Author: ebsmart
A little later…
It has been a while, I haven’t been writing because I have been busy doing other stuff.
I have painted, repaired things, cut grass, gardened, been volunteering at school, just all the things that make up life.
There have been surprises come my way and they are like gifts from the universe. People have left and others have come my way. In the past I used to fret when people left but I have managed to learn to let go more easily. It is comfortable actually. The more I have learnt about myself lately, the more I have been able to accept these comings and goings. I guess the firmer I am grounded in myself the more independent I can be. That is not to say I don’t enjoy to be with others but it isn’t about needing in a way that makes it essential.
So, I have started again and I will be musing and reflecting more frequently.
When to say what
Sometimes it seems that everyone has an opinion on everything all of the time. Perhaps that is ok after all who makes the rules for that sort of thing? Yet, for me, it sometimes seems better to wait a little before pronouncing, especially if the topic isn’t really one that has been researched a great deal.
I have probably held back in speaking out on many topics because I have lacked the confidence and I am trying hard to change that. I find it particularly difficult if I differ greatly from the perceived majority and the fear of being cut out or torn down always looms.
If something is really close to my heart and yet I differ in my opinion from those around me I will eventually speak up. When then the issue of LGBTQ equality was discussed in the community at large I could no longer hide for instance. Even though I live in what I would consider a conservative region of NSW I started to cautiously remind people that we all have the need to be included and respected, that we may be very different in our lifestyle but we are nevertheless the same in our humanity. I simply could not accept the pronouncement of biblical argument as I would always be able to counter with other, valid verses. It is always that which is different that is rejected, out of fear and mostly ignorance. Race, religion, nationality, we can pick on aspects about other people’s lives and pronounce, reject and dismiss. The sad thing is that they never know how limiting their lives are because of that. My life has been very different as I have had the good fortune to travel and be immersed in other people’s lives. It was challenging sometimes but I tried to learn and be open. After all I can still chose how to be and how to live. I can take a little something from here and there and add it to my life and make it richer, more exiting and colourful.
Then, of course there are politics, another difficult part of communal life. Some people are very loud trying to influence or pull people to their opinion. Often heated arguments ensue between friends, neighbours or perfect strangers. Everyone is right and many find it difficult to tolerate a differing view. Sometimes I don’t like an opinion or view of the world either but I find myself thinking that it isn’t worth challenging the other most of the time. I don’t like conflict that seems pointless and really doesn’t alter anything. That in itself probably rules me out for a career in politics, I simply wouldn’t have the stamina to push a line and argue pointless points. If arguments could be made gently, with respect and from a base of knowledge and responded to in like manner it would be one thing. We might be able to agree to disagree but it is the fervor that gets in the way for me. If I change my opinion it usually comes from having heard knowledge or a side I had not considered or seen and I have been able to reflect on that but it is never simply because someone pushes a line strongly.
Religion is another one, very close to people’s hearts or rather should I say emotions. It is often in the realm of unreasonable when people hold forth on religion. It is one thing to discuss to learn, examine and understand it is entirely another to reject because it is foreign and difficult to understand. Religions try to order people’s lives and help them to live fruitful and good lives. It is often in the interpretation by humans that a religion and its tenents fails. We don’t have to agree with everything but neither do we have to reject everything elseeither. Religion is a bit like a powerful weapon, in the wrong hands it can be dangerous and even fateful. More atrocities have been committed in the name of Religion than almost anything. I do have quite a bit of experience in the field of comparative religion and I find the more I know in some depth, the more I can relax and let live. Again I don’t have to follow what I don’t feel is suitable for my life but I can allow others to be where they are. Whilst it annoys me when people are down on say Islam without knowing the least bit about it, I generally can’t be bothered to try and correct them because it would take too long to go into any depth and their minds are already made up. I judge on an individual basis if it is worth the effort but I have accepted speaking engagements where I have been able to educate on some difficult topics.
It is far better to live in peace with others but to speak when there is some benefit in doing so, to educate, to support, to encourage to exchange ideas meaningfully. There is a lot of noise out there and I don’t need to add to it. Unless it is kind, based on some knowledge and of some use to others I will just stay fairly quiet. I will use opportunities such as this blog to voice my own views and whoever stumbles upon them may gain something or just let it be.
In their shoes
It is painful to walk in their shoes, it is the agony of walking through memories of dark times lived before. It is identifying with with their broken hearts, remembering the feeling of the nails in the chest, the feeling of utter despair that threatens never to end.
