Laughter is whatyoumacallit.....

I thought that it was about time to let you all know that I did have a few laughs while I was still in the Royal Rehabilitation Centre Sydney as an in-patient! I know that I let it all seem to be so sombre and unhappy, but that is generally how we feel because our lives have been completely disrupted - but, sometimes it is just too funny and we have to laugh!


Annie, one of my long-time and wonderful girlfriends often came to see me and brought her sons along when I was in Coorabel Adult Rehabilitation Service (CARS  or just Coorabel), and this particular afternoon she had been talking quietly to me when we heard something in the hallway. Annie was feeling mortified, when Dan, her 9 year old hopped into my wheel chair and took off! He was a good driver and of course, a wheel chair was something new, cool and fast!! Her oldest son, Mikey, got into the swing of things with Dan and they both zoomed up and down the corridors!!


I remember that was one of the first occasions that I felt like laughing and I did uproariously! Annie was chasing after Dan and trying to quietly chastise him and I just laughed more, it was so funny to watch someone trying to be a grown up and you could see that maybe, she wouldn't have minded having a zoom around herself! The boys are still, thankfully, in my life and they are so welcome because they take you as they find you, and that is very refreshing.


Which brings me back to the time when I was saying that my daughter didn't like people to say to ask me what happened or to say me, "Did you break your arm?" and definitely didn't like me to say "No, I have had a stroke and my arm is partially paralysed", because most people feel embarrassed, and so do my daughter's - why??? They didn't do anything and neither did I, so, everyone has to 'get over it'!!!


My right arm is still a problem, as it used to be the dominant arm, with the dominant fingers, so, the fact that I can't write properly with my left hand either (because until recently, I was sure that my right hand would come back in to use just as long as I did this, that or something else), is irritating and annoying, but I have seen other stroke survivors writing and it is and can be as beautiful as the original writing, you just have to practise, practise and practise again - which I don't have the time or patience to get it right!


I also don't understand why other people feel embarrassed by people with a disability? I didn't before I had the stroke (which now is being called a brain attack, like a heart attack) and I doubly don't understand now! However, I am ashamed of my reaction to people with a disability before, because I really didn't have one, which is worse that being a bigot!!! I didn't have a reaction, because I used to think of the 10% of people in Australia who have some kind of disability, as being 'not there'. Since my stroke or brain attack, I can understand why the disabled people and their carers have become so much more vocal and political as we need to make sure that all people are being heard, especially the disadvantaged, which disabled people are.


There was a fantastic show on television this week called "Scarlet Road: A Sex Worker's Journey, about a woman called Rachel Wotton, who specialises in disabled clients. What a documentary, what a woman! It is fantastic that disabled people needs are being recognised in this and so many other areas. However, these other areas; like lifts and how to go out to certain restaurants and shops, are still being looked at as causing a huge disadvantage to the owners, the managers and people in general because they COST A HUGE AMOUNT OF MONEY for the poor restaurants, shops, hotels etc - what about the disabled people!!! At last they are being given a voice and it rings out loudly.


Most days I can confidently walk for miles and not feel too disabled, but sometimes, especially when I am tired, I will find that my right leg drags a little and my limp becomes so much more pronounced. Other times I try to block out the tiredness and say to myself, I am so lucky that I can walk at all!


That is how I truly feel now. I am blessed that I can walk, talk and am not too disabled. I assume that it will get better with time, but you know what the psychologists say, "ass u me"!!!

Buzzzzzzzz

It was the Christmas holidays and I was alone and would be for several days, so, the problem that I had, would have to be solved by me! It was a bad mozzie bite and I know, you say "phtt", that's no problem - well isn't it!!!


I had quite a few bites that season and my body has changed since I had my stroke/brain attack, so, my reaction to various things has changed. I no longer have hay fever, am not prone to the effects of eating to much and don't need Nexium for heartburn, however, I do have a bad reaction to mosquitoes. I don't know why, but there you are!


I left the balcony doors open so that I could enjoy the cool breeze that was blowing that evening and that was asking for trouble, because the mozzies were out in full force. One of the little monsters had bitten me on the inner side of my  middle finger but at the joint of the finger and my palm. It started slowly, but as time wore on my finger got a big blister and more and more swollen and because of the strange position that the bite was in, it was very hard to itch it or scratch it and nothing I could do would help.  My finger was swollen to the extent that I truly thought that it was going to burst!!


