to make it last three days so must make it more complicated... In truth, I have some fiendish stuff lined up for them and my assessment plan is entirely reflective (Tom, you taught me well and we love you).
Love Marian x
Monday, January 3, 2011
January 3rd: Happy New Year
Happy New Year to all, let us hope that 2011 will bring more luck and one or two changes of government. We have worried about you all struggling with the snow and ice in Europe. I remember it happened last around 1985, Elm Grove was like a black ski-slope for weeks. However, the following year was excellent for gardening because all the pests had been weakened.
We are having a coolish summer which is the result of La Nina. Some days we are boiling in 35 degree heat and then it switches to 18 degrees. The cricketers are baking one minute and rained off the next. The Ashes series is in the final test stage now and it is very nerve-wracking. Ponting has gone out injured. The English bowlers look very menacing especially with the sticky wickets which seem to suit their style.
Simon is on a break between rehab programmes and we have been managing by ourselves using a local physio. He is making good progress and I can see a time when he will walk again. Tomorrow we are going into Adelaide in our new wagon - this is actually a very old Ford Falcon that will take the powered wheelchair in the back. Simon has to sit in the front seat. It is a tricky operation and so we are doing a practice run tomorrow with the help of my nieces. Next week we will try the run by ourselves. We have booked into a nice hotel for Simon's birthday and plan a good shopping trip (many CDs to buy). I start teaching again on Jan 14th which seems all too soon.
For Christmas, I got a pasta maker. This is brilliant. The first attempt was a bit messy, flour everywhere, and it took both of us (me feeding the machine and Simon cranking the roller), but it was fun, and really delicious. The quantities are a problem, 100gm of flour to one egg, but this feeds at least four people. How to arrive at half an egg is the difficulty. We have masses of tomatoes and courgettes, so heaps of tasty sauce.
Simon has a new home-brew beer kit which is bubbling away in the music room. He plans to invent his own flavoured beer and serve it up to the neighbours from a bar in our garage along with plates of pasta - Simon's Trattatoria!
Skippy has recently been menaced by flocks of cockatoos in the morning. Big white birds that screech for a living. This morning he fled indoors and hid for several hours. Simon is more worried that the cockies will eat our tomatoes but I think they are more interested in the peach crop nextdoor.
Sorry that we didn't get Christmas cards out to everyone this year. We do think about you all and hope that you will stay in touch.
Much Love, Marian x
We are having a coolish summer which is the result of La Nina. Some days we are boiling in 35 degree heat and then it switches to 18 degrees. The cricketers are baking one minute and rained off the next. The Ashes series is in the final test stage now and it is very nerve-wracking. Ponting has gone out injured. The English bowlers look very menacing especially with the sticky wickets which seem to suit their style.
Simon is on a break between rehab programmes and we have been managing by ourselves using a local physio. He is making good progress and I can see a time when he will walk again. Tomorrow we are going into Adelaide in our new wagon - this is actually a very old Ford Falcon that will take the powered wheelchair in the back. Simon has to sit in the front seat. It is a tricky operation and so we are doing a practice run tomorrow with the help of my nieces. Next week we will try the run by ourselves. We have booked into a nice hotel for Simon's birthday and plan a good shopping trip (many CDs to buy). I start teaching again on Jan 14th which seems all too soon.
For Christmas, I got a pasta maker. This is brilliant. The first attempt was a bit messy, flour everywhere, and it took both of us (me feeding the machine and Simon cranking the roller), but it was fun, and really delicious. The quantities are a problem, 100gm of flour to one egg, but this feeds at least four people. How to arrive at half an egg is the difficulty. We have masses of tomatoes and courgettes, so heaps of tasty sauce.
Simon has a new home-brew beer kit which is bubbling away in the music room. He plans to invent his own flavoured beer and serve it up to the neighbours from a bar in our garage along with plates of pasta - Simon's Trattatoria!