How can he, she, just be gone, never to speak again, never to be held again. How can the sun shine so bright, how can the world just go on. Yesterday they were there, reliable, funny, loving and close.
How will the young ones cope, come to terms with such a deep loss, how will the older, yet still dependent kids fathom what just happened in their reliable world to change it forever. Mostly though, how will the partners deal with life with the new label of widow and widower. No longer wife, husband, a new title that has arrived unbidden. From one moment to another life has changed forever and he, she will never be the same.
The longing to hear the voice but unimaginable pain of listening to answer machine recordings. The familiar items on his, her side of the bed. The smell on the pillow and the clothes, can it be held and keep the closer for just one more moment.
At first it is moment by moment, hour by hour, day by day, the holey road of grief; a path littered with holes to fall in only to be crawling out of until the next one. Life as it has been known until now has just unravelled like a piece of knitting.
It is too much yet somehow we get through the journey of the firsts and then we come to terms with the new unwanted reality and find our feet again.
It is a long and painful journey and ever so often someone close to us has to go through it as well and it triggers the memories of a path already trodden. It is then we walk in their shoes for a while.
Why volunteer
For years I have been volunteering even when I was also employed elsewhere. Somehow volunteering fulfilled a part of my being that has wanted to be free from ties like money, position or too many rules. Volunteering has given me the freedom to name many of my own terms. If I apply for a job I consider the position,the pay and the conditions but if I volunteer I draw from a different aspect of myself in relation to the work on offer.
Whilst I was a parish minister I saw an advert for a volunteer to be a companion in a house for people recently diagnosed with Aids. The person would be required to assist the residents with cooking an evening meal, eat with them and be present for after dinner activities until bed time. Yes that’s me, I thought, but not in the capacity of a minister/chaplain but just as a compassionate person. I applied and got the position to be at the residence one or two evenings per week. I didn’t tell anyone what I was doing I was just out on those evenings.
The house was comfortable and “homey” with between 4 to 6 male residents. Cooking was fun and mostly I was delegated to chopping and cleaning up. The meals were interesting and depending on who was there could be filled with lively conversation or fairly quiet and reflective. Once they got to know me, more and more personal stories were shared and such conversations continued after dinner, often in front of the TV. The men seemed sensitive to the fact that one or the other needed to have a deep and meaningful chat and would leave us alone. It wasn’t necessary to talk about their personal lives but I guessed that my presence was an invitation to do just that. I loved that I could be a neutral sounding board and at other times I was a bad chess player or just the other body in front of the TV. I did this work for quite some time until I moved away for my other work.
Whilst I worked in a psychiatric hospital as a chaplain I volunteered at one of the local prisons, also as chaplain. That was really my preferred occupation and a means to get employment in this field later on. I would spend at least one day over the week end inside and again I knew that I was making a difference and my ‘pay’ would be a deep satisfaction nurturing my soul.
After retirement from paid employment due to health reasons I felt motivated to volunteer some of my time at a local primary school teaching ethics. My new and fairly unfamiliar role challenged me quite a bit. Until now I had always worked with adults but little people were new to me. The classroom itself was fine but inevitably the room was buzzing with excitement and from time to time I had to call on the principal to come and help me restore order. I also felt a great responsibility to get all my facts straight and be prepared for some curly questions. Kids believe what you say and take it all on board quickly. Much fun was had I have to say and the kids loved my classes. Unfortunately health issues intervened yet again and I had to take a break.
For a while I conducted art classes for kids in a disused room attached to the local shop. Some earnest artists emerged among the local children of varying ages. I felt so good to be able to provide the space to explore creativity in a space totally different from school or home. We used the shop or it’s contents for drawing or colour exploration. It was so surprising how the children interacted, the older ones helping the little ones without being asked to do so. Behaviour was excellent and a far cry from the chaos at school.
In the meantime I was invited on an advisory committee dealing with recovery from mental health issues. I knew that the subject matter was of interest to me but after a while I couldn’t stand the beaurocratic approach to our meetings and it reminded me too much of some of the restrictions I had encountered in my work over the years. Luckily as a volunteer it was much easier to make the decision to call it a day.
