One devastating week

The last week has been hell. I don’t know what I did or why it happened, but there has been an incredible increase in pain (from a five out of ten to seven or eight out of ten) and I cannot cope. It’s as if the fusion has come loose or the graft has pulled away, except I’m sure it hasn’t. But something has happened that feels like a knife has been plunged into the base of my back and is shooting daggers down my legs. Strong medication doesn’t even temper it. 

I love life and I don’t want it to end, but the life I am living right now has no quality, no happiness or joy. There is only sadness and tears. I don’t want to live if this is what my life will be.

All I look forward to is being knocked out. My happiest moment of the day is when I take my sleeping pill. I know I will enjoy a few pain-free hours before the pain nags me awake again, and I have to endure another twenty four hours of misery. 

Though family, community and friends offer support and solidarity, I have nowhere to turn. The medics either don’t know what to do with me or probably consider me a crank. I feel lost and beaten. 

The last two years have seemed like twenty. In so many ways, my life ended two years ago, only I didn’t stop breathing and my heart kept beating. The only thing I am grateful for is that I was there for my dad at his end, and there for my mother in her grief.

I am tired of pain and constipation and doctors and pills and hospitals. I am tired of disappointment heaped on disappointment.

I am tired of moaning and whining and self-pity. 

I am tired.

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Upsetting my mother is what upsets me most

I have always been a hopeless actor and have never been able to disguise how I feel. One look at me and you know how I’m doing that day.

But you don’t have to see me to know how I am. My voice is a giveaway too, certainly to my mother. Every day I phone her at a prearranged time, and even when I try to sound chirpy and cheerful, as if the pain isn’t killing me that day, she knows straight away how I really am. She can tell immediately whether I’m having a good or bad day. 

I hate that, because I hate upsetting her. Many days I haven’t wanted to make that phone call because it ends up with the two of us in tears. My mother has enough on her plate without my pain adding to hers.  

It’s bad enough that chronic pain has consumed my life for the past two years, but I hate how it impacts on others too; above all, how it impacts on my mother.

I wish I was a better actor or, better still, that the pain would ease. Then I wouldn’t have to dread phoning her on my very painful days, like the one I’m having today.

My worst nightmare

Every priest and religious in active ministry today share one common nightmare – that he will receive a phone call from his bishop/congregational leader informing him that an allegation of sexual abuse has been made against him.

To be falsely accused of any crime is bad enough but nothing, except perhaps murder, compares with being accused of the sexual abuse of a child or vulnerable person. In most cases, you are instantly and very publicly removed from office, and even when there is no official explanation for your removal, local people will soon start to put two and two together. There is the shock, the incredulity, the shame (even though you are innocent), the helplessness, the vulnerability. Your world comes crashing down. You are made to feel guilty even before you have a chance to defend yourself.

Even when your family and friends believe and support you, you feel totally alone. You are stuck in a nightmare and you don’t know when or if you’ll ever get out of it.

You hope for the total support of your bishop/superior, but his first instinct will be to protect the interests of the church. As it has always been. In the old shameful days of the past, protecting the interests of the church meant ignoring the cries of those who were abused. It was an unforgivable act that destroyed countless lives, and for which the church continues to pay a heavy price. Now it means letting clergy hang out to dry, even when the allegation is anonymous and clearly spurious.

Because of the church’s past sins, allegations of abuse must always be treated with the utmost seriousness. The victim(s) must always come first. And the vast majority of allegations of abuse are one hundred percent genuine.

But if the allegation is anonymous, or if it is clearly false, the accused priest needs to feel supported by the church. That does not always happen, as Fr Tim Hazelwood describes in The Tablet newspaper (see his story on the Association of Catholic Priests’ website). What happened to him is every innocent priest’s worse nightmare. It is mine too.

What I said at my dad’s funeral six months ago

It is six months today since my father died. Though time does heal the pain, it is still so difficult to believe that he is gone for good. I will never forget the six am call from the hospital summoning us all to his bedside to say goodbye.

He had been in hospital for a week with a chest infection, but we had no idea that he was never going to come home again. That phone call left me dazed and confused. It had only been a few days since my third major back surgery and I hadn’t been able to visit him in hospital. Now I was struggling to put on my shoes and socks as I tried to process the contents of the phone call. He had clearly deteriorated overnight, and I had never even been to see him.

When I got to the high dependency unit, having been picked up by my brother, most of the immediate family was already there – my mother, herself seriously unwell, my sisters and their husbands, my brothers and their wives, and several of the grandchildren. My father was propped up on the bed, an ugly breathing mask obscuring most of his face, deeply unconscious.

I held his warm hand while others held other parts of him, and we told him how much we loved him and what a wonderful husband and father and grandfather he was, and that everyone was here with him now and that all would be well. And we prayed as he received the last rites.

He lived for just under half an hour after his breathing mask was removed. He shuddered a little at first and then gasped for air, his puckered lips trying desperately to suck in as much as he could. We watched and cried and spoke to him and prayed, hoping his last agony would pass quickly and yet not wanting him to go, hoping and pleading for some kind of miracle.

And then, at about 9.40am, he breathed his last. We watched, waiting, hoping he might pick up again, hoping he might breathe once more, but he had gone from us. His battle had ended, he had finished the race. He had just turned 84.

There’s not a day when we do not think and talk about him – but it’s mostly happy talk and happy memories. For he was a good and gentle and honest and upright man, and we are so glad to have had him for so long as husband, father, grandfather and great grandfather. He enjoyed life and was a happy man who showed love and knew he was loved.

