My CVA – Stroke
A short story about how life changes with disability. Copyright 2004.
Written by Tanya Pascale. Copyright 2004. I would like to sincerely thank the following people who have helped me along the way to get to where I am today, ironically nowhere near what any of my treating doctors ever thought would be possible. Mr Brian Brophy (Neurosurgeon); Michelle Hardy (Neuro-physio); Mr Graham Beer (Chiropractor); Ms Moira Cashell (friend and masseuse); Edwina Reid (Neuro-physio) and my GP Dr Bruno Rositano. Without the unconditional support from my husband Paul, daughter Elise my family, friends, work colleagues and rehabilitation staff the struggle may have been a bit harder. These people will be here to support me for years to come, and for this I am eternally grateful!
Oh my god, I will remember this horrific night for the rest of my life. 16th December 2002. I left work the usual time, (my terrific job I had with the Department of Defence) was certainly a challenging one to say the least and I have always been a person that loved a challenge. So the prospect of going on leave and spending Christmas in Queensland was very appealing with the added excitement that comes with having holidays and spending the festive season with the ones that are closest to you. That adrenalin rush you get when nothing could change the state of happiness that you are now in supposedly until you experience the biggest emotional upheaval of your life.
My CVA – Stroke
Returning from work in our new dream car a newly purchased Monaro, to our recently completed house in the recently developed estate of Northgate. Things at this point in time could not have been much better for us.
Only a few more days to go before we were off to sunny Queensland with our niece, nephew, great nephew and godson. Myself, my husband Paul, daughter Elise were all excited, only a few more arrangements to make.
It was getting late in the evening and we were having difficulty in deciding what we were going to do for Christmas lunch, we decided to surf the Internet for possible restaurants we could eat at on the day. After an hour or so searching we found one that could fit us in at short notice and luckily was a smorgasbord, Paul’s favourite. After making the final booking we decided to retire for the night. The next event was obviously fate (or depending how you look at it downright lucky). It was a very unique thing that Paul and myself actually went to bed at the same time!!
We were lying on the bed talking about what we were going to do whilst in Queensland, which days we were going to hire a car and general holiday chit chat, and I clearly remember lying there talking. Paul has told me that I said to him that I had a headache and the next thing I can vividly remember is looking at my hand and feeling as though it wasn’t attached to my body. It was the weirdest sensation, almost as if you were drunk and trying to focus on one particular object.
Obviously the blood that had erupted in my brain had not yet reached an area of my brain that would not allow me to continue thinking with the clarity that I was still lucky enough to have, enabling me to tell Paul to call an Ambulance because I was extremely aware that there was something drastically wrong with me.
Neither my family nor myself were prepared for the dramatic change to our lives that we will now have to accept and live with forever!
Before I go any further below is my daughter’s version, of how this has dramatically changed her life.
Incident In My Life – By Elise Pascale
On December 16th 2002, 11pm my life had a drastic change to it. My mother fell terribly sick with a stroke. It was the scariest thing that I have been through in my lifetime and I would say it would be the worst thing to happen hopefully to me, touch wood. It all started at 11pm and I was just sleeping peacefully until my dad burst through the door and said, “go and stay with your mother”, at that point I was so scared and had a massive anxiety attack. Shortly after I was sitting there looking after her she went into a fit and then collapsed. As she collapsed she fell on top of me, it was so traumatic. I could not explain to anyone the way I was feeling. Shortly the ambulances arrived. The first ambulance had absolutely no idea what to do, so they needed to call for a specialised unit. The ambulance then rushed mum to Modbury Hospital, which is like a holding zoo for animals not a hospital for patients. They told us that they couldn’t do much, they basically gave up. The doctor told dad and myself that mum wasn’t going to live. My dad demanded that mum be taken to another hospital. Mum ended up at Flinders Medical Centre by this time it was 3.00am.
It was a traumatic time for us both, sitting and waiting not knowing if mum was going to live or die. We were lucky to get such a fantastic brain surgeon, as my mother had a stroke, which affected the left side of her body, and left it totally paralysed. Mum pulled through the operation; she was in a coma for 5 days before she woke up. My dad and I waited at Flinders anxiously for mum to breathe on her own. Suddenly she woke up and to our surprise she knew who we were. We were so scared that she was going to be a vegetable. To our surprise and delight she wasn’t. This was excellent news but I wasn’t looking forward to the time that was ahead.
