My World

My Mothers pain...


The following is a very short summary of a much bigger project that I have undertaken. Since the second anniversary of my mothers passing, I have been writing the book about her life and battle with the dreaded disease called Rheumatoid Arthritis. My project has stalled lately but I just need to edit it as I seem to have enough written material. The source documents include a summary of her medical records from the family doctor and copies of the elegies written by my father and my aunt. More than that it is based on the stories that my mum would tell me from time to time and my memories of her.


For the purposes of this summary let us start at the end and go backwards. My mothers life came to an abrupt end one night in August 2010, a month that is supposed to be special for me and a year that started with so much promise. At the beginning of that year I had found love in my life with a young lady who had been a fellow class-mate at university. I had introduced her to my parents at the previous christmas and the new year was filled with positives. I got a job a little bit later on, although only a temp job and not in the industry for which I had studied but nevertheless a job. Mum had met my new partner and was happy for me/us, I think she was glad I had found someone loving and caring. My partner was even in the family home on the night of mums passing. All four of us were at home when mum had a sudden and severe stroke.


That afternoon was like many others, I had come home from work and we sat down to dinner, mum went into the tv room with her cup of tea. She had been joking with us about her fondness for a cup of tea and how english that was. Later on, she asked dad for a banana and after he came back we heard her call out again for him. It was not what she was calling out that made us run it was how she called out. When we went into the room it sounded and looked like she was choking but apparently unbeknownst to us that was the onset of the stroke. She was going all different colours, struggling for breath and not really responding. It was left to me to call the ambulance while dad shouted answers to do with her condition. It was not the first time I had had to do this but this would be the last.


The ambulance officers came and it pretty soon was made clear to us that this was pretty serious and probably fatal. Once they rushed her off we drove to the hospital and there we were sent to an ICU waiting room. Once they had put in all the tubes and were monitoring her we were told of her status wasn't good! In fact, they said we should ready ourselves for the worst and they offered us counselling. We refused the counselling but we just wanted to see her. Finally we got to stand by the bed and say our goodbyes as she seemed to take her last grasp of breath. I can truly say that death is nothing like what is portrayed on television, the change of colour alone is simply shocking. It was upsetting for all of us, even now upon writing this my eyes well up and a shiver runs down my spine.


You see, mum had been sick for a very long time, as long as I can remember. She was diagnosed with Rheumatoid Arthritis when i was very young, about 4 or 5 years old. I don't have much memory prior to that so my memory is of her with RA. She had chronic, constant pain every day and that took her from a big frame to virtually skin and bone by the end. In the last few years, she had been hospitalised on a number of occasions and her outings usually consisted of visiting the medical centre. There were periods where she would go every day so that the nurses would dress her ulcers. These ulcers took a long time to heal up because of bad circulation. Mum was well known in that surgery/medical centre and some of the staff even attended her funeral. One nurse in particular was 'adopted' by mum, in jest, I used to call her 'sis' and she would call me 'bro'.


She had operations on her legs to clear blockages and several operations on her heart to replace a valve and then later on to fight bacteria that was getting into the replacement. As a result of these she was on Warfarin, a blood thinning medication. If she scratched herself she would bleed profusely so she had to be very careful. Over the years she was prescribed a number of medications for various conditions that she developed usually as a result of the RA. It is an auto-immune disease and affects the nerves and the blood flow which raised the chances of heart attack and stroke


Of course, some hospitalisations were not necessarily out of her control. She would describe herself as 'an extremist by nature' and so when she would have a drink she would have ten. Of course, being unsteady on her feet already with all those medications and drinking do not mix and so she fell several times with various consequences. Such as fracturing her elbow and hitting her head on furniture on the way down in one particular fall. These were the times when I had to call the ambulance and then we would pack off to hospital, usually late in the evening and she would then be in for a few days or more. She hated hospital food to the point where they would worry she wasn't eating at all but she enjoyed the company of nurses, talking to the doctors and other professionals that visited. I would often find her talking to the nurses about their families and plans.


My mum was not one to complain though, she often thought of others rather than herself and had a 'get on with it' attitude. When she was first diagnosed with RA she became depressed but was soon reminded that even kids get this form of Arthritis so she resolved to keep walking. The doctors told her she would be in a wheelchair in five years, a fact that she repeated proudly when walking almost thirty years later. Of course, she walked with difficulty and was only comfortable when walking around the house, but she never wanted to be seen in a wheelchair and rarely entered one unless in hospital or after an evening at the local RSL. Only then would she succumb to being wheeled around and usually with the same back seat driver attitude she always had in cars.


