It’s life, Jim, but not as we know it…

I could never have seen myself writing this piece that I am now about to embark upon. I thought I had it all covered. I thought I knew where my life would bring me. I thought I knew how I would end my days. I always knew we were different from each other. I always knew we had different thoughts, interests, views on life. I always thought that’s what made us good for each other. The yin to each other’s yang. I thought that’s what would always keep us together, what made us an impenetrable fortress, a force to be reckoned with. When I was too far off the mark he pulled me back, and I thought I was his rock, someone who would always be there for him, no matter what he did. I would always give out but love him enough to want to see him through things.

You know I never saw it coming. I never saw his deep deep discontent. I was oblivious. Lost in my own world for the last three years. Fighting my own demons. Trying to work out who I was when I lost my job, trying to find some semblance of myself somewhere deep in my archives. The chronic pain took away my laughter. I stopped going out that much. I hated using the walking stick. I began to hate everything I once cared about in my own being. I don’t know if I became self-obsessed or if it was just that I lost myself in the abyss. It’s a question I have asked myself so often lately and yet I can find no answer.

The balance between loving one’s children and hating oneself is how I feel it must be like to walk a tightrope between two multi-storey buildings. If you look down you are lost forever, so you must keep your eyes on the things that are most precious in your life. I don’t want to look down but sometimes I feel my eyes being drawn to that place, a place where there is no return.  The guilt I then feel over whelms me and makes me feel worse. Now I am trying to fight, to find that spark that I know I once had. That spark that will make my children proud of me again. That spark that will make me shine just even a fraction of the sparkle I once had.

I am not writing this piece tonight for people’s pity or indeed to capture their feelings of love. I know I am loved, there are many who have shown unbelievable love to me over the last few years and especially the last few weeks. I will never repay that love, I can only hope that in the past I displayed some elements of that kindness and that on some level I payed it forward.  I post this as I have posted other pieces as I hope in some small way to say thanks or to be of comfort to someone who while not in the same place gets some relief from knowing they are not alone. No one is ever alone when it comes to mental health. There is always someone who just needs to know they are not the only one. We brush it under the carpet so much in this country and we offer so little real help. It’s time to talk about it more and to ensure that more is done to help us all. 

Always happy for people to leave comments, good, bad or indifferent, helps me to become a better writer.

As long as there are stars above you…

Grief is a painful thing. I thought I knew what it was like to be sad, to hurt so much that you thought your heart would just shatter. I was wrong. There is a pain to grief that repeatedly brings your heart to the point of bursting and just when you think it’s going to stop it gives you a reprieve or that’s what you think it is. In truth, it’s just a chance to take a bare breath before it comes again, just like the beating of your heart but in the most sickening way I can think of. I find myself emotionless, laughing, thinking, and then from absolutely nowhere it comes and grips me with what I feel are painfully hot claws digging into the soft flesh of my heart, its only on its release that I find the tears running down my face in an uncontrollable river. Never have I wanted or needed someone to hold me so tightly that I think my bones are going to be crushed, it’s the only time that I think I will feel able to just take that real deep breath; the one that if I keep getting them over time, I will eventually get over all this savagery. Just to add value to the pain, the guilt of being the one feeling sorry for myself comes and the realisation that whatever I feel there are several who are so very close to my heart in even more pain than I can express or have a right to feel. I have tried to turn my grief into busy work, it helps to some degree but I know I have lost to some degree that zest that so often helped me get over the hump, the look of distain for me in another’s look, the closed door in my face, or the lack of thought. And yet, there is a glimmer, for in those who care about me, there is light, there is love. So many people, those who I know and see and those who I may never meet but know in other ways have kept me going, they have kept this faded light from being extinguished and I would be lost without them.

Our views on life can be changed in an instant

– in the briefest of seconds what we think we want can change, what we think is the best course of action- can change.  In that instant, time seems to stand still, then very slowly things start to move again, you hear the noise in your ears, you see the sights in your mind’s eye, you feel the whole of your stomach collapse, and then slowly you feel the build, what starts as a light aching feeling slowly gains momentum in the very pit of your stomach and you feel it build until the crescendo of your heartbreak seeps out of you like a sound from the grave, the sadness, the lost hope, the pain of loss  coming out in muffled sobs while tears stream down your face. The dam breaks and the tears flow. You gain your composure and you know you know have a task in hand. A job to do. Things to finish.

As a next of kin you have to keep it together, you have to give what you have to your loved one with all your heart for what little time they have left. This was me last month, but it has or will be every one of us in this room at some stage of our lives. Last month I went to the hospital to see how my aunt was doing. When I arrived she was ill, very ill. She had gone from being unwell to ill in the space of a few short days. In the space of a few hours the full picture began to emerge and I realised that things were not good at all. It’s hard to take in the information but I have realised a few aspects can make this difficult task easier for family to hear and for clinicians to say.

My first encounter was with the nursing staff when I arrived on the ward. I asked for a staff member to check my aunt’s oxygen when I arrived and two members of staff came to talk to me and assist. The nurse in charge was calm, and in control, factual and things in the ward were calm and organised. The doctor arrived I assume he was the SHO and explained that there were some concerns, he did an examination and following that explained what his concerns were and the proposed course of action. He was pleasant, calm, reassuring, spoke clearly, emphasised his concerns and proceeded with the required action. He was kind.  I started to realise the situation was one of concern. I left to return home knowing that I should expect a phone call from the staff later that day.

Aisling rang me that evening; again she was calm, knowledgeable, reassuring, spoke clearly and with purpose. I knew this was one of those phone calls you hope you won’t receive, it’s the starting point. Aisling said she would get the doctor to ring me when the results of the tests being done were back. She was kind, empathised with me and heard my sadness. When Patrick rang I knew things were progressively getting worse. He took his time, was calm, clearly explained everything, never rushed, time was given for me to take it all in. I felt his empathy, I sensed his kindness. I asked him a simple question, if it was your family would you come in to say goodbye. He said yes, if it was mine I would. It was that simple. It was that hard.