It was the hardest thing that my family had to go through – 1 month after being in Flinders mum was transferred into a rehabilitation hospital called Hampstead Rehabilitation Centre. Going into that place was a real eye opener, it makes you realise how lucky you are! How we take our freedom for granted, and you don’t know and realise until it is taken away.
In the coming months mum spent in the rehab centre was hard, and at first I couldn’t even step a foot into that place as it sent a shiver up my spine, but I soon had to make myself as my mother needed me. There wasn’t much I could do or say, as I was scared at the way the accident had affected my mother. It was like god had taken my mother and sent me another one. As the months passed I watched my mum slowly improve with her walking and speaking and I watched with amazement as my mother was such a sick person at this point but she has inspired me in such a huge way. When I think things were getting too hard to handle, I just think that I am lucky to still have my mother with me!
When mum finally came home from the rehabilitation hospital things were harder than they had ever been, because my mum soon realised that she didn’t have her independence anymore.
To this day I still find it terribly hard, but I still have my mum and she is improving every day. I am now suffering from post traumatic stress because of the stroke, but it has made me realise that life is too short not to enjoy it, we are here for such a short period of time, “make the most of it!”
This passage that my daughter had written breaks my heart when I read how she must have been feeling during through this most horrid ordeal, such a traumatic thing to go through for any child. Day after day I wish that I was able to change this experience for my daughter and husband! The realisation that this event will be one that haunts them for the rest of their lives. Please God assist in helping my daughter and husband come to terms with what has happened and move on to the next chapter in our lives together “as a family”.
Those weeks whilst in Flinders Medical Centre are still a blur. I don’t recall asking what had happened to me, why I couldn’t move one side of my body. Why my left hand was clenched into a fist! Why my left foot was curled to face the inside of my leg, why my left side of my face had dropped substantially compared to the right side of my face – what on earth had happened to me.
Why such an awful misdemeanour had reared its ugly head on me. I was a nice, friendly person, who would not hurt a mouse so the saying goes and to have such an unfortunate thing happen to me WHY??
This was a question that swirled around in my head continuously, the feeling of sickness, and anxiety in my stomach that would not lift or go away. What terrible life lay before me and ahead of me, not walking, not being able to do everything for myself after years of being totally independent – oh my god, why would you want to live your life like that: What kind of life am I now going to have? Will it be my life I SAY NOT because this type of life did not compare to what I was used to! For me this is only an existence one that I certainly was not happy to live.
During those first few weeks you drift in and out of realism. Has this really happened to me, why has this happened to me? The constant reminder from the clear presence of the nurses, doctors, family and friends. The constant stream of the most delightful flowers from well wishers, friends, work colleagues with all this surrounding you reality hits and it hits hard and that yes, this terrible curse had really been bestowed upon you. The shear feeling of panic, as reality hits is one only a person that had been through such a torturous time, could clearly understand and appreciate.
The realisation of this totally bizarre existence that god had now chosen for me struck me like lightening. Emerging from inside my half paralysed body was the stubbornness and determination that had helped me throughout my life. Something that I would draw strength from to get me through this torrid situation.
I could not possibly accept the extensive disability that I was left with. I wanted to be the mother to my Princess that I had been before, I wanted to be the wife to Paul I was before in all ways possible. After all I had known Paul for an amazing 27 years – we had grown together from adolescents to middle age. How could I possibly sit by and watch my life pass me by. I demanded and made a pack with myself I had to achieve to my best ability , the life that I used to have, be the person that I used to be, not believing and understanding that I would never be the person I used to be.
Every negative word I heard I got angry. There was no room in my vocabulary to consider the possibility of any negativity. The only thing my brain could consume was positive thoughts. I WILL WALK, I WILL DRIVE, I WILL RETURN TO WORK, I WILL HAVE MY LIFE TO THE CLOSEST IT WAS BEFORE THIS HAPPENED. The therapists found this positivity non conducive to their way of thinking, after all they were trained not to give any false hope. The very most important and encouraging thing you seek from professionals is reassurance to progress. I was determined to prove to these non-positive professionals that they were wrong and not to assume that everybody is the same.