A friend who had seen my emergence as an artist, recommended me to work as an arts and craft facilitator for a women’s program. The women are rehabilitating from drug and alcohol addiction and are under threat to lose their children. This was very much up my alley but I chose to volunteer as, again, I needed to gave some freedom to work in that capacity. I chose the day and time for my group and I could limit my responsibilities to the artistic activities. As the women are fragile and vulnerable I wanted to draw boundaries for myself. If issues crop up between residents there are staff members to draw on to deal with these. Naturally personal issues are inevitably discussed and that is fine but once problems emerge they are dealt with by assigned case workers. So far it has been the most satisfying and inspiring work I have been able to do as a volunteer. Precisely because of the voluntary nature of the work as a gift to the women, it had proven to be an affirmation and an inspiration that keeps on giving through the self esteem it fosters among the women.
So, why volunteer? Because it allows connection at a very different level to that of employment. That difference exist between all concerned the
Lost Connection
It was a mention, just an aside, that informed me that Chris had died. Whoa what a shock!
Chris was a mate, a fellow minister in the Uniting Church, a guy I trained together with at the Theological College all those years ago. Over the years we had quite some contact as we worked in the same larger area and we served on a committee dealing with sexual misconduct by ministers together.
Chris was a funny sort of a guy, short in stature but big in character. He had red hair, a beautiful red beard, a ready smile and a wicked wit. One of the things I remember clearly about him is that he was able to shed a tear in public well before it was fashionable to be a SNAG. He belonged to a very “churchy” family, both his Mum and Dad were very active and well known in church circles and in the Mudgee area in particular. They were what I would all a close family and when Neville died suddenly it came as no surprise that Chris was struggling to come to terms with it.
Chris and I loosely kept in contact and mostly I relied on the church grapevine to keep me informed about people I either trained with or had come in contact with as part of our common work . When I decided some years ago to leave the church I found myself completely cut off from all news about colleagues. I was simply wiped from all access to news and I didn’t realise how this would affect me until events such as Chris’ death reminded me. Of course I knew that wouldn’t get news about the inner machinations of the church any longer but I hadn’t thought about news of my colleagues and fellow ministers. I didn’t know that Chris got married and I certainly didn’t know that he had cancer and died just recently. It really came as a shock, not only that Chris had died but that I had no way of offering any support to someone I actually liked a lot.
Why is it so? It always felt like a punishment for deserting the fold when I realised that I was completely cut off all news about the church at large and news about the locals specifically. I suppose my saying I dont want to belong to you lot anymore said to them that I wasn’t interested any longer but that didn’t actually mean I didn’t care about the people any more. For me it was about the philosophy and what the church stood for, it wasn’t about the people in particular. I spent years together with certain people, training, serving on committees, supporting one another as colleagues and sharing the ups and downs of life, only to find a complete blackout of information on a decision I had to make for myself. I am not sure what this says about the institution but then again this is just precisely why I couldn’t belong anymore. If you do not play by their rules and if you dare to assert your own ideas you are simply cut off. Even if this is how the institution at large plays it, why are the members themselves playing it like that?
Even when it would have been gazetted that I had resigned my membership not one person had contacted me to see how I was faring. It had been a long and at times painful process until I arrived at my decision to leave and in some way it surprised me that no one wondered or questioned what might have happened to me. With one exception I can say that no one cared or gave a shit as my husband would say.
There are many of my former colleagues I am now thinking about and I wonder what might be happening in their lives. How will I know if something major happens? I am cut off the grapevine well and truly and I feel sad about that.
I was looking at the UCA website this afternoon and as an outsider I realised how little access to real information I now have. If you do not belong to us you will not be given any information about us it said to me. I used to see this when I was interested in other religious groups and tried to glean information through their sites but never really saw that it applied to my own. Interest groups but religious groups in particular have almost impenetrable borders around themselves. Unless you profess to belong to them and align yourself with their thinking and their rules you are kept on the outside.. If you are not an insider you have no right to know. To some extent that is scary to me. What is it they are protecting?
Of course now I am thinking about many others and I wonder who else has gone, is sick or might need a hello. I will have to rely on the Universe to send me a message about those I care for, regardless of their religious affiliation. Lucky then that I still believe there is something greater than us I can tap into.
Lets talk about pain
Where to start – pain, pain, pain, my constant companion.
I used to jokingly say to people younger than myself, don’t get old it hurts but in actual fact at some level I ment it . I have found that gradually, increasingly I have felt more and more pain as I got older. Mostly my pain has manifested somewhere in the body but often enough it showed up mentally and emotionally.
Pain is a slippery customer, hard to deal with, difficult to describe and even harder to eliminate. As is well-known humans do almost anything to avoid any kind of pain. We take many kinds of medications to soothe the body, mind and soul in fact we are so creative that we are able to avoid, mask and deny the merest hint of suffering. It takes a lot of energy, all this covering up and running away and it only stands to reason that, as we get older, it starts to catch up with us.