It’s all over now; she has moved on. I don’t even know how I feel. Guilty I didn’t do more, upset that I never told her how much I loved her when she was alive, broken that I can’t bring her back, that she is lost to me forever. She never really came back from Saturday, I don’t know what happened to her, and I don’t understand why she died, not really. I know the clinical reasons in the last week but not the why so fast, the how she went from talking last Sunday to gone in a week. Did I neglect her, not spend enough time with her in the last few years.  I will never know, all I can do now is try to do my best by her and remember her with fondness.

No act of kindness, no matter how small, is ever wasted

From Aesop’s Tales - The Lion and the Mouse (one of my absolute favourite books as a child)

What does it cost to be kind? It’s something as parents we probably says to our children when they are fighting with their siblings or in our mind when we see people do something we see as mean and hurtful. Today as I watched a short clip about compassion I asked myself was I kind, was I a kind person, did I do kind things, did I ever put myself out to do a random act of kindness, not something simple but something that took some of my time, or thought or action. Something that I could look back on and say to myself - well that made a difference. For years I have done things of a voluntary nature. I have organised lots of clothes for charities, I have fund-raised in some small way for charities and maybe I have done a few things that could be counted as kind. But while searching inside myself I thought about all the things that I have done that are really unkind, things like giving out about people behind their back, idle gossip that seemed funny at the time, being rude, saying things to my children and husband that really are unforgivable. It’s funny when you look back over your life and you start to think about the things you did and somethings just stay in your memory, for me it was an instance on a plane, and even now 16 years later I think how unkind I was.

While heavily pregnant and on a medium length flight, my seat was at the back of the plane. A woman sat in the seat in front of me and the seat moved into the lowered position. Now I could have leaned forward and said “would you mind putting your seat forward, but no, I was in a bad mood and I didn’t want to be on the flight and so I pushed the seat forward. The seat slipped back again, at this stage I was getting annoyed, even more so when the lady didn’t push her seat up despite being asked by the air hostess. Again I pushed the seat forward feeling even more annoyed. Eventually, as though she felt my annoyance this little face peered around the seat at me. It was a little old woman, a nun no less and she very gently said “Could you please tell me how to fix the seat; I can seem to get it to stay forward". I told her what to do but my God if a hole could have developed and swallowed me, it would only have eased my shame a tiny bit. I felt so utterly unkind, not because she was a nun but because of her kindness to me in the manner she asked for help.

This might seem trivial in the great scheme of things but it really bothers me. It bothers me because I took the easy option, I didn’t try the kind option first and then if needed be more assertive, no I went straight to unkind all because I didn’t have the guts to say something, to put myself out there and see what happens, because in truth I was not brave, I was a coward and I hid the way cowards do behind anger, bad feeling and unkindness. Reading more in compassion has these days made me really think about things. It doesn’t always stop me from being unkind, that is something I need to work on a lot harder. I do know that over the course of our lives we will get the chance to be kind but we can make those opportunities more frequent by putting ourselves out there, taking a chance on someone or something and by doing random acts of kindness not to make ourselves feel good but for the good of others, with no hype or glory. I leave you with this thought not mine but that’s ok too.

“Kindness and compassion comes in many forms. It comes from different people in all walks of life. It knows no bounds. It has no limits. Because a good heart sees no barriers. “ ( I couldn’t see who wrote this) 

How do In know if I am a good parent?

The other day I read an article I think in the Irish Times about how we know if we are a good parent. It’s something I have asked myself nearly every day of my life as a parent. My own self-doubt about my parenting abilities comes most definitely from the fact that as a teenager I was prone to periods of depression. It was something I couldn’t even put a name to as a teenager and even into my young adulthood. There were numerous periods of time where I was lost in my own world of a deep seated sadness; which I couldn’t escape. When I first gave birth I had so many expectations of motherhood, being a good mother, being perfect.  The expectations of perfection I had set for myself were rudely awakened when despite my best efforts I failed to be able to breast feed my child. There was no way I was going to give in this this imperfection, I kept at it attempt after attempt. A member of the healthcare team came to the room on about the third day and said that my son was not getting enough food from me and they were going to have to give me a bottle. I couldn’t let them do this as this was me accepting that I was imperfect, that in truth I had somehow failed as a mother. It took for Shay to come in and make me hand over our son before I would let them feed him. Even after this I kept going with the feeding myself, driving myself into further and deeper depression. Eventually, while at home the district nurse called and realised that there was something wrong. Again, I resisted, I couldn’t accept that I was a failure. What ensued were years of feeling depressed, years of self-doubt and years of believing I just wasn’t good enough. There was a real need in me to prove I could keep a good job going while being a good mother.  I have genuinely struggled with the doubt of whether I am a good parent or not so this article really hit a cord for me. For the past 15 years I have sought to be a good parent as I have long accepted that I cannot be the perfect parent. I have tried to have open conversations about my depression and depression in general with my children. I have sought to ensure that they were confident, articulate, honest and value themselves; values that I believe are important in this day and age. Every day I look at my children and delight in their abilities, their confidence, their seeming ability to try new things and conquer their fears. Sometimes when I see this I think that I am doing a decent job parenting, but the reality is that you really don’t know if you are a good parent or not. Children have a way of making you feel special but they also have a way of making you feel bad. Tonight as I write this I have a child who is struggling, a child that despite my best efforts I can’t seem to help, a child who I know will grow despite this struggle. I just wish I could be a better parent and help them, guide them and let them know that no matter what happens your parents are the ones who will always love you the most and while we might not always agree, it is the parents that love you that are prepared to take the risk that you might think less of them so that in the end you can have a better life. 

The dreaded "H" word and I am not talking about Hilary!