My rehabilitation at Hampstead began with an unrealistic vision caused by absolutely no knowledge about what I was about to embark on. I thought that when I arrived at Hampstead the first day the therapists would have me walking on a treadmill to build up my muscles that had been damaged in the stroke.
My vision could not have been any further from the truth. There was about a week of testing to ascertain what damage had been caused by the stroke, mentally as well as physically. It was a slow process, the testing was very complex and indepth, bearing in mind when I arrived at Hampstead on the 9.1.2003 I was being craned in and out of bed and in a wheelchair. I walked out of Hampstead on the 17.4.2003.
It was a daunting experience arriving at a rehabilitation hospital for people with brain injuries, which had been caused by all different accidents. I referred to the patients and Hampstead showing a resemblance to being in the film “One flew Over the Cuckoos nest”. I refused to eat with these people or even better associate with them at all. A comment that I deeply regret today, because a few of these people are now very close life long friends. My complete ignorance and denial that there could possibly be anything wrong with me in any similar way to these people sickened me!
My main focus with rehab was to achieve the ability to walk again, whether aided or unaided, THAT WAS MY FOCUS and nothing was going to stop me from achieving that goal. I worked tirelessly for hours doing any exercises any movements I could to speed up my progress. I was getting so frustrated because it wasn’t happening faster enough. I WANTED IT BACK NOW NOT TOMORROW!!
I recall the first time I took a few major steps which was the length of the double bars used in the physio room. This particular day, Paul and Elise had come in to see how physio was going. I was so proud of my steps that I had achieved previously albeit a few I had not let on to Paul and Elise this achievement, I wanted them to be proud of me and love me again. The time had come to show them what I what I had been secretly working on.
I would say that it was one of my most memorable days in Hampstead. Paul and Elise were sitting on a bed watching me, mesmerised by the excitement in the air not believing what was about to happen. I started with my first step, found the rhythm and starting taking one step after another, my physio Michelle was yelling GO GIRL GO GIRL YOU CAN DO IT jumping up and down, spurring me on. The atmosphere was electric, Paul was crying watching me, Elise was crying watching me, Michele was crying, I was crying and the other physios and patients stopped what they were doing to watch me in astonishment as I walked the length of the double bars unaided only holding on with one hand!! At the end we all were crying and hugging each other with joy. WHAT AN ACHIEVEMENT, MY FIRST MILESTONE in my lengthy recovery. I knew in my heart and mind at that time I was going to walk again unaided for sure. The emotion and atmosphere was overwhelming at this time. I had my first challenge and won contrary to the professional’s opinion. This was the beginning of my achievements, and recovery.
Another focus I had whilst in Hampstead was to put my energy into helping other patients not so fortunate as me. This made me forget about what had happened to me and gave me immense satisfaction to help others. I focussed on a few patients for various reasons were not as fortunate as me and in particular a patient who had lost her ability to speak through her stroke. She was a married lady with 3 children, all were extremely distressed about her stroke. She was such a lovely person, who I befriended and wanted to help teach her to say her husband’s and children’s names.
I spent a whole day focussed on this patient hoping to reteach her how to say her husband and children’s names so she could confidently surprise them that evening by calling them by their names. I spent hours and hours that day repeating over and over again until she could say their names.
Her husband came and found me that night crying to thank me and saying to me that it was the best thing he had received since her stroke. Helping the other patients took my mind off what had happened to me.
It has now been 18 months since I suffered my stroke and have regained the ability to take charge of my life again in so many ways. I am now driving again, walking independently, returned to work, doing most household chores, taught myself to touch type with one hand with a menial speed of about 25-30 wpm and still increasing. The specialists are telling me that I probably wont get much more use in my hand than I have now, but I am not giving up. I will work 100% to achieve more and more use of my hand, and will show them one day. When ever I feel that things are getting just a bit hard I always think about the other people I met and how lucky I am. I say LIVE LIFE TO THE FULLEST TAKE CHARGE OF YOUR OWN DESTINY – IF YOU DON’T NOBODY ELSE WILL.