Being a bit of a soul searcher from way back I recognise that pain in some form or another is part of everyone’s life journey. Not that we like to acknowledge that too freely and the average person might think it foolish to dwell on such ‘stuff” too much. After all that might mean to rummage around one’s past and unearth events and feelings best left alone. What god can it do to regurgitate the past, isn’t it better to let sleeping dogs lie? Well, NO I say emphatically and how do I know that ?
Over the years I have looked back for a variety of reasons, to clean out the skeletons in the cupboard so to speak; to learn about myself, to understand myself, to understand others, to heal old wounds, to find a place of greater peace and so on. Whilst I achieved many of those things, pain kept creeping along my path, the uninvited guest at my party.
My life was often like a bucket, springing a leak here and there. I diligently patched each leak as best as I could; sometimes using my own accumulated wisdom, sometimes enlisting the help of others. Gradually the leaks were getting more serious and the bucket had to be repaired to avoid permanent damage. Despite this constant maintenance it looked as if the bucket would soon be ready for the scrap heap.
I am not exactly sure when the rot truly set in but it seemed that after I turned 50 years old my body wanted to fall apart. I began to have more and more physical problems that required attention. I spent time in hospital, I spent time recuperating, only to find that the next issue was just around the corner. Each time I thought that would surely be the end of it I found myself sitting in another doctors’ surgery describing a new ailment and new pain. I don’t consider myself to be a hypochondriac but I was feeling almost embarrassed when I made yet another appointment. In true Swiss fashion I told myself that I needed to rise above it all and push through fatigue, illness and pain and keep on keeping on. Of course this was also helped by the fact that I was very entrenched in a profession that very much encouraged if not demanded a kind of martyr mentality. Self care, what nonsense is that, selfishness more likely, after all a good minister id there for everyone else and doesn’t dwell on mere pain. That may be sarcastic but I truly believe that church culture, no matter what may be said officially, encourages the glossing over of pain of all kinds. I shall get to that in more detail another time but for me matters came to a head about 10 years ago.
I found myself seriously injured through work and was consequently forced to retire much earlier that I had ever anticipated. I managed to limp along for a little while but suddenly it was not only the body but the mind and soul which began to hurt. How utterly confusing, suddenly I screeched to a halt on every level and the pain became excruciating. A stiff Bourbon here and there, a glass of wine or two, a tablet or two – dangerous ground. Chronic pain, finally a diagnosis that made sense but was more slippery than ever. The treatment was mostly unpleasant, more medication, more fuzziness, more frustration and depression. Life was becoming decidedly unpleasant as were my moods and thoughts. No amount of distraction and severe self talk could lift me out of the painful doldrums.
For a while I saw several doctors, most of whom disagreed about the diagnosis and the treatment and to this mix we added physiotherapists, counsellors and well-meaning friends. How utterly confusing, no wonder I felt as if I was in the spin cycle of a washing machine. Somewhere in that mix there was a wise female voice that recommended I connect with a pain clinic to deal with the actual issue of pain at every level of my being but that wasn’t heard by most of those involved in my ‘care’.
More surgery followed, more physiotherapy, hydrotherapy, anti-depressant medication, pain medications, a few more Bourbons and some herbs in the mix. I felt as if I was slowly coming to the end of my tether or following earlier imagery the bottom was just about to fall out of the bucket when I was finally referred to the Northern Private Pain Clinic for an assessment. Like a good story I will have to leave the next chapter for another instalment. My body clock tells me it is time to rest and so I shall, until it is time to talk pain again.
Post Polio Journey
I grew up in Berne, Switzerland, the middle of three children. I was a bit of a tomboy but that is probably normal seeing I grew up with two brothers. One of my most vivid and earliest memories is that of having Polio as a five year old.
I used to go shopping with a neighbour and normally, I would be skipping or running beside her but on this particular day I was dragging the chain. I remember feeling very heavy in the legs. On our return the neighbour commented to my Mum that I was not my usual sparkling self. Apparently I had a fever a few days before and Mum thought I might still be recovering.
I spent the rest of the morning in the playground and when Mum called us in for lunch, the boys ran ahead up the stairs to our appartement. I see myself sitting in a huddle at the bottom of the stairs, simply unable to move. I was scared, not only of the fact that I couldn’t stand up but probably more so that I would surely be in trouble with Mum. When I saw her coming down the stairs to fetch me I burst into tears, it was all too much.
