Cry me a river...

I started being allowed to go 'home', to my ex-husband Peter's house for a night, then for the weekend, so, I thought it was just getting me used to being away from the Rehab centre, not that I would be sent to another nursing home! I cried when I realised that no one had been thinking of me 'going home', I was getting ready to be transferred and the first place that Peter took me to in my wheelchair, was the Roads and Transport Authority to get a mobility pass, which everyone needed to take me around to various doctors etc.


After about 6 months, I moved to Newcastle to stay with my sister Maria and her husband Milton. Peter and my two lovely girls drove me up to Newcastle but the closer we got the more I cried, because I didn't know how long it would be before I saw my little ones again. 


I was settled in to my new room at my sister's house and my girls and their father took their leave from me, I was heartbroken as well as broken this time. I found myself sitting outside looking in at them and not even being able to be apart of my daughter's year 11 formal. I was desperate to learn about their lives now, even though it didn't include me - I was inconsolable.


Maria tried to make my life and my room as inviting as she could, with lovely pink curtains and a gorgeous silk duvet cover and lots of pillows and photos of the girls and my friends from Sydney but the fact that my children were living without me and the fact that I would never be the same again, I realised that I was severely depressed and even though I knew that part of that was the fact that I had had a stroke, part of it was also finally realising that my life as I had known it was gone, finished and buried.


The next couple of months were taken up with rehabilitation at the Rankin Park centre in Newcastle at the John Hunter Hospital. Once again the fabulous people at this centre took it upon themselves to be the whipping boys of the broken people like me.


I started to take the hospital bus to Rankin Park most days when I had to be there, to let Milt and Maria get back to their lives as much as possible. The OT's, Physios, Speech Therapy, hydrotherapy sessions and counsellor's were of the same ilk as their counterparts at Royal Rehabilitation Centre Sydney and they helped me as much as I would let them.


I was mutinous and not very nice to be around because I was certain that I was 'different' and that all the other people were 'different to me' and 'I wasn't one of them', well, it took several months for me to realise that guess what??? I certainly was one of them! I didn't wake up in the morning, able to walk again, as if from a bad dream, I couldn't speak like I used to all you could hear or understand from me, was blah, blah, blah!!! And I wouldn't be driving home again after that bad dream, cause guess what again.....I CERTAINLY WAS ONE OF THEM!!!


One thing that really got to me, was the fact that food tasted dreadful! I longed for something anything that tasted good or tasted like it should, but when I had something ordered for me, without a doubt it was something totally different from what I remembered or still tasted wrong. Maria laughed a lot about me trying out food and after one bite I would usually turn my nose up at it, shake my head and say 'NO'.


My birthday was just around the corner and even though I couldn't have cared less about celebrating anything, two things happened to make me smile again, if only for a day! My wonderful friends came to visit me from Sydney and I had a fantastic time with my girlfriends, in particular Leanne, who had made me a 'Recovery Quilt', a beautiful patchwork quilt that she sewed especially for me and worked a square to say that she had made it with love.


The next day my children came up for the day and instead of crying with sorrow I was so happy that my life was worth living again that it made me cry with happiness.

Family...

I came back to Australia because my elder sister Maria, was getting married! This was to be an exciting time for her and all of the family wanted to celebrate everything with she and her fiance Milton.


The wedding was held in Nelson Bay, our hometown, and was a really big thing for all of us. Our three younger sisters were bridesmaids, carrying parasols, wearing lovely 70's frocks, and floppy hats! Because I didn't think I would be able to come back home for the wedding I wasn't in the wedding party (Maria, who as a TAA air hostess managed to get me a cheap flight home) so, I had a great time, because I got to watch all the goings on, in a fly on the wall sort of way! My sister Terina was a beautiful singer and she sang 'Ave Maria', in the service - what a singer and what a song!


After a great night of dancing and catching up with family and friends, we all got up early and went out to Williamtown airport (It was so different to how it is today!) to see the newlyweds off on their flight to the rest of the world and to the rest of their lives!!


Milton was a well respected musician and he had a band who played in most of the top Newcastle clubs and pubs as well as those of Nelson Bay and surrounding locales. Although he had been married before and had two lovely daughters, what I wanted to know was.....would he be a good husband to my beautiful sister??