For the last few weeks I have simply been unable to write, even as I sit here and type I am wondering what in God’s name is going on that I can’t think long enough about any subject so that I can manage even the slightest of views. Has my life become so mundane, grey and boring that there is nothing to write about? But that couldn’t be further from the truth so much is happening I can barely keep on top of things, there simply isn’t enough of me to go around all the things I have to do, and that’s saying something. I have however, come to the conclusion that I need to prioritise what I do with my time. All too often I am easily led off on a path that really has no benefit in the long run, now don’t get me wrong many of these paths are with friends and I couldn’t live without them but sometimes I find myself doing “nothings”. Sitting endlessly watching the latest posts on Facebook; mindless, mumbling's about nothing, well nothing of any real interest to all the things I have yet to do. So it seems I must try to establish some priority areas, the problem is these “priority” areas aren’t really that much fun, in fact several of them are mind numbing and several are well to put it mildly “just too boring for words” like housework!

Housework is my arch nemesis; I can’t stand it, I despise cleaning the house, it very rarely if ever fills me with a sense of delight, a sense of achievement or even a modicum of anything other than boredom and dread. On reflection over the years with my mother on the topic of housework her advice is a very sensible start with just one room, pick a room, any room and give it a good clean from corner to corner. I listen to her advice and have on occasion really taken it to heart and tried to give one room a very comprehensive “going over” well in my mind. In reality the truth is a little bit more well let’s just say grey.  I start with a flourish and I pick a room, I walk in, I challenge myself to get to it, I spend about 15 minutes thinking about where to start and what makes sense. I pick as many of the big things I can to start and then I just get bored, so bored I can’t stick the room. So bored I convince myself I need coffee and maybe a biscuit to keep my energy levels, so I take a break. Now this is where it all starts to go pear shaped, because as I am on a break and feeling tired, I decide to text or tweet or go on Facebook or look up something of extreme importance on the net. When I eventually convince myself to go back to the room, motivation is at an all-time low, I peer into the room and see the utter chaos, everything that needs to be sorted is all over the place, there are no homes for this stuff, it’s a mess of clutter, its calling me, it suffocating me, I can’t breathe, I have to escape… and so I return to the bliss of something else that is important for me to look up on the computer, another text to send or a tweet to compose. I convince myself that these are all highly worthy causes and the “room” needs to wait. I will never have a tidy house, I’m not sure I even know what that truly looks like, but I am going to blame the man or should I say priest whose name I was given. He really put a hex on me where housework is concerned, he told Mammy that our house was not untidy just lived in, and that people weren’t coming to see the house they were coming to see us. Our house just like my parents’ house is  one built on friendship and an open door, so if you call here you will always get tea but I may have to move a couple of boxes of this and that to find you space at the table. 

When the essence of you goes...

Its official, I have lost my va va voom, my chutzpah or that which made me quirky, confident and funny. Love me or hate me at least I evoked a reaction. I sat down this evening having declined the offer to go out with friends and realised that it’s gone. It upped and vanished and I never really saw it go. Yeah, I knew that something wasn’t really the same, that there was something slightly amiss, but I didn’t pay enough attention and now I realise it could be too late to get it back.

Before I got my hip replaced I went through a relatively bad phase. Extreme chronic pain wore me down, I stopped going out as much for a number of reasons and I started to let things slip. I had myself convinced that after the surgery things would be better. I would have less pain, be less cranky, more patient, an all-round better person. What happened or should I say what I let happen was nothing short of a disaster. I couldn’t get over the feelings of dependency that I experienced after the surgery. I allowed myself to be a patient, but as usual I wasn’t going for any short term approach I was in this for the long haul and now well after a year I am still dependent on my family to get me through the day.

I am still in chronic pain and looking at getting my other hip replaced but its only now that I realise how much I allowed my negative thoughts about needing help to affect me. Instead of seeing it as a temporary situation I let it take control of me, to dominate my thoughts to take over my life. Every day I look around my house which is really in a state and I think where will I start, then I think hmm well that could be too much of a task to do so I won’t even start it. This self-talk continues in my head until I convince myself to do the bare minimum and have myself convinced that I will be in dire pain by the end of it. This is a situation that only I can stop and one that I feel I need to change today, tomorrow and for many days from now.

Now at this point you might be thinking that I have forgotten the whole point of this post but fear not I’m getting to it. You see by being so completely dependent I stopped looking after myself, I let myself gain even worse eating habits, I am sitting more, doing less and generally putting on weight – lots of it and yes I know it, I feel it, I seriously don’t like it. I have more excuses now real ones as to why I can’t do anything about it but who am I kidding? Well I am not kidding the people in this house that’s for sure. By putting on weight I stopped wearing my clothes, I stopped with my make up something I adore; I stopped even caring about my hair. I let my va va voom walk right out the door bring all my designer bags, the best of my make-up and the essence of me with it. Now maybe I can’t get the chutzpah back (I hear some of you saying “Thank God”) but I can certainly claim back some of what made me me. So tomorrow, no seriously tomorrow I am slowly possibly very slowly claw back my essence, my laughter, my dreams and all the things I like small or big, the things as I say that make a difference. So if you see me with an emotionless face, tell me to cop on. I would rather be laughing or crying but the one thing I can’t stand is nothing, empty vessels, droning conversation, or not caring. I don’t mind quietness if fact I welcome periods of contemplation but just don’t let me get boring. 

For my friend

I want to wrap my arms around you

To hold you and ease your pain

I see the sadness in your eyes

The love you wanted to let grow

The plans and dreams for a different life

All crashed to the ground

In your voice I hear the crackle

I know your thoughts have been invaded

It’s hard to focus, to let it go

Just when you think you’re moving past

It covers you with it's ghostly veil

And brings you back to the past again

It’s ok to feel this sadness

To feel the anger and the pain

Time is the only healer,

Dip in and out and take control

Know that I am with you, I feel your pain

And while I can’t make it better

I will always listen, I will always care

So while I am not with you now

Feel the warmth of my arms

I hope they provide you with a haven

To know that you are loved

What doesn't kill us makes us stronger...