My next image is that of sitting on an examination table at the Children’s Hospital. I am screaming because I have just been given an injection in my spine. The pain of it is excruciating and I am complaining at the top of my voice. Both Mum and the doctor are holding me down as I try to get away.
I had to stay in hospital and I remember standing in a cot, holding on to the railing crying my eyes out. I was told that I was there for a long time and became very homesick. So much so that I wouldn’t eat and spent a lot of time crying. My parents took me home and took me for treatment every day. My memory is being in a room full of equipment and I am in a kind of sling with my legs swaddled in hot rags. Exercises and regular check ups became the norm until I was fifteen. My Mum patiently had me picking up hankies and even knitting needles with my toes. My toes are very dexterous as a result of those early efforts. I luckily didn’t suffer muscle wastage but the leg and abdominal muscles had to be exercised to regain their strength. If my legs became tired from walking too much I would just collapse and for a long time I could not run at all . Poor kid, I had to wear ankle high lace-up boots with insoles. I was very unhappy about my lack of fashionable foot wear. Oh to have sandals for summer but school shoes became the compromise. By about 15 I was finally to wear normal shoes and it was from there on that I developed a serious shoe fetish. I adore shoes and over the years I have found it difficult to go past a nice, colourful and sometimes unique pair of sandals, boots or any other type of shoe 🙂
I can say that after 15 I didn’t spend much time thinking about Polio. I was considered of normal physical ability. I was not particularly interested in sport but one of my hobbies, ice skating, didn’t pose any issues for me. Once in Australia I became an avid walker both in my private and professional life.
Fast forward about 40 years and I notice that I often have to push myself just to get through the day. I can suddenly loose all energy; it feels as if I hit a wall and to go beyond is fraught with pain. Fatigue is becoming a contant companion. I am working so I just have to keep on pushing. I end up having all sorts of tests done to ascertain my problems but to no avail, its all in your head dear.
A conversation at the church door after conducting a funeral introduced me to the term post polio syndrome. It has been found that ca 40-50 years after having had polio, symptoms of fatigue, pain, muscle weakness and respiratory symptoms appear and these late effects have been termed Post Polio Syndrom.
I became interested what this might mean for me and I began researching online. Not only did I find a an Australian register for people who had Polio but there was also a lot of international information available. I contacted the Swiss Post Polio Association and apart from sending me their latest information, they referred me to a doctor who specialised in this area of medicine. Through him I learned that most Polio sufferers will have some symptoms but that not much can be done other than managing the condition and managing the symptoms as they appear. Muscle weakness is progressive but it can be managed. He advised to connect with Polio Australia, through whom I started to have access to education, research results, as well as personal support with other members. I have attended a national Conference as well as regular NSW Seminars and meetings.
I have started to give my body a chance to gain some balance. I have changed my attitude towards my way of Being. I rest to avoid hitting the wall too early in the day and these days I dont get to the point of losing all energy very often anymore. I listen to my body’s needs much better and at times I have taken recommended supplements to help the muscles repair better after exercise and strengthen the immune system. I find now that I allow myself to be boring and spend my evenings retiring early and taking a rest during the day, I can keep my physical levels of fatigue, muscle weakness and pain under control. I have just undertaken an in depth sleep study that will give me an updaten on my respiratory issues during the night. I had been using a CPAP machine but after some weight loss it needed reviewing.
And so the journey continues.
Awesomeness
First Blog, how about that, pure awesomeness!
Who would have thought that I would ever write a Blog. I have done so many exciting firsts in my life but I am very happy to add this to my list.
Creative writing has been one of my latest adventures; it has taken me completely by surprise of how much I am actually enjoying this new craft. It has taken me to some unexpected and sometimes wild places but I sure hope the journey will continue in that vein.
One of the things I want to write about more seriously about is my work with prisoners over the 20 years I worked within the NSW prison system. I did time as a chaplain, Official Visitor and volunteer visitor. During those many years I developed as a person, learned about people, systems, bureaucracy and the human condition.
I have procrastinated about putting pen to paper because the task has been so daunting. On the one hand the stories are numerous and on the other it is tricky to know how to talk about them. It is difficult to know what style to write in but also it appears to be a legal minefield. I truly havent known where to begin and the mountain of issues threatened to overwhelm any kind of effort. It was mainly a course in creative writing that pointed me in the right direction. Just get on with it, start somewhere or anywhere.
I have started to write short stories, some prison related, some social justice related. I keep a thought journal and this Blog is part of my daily and weekly writing practice. it is my hope that eventually these musings may be of reading interest to some.