Well, if a marriage was going to survive, I thought that my sister had a pretty good chance since she was a 'child bride' and he was an 'older' man! Being someone in a band, makes the people around you treat you differently and throws lots of girls in to the mix, so, the marriage was tried in lots of different ways, but like a good wine, ageing made it all worthwhile.


The first and only significant thing to go against them, was the stillborn or neonatal death of their baby Angela. As you can imagine, the fact that my sister's baby was stillborn was a huge thing, as they were so well known in the area where they lived, eventually it became common knowledge that their baby had died but before that could happen, people would say to her, "Oh, where is your baby?" or "what did you call the baby" or something along those lines, Maria had to explain over and over again, what had happened to her. Most times, my sister was the one trying to make them feel better!


Angela, was a full-term, still-birth and I was one of the people who didn't know what to say and stupidly said to Maria, "Never mind, it wasn't as if the baby was 6 months old or 3 years old, and you knew her, you can have another one". How can I have been so obtuse??? I didn't understand at all until about 12 years after Angela had died, and I had a baby myself, then I knew what heartbreak my lovely sister had gone through at such a young age. Angela had  Anencephaly - a congenital birth defect. The next baby was joyously awaited but disaster struck again when the child had the same defect as Angela and so was terminated.


After a length of time, Maria and Milton has a son Aaron! What a fabulous gift he was to a sister who had been so sad, now although they most certainly would never forget the death of their first child, the grief started to abate. Aaron was a gorgeous little boy and has grown into a lovely young man and is still making his parents proud by becoming a F18 Hornet pilot in the RAAF, and just recently he (and his beautiful wife Anna), has returned home to Newcastle after two years in the US working with the US Navy as a pilot.


Then, they added another miracle to their lives, with their daughter, Martine. What a lovely family they now had! I remember driving Aaron to Pre-school and him wearing a 1/2 Mile jogging suit! He was so cute! When Maria drove us to pick him up in the afternoon, he went to sleep in the car and when we tried to wake him up, he had turned into Mr Grumpy (from the Mr Men books that he loved), who came home with us!!


He and Martine, had a most wonderful life and did many fabulous and interesting things while growing up in Newcastle. Aaron played piano, guitar, cricket and soccer and Martine did netball, piano, guitar and ballet (boy have we got the photos to show! Martine is in so many beautiful costumes that Maria made for her daughter). Martine has completed a social work degree and now works at the JHH, but she still plays the guitar and her music is still a big part of her life. The kids loved travelling to different parts of the world with their parents and they all had a ball.


These wonderful people have been so much a part of my life and especially now since I had the stroke. I am happy to tell you all that my sister Maria and her husband Milt are still having the most wonderful marriage after 35 years!

Plastered!

Yesterday two different and unconnected pieces of news knocked my socks off! 


Firstly, Coorabel Adult Rehabilitation Service (a part of the Royal Rehabilitation Centre Sydney), which is where I was situated when I had my stroke, is wrapped up in wire and that red and white striped tape, to let people know that it's hazardous to roam around there. The whole team out at RRCS have been waiting for a couple of years in the hopes that the whole hospital would be re-built and now, they finally have the finance (after selling off  a certain amount of land that was left to the Board) to make that happen! 


It is a shock to us, who have called RRCS 'home' for a while, to know that the end is nigh, but this complex and the staff, are so fantastic that they HAVE to be able to build it into the world class Rehabilitation Hospital that they so richly deserve and we, the patients need to have a venue that will grow over time to become a state of the art facility.


Secondly, I said in my last post, that I was going to RRCS, to get my cast off - I did get it off but I was surprised to get another one back on! Serves me right for boasting about it!


The very talented and lovely Occupational Therapist, Lisa and a student named Michelle greeted me in the outpatients department and we went around to the plaster room and they started to remove the cast, while they did that, I was watching and was very excited to see that my long and index fingers started twitching! This was simply amazing for me, as those fingers had not moved since I had my stroke. They kept on moving and twitching, while we tried to see if they could be made to pick up and put down some balls, they did!! My whole hand and all of the fingers can move independently, for now.


Lisa and I agreed that the casting was going so well, that we really did need to do some more of it (although I am a woman and can't stand my grotty and disgusting hair, that I have not been able to wash for over a week and won't be able to until it's all over) and so Michelle who is a student OT and watched how Lisa wrapped and cast my arm the last time, was asked to cast it this time. She really did well, but when you are used to the best looking after you, a student is very funny to watch and my cast is huge and unwieldly! 