I wondered how I could 'pop' the blister because that was the only way that I could imagine that I was going to get on top of this problem. At first, I thought, "I will use a straight pin to pop it", but after a few goes at 'popping' the bite, I became worried in case I swallowed the pin, so, that was no good. Then I thought about a safety pin and I trawled though the house looking for the very thing, but when I got the pin, I couldn't open it because you need one good hand to open the pin (which is very small) I had, but then you have to hold that pin in your hand to prick the blister and I didn't have that!


I sat and thought some more, and then I realised that the pin was too small and a bigger pin, like a baby's nappy pin would work and I had one of those, but it took me the next hour to find that pin which was in our 'Memories' box, high up in the cupboard. It took me another hour to get the box down from the cupboard and you have to remember, I have to do it in a way that won't 'brain' me when I pull the box down! Eventually, I did manage to slide the box forward enough to get it over the edge of the shelf in the cupboard and catch it in my one good hand! Yaaaayyyyyy!


When I got the box open, I then started to look at all the lovely memories that the box held, and for a while, I forgot the blister on my hand, but not for long. I then went into the bathroom and was standing at the sink in front of the mirror (with the plug in the basin!!) and tried to 'pop' the blister while I held the safety pin in my mouth. I tried and tried, but it is so difficult to do something in reverse! By that I mean trying to do something that comes naturally but when you look at your self trying to do that thing in the mirror, you can't do it!!!


After a half and hour trying to 'pop' the blister, would you believe it - it popped!!!!! I was laughing like a loon and hopping, dancing around knowing that I had done something that no one told me do or helped me and I was soooo happy that I was laughing and not crying like I would have done not so long ago.

Dress-ups

After I came back to Sydney, I realise that I was over being a disc jockey and needed to do something else, but it had to be a creative role and I didn't know what I was looking for.


My youngest sister, Melissa, was working as a house model for Grace Bros. at Parramatta, one day I went to see her working and met her boss Lainie and thought, 'Hmmm - that's the kind of work that I would like to do', and would you believe it - a position came up at Grace Bros, Chatswood (which is my local neighbourhood store!)so, I applied for the position, which was advertised as a 'causal Fashion Co-ordinator' not really thinking that I would get the position (but really, really wanting it) but after going for 4 long interviews, I actually got the job!


I started at the Grace Bros Chatswood, as a casual, working only the days that the parades were on, but after a short while the job became much more than a 'job' and I loved it!


Someone once asked me 'what would be your favourite kind of job' and I said, 'playing dress-ups with real people', this was that kind of job! I really had to 'play dress-up's' with real people!!!


The job consisted of putting on fashion parades in the store and working in the particular area that the garments came from. Sometimes they were little parades about 'Big is Beautiful' or 'Moderate Price Dresses', or 'Lingerie', especially if it was Mother's Day or something like that. Of course, every Spring we had the fabulous High Fashion Range which we truly looked forward to! However and unfortunately, High Fashion looks good and keeps us in work, but that doesn't keep the fires burning for most of us, so, anything that the store thought would bring in the customers, that was what we tried our best to sell.


I was excited about shoes one time and thought that we should make the shoes the main point and not the clothes, so, I got the models to wear leotards and we decided that the models would just show shoes so, they did!! It was sensational! The girls were on a stage and the curtain cut them off at the knees and they danced and high kicked and went on like a chorus in a big show and they high kicked to New York, New York and it was brilliant and boy, the whole thing was so much fun! 


Another day, we were doing menswear in the store and I wanted the boys to be different, so, I had them dressed in long grey trench coats and made sure the music was appropriate for each segment. They started off with 'one day your'e gonna get caught, one day your'e gonna get caught with your pants down', that was another parade that was soooo much fun! We had a segment where the male models had to dance to 'Putting on the Ritz', and dance with the older ladies in the crowd! Grace Bros was pretty much a tight ship' to be working for, but they had a sense of humour and we made fabulous parades!!!


There were six part-time 'house' models who would be complemented by six professional models from the major model agencies in Sydney. We had Tina, Michelle, Kate, Rebecca, Janelle and Brooke. The 'House' models were gorgeous girls who were learning their trade by being part-timers while they learnt all the tricks of their trade from us their employers and the professional models and it was a fantastic way for the newer models to learn their trade. Some of the House models are still friends of mine today after almost thirty years, especially Janelle or Miss Johnny as we used to call her (Miss J is pictured starring in a parade) and Tina who I have known for over half of her life!


I wish that girls today, had something like our girls did at Grace Bros in the 80's and 90's. A way to feel like they are amongst the hype but have a 'den mother' to look out for them and keep them safe.