Skippy has recently been menaced by flocks of cockatoos in the morning. Big white birds that screech for a living. This morning he fled indoors and hid for several hours. Simon is more worried that the cockies will eat our tomatoes but I think they are more interested in the peach crop nextdoor.
Sorry that we didn't get Christmas cards out to everyone this year. We do think about you all and hope that you will stay in touch.
Much Love, Marian x
Tuesday, December 7, 2010
December 7th 2010
I think it is just a year since Simon came home from the hospital. People say that time flies. This time it is the opposite. We have struggled through every day. Pleased to say that it has been worth it. All of the things that I was warned about: falls, injuries, bedsores, infections, depression, pain. These have happened. Simon has dealt with all of it, and he is coming through like a real trooper. Some of you knew he would and we thank you for your encouragement.
We finished with the BIRCH team last week, and have to wait to begin with Spingboard in the city in January. In the meantime I have hired a private physio for Simon and she has been fantastic. She has been working on Simon's arm where everyone else had ignored it. I asked him to put his arm out and move a cup yesterday - with massive effort, and mainly from the shoulder he managed to move the cup. This is priceless. Some of you may remember the post where I reported that Simon had asked for his arm to be amputated.
Simon has started to listen to some talking books that Dave sent a while ago. They are all set in Brighton so he has been reminiscing about all of his old haunts. I wonder if any of the old haunts are still going? We know things have been very bad in the UK and hope that the good pubs have survived. At least the Bugle.
We were so sad to hear about Mike Barber. I can only smile when I think of him. I hope he goes to heaven.
Then we heard about Gerry, and we just know that you guys are looking after Trish. We send our love and our prayers.
Marian xx
We finished with the BIRCH team last week, and have to wait to begin with Spingboard in the city in January. In the meantime I have hired a private physio for Simon and she has been fantastic. She has been working on Simon's arm where everyone else had ignored it. I asked him to put his arm out and move a cup yesterday - with massive effort, and mainly from the shoulder he managed to move the cup. This is priceless. Some of you may remember the post where I reported that Simon had asked for his arm to be amputated.
Simon has started to listen to some talking books that Dave sent a while ago. They are all set in Brighton so he has been reminiscing about all of his old haunts. I wonder if any of the old haunts are still going? We know things have been very bad in the UK and hope that the good pubs have survived. At least the Bugle.
We were so sad to hear about Mike Barber. I can only smile when I think of him. I hope he goes to heaven.
Then we heard about Gerry, and we just know that you guys are looking after Trish. We send our love and our prayers.
Marian xx
Monday, November 1, 2010
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
Monday, October 4, 2010
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
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
Wednesday, September 22, 2010
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
Monday, August 30, 2010
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
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
Friday, July 30, 2010
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
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
Monday, July 5, 2010
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
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
Friday, June 18, 2010
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
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
Wednesday, April 28, 2010
28th April: An independent journey
Today we passed a great milestone. At 9am, Simon went out in the powered wheelchair and travelled a kilometre by himself reaching a cafe on the Main Street of McLaren Vale. It was nerve wracking, but he has done it. We are so grateful to Jeremy from the Royal Society of the Blind who has been training Simon to use the chair and is so inspiring. We are now trying to buy the right powered chair for Simon so that he will be more comfortable and safer. The occupational therapist came to our house today and has promised to help us to find the right equipment. We gave up on government funding for this. I know that some of you were thinking of getting up a fund to help with this, in which case, now is the time.
Have discovered the 'cheap Tuesday' deal at the local video store and scored some cracking movies: The Damned United is superb for anyone who remembers the legendary Brian Clough and understands English football. I was taken back decades and reminded of the comforts and deprivations of those times. We also saw Inglorious Basterds (that is how they spell it). A tad violent for me, but Simon thought it was brilliant. Now he wants to see Avatar (anyone seen that?).
I was interviewed today by a colleague conducting research into Work Integrated Learning. I found myself quickly embroiled in the Humboldt / Newman stuff about what a University is for. Sometimes I swear Tom Bourner is sitting on my shoulder. Hope so.