The wrapping is of a soft material that you wet before it goes on, but it 'goes off' very quickly and won't stick anymore and poor Michelle was struggling with the wrapping and trying to hurry but the more you hurry with this kind of material the more you make a mess, so, all in all we had a real laugh (I have had many people look at me very strangely with my humugous cast!) and I am going to get this cast off on Friday afternoon, so, fingers crossed that it has the same affect as the previous one.


I have become very adept at catching buses to North Ryde and to the RRCS, with me being fortunate enough to be able to catch the bus from my suburb to the city and from there, I just have to walk down a couple of streets to catch another bus, which I catch to a place called Putney, which is where Royal Rehab is located. In Putney, I walk across the main road and the RRCS is just a hop, step and a jump from the main street and the whole journey takes 1 & 1/2 to two hours there and the same for the return journey, which is nothing compared to the people who have to come from all over Australia.


The people of Putney are very kind, because they get a whole heap of people who come to them for coffee, cake, lollies and lunch etc and just want to talk about nothing in particular, as the reason that they are there in Putney, is because one of their loved ones is a patient of RRCS and they are going through a lot of emotional pain, they don't know if their loved one is going to be rehabilitated enough to go home and how they will be when they leave the RRCS.


They are also a special kind of person to be able to converse and not shudder or look away or show how they are really feeling, about how some of the 'broken people' look, as I have said, some of them are definitely not a pretty sight, but it is not our fault so why should we have to hide away? The poor folk who have been burnt or have some other catastrophic event happen to them, are the main people that need to 'normal people' to just accept them for what they are and stop looking at them sideways etc they have already had something terrible happen to them, and they need people to accept them for what they are, the last thing they need now, is for 'normal people' to turn away from them and hurt them some more!!!


Some of my friends are quite upset when people ask me what happened to my arm (always in a sling, except when I am at work or in my own home), and I say quite plainly that, 'I have had a stroke', but I don't mind people asking me because I think it is about time that we come out of our shells and stand and be counted!


I feel blessed, that I have come through the blackness and hopelessness of having had a stroke, I can't help it that I am different now, but I really feel that I am on the way to a different and more fulfilling journey, that also fills me with anticipation, because there is a whole world out there, just waiting for me! 

I'm rude!!

I used to think highly of my 'Intellect', so this is not something that I tell you lightly, in fact it is such a huge thing, that I don't think I will ever get over the trauma of living with a 'brain injury'. 


Sometimes, people are horrified with me for being this rude, but I can't help it! It is like telling a woman on the bus, that she was sitting in 'my' seat! How embarrassed my 'bus mate' was with me and she said that I should be more tolerant with people and keep my voice down, when I said 'but she is sitting in the red seat and she is not supposed to. They are only for disabled people and ladies with babies and old people' (they aren't just for disabled people, the man from Sydney Buses was so nice in answering my queries, and I will put an excerpt from his letter to me, **At this stage the idea of the red seats is for other customers to identify that these seats may be required for less mobile passengers but this is not compulsory and is not enforceable, however we hope that common courtesy would prevail** well, it doesn't!!, so, we just have to put up and shut up! (now I know how it is for my nephew, who has Asperger's)), and my bus mate had to explain to me that it wasn't a crime that the person was sitting in the red bus seats and she said that she was sure the person would move if there wasn't any where else to sit!!


Another example is a few weeks ago, I bumped into my dentist in the parking lot of the building where I work, and went up to him and opened my mouth wide and said, 'oh John, I have this chip where 'blahblahblah', and John, being the nice man that he is said, 'come to my office and I will see what can be done', but my friend who with me, looked most appalled and said, 'oh Wendy, you can't do things like that'. Like what??? It took me several minutes to understand that people did not act this way!!!! I have lost the 'Social Skills' that I used to take for granted, and it happens all the time, that is another of the 'brain injury' things that I have only just come to grips with, and not only me, but my family and friends as well.


Another thing is, that I have to be told upwards of 10 times to get anything to 'stick' in my brain. I will ask one of my daughters something and then a while later, I will ask the same question again and I couldn't understand why the girls (teenagers!) would get cross with me, then I would ask the question, again! The telephone is something that I used to use without thinking about, but now, I hesitate and only like talking to my good friends or family on the phone and I am quite good at texting, rather than talking, because I am not sure what the person said! 