Count my Blessings

I have just come back from Royal Rehab where I finally got my cast off! I am so grateful to Lisa, because it is not always a fulfilling job, to be an OT. The 'clients' or as I will always call us, the 'patients' are a funny lot, not funny haha, but funny weird! Sometimes, I can't understand why the people who work at RRCS, actually work there. I look around and think it is such a difficult part of anyone's life, why would someone choose to work here? Especially working with the patients and how angry they are!! I couldn't understand why anyone could get anything good out of working at a rehabilitation hospital. But I am so glad that they do and you know what? I met a young man there today, someone I have been trying to meet for about 6 months and I feel thankful that the beautiful staff who work at Royal Rehabilitation Centre Sydney actually work there, because no one else would be so patient with us broken people!


Blessing, is from Zimbabwe and he came to Australia last year to visit two of his sisters and two days before he was to return to his homeland, he had a stroke - he is 30 years old. A young man in the prime of his life! I at least had had a full and wonderful life before, but this man is just a boy. Someone who could probably not live in his hometown since he is what we call 'disabled', and people like us find it very difficult to live in our society, here in Australia, imagine how much more difficult it will be to live in a male dominated country where if you can't work no-one want's to know you.


Blessing of course, was where I was not so very long ago (hating the world and everyone in it), and not trying to make the most of it. Angry that the world kept on turning while I was in so much pain! Well, I think Blessing has begun to realise that he is still alive and that he is NOT going to wake up and find that this is a nightmare. The poor young man has got to face facts, and let me tell you, it is a harrowing thought.


I told the girls of my stroke, where I was at the time, how long I was in hospital, how I couldn't walk, couldn't talk, couldn't even sit up, eat, swallow or go to the toilet. We became a little teary, I told the sisters of my long and thankless rehabilitation that my whole family lived, breathed and helped me through. I told them how I wanted to die for a long time, but I couldn't think of how to do it being so disabled for such a long while.


I told them that I imagined filling the bath and falling into it from my wheel chair, but I was so frail I couldn't put the plug into the bath; throwing myself of the roof of my apartment, but again, I couldn't get my wheel chair into the lift and out onto the roof; I tried saving my medication and taking the whole lot in one go, but swallowing was impossible for a long time and I just ended up with medication all down my front !! I screamed(in my mind) and raved and ranted at GOD for 'doing this to me', but eventually I, like Blessing, had to realise that I was going to live regardless and how I lived was up to me.


I met Blessing's sisters' through a lovely friend named Richard, who thought that I might be able to help them because I had had a stroke myself and knew exactly what he was going through. Anita and Debra were going through the pain of having someone close to them survive a stroke but knowing that he needed specialist rehabilitation, were feeling like they were banging their heads on a brick wall trying to deal with their brothers negativity and depression when he would not do come to Royal Rehab and do the exercises or the speech therapy or what ever it was that he needed to be doing but just lay around at home most of the time.


Anyway, Blessing had no desire to help himself for a long while, as he was in emotional turmoil, but with the patience of the staff quietly urging him along, he has slowly come to realise (as we all do!) that the only person to benefit or not from all that the rehabilitation on offer - is YOU. I was at Rehab (it seems that I spend half of my life there!) last Wednesday and when I went into the outpatients reception room, and Lisa (my beautiful OT) said to me, "Oh Wendy, you wanted to meet Blessing didn't you, well here he is", and I was so surprised to meet him after 6 months of planning all I could do was hug him and smile like a cheshire cat!!! We are going to meet in the city with his sister's, and Richard and take it from there.


I was watching a program on TV and the story about Simon S was on, he has been diagnosed as having Motor Neurone Disease (MND), a disease that robs you of everything except your mind and then when you can't breathe anymore, hopefully, you die! It was so sad, that I can't understand how these people can go on with their lives, but they DO. Sometimes I get so angry at GOD and can't understand how people like Blessings sisters' still have so much faith.


Sometimes, you just have to shake your head in disbelief at how horrible fate can be, but as a Aunty of mine wrote to me, "life doesn't always take us where we want to go, but the path we walk is the path that we are meant to be on..whether good or bad...love, live and learn", and just hope that it all turns out in the end.

Working Girl.

After I came back from Maria's home in Newcastle, I still had a lot of rehabilitation to keep me occupied and I was still very frail, so, when I was taken to my fantastic place of work for a visit for the first time since I had the stroke - of course, I was crying! I went to have a 'barbeque' with my workmates and it is a testament to how 'normal' all these people were, they didn't show how affected they were, especially my immediate boss, Kylie. She set the standard for everyone at Screenrights and they just carried on regardless and welcomed me back. I am blessed by having her as my mentor before the stroke and as my friend after the fact.