This has been a really hard week for me. I made a decision that I wouldn’t let my chronic pain take over my life about three weeks ago and that at 46 I was too young to just give up on having a career. So with that in mind I applied for a few jobs and I considered a few others and put feelers out. What I learned is that people can make snap decisions about you and there is nothing you can do about it. People hurt people. Their words hurt. Their actions hurt. This week I was told I wasn’t good enough for three positions, and you know what, it hurt. I have always valued honesty and tried to be honest while being considerate and sympathetic. I know I have made mistakes but who hasn’t. But for me knowing that someone would take their personal perceptions of you and try to hurt you in a professional way is a new low. I always knew taking the moral and ethical route would be difficult but that’s the way I was brought up and I am too old to change now but it still hurts to the bone when you realise that others don’t play by those rules. So I ask those people because I know that some of them are reading this…

Who are to judge me? What have you done that makes you so spectacular, so superior to me, what makes what you have to say so much more important than what I have to say. Who are you to talk over me, to fail to listen to me, to disregard me?  I don’t do these things to you, in fact I actually listen attentively, I want to hear what you have to say, I think it’s important that I hear your views that we can discuss and converse about things that matter.

It angers me that people are like this and it angers me more that some of these people are women beating down on women.  It makes me so mad. I often wonder what it is about a person that makes them not care. That makes them believe that they have the right to influence other people’s life negatively even if they don’t really know the person. What makes them think that their opinion is the only opinion that matters?

So if you are reading this and you don’t give a shit about me, just stop, run along, there’s nothing to see here. If on the other hand you care about me, then know I am a survivor. Know that when I am told NO it makes me more resilient, it makes me stronger and I always come back fighting. There is nothing surer in my life than when I feel my back is against the wall, I don’t cringe, I don’t fall down, I grow and I make sure that the next hurdle is on the horizon.

Women like me… well we like a challenge!

Dear Politician

I am one of the many people who elected you. I have been voting for 28 years, my vote has given many politicians over these years the opportunity to represent the views of those that elected them. We place our trust in you, our beliefs and our dreams. Not because you are better than us or more educated than us but because in a lot of cases you have the ability to do what some prefer not to do or are uncomfortable doing. You have the ability to talk in public. In my own case, I could challenge many of those that I voted for to have a better formal and academic education than mine, I could also say that in many instances I am more articulate, better able to converse and more driven, I only lack the desire to be centre stage, the willingness to put myself into the full public view. I don’t do it not because I am unable but because I have thought too much about how I wouldn’t be able to tow the part line, how I might need to vote with my conscience, how I am not sure that I could argue the case about something that I don’t believe in.

Today I spoke to a politician who firstly couldn’t even remember meeting me despite conversing with me for well over 30 minutes less than 6 months previously. But it wasn’t the lack of recognition that bothered me but the fact that despite me offering my assistance in an area that I have worked in since well before this politician was elected, it was his look of arrogance and disdain. I am not part of the clique or the specially selected groups, I am however, someone who has a real interest in a particular area, someone who has spent over a decade highlighting the need for real engagement, someone who has ruffled a few feathers; in fact I am someone who has been tarred as others have with untruths. Instead of accepting my assistance given without any expectation, I was given a fail save statement, met with a perception that I somehow might not be at the same level as the great heights that this politician portrays they are at. I had great hopes for this politician, I thought they might actually make a difference, little did I realise that they too would succumb to the curse of listening too much to one group of individuals. When you fail to ensure true engagement you fail to safeguard those who elected you. It doesn’t matter if you were not in that position when something goes wrong as by your inaction you have perpetuated the wrong doing, you have facilitated the inaction. You are the keeper of the gate and whether it happened on your watch or not you will face the consequences.

The right to vote is a privilege, one that I since I was 18 years of age considered a responsibility. I take my vote seriously. On occasion I discuss my voting preferences, my political thoughts within my social networks. 

When the next election comes around, many hopeful candidates will call to my door, the doors of my friends in Blanchardstown, Glasnevin, Skerries and counties around Ireland.

 I will be asking all my friends, family and colleagues to consider the following piece that I will be saying to the politicians in my area, and ask these politicians a simple question and its goes like this.

“You don’t know me but I am well aware of you. Over this election period many of you will call to my door asking for my support. You will tell me how you plan to change things, to make things better for the likes of me. But when I close the door I will think about the fact that you don’t know me or my family or my circumstances. When I look for your support you won’t remember the person in 83 with the three children, a strong academic background and chronic illnesses that lost her job at an awkward age. You won’t remember that I made a contribution to society; that I sought to improve it. You won’t see the tears run down my face or the low self-esteem because I can no longer support my family the way I want to. You will see me as a statistic, a person on social welfare bleeding the state. So when you come to my door in the coming months I only have one question for you. If I support you will you remember to support me? I will ask this even though I know in my heart you will answer yes but in your heart you will say no.”

The Darkness

So I am moving all the pieces I have written over the years to this blog. I will post stuff, highs and lows and its all a bit random at the moment. I just wanted to have it all in one place.

The darkness seeped inside my soul

Pushing out my mind

It sent me to a place that no one else considered

I felt no pain, no real delight in anything I saw

It left me there lingering until it took its share

And when its time was over

And I was left bereft; it decided it had done enough

And then it sharply left

My life was never quite the same,

The darkness took its coin

It took its toll on my heart, but left me with its pain

Every day I see the darkness, I know it’s always there

I fight it daily in my mind, I try not to care

But when I feel it lurking I try to spit it out

And while I know it will never go,

It might just loose its grip.

Inside, Out

So I said that I would post something a bit more upbeat and seeing as my lovely daughter has gone off to the Gaelteacht and I am missing her already I thought I would post this poem I wrote when asked by a good friend (Denis) for his book of poems - imagine that I have two published poems!! Anyway here it is, please feel free to comment on this or any of my blogs - remember feedback good or bad is always positive.

One day I wished up a star
To find a love so rare
That only few could understand
And less could really share
To my delight life for once was kind
And all my wishes were answered
True love I finally found

I feel his kindness in every act
his sensitivity is rare
His cheeky grin fills every room
And laughter fills the air
His character is strong
His wisdom slowly growing
And when he shows me compassion
I feel my heart flowing

I hear her thoughts so well
Through her eyes I see her mind
I know when she is happy
But my love for her is blind
I feel her pounding heart
And know that she's amazing
And when she presses her cheek against mine
I feel my heart glowing

I see it in his eyes
His face so full of bliss
The way he rubs his lips
To wipe away my kiss
But when he holds my hand
And when my neck he's squeezing
Even with his grumpy stand
I feel my heart growing

What makes my heart so giddy
What makes me feel alive
Who makes me want to live forever
Who is behind my smile
Three wishes that came true
Three angels kind and sweet
To love these three forever
Makes my heart beat.