Sometimes it is clear and simple, but if it has numbers or an address etc, I am lost! If someone is putting me on hold they might as well hang up because I won't remember what it was they had told me or what address or what number I had to press! So, as you can see there are a lot of people like me, the 'broken people', who just can't fathom or don't know what is going on around them, not because they don't listen or don't care, but because they just do not understand. 


So, those of you who read this blog will understand that it is not very well edited, because I have trouble spelling and leave out a lot of words now, things that would never have slipped through before, but, I can cope because so much of me has come back and every day in every way, things ARE getting better.

Baby Steps

Today I will try to get things in sequence so that you don't find my blog so tiresome!


Back where I had myself just learning to climb out of the wheelchair and stay standing for a second or two to where I am now bears no resemblance to where I have been. Learning that I had a brain injury seems so simple - but I had to wrap my head around the most simple things and tell myself that yes, 'I HAD A BRAIN INJURY'.


That is where I left myself, because it has had such a huge impact on my life and the lives of everyone that I knew or had anything to do with. I still have to tell myself over and over again, that I have had a brain injury.


I was saying that I was very slowly learning to walk again. A step at a time and that is what is was. They had this 'soft belt' around my middle and it had hand holding loops on it and I had one person on my left and another person on my right and they would walk forward and so would I, sort of! I would move a step to the left and then FAIL! A step to the left and then a FAIL, but not as much as the last time and on and on we would go, until eventually, I could sort of take a step and not fall on my face, so not FAIL!!!!


This went on for several weeks and I had to tell myself that I was an infant, and now I was learning all the things that I had known before (even though I knew that I could walk - why couldn't I??), like speaking, eating and thinking!! But the things that I had to learn were like baby steps.  I never realised how much a human being takes for granted, until now, like WALKING!!!


From learning to take a step to taking a couple of steps seems so easy.....but it isn't, I can tell you that! Apart from the two or three steps that I was taking each day, I also had to go to the gym again for more torture! Claire or Philip or Chiara (it was usually Chiara) would get me hopping, stumbling and crying (again!) while I was trying to walk around the little tiny witches hats or stepping over the tiny little bean bags or the little cut off pieces of swimming noodle and watching myself in the mirror (thinking who is that miserable, whinging, wretch!) - and still not really realising that it was myself. The mirror of course, is to let you see how far you have come, but for me, it was how much further do I have to go!! I was a nasty, horrid person and I blush now at how angry I was!


I was walking (in a kind of way) swinging my 'bad leg' forward and following through with my good leg (step and drag, a step and drag, it was going to be several years before I began to noticeably stop stepping and dragging my right foot. I still drag it or let it go when I am tired) and it became the norm.


I am pleased to say, that I actually cried less and less and became a little more positive in my outlook, mainly because I was starting to stop thinking of myself at last and began to think (little by little!) of the people around me, like Gemma. A beautiful teenaged girl, who was at the same private girls school that my daughters went to in Sydney. 


One day, she had a strange sensation in her hands and feet and by the afternoon was rushed to hospital with a nerve condition and was in a coma a few hours later! She remained in ICU for a couple of months and was then sent to RRCS to rehabilitate. What she went through doesn't bear thinking about, especially for her family and notably her mother Anne. Gemma went on to go back to school and was one of the 5 top students in the school exams and was one of the top 10% for the HSC!!! I truly admire both of these women and I want them to know that they were the people who I moulded myself on and I think of them often, with gratitude and love.


To all of the staff who work at the RRCS, I want to take the opportunity to tell you all how much you mean to me and everyone else. I am sure for every one of the patients that you have put back together, from being the 'broken people' to the 'slightly quirky, misaligned people', they want to tell you all that YOU are Champions.

New York, New York

Well, it is four years and 5 months since the day that changed my life and I want to tell you what made me realise that even though the things that happened to me, wouldn't, if I could choose how my life was going to go - things could have been so much worse and I never thought that I would say that either!

I was telling you that the girls and I were going to go to New York in two weeks time and we were all soooo excited. The girls had heard all my stories of what a fascinating city NY was and how I couldn't wait to show it to them! I had been lucky enough to spend a bit of time in NY but not for over 20 years.

We had saved for at least a year so that we would have some cash to spend, but I didn't want the trip to be wonderful and our everyday life to be boring, so, I was intent on trying to let the girls have a good everyday life as well. We did all sorts of weekend things like playing volleyball with friends, going to the Moonlight cinema Centennial Park or we were lucky enough to be in the draw for and to win some family tickets in the Cahill Express Way on New Years Eve. We were fortunate enough to win a couple of other things like that as well.