Love Marian x
Have discovered the 'cheap Tuesday' deal at the local video store and scored some cracking movies: The Damned United is superb for anyone who remembers the legendary Brian Clough and understands English football. I was taken back decades and reminded of the comforts and deprivations of those times. We also saw Inglorious Basterds (that is how they spell it). A tad violent for me, but Simon thought it was brilliant. Now he wants to see Avatar (anyone seen that?).
I was interviewed today by a colleague conducting research into Work Integrated Learning. I found myself quickly embroiled in the Humboldt / Newman stuff about what a University is for. Sometimes I swear Tom Bourner is sitting on my shoulder. Hope so.
Love Marian x
Saturday, April 17, 2010
17th April: Simon is home
Just a quick update today. Simon discharged himself from the hospital yesterday, he could take no more. He is home and happy. The next week is a bit challenging because we have no physio or carer support but I can do some work with him and hope it will be enough to keep him ticking over.
Love Marian x
Love Marian x
Wednesday, April 14, 2010
15th April: A mouse in the house
Simon is still in the rehab hospital and is deeply unhappy there. It is not quite the boot camp that we were promised, just three hours of therapy per week day and very little at weekends. It is terribly boring for him the rest of the time. The highlight of his week was when I sneaked in a cornish pastie. I will take him to Glenelg on Sunday afternoon for a spot of CD shopping, he has compiled a long list of must-haves. We have another public holiday (ANZAC day) on 26th April, and he has resolved to discharge himself from the hospital that weekend. We have stuck it out because the Professor has insisted and we need her support, but enough is enough. Meanwhile, back at the ranch I am besieged by mice. What is Professor Skippy Orlando doing about this? Sleeping. What a slouch. Ironically, the mouse living in the pantry has a real liking for cat biscuits.
Simon's veggie patch is in full bloom - here you can see the 'dwarf' beans after just 14 days. It will be about four weeks before we are eating the produce. I did calculate that this project was costing about $20 per kilo of veg produced, but there's nothing like the taste of home-grown produce. I once had an allotment in Brighton which, despite having only four inches of top soil over chalk, produced an enormous glut each year. I can still remember my colleagues running down the corridor at the sight of me trying to give away surplus marrows.
Have had a conference paper accepted and quite pleased about that. It is local, so no need for travel. Am still thinking about Beijing. I could probably arrange for a carer to be with Simon for a few days but I don't like the idea of being so far apart. Sometimes I wish we were in England, especially now that spring is there and winter will soon be here.
Had a close shave on the road last week. Driving back from the hospital in the dark a roo jumped out in front of me. I swerved and missed him but the girl in the car behind me hit him. He was a big chap. I stopped to assist her, she had a little boy in the back seat and was very upset. The police came, threw a rope around the roo and dragged it off to the side of the road. They just left it there and told us to get on our way. I've resolved not to drive in the dark anymore.
We heard about the UK elections. Simon and I are sending in a request for overseas postal votes. Not sure if we will be in time, but with luck we will send two votes. Wouldn't it be something if we tipped the balance? I voted for the first time in Australia recently. These were state parliament and some commonwealth seats. They use proportional representation and the ballot paper was about two foot long. I can remember as a student having to debate the pros and cons of PR, but I don't remember any academic mentioning the practical problems with very long ballot papers. When asked to rank 47 candidates, eventually you lose count, make mistakes, and your pencil runs out of lead. You can alternatively just tick a box for a 'ticket' - which means that you vote for all of the labor (correct spelling in Australia) or liberal candidates etc. Personally, I don't favour this. It can result in the Harvey Proctor scenario (Basildon under Thatcher). So, if any of you are teaching government and politics these days, you might like to add that observation to your lecture notes.
On an academic note, I want to know if anyone out there has experience of using blogs, wikis, on-line social network sites etc. as sources of research data, and how do you persuade research ethics committees that this is an acceptable form of data collection. Pucker academic references would be much appreciated.