Stand up and be counted

I have had this overarching desire to please, to do things for others, to always be the one to keep the peace, to be the bridge between others, to keep things stable. As a child I hid my views, always afraid to speak up in class in case I was wrong, always afraid to take a chance on things, always looking for the stable environment. Growing up I was ashamed of myself, ashamed that I was overweight, few people truly know the reason behind my weight gain and it’s a tale for another time when I can’t hurt people who don’t deserve to be hurt. Yet again, the child in me seeks to maintain stability. All my life I have been afraid, afraid of being stupid, afraid of being branded a fool, afraid to say how I feel in case people think less of me. I didn’t stand up for myself until I was in my twenties and working. An incident in work forced me to take action. I was working in a position where I supervised students and one of the managers made a sexist comment about my weight and a male student I was supervising. Another manager who thought this was hilarious decided to tell me. I don’t want to go into the details but suffice to say I had to deal with it. It was one of those loose-loose situations. If I didn’t do something then everyone thought I was just another fat person to make fun of and if I did do something well then the male dominated environment I worked in would dislike me immensely. My gut instinct or reaction took over pardon the pun. I tackled both managers for different reasons and eventually the situation was sorted out, payback well that came in the form of not being given a position I had worked hard on and eventually being let go. No good action goes unpunished. This situation did however, teach me a valuable lesson; standing up for what you believe in is not easy, it does not come with an easy journey or a set of applauds to boost your confidence. Standing up has many merits but mostly they are the kind of thing that tells you, your inner self that you have a set of principles, morals and ethics that are important and worth taking a risk for. Since that event I have fought a bit harder for myself, for the person I know I can be, the person that when I die, I will have no regrets. Well maybe I will have some but right now the only regret is that I allowed my sadness to take a hold of me and that consequently I allowed myself to gain weight. The flip side of that is that I love the good times, the camaraderie and the friendships that are nurtured and flourish over a good meal, nice wine and decent music. Tonight as I write this I am sad. For ten years or more I have been happily working away trying to highlight that engaging with patients is a viable option for healthcare. Tonight I realised that despite my best efforts it will take a miracle of sorts to ensure that I can keep doing this type of work. For the first time in my life I am truly afraid of what my financial situation will be. Tonight I wonder if I could have been better, if I could have achieved more, if I could have stood up and spoken out more eloquently. Tonight I ask myself did I make a difference, can I now, will I in the future. Tonight I don’t have the answers. Tonight, an end or yet another new beginning; 

A Spiritual Approach to Compassion in Healthcare

This is a presentation I gave last year on compassion in healthcare in Waterford Institute of Technology. I have amended it slightly to fit into this blog post, so here goes.

I was asked by my friend Mary to make a presentation for the compassion workshop. While I immediately agreed I failed to suggest a title fast enough, so like all good friends Mary picked one for me. Mary sent me the above title much to the amusement of my family, friends and particularly my father, who laughed so hard he nearly cried. You see my father and I are very alike, we like facts, we are not very tactile and have a real desire to question all things before we make up our mind. My mother is the complete opposite so it is therefore no surprise to me that I was born on the feast day of saint Francis of Assisi who owns my second name and named after a family friend a priest by the name of Father Hilary. Now for me religion was just about births deaths and marriages. I revolted again the notion of going to mass and choose instead to say my prayers to myself, my way. It wasn’t until I got depression and some other chronic conditions that I really started to think and see things differently, to explore aspects of life and illness. Lately, I have started to think about life and death, about the components that affect us in life when you are ill and about what can be done by both patients and caregivers who engage in a rewarding relationship.

So as you read this you may feel it’s all very disconnected, it probably is, but I offer these thoughts not as someone who has any answers but someone with lots of questions. I offer only my thoughts on what it’s like to have a chronic illness and what I think about compassion in healthcare.

I would like to start with the word pity. Atul Gawande in his book “Being Mortal” quotes from a part of Tolstoy’s “The Death of Ivan IIyich” , he says of Ivan IIycih when he was dying.

"No one pitied him as he wished to be pitied," writes Tolstoy. "At certain moments after prolonged suffering he wished most of all (though he would have been ashamed to confess it) for someone to pity him as a sick child is pitied. He longed to be petted and comforted. He knew he was an important functionary, that he had a beard turning grey, and that therefore what he longed for was impossible, but he still longed for it."

As someone with a chronic illness, I never thought about the word Pity, it wasn’t a word that meant anything to me, but when I read this I understood it so well, all because of an off the cuff remark made by someone while I was having a chronic bout of arthritis.  I was in constant pain and feeling severely the weight of depression on my shoulders and they said to me “stop trying to make us feel sorry for you”. Their words stunned me.

So as you can imagine this comment shook me to my core and I started to analyse the situation. Was I moaning, whingeing, complaining too much, but then I realised I was just looking for some kindness, some compassion, during what was a difficult time. I realised then that I was not looking for pity but compassion and I started to think about when and why we can show compassion in some situations and not in others. You see if there is a cure it gives a level of hope and you can be compassionate because there is an end point in sight. With a chronic illness it becomes more difficult because this is something that is going to be on-going and to be compassionate in this situation would require commitment. It is this requirement for commitment that many find difficult in long term situations.

Now if you take that as the premise you can apply it to a myriad of situations. In GP care, it’s interesting to note that some illness instil a greater level of compassion. In a lot of cases these are acute or sudden terminal illness but again you may well find a pattern of lack of compassion in chronic, mental health or elderly care.

The phrase “the worried well” springs to mind. I never heard this until a couple of years ago when I presented to a group of GP’s and it shocked me that they referred to patients as “the worried well”, that group who are continuously in their surgery with health issues that may not be perceived by the GP as being important. I started to watch out for this lack of compassion and kindness or indifference while engaging in my own healthcare and that of my family and friends.