You see, she never learnt to drive herself but could be the biggest critic of others driving abilities. My dad and I were the usual targets of this criticism as we were the ones to drive her to her appointments etcetera. She did however enter a motor scooter at one point and began to walk the dogs in it or make trips to the local shop by herself. However she kept running into the door at the shops or into other stationary objects and would exclaim her favourite expression 'Oh Shit!' We joked about it later because several elderly men would then ask her if she needed a hand. She never thought of herself as old and didn't want to be thought of by others as old or invalided. The scooter soon sat idle in the garage and mum refused to use it at all. It did come in handy later on for dad after he had his knee operation.


Having not learnt to drive and with a fear of flying she wasn't a good traveller, so there was no love lost for geography. Instead she loved history and could appreciate the beauty of things. She enjoyed meeting and talking to people but on her terms and she appreciated solitary pursuits like reading and doing crosswords. It is from her that I gained a strong interest in criminology as she would often read about crime whether fictional or fact.. I would describe her as a feminist but not a feminazi, she could be pretty conservative on one hand but then drink, smoke and swear with the men quite easily. She didn't like to see women controlled, she thought they deserved better but she still wanted to see old-fashioned lady-like behaviour. She had terrible dietary habits with her mantra being 'if food came in a pill, I would take it'. If you met her you either strongly liked her or disliked her, there was very little in-between but you wouldn't have wished that dreadful disease on her.


Mum was a complex, conflicted individual who had her fair share of fears and faults but that just made her more human. She was a strong, independent minded person whose strength and independence was taken from her over many years by a brutal disorder. She was a tall redhead who loved make up and costume jewellery even when her hands twisted and she could hardly manage she still wanted to look her best. She had a violent temper and a relatively short fuse but this mellowed somewhat with age and ill-health and was balanced with a keen sense of humour which she never entirely lost. Being an extremist by nature, she was impatient and vain but covered many esteem issues with a bold as brass attitude.


She had a number of friends from when she was young and an usherette at the old Regent Theatre in Queen Street, Brisbane. Those were the days before multiplexes when you were guided to your seat by ushers and usherettes.  Many years later the former usherettes still kept in touch and I used to call these ladies 'Aunty..', she loved reminiscing about those times. Since then she had worked a number of jobs and ended up running pubs but it was the days of the Regent and her time in Papua New Guinea that she most talked about. It was in PNG that she met my dad and the rest is history so to speak...


I write this, in part, to protect her memory, give it some perspective and show her effect on others. In part, as therapy or closure for myself and just maybe to get the story of her courage against the odds out there. Perhaps this could serve as a source of inspiration to others facing similar situations. You don't need to do it the way she did it, in fact, I really hope you don't do some of the things she did. Just have a belief in yourself and a will to hang in there. She fought an unwinnable war against a terrible enemy, a despicable disease that left her feet and hands twisted and crippled for over thirty years and did it in her own peculiar fashion. She had support from those closest to her but she paid a high price for her stubborn refusal to bend to its will. In that time she saw her only son grow up and graduate, find love and get engaged. At times, like most mothers, I know she doubted these things would ever happen but was happy and proud when they did.


Mum always believed in 'feelings' about people and events, she would say she could 'sense' things. I believe that she had these 'feelings' in the days before her passing. She contacted someone she hadn't spoken to for ages and basically let bygones be bygones. She was also making headway in her communication with her two siblings, especially her brother and seemed happy to be talking to him again. It was a strange twist and even stranger when, after a month of her passing her brother who was older than her passed away too. The families then got together at the funerals, first mums then my uncles. I will always be grateful how my dads family gathered around at this terrible time, some of them literally dropping everything and travelling far and wide to be by his side. Having the family gathered around in the days before, during and after the funeral was a blessing. The old house had never seen so much activity and all this seemed to help the healing process.


Now that i've been writing the book, I wonder what she would say? She would probably say “who better to write this” and “good to see all that education coming to something”, also i'm sure she would say “don't focus too much on my faults”. On one hand she wouldn't have wanted all the 'fuss and bother' but on the other she certainly enjoyed her moments as the centre of attention. Unfortunately, you will have to wait till i'm ready to edit the full work and become happy with it before I would ever think of releasing it. I still haven't figured out whether to self-publish in limited print or send the transcripts to publishing houses for their feedback. I mentioned this in a Q&A question, see 'The show must go on..' This debate over how to publish these days will be the subject of my next blog post.. it will be called 'To print or not to print..'



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Juliet | Reply 01.03.2013 16.09

Terry was a most courageous woman and did not let the medical condition drive her down. Rest in peace without any more pain and deformity.

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Latest comments

10.03 | 19:15

I have stood by and watched a with concern and love. I admire the way you have handled yourself and the situation. My love with you. In admiration. Fly

10.03 | 14:07

Well, come back the TOG you old git. We will love you unconditionally there.

Seriously though, this is a good post. I am sorry for your pain mate.

10.03 | 12:26

Spread your wings you dodo, you might be able to fly.

24.06 | 14:03

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