It was 15 months before I was strong enough to attempt going back to work for just a half a day at a time. Leaning on my walking stick and taking small slow steps I was so excited that I had a place of work to go to! I am sure that no one who hasn't been where I have been, can imagine, just how important a regular place of employment actually is! Just getting up in the morning, with an aim in mind is fantastic, but to get ready and 'go to work' is beyond anything I have ever imagined. This has been the most wonderful gift that anyone could have given me. Kylie and the rest of the staff, have no idea how important having somewhere to feel like I belonged, that I was still a valuable member of society has made my recovery so much easier and made me what to get better, quicker.

Just the logistics of getting me back to work were like a military operation and my work place had to undergo an rigorous OH&S person making sure that my desk, chair and foot stool etc were in the correct place, where I got out of the car and into the building and the OT ensured that everything went smoothly. I was picked up from my unit block in the morning and driven to work where I would do a small job for a couple of hours and then driven home again where I would have a sleep for another hour or so. This went on for about 4 months and then I progressed to a whole day!!

After three years back at work, my routine has worked out really well for me. Now I am happy to say, that I work two whole days and that is about all that I can handle, with my rehabilitation taking up two of the other days. I go to a stroke meeting once a fortnight with my friends Barry and Michael and others from the Stroke Group and I go swimming or walking for a good couple of hours another day, other than that, I have wonderful friends who make sure that my life is full, I am happy just to sit back, relax and enjoy my life.

It is really strange to say that I am grateful for the way the stroke happened, because if it had happened differently, who knows what could have gone wrong and what could have happened to innocent people who crossed my path.

On the day 17th of March 2007 I had the stroke in the gym, I was about to get in my car and drive my (at the time) 16 year old daughter Erin to her part-time job at the movie house in Chatswood. Thank heavens that my stroke happened before I got into the car so I didn't crash into an innocent person while I was driving along the road, I didn't run over any pedestrians or bump into anything at all. Imagine how terrible it would have been that along with my stroke I had killed or maimed someone else!!!

On the 18th of March 2007, it would have been the 75th anniversary of the opening of the Sydney Harbour Bridge and the girls and I were lucky enough to get tickets in a ballot to walk across the bridge. The whole bridge was closed to traffic and hundreds maybe thousands of people were walking both ways across the length of the bridge it in high spirits having a great time and there would have been no way that an ambulance would have been able to reach me time in that melee of people and I would most probably have died then there or at least been much more incapacitated than I was.

Finally, as I have said, the girls and I were booked to fly to New York in less than two weeks for a months holiday, I most probably would have died in international air space and my children would have been left alone in a strange country with a dead mother!

As it is, to mark the five year anniversary of having the stroke and how far I have come since then, I am hoping to fly to New York in April 2012.

Pooling my resources

Today, I am going to try to explain what the stroke has done to me in the way of a Brain Injury.


When I was still at Royal Rehabilitation Centre Sydney for the first time, the physiotherapist wanted to get me into the hydrotherapy pool and me not being able to speak thought that this was a good idea, until they got me into the hoist and lowered me into the water, I was sort of mewling and crying because the water felt like needles piercing my skin. I tried to move away from the hoist and me being paralysed all down my right side and being held into the hoist by straps, it was like torture for me. Fortunately, the physio was watching my face and realised that something wasn't right and got me out straight away. That was the first time that my poor messed up brain, got it all wrong.


That happened many times at the hydrotherapy pool until the physio said to me "Wendy, it is water remember, we came here yesterday, it's not hot, just body temperature and it is feels nice and is very good for you", I looked at him and something seemed to shift in my memory and I had a vague sense of water in a pool with me in it before and I nodded my head. We tried it again and even though it still 'hurt' every time, I realised that the nice man who was holding me still in the water, wouldn't do it if it was really hurtful to me, so, we had many times in the hydro pool and the hurt got less over time.


I still go to the local pool to walk up and down in the water (I can't swim anymore as my right side doesn't respond - just imagine how funny it would be to see me going round and round in the same spot and I would have probably drowned if not for the aqua belt that I use to use at the pool) and I still have to spend about 5 minutes 'talking' to myself so that I can actually step into the pool as a part of my exercises and I don't even use the aqua belt anymore so I am able to concentrate on the walking. It is so relaxing not to feel my body in the water and I agree with the physio who was so kind and made me realise that even though the water 'hurt' me at the time, it slowly got better.