I started to think and consider how it was demonstrated or not during healthcare episodes. Now it would appear that traditionally, “the ideal of combining clinical competence with compassion has been a central feature of the practice of medicine throughout history” (Anandarajah & Roseman 2014) and yet there are so many instances where compassion is not evident.

I came across a blog by a medical student that really captures some of the key points that clinicians encounter.

“Dear Ms B,

We didn’t know each other well. You might recognise my face from rounds; I was the girl in the corner holding your numbers, looking at the ground or out the window. I occasionally asked you how you were, and you always told me the same thing – pain, so much pain. And I didn’t know what to do. I wanted to hold your hand, but my head always made excuses. I had to continue on the round, I had to be professional; I had to maintain my distance. But I always thought about you through the day. I thought about how I wanted to sit by your bed and hear your stories, capture your last days on earth, capture the rich life I’m sure you lived.

And you may never know this, but you made a difference to me. When I see another patient approaching their final moments, I will stop and talk. I’ll ask them how they are, if there’s anything they need, about their life, their children, their loved ones. I promise that I won’t just be a doctor; I’ll be someone who makes them feel valued. I’ll make them feel that their last moments are being remembered.

I’m sorry I didn’t do that for you…”

For me this piece demonstrates that we all make mistakes, that like us all, clinicians are not always right, that there is learning required and that improvements can happen and changes can make a difference.

This letter made me think of another encounter that happened to my family. My father has Crohn’s disease and COPD and he was in the ED of a hospital and he was sick, his breathing was difficult and he was very dehydrated. We were waiting for the doctor and I was looking through his chart, I noticed DNR on the front of his chart, and I immediately felt a sense of panic. As his main support in hospital I could not believe he had agreed not to be resuscitated, and I questioned him on it. He looked at me with an amazed face as if I had gone mad.  He told me that under all circumstances he wanted to be resuscitated, he has an amazing ability to fight back to beat his illness. When we asked about it later we were told that it was common, the norm, no one knew who had written it, no signatures, no agreement, just a decision made in isolation by some unknown person.  The reason I tell you this story is that decisions made like this show a real lack of compassion to me.  The failure to discuss this decision with the patient and the family is a failure to recognise the individual; it ignores the right of the patient to have their needs and wishes taken into account.

This is in stark contrast to the story in the UK recently where Sheila Marsh was granted her dying wish when the hospital she was in assisted her daughter in bringing her mother’s horse into see her so that she could say goodbye. The 77-year-old died hours after the emotional reunion.

“She took comfort out of it and it was a beautiful moment.”

(The Guardian,7 Nov 2014)

The main point for me about this is that we need to have conversations, even about the difficult things we would rather not talk.

This leads me to my next point about our purpose as clinicians and patients.

As patients we expect a lot from our clinicians, but I confess I have thought lately about the nightmare patient and I have come to the conclusion that I am one. I want my doctors at their best when I am at my worst; I demand their knowledge, their compassion, their empathy, their understanding. I want this equally balanced discursive relationship but what do I give them in return.

I pay my money for my visit and I expect them to be right after all they are the clinician and are earning a decent salary and I expect them to know, to fix, to mend but what do I give you I return for their advice and kindness.

I’ve thought about this a lot lately. I couldn’t help wondering why people decide to become clinicians, is it for the money? For the prestige? Because it is the family business? Or because they feel they could make a difference, because they have a purpose.

I thought about all the clinicians I’ve met over the years from all walks of life, rich-poor, family business-first time, egotistical-honest, change makers – followers, it’s funny as a researcher by trade I started to look at the various people I know, and I analysed the. However, during this process I had a look at the type of patient that I, my family and friends made.

At the end of the day I truly believe in the equal partnership between patients and clinicians but I questioned what I as a patient brought to the table. This is the a question I have struggled with for so long – I was there reluctantly after all, I didn’t ask to be sick did I? Or did I? This question kept troubling me because maybe I did, maybe I didn’t do the right things when I should have, maybe I wasn’t kind enough to myself when I should have been, maybe I didn’t take action soon enough, maybe I failed to take care of myself.

 So I guess the conclusion I came to is that as patients we need to try to help ourselves to be an equal in the partnership we need to take some of the responsibility. But equally clinicians need to see that they are only part of the relationship and they need to think about their purpose as a clinician, what they will bring to the table.

Now this leads me to another point that is often not discussed – guilt

I know I feel “guilty”, guilty that I am not feeling well, guilty that I am allowing it to take over my life, guilty I am not a good mother, guilty that I have failed as a wife, guilty that I don’t do more for my parents and aunt, guilty for not being better, a better me, a kinder more tolerant more understanding me.

I feel this every day, I constantly contemplate that I let this illness take over, that I didn’t fight it enough, that it won, and I lost. Everyday a part of me thinks about this, on the bad days this quote sums it up for me

“There is no difference to what I do every day, to those who commit suicide; I just chose the slower road” 

A year to save my life

In contrast on the good days I try to convince myself that a house is a home that I didn’t lose but choose to accept; to do the best within the resources I have.

Guilt is a theme that is discussed by patients within their closed groups. It’s not often a topic that is discussed by clinicians with their patients. The result can often be a patient in conflict with themselves, and this conflict can spill over and make them a difficult patient. Difficult patients offer clinicians an opportunity to increase the compassion they show. This will prevent clinicians feeling guilt in the way the previous blog outlined – after all who wants a life filled with regret?

My final point is about kindness, now I have spoken about guilt but recently I went to see a consultant and during the course of the consultation he asked about my depression. He wanted to know why I was refusing to take medication for my depression and to be honest I expected him to disagree with my logic but I was really surprised by his response. I explained to him that as a mother of three children living in constant pain meant that I often had to ask my children not to sit on me, not to hug me tightly, and to give me space. I also explained to him that I wanted to be able to feel life’s highs and low’s and that when I was on the medication it was just a plain boring monotonous level with no real tangible emotions. I told him I felt guilty about my lack of touch and that if I had a lack of feeling as well how could I be a real mother. He waited till I had finished and he said to me –are you kind to yourself? Just be kind to yourself. For me this was one of the most compassionate encounters I have ever had, this clinician listened to me, heard me, understood me, treated me – he was aware of his purpose and through this his compassion shone through.