Love Marian x
Thursday, April 1, 2010
1st April: Trapped in hospital
Simon was admitted to a private hospital yesterday for four weeks of intensive rehab. This is intended to give him a much needed boost of physio. It was a hard decision to accept to go back into the hospital environment, but we felt it was for the best. The shock came when we were told that he could not have weekend home leave because our private health insurance company would cut the funding if he was not in his bed by midnight every night! This is just bureaucratic nonsense, but there seems to be no way around it. Simon hates the place and I am very anxious about leaving him there. Ironically, the hospital is just around the corner from our old house in Brighton.
It is a long weekend, and I am told that I can take him out on Friday and Sunday, so I plan to bundle him into the car and drive down to the coast - even if I can just get him out in the fresh air for a few hours it will be a break from the hospital drudge. If any colleagues would like to visit Simon in the evenings he would greatly appreciate it. The hospital is in Hove, and if you email Simon's gmail address I can tell you exactly where to find him.
Skippy is upset because Daddy's away, and has decided to take it out on the female cat across the road again. What did we do to deserve a misogynistic cat?
We have decided against the Beijing trip for the time being. The cost of business class fares was monstrous, and I couldn't really justify that when we need so many other things. I have to prioritise Simon's wheelchair, and would like to get a bed that has a powered back rest so that he can sit up in bed whenever he wants to.
On a brighter note. Simon and I bought a huge raised planter for the back yard, it is just the right height for the wheelchair. I filled it with pea-straw and potting mix, and we sowed a load of veggies earlier in the week. In four weeks time it should be in full swing and ready for Simon's green fingers.
Am managing to survive at work - my boss and colleagues have been very forgiving.
Sorry for the lack of blogs. Time flies - so far this journey has taken nine months. I think we are still gaining ground. The same cannot be said for the Hammers - bring back Billy Bonds I say, I don't care if he's ninety....
Love Marian xx
It is a long weekend, and I am told that I can take him out on Friday and Sunday, so I plan to bundle him into the car and drive down to the coast - even if I can just get him out in the fresh air for a few hours it will be a break from the hospital drudge. If any colleagues would like to visit Simon in the evenings he would greatly appreciate it. The hospital is in Hove, and if you email Simon's gmail address I can tell you exactly where to find him.
Skippy is upset because Daddy's away, and has decided to take it out on the female cat across the road again. What did we do to deserve a misogynistic cat?
We have decided against the Beijing trip for the time being. The cost of business class fares was monstrous, and I couldn't really justify that when we need so many other things. I have to prioritise Simon's wheelchair, and would like to get a bed that has a powered back rest so that he can sit up in bed whenever he wants to.
On a brighter note. Simon and I bought a huge raised planter for the back yard, it is just the right height for the wheelchair. I filled it with pea-straw and potting mix, and we sowed a load of veggies earlier in the week. In four weeks time it should be in full swing and ready for Simon's green fingers.
Am managing to survive at work - my boss and colleagues have been very forgiving.
Sorry for the lack of blogs. Time flies - so far this journey has taken nine months. I think we are still gaining ground. The same cannot be said for the Hammers - bring back Billy Bonds I say, I don't care if he's ninety....
Love Marian xx
Wednesday, March 10, 2010
10th March: Exhausted
We are worn out, wrung out, exhausted. The BIRCH regime requires a lot of travelling (me driving) and doubled effort from Simon. Meanwhile I going to work and trying to close the sale on our house at Brighton. With luck the house will be sold and gone by Monday lunchtime. It will be a great weight off us - we have been carrying $700,000 in mortgage payments for the last four months with interest rates rising each month. I was trained in economics and taught never to be scared of large numbers, but when it is personal like this, it is not so simple. I hope that next week we will climb out of this. Phew!
I think that the Beijing trip is on for June. Anyone care to meet us there?
Marian x
I think that the Beijing trip is on for June. Anyone care to meet us there?
Marian x
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