The day that I had the stroke was the 17th March 2007, I was intending to drive my eldest daughter to Hoyts, a local Cinema, where she had a part-time job, but of course I had the stroke early enough so that I wasn't driving her to work!!! Can you imagine if I was? I would most likely have hurt us very badly if I didn't actually kill us. What if I had hurt some other innocent bystanders or some other helpless drivers or passengers!! That would have been disastrous. That would have been the first major kerfuffle.

On the 18th of March 2007, the Sydney Harbour Bridge was 75 years old and because that was a big birthday, the bridge was to be closed for several hours to let people like myself and my daughters walk the length of the Bridge from Milsons Point to the Rocks and back if we so desired. Well, if you have ever been on the Bridge when they close it to traffic, you can imagine what it is like! There are 10,000 people who want to walk, run, skateboard, ride bicycles, scooters and rollerblade over the beautiful old lady - can you imagine what it would be like to summon an ambulance to find you in the melee? I don't like your chances! That would have been the second kerfuffle.

Lastly, as I have mentioned several time already, the girls and I were ready to take off for the US or A!! We were already counting down the days and with just a couple of weeks to go, we could hardly sleep with the excitement. Can you imagine what it would have been like? We would have taken off from Sydney International Airport on a Qantas jet bound for Hawaii! It doesn't bear thinking about if I had have had the stroke while we were air-bourne, then I most probably would have died or become 'locked in', which doesn't bear thinking about. The first thing that I think of, is my two gorgeous children flying with a dead mother or  a very sick and unconscious one at the very least. That would have been the third kerfuffle, so, I think I am pretty lucky all things considered!!

Even though I was so angry, afraid and mourning for what I had lost in the way of my previous life, I can't help but think that the 'higher power', chose the least bad of the scenarios to visit upon me.

B-right side

After five or six weeks, I joined the Occupational Therapists in the kitchen where they told me, that I was about to make some toast and tea! I was thrilled, as I thought that making 'breakfast' was a real achievement!  


I manage to burn the first lot of toast because I couldn't coordinate myself in the wheelchair and 'do things'! I had to put more toast in the toaster and I watched it turn golden brown and then I remembered that I had to make a cup of tea. When it was almost ready for me to add milk, I almost burnt the toast again - Ness (the young OT) managed to get the slices out and ready to be buttered. That was a whole other thing right there, because I had been a right handed person most of my life and now, I didn't know what to do because I didn't have a right handed anything! I didn't even registered that I had a right side because it didn't do anything! My right side didn't hurt as such, it just did nothing. So, I remember looking at my right hand and my left and my right again, then I tried to butter with my left hand - whoaaa that was a mistake. I tried to put the knife onto the bread and I never realised how difficult it was to use your left hand, but that was what I had to face, that and more tears because I had no idea how I was going to butter this stupid toast!


After a few stops and starts, I managed to get the toast sort of buttered and took it and my tea and went to eat it in the 'dining room' that is set up in the hall of the Brain Injury Department. There where about 4 different lots of people learning various chores that morning and all of us were concentrating on our mission to the exclusion of everyone else. That hall saw many a herculean task I can tell you, as all of the broken people tried so hard to 'fit in' and be 'normal'.


This was one of the many meal time tasks that I and the other residents of Royal Rehabilitation Centre Sydney had to learn again. The simple tasks like making tea and toast seem are a huge learning curve and you really do feel 'chuffed' when you get it right! However, once won't do it, because you forget how to do it almost as soon as you make something - another thing I didn't know - and most people who are trying to make breakfast for the first, second and third time don't know this either!!! So, the whole process takes on surreal concept. 


After 3 or 4 times, it is set in your mind (brain) and you can go on to the next step, so, again learning everything, takes a long time. When we had the tea and toast down pat, we moved on to an egg, the next time it was an egg and bacon! Then, after I had made a simple breakfast a couple of times, we moved on to a full breakfast that included: cornflakes and milk, and fried egg and bacon with a piece of toast and a cup of tea, I wasn't going to eat all that anyway, but I felt really empowered!! That day was one of smiles and it only took me 8 weeks!


The staff are so patient and calm that it does make one wonder, is there a special place where they all come from???