I would like to reiterate what I said at the beginning that I have no solutions about spirituality or compassion in healthcare; these are just some of the questions that fill my mind, so in conclusion I suppose I just have a few points.

As a person and that’s all of us

1.      Be kind to yourself

2.      Stay true to who you are - Love yourself so that you can love others

3.      Live your life the best you can, given the resources the have - have no regrets

As a patient

1.      Help yourself so that others can help you

2.       Understand the humanity of doctors - Value their knowledge, their learning, their experience but know that they can make mistakes

3.      Show compassion but stay strong - garner your inner strength

As a caregiver

1.      Understand - Listen, hear, discuss, know, empathise

2.      Know and understand your purpose

3.      Care - Just care, give a damn, see the person not the illness. Know it may be you one day

I finish with a link to one of my favourite clips from the golden girls which I hope will act as a summary to my thoughts. Enjoy

https://www.youtube.com/watch?v=Zovd9eKvy8s

Red is the colour

In the deepest of the night

When no one stirs and there’s no sight

I’ll fill the air with all my might

And they will all feel my plight

The ground will turn and colour stain

And I’ll be sure to call its name

As colours change from white to red

On the floor, around the bed

And then when last I fall asleep

None will stir and none will weep.

H.F. Dunne

Love is where the heart is

Love is where the heart is

Where it comes from I don’t know,

I hear the sounds and painful blows

I can’t stop the tirade no matter what

I don’t understand why it can’t stop

I want to sleep and wake up high

Where I can look down and see the sky

The love I feel is not enough

To stem the pain and form a trust

To leave this place I know is fine

To start anew it can be mine

The love I feel can’t be replaced

But I have no value to the human race

Let me go to sleep and save my face

Let me go to sleep and find my place

I need the sweetness of loves embrace

Where I can’t hurt anyone with my disgrace

Please let me go to save their grace

And know that I am in a happy place

I love thee dearly, I leave my embrace

Just let me go to a humane place

Goodbye my angels and loving soul

You know that I can’t stay on hold

You are my life and love you most

But life will be better without this host

As time and years pass by so sweet

Remember that I was an occasional treat

Love me just once in a while

As you are always and forever mine

HF Dunne

Why do we doubt ourselves?

What is it about certain people and I include myself in this observation that makes us second guess ourselves all the time. For a long time I thought it was a lack of confidence, but I don’t believe that to be true now, so what is it? Could it be that self believe is the problem. For years I have written reports, research papers, and other formal pieces of work. I have definite views on things and have never shied away from discussing them in informal settings but yet when it comes to a formal setting where I feel I may be judged for my views on a professional level, I refrain. It’s not that I worry what people will think about me, it has more to do with the fact that I was always representing an organisation and I did not want to do it harm by voicing an uncomfortable thought or viewpoint. I now realise that this has extended to all I do and now I seem to be living my life second guessing myself and my views, especially if I meet others who are very strong minded or blinded to other possibilities. Now after what I feel are years of conforming,  I want to break free but find I now can’t seem to find the words or the eloquence I once has – so what is one to do? For a while I have been writing this blog and yet would not advertise it to anyone for fear they might read my rambling thoughts. I now feel I need to take control over my life and thoughts and views and stop doubting myself. So instead of reading and re-reading and then getting at least two others to read (seems crazy when I write this) to check my work I am now simply going to post. So if you are like me and prone to personal self-doubt I challenge you to do the same, pick one thing in your life that you like to do and stop second guessing the consequences and just enjoy it. Let me know how you get on. 

Joe Duffy

Poetic licence evoked!

So on Monday - Anne Marie Hourhane wrote an article in the Irish Times "A medical conspiracy against patients", she went on Joe Duffy. I wrote a letter to the IT editor in support of the article. I then rang Liveline and was waiting to go on air. Deflated by three I cursed Joe!

On Tuesday, Joe takes up the mantle once more, I ring in again, Yes your definitely going on, 3 came and went- I was even more deflated. I should have lost some weight at this stage.

On Weds, my chairman rings and says you are definitely going on today they just rang me, now on Weds Thurs and Friday I am working in my other job, so I start to feel itchy and scratchy, red blotches appear on my face and neck, I listen into Joe really quitely, wanting the phone to ring but praying it doesn't  By 3 I am exhausted, I curse Joe and Liveline and resolve to hunt him down in Clontarf - I know where he lives!

By Thursday, I decide I am not even listening to Joe, I will read the IT, I open up the letters page and there I am as bold as brass in black and white - I ring everyone I know proud as punch. So happy I have forgotten Joe, who needs him anyway!

I have just take a bite of my cardboard sandwich in a very late lunch when the mobile goes, I half recognise the number and decide to answer it, I choke on the cardboard as the voice at the other end says "Joe is ready for you now", I panic, where will I go, I can hear Joe in conversation with two women, I decide to leave the office and head in the direction of the bathroom, spying the stairwell I head there, my phone starts beeping, someone else is trying to call me, then it whistles as the message jumps in, at this stage I am red, flushed like a tomato hiding under the stairs. I see the girl who thinks she is my boss, she is on the look out for me, I stay hidden under the stairwell but then I hear whistling and the lights go out, the bloomin porter is doing a fire check, god almighty is nowhere safe to speak to Joe. The he calls me in on the show, I feel like a rabbit caught in the headlights, Yes Joe, No Joe, three bags full Joe, I can't hear myself think, I love Joe now, he is so nice to me, now I am happy to listen I forget I am supposed to talk,  then its all over. Breathe  big tomato or someone is going to be picking you up. I run back to the office where my self appointed supervisor jumps through the door, shouting you were on Joe Duffy, I look at her and say "was I really, God I didn't know", I laugh to break the awkwardness and ask is this a firing offence, she smiles and says not quite, God what do you have to do around here to get noticed I think.