One day at my sister Maria's pool in the early days of having the stroke and my sister's saw my right leg 'acting up', when I tried to sit on the steps of the pool and have my legs in the water - my leg stuck straight up in the air and we laughed so much because there was no reason for it to do that, but it stayed stuck up in the air until Maria got a noodle and wrapped it around my leg to keep it down in the water!


I was a good swimmer and quite liked going to the pool and loved going to the beach - now, I can't really go to the beach at all, because I can't walk on the sand! I know that sounds strange, but it is true. If a surface is not completely stable my brain goes into over drive and I just end up standing in the same spot because even though I know that it is safe to walk on sand, my brain doesn't.  It 'sees' it as not being stable because it goes up and down and shifts under your feet which is something that is unique to a sandy beach! I can go to the beach but I have to stay on the side where the grass is because the grass doesn't move! I have the same problem when I get out of the car (someone else's car because I still can't drive) and try to stand on the uneven surface of the footpath next to the car. My toes curl up and my brain freezes. It is very annoying and this 'brain injury' is something else again.


Something else that still causes me discomfort, is answering the telephone. It is fine to answer it for my family and friends because they know me and make allowances but for other people, I can't understand what they say on the phone, especially with addresses and phone numbers or anything detailed, they may try to talk in a hurried manner and then, I am lost. I am aphasic, that is my brain has a hole in it just where the speech comes from (as I said in another page of the blog, speaking is one of the fundamentally 'human' traits that just get lost when you have a left side stroke), which is what I have and I just sort of glide over that bit and then piece it together as best I can and hope that most times, I get it right!

There are stories to tell...

I have been very busy with Rehab at Royal Rehabilitation Centre Sydney, where I have been assessed (and passed with flying colours!!) to use the SAEBO Flex! This is huge, because our Rehab Centre has had no-one to research the product and now, they do!


As you all probably know, the internet is a wonderful tool for anyone to find out about anything, but it is especially useful for disabled people for whom the trauma of going to the library or school or anywhere to learn about what new discoveries or inventions are available to them are immeasurable. I am one of those. I trawl through countless pages to learn whatever I can and one day, I just happened upon the SAEBO company and it sounded interesting, so, I down loaded the papers from the internet and took them along to the next appointment with the lovely Lisa - my OT and the wonderful Medical Director, Dr Brian Zeman.


Lisa (as if she hasn't enough to do!!), went home and looked up the SAEBO company and looked at the DVD's on-line and decided that the SAEBO Flex was a really good idea and so, she spoke to Dr Zeman and together they have made it possible for me to be 'assessed'. 


Lisa together with another gorgeous OT from Canada, named Julia (who has had the SAEBO training, but no-one to try it on!) had a list of measurements of what you must be able to do with your arm, elbow and shoulder, for the assessment, fortunately I was able to do all of them, then Julia had to work out which of the funny looking 'finger things' fit each of my fingers and then we ordered the device last Tuesday!


I am soooo, excited about this new technology for helping to 'train your brain', and this is what the SAEBO flex does. Once I have the device fitted to my right hand (the stroke affected arm), I should be able to pick up these balls with a sort of sticky surface and then place them in a container - as far as I know, I have to learn the how, why's, and the wherefores of picking up and putting down these balls - and you have to do it over and over and over again (the same as the exercises that I do now, but with a lot more finesse!) and huge differences have been been seen to be made, so, it is really up to me and how much work I put into the exercises. So, for me, the idea is to end up with a 'functional hand', that doesn't mean that I will have hand movements like a normal hand, but hopefully, I will end up being much more able to do things like. hold my toothbrush in my right hand, or hold my my fork, that sort of thing.


Unfortunately, I now have to have my tendon stretched which really hurts!! I have my affected arm in a cast which looks like I have broken my arm, except my hand is held at right angles to my arm as if I am saying 'stop'! It is a very awkward cast to say the least and as well as hurting, the cast can't get wet as it is a softish kind of cast not really hard at all, just heavy, so, showering is very hard and washing your hair, forget it until the cast comes off!  I will have this cast on for 5 days, until Monday afternoon when Lisa will be taking it off - yayyyy - so, sleeping isn't very comfortable either as when you turn over the cast doesn't come with you and wakes you up to turn over!

Many people who see me wearing this cast, say 'oh you poor thing, what has happened to you, you must have a bad break' (if only they knew), because of the way it has my hand sticking out from my body, but you know what, I wouldn't have it any other way. Since finding myself one of the 'broken people', I have learned humility and thankfulness and they don't realise what an amazing place Royal Rehabilitation Centre Sydney is or what human angels the staff are.