Finding my inner voice

So here I am the morning of the compassion conference in Cashel and I hear my colleague say we need someone to step up, a small voice from somewhere within me speaks up and to my own astonishment I volunteer. The speaker was to talk about compassion from a personal perspective that left with little room to manoeuvre, again to my internal surprise I found myself saying I would talk about my depression and the impact it has had on my life. If I even tried to explain why I felt this was a good idea I could not, for years I have kept this part of my life confined to those I love and trust, it is only in the last few months that I have voiced it in small circles beyond this, and yet here I was going to stand in front of over 100 people and tell them my life history. I had very little time to think about it all so maybe that was why the spur of the moment decision was not making me ill, in fact in honesty I felt little prior to my name being called.

When I stood at the podium the fear gripped me. For a moment I felt like a rabbit caught in the headlights I could not see the people, the room seemed like a blur and I thought I was somewhere else. I tried to think fast I had nothing prepared, how do you begin your life story? Where do you start? What’s the first thing you say? All this flashed through my head and to be honest I don’t remember what I said to start, I remember flashes but not everything. My eyes scanned the audience to try to gauge if I was boring them, rambling or if they thought I was just plain mad. My eyes fell upon several of my friends who strengthened my resolve particularly when I could hear the cry in my own voice and I begged myself not to destroy me in front of all these people. The love and encouragement I received from the audience and my friends fuelled me to continue, I only dealt with the beginning of my depression diagnosis and the way that compassion was shown to me over the years. The kindness of a nurse in my local GP who recognised my pain and took me in. The cups of tea shared with my friends, breakfast at Dunnes, Sunday dinner provided courtesy of my friend every second Sunday who made sure my children were fed. I will never forget their kindness nor will its importance ever diminish in my eyes, they saved me from myself and they continue to do so as each day presents new struggles. The early years were hard and these years are just different and different people are caring for me and that’s for another day. 

It's a viral thing!

It’s a very Irish May day today, sitting here at the kitchen table I am looking out onto a lusciously green back garden, the apple trees are starting to bloom along the wall and for the first time I think we might get a decent amount of apples. The rain is so soft you can barely see it and every now and then it reminds me of a learner driver, stopping and starting. It’s Sunday morning and everyone else is asleep and this is my first day up since Wednesday when I collapsed through the hall door and went straight to bed. Yet again I had a viral infection, they seem to last longer and take their toll on me more each time, but what is really stressing me is the frequency of their untimely arrival. Viruses obviously have no appreciation of a mother’s life, and certainly not this mother’s life, it has truly left me in a bit of a pickle this time. Here I am trying to hold down my two jobs and still try to retain some semblance of a good mother and an inkling of a decent daughter, I can forget about the wife bit for now because that really has to stay paused, only allowing a slight trick forward every now and then when I have time to think. The last few weeks have been slightly manic but that seems to be every last few weeks, surely the end must be in sight. Anyway back to the virus, it came uninvited into our home, intruder alert should have sounded at the door, but no, it crept quietly hidden, first it said hello again to my daughter, who was already feeling a bit under the weather, then it crept to my youngest son, it hopped over to me while minding him while his fever broke, but I never saw it coming. I left for work on Tuesday feeling sore and tired, by Wednesday lunchtime I was shivering and needed to lie down in work. Now alarm bells should have started to ring out but no I only heard a brief chime and kept going. So what did my friend virus do, it took a sledge hammer to my mind, body and dare I say it soul and said “you’re not going anywhere”. By Thursday, in the very early hours I knew I mistaken the depths virus would go to, oh no, not for me the 24 hour or even 48 hour virus that the children had, no it had held firm for me and was going to make sure I lay down, and took appropriate notice. First it increased my temperature till my body could barely stick the heat, and then just as you think sure pretend you are in Spain on a very sunny day, it goes artic on you, two duvets later when you just fall asleep from shaking yourself blind to heat your body, it decides to give you a taste of the Caribbean Sun and you can’t seem to get those duvets off now. Eventually, it peters out and you think great we are moving forward, but no, then comes the throat, swallow what’s that, it must be the bird you are talking about because there is no way of swallowing here, but now I think I have you virus, no swallow = no food, no food = lose weight, hah, I found something I like about you now virus, but then you realise you are thirsty and virus wins the round. Now if all this is not enough, my sweet eldest decides to hurt his toe, he has a match and we try to bandage the toe and send him on his merry way. I really don’t feel well and can’t think straight, all I want is to go back to bed. Now I seek the advice of two lovely men and bought feel the toe is strained. The daddy says he can play but bandage the toe, so I try. Three socks and lots of screaming later I give up and decide both of us need to go to bed. I look at my son and get that cold feeling that virus is going to be making him a visit soon. By Saturday, I manage to get up a bit, after all I have three children to care for and they still need to be fed. To my lack of real surprise I find my eldest in pain, virus came froze him, scorched him and left him like a fossilised fish on a stony beach, his lips full of ugly crustations, flesh raw from the heat and body drained of all fluid. I ask him how his toe is and if he can walk, he has not the energy to get up. I drop the others off to the cinema and bring back a diet coke from McD’s, hoping he will be encouraged to drink it. He is tired, sick and sore. He eventually sleeps again. When I collect the others I pick up a milkshake, other than a bottle of water this is all he can cope with. Today is Sunday, he is starting to bounce back and yet here I am, I can still feel virus sliding up my back like the feeling you get when the hairs on the back of your neck stand to attention. My throat and head all still ache, I know by the time I finish this, virus my old friend will force me back into bed for a few hours, hopefully the children will stay asleep a bit longer. The fact that virus is coming to my door so often now is worrying me, I don’t do sick well, I know the key is rest and slowing down so that you can give the body enough time to recuperate but I hate that. The problem is that I think that the virus is going to win this round, I don’t have the energy to get dressed and do a full day’s work and then come home and be mam, and if I am honest I don’t have the energy to be mam let along work.  One day I am going to get the virus and before it ever gets a chance to even darken the door, it’s out, until then I think I will surrender the laptop and the view and head back to the sanctuary of the bed where virus and I can find a mutually agreeable location.