He adored sunshine and would be sitting outside these days soaking in as much sun as my mother would allow. We remember him in a special way on his sixth month anniversary and pray that he is now enjoying the fruits of a live well lived.

These are the words I spoke at his funeral on December 4, 2015.

My father always had a very specific criterion by which to measure the success or otherwise of a funeral. He did not measure it on the size of the congregation; he didn’t judge it on the length or depth or wisdom of the homily; he didn’t assess it on the number of mass cards or floral wreaths placed around the coffin; nor was he swayed by the beauty of the singing or the grandeur of the liturgy or the tears that were shed or even by how good the meal was afterwards – and he loved his food. The one criterion that mattered, the only criterion that counted, was the number of priests present. The bigger the number the more successful the funeral. I think he would have judged this to be a good funeral.

My father was no intellectual, and nor did he pretend to be. Like so many others of his generation, he didn’t finish secondary school. He had, however, a real wisdom, acquired not from the study of books, or from years in the classroom, or from an intellectual curiosity, but rather something innate, and richer still, rooted in the rugged turf of Croughmarka where he drew his first breath just over 84 years ago. He knew the important things, the things that mattered, the importance of family and faith and fidelity and principle. He didn’t even have to think about them. He was moral, upright, responsible, decent, humble, loving, simple and good. And these most important qualities came naturally to him.

He spent more than the first quarter of his life in the hill country of Croughmarka, on the family farm, but then in his late twenties he had one very, very lucky break – he met my mother. They were wed in 1960.

She was his fortress, his shield, his solid foundation, his rock of safety and support without whom he would not have lasted so long or so happily. He used to boast that they never had a row – and they didn’t. It helped, of course, that he knew my mother was the boss. They had a relationship that was the essence of mutuality, one of total interdependency. He loved her and she loved him; he would do anything for her and she would do anything for him. Unconditional love.

My father was sensitive. A big softie. He cried easily, and wasn’t ashamed to show it.

He was tactile. He liked to express affection, and wasn’t afraid to demonstrate it. He loved to reach out to touch people, and to hold long to your hand with his warm, calloused hands, and to give big, tender bear hugs. Every time my mother visited him in hospital this past week he tried to pull her as close to him as he could. He let those he loved know that he loved them.

He was hard-working. For as long as he was able, he put in long hours, from sunrise until nightfall. Industriousness never frightened him – he thrived on it.

He was of the land and loved it. Farming was his vocation. He lived in sync with the rhythm of the seasons, the rise and fall of nature. The soil was elemental to him.

He was progressive. He was one of the first farmers in our part of the country to remove ditches and dykes and install paddocks, to build a state of the art milking parlour, and to replace churns with a bulk tank. So forward-looking was he that in 1972 the Irish Farmers’ Journal devoted a two-page feature to him entitled ‘This young Limerick farmer has a bright future.’

He was an extrovert. He liked people and loved talking. A trip to the village always took longer than it should for he always met people he had to talk to. His severe deafness of recent years was a very big burden because it meant he could no longer interact with people the way he wanted.

He was clean living. He was a Pioneer for almost 60 years, and, fearing a very quick divorce early in his marriage, he gave up cigarettes. He didn’t gamble, and he didn’t waste money. He lived a good and simple life.

He was straight-talking. If you put on weight, he’d let you know. If you got a new spot on your face, he’d be sure to point it out. But always without malice. Forthright and honest were just the way he was.

He enjoyed sport, especially hurling. One of his biggest burdens was living in a house of Limerick supporters. He could never understand why we could not support Tipperary under any circumstances while he was generous and magnanimous enough to support Limerick, when they weren’t playing Tipp. Late in life, he developed a mild interest in the fortunes of Liverpool Football Club, because of my passion for the club. But hurling was always number one.

The highlight of his year for many years was going to the All-Ireland hurling final. It didn’t matter who was playing – it was his only day off in the year, and my poor mother was saddled with the milking and the cows in his absence.

He was an old-time Catholic. He wasn’t a traditional Catholic in an ideological sense or out of a nostalgia for the past, or fear of the future, but out of a simple faith. His religion was deep rooted, but it wasn’t unquestioning. Several times in recent years, when my mother would suggest the rosary, he would protest, thinking of the setbacks that had befallen the wider family and himself, and of the weariness of the world, and say ‘what’s the point.’ But he would take out his beads and pray. The next day he would be the one to suggest the rosary. He said his prayers every day of his life.

In recent years, he lost his hearing; then his walk, then his balance, then his independence. The one thing he didn’t lose was his appetite. And nor, thankfully, his head. He had a clear mind and a firm grasp of things right to the end.

And it was when he had lost those things that family and love took on even greater significance for him. For it was my mother who fed him and looked after his medication and helped him go to the bathroom; and it was his grandchildren who tenderly helped him get ready for bed every night; the man who had become like a child; the children caring for the man. We are comforted that he never had to go to a nursing home; that he was able to stay at home with his loved ones, almost to his last, laboured breath.

To sum him up, my father was:

Essence of decency

Paragon of virtue

Exemplar of faith

Model of love

He loved us and we loved him. He – and we – were lucky. The world was enhanced by his presence, and it – and we – are diminished by his passing.

We are sustained by our memories, but, even more, we are sustained by our hope in the resurrection. That is our Advent hope. That is our steadfast belief. We know we will meet him again one bright, shiny, day, unhandicapped by age or pain or disability or the wear of the years.

Things I used to take for granted

Chronic pain disrupts your life. In fact, it takes it over. We don’t appreciate what we have until it’s gone. Here are some of the things I used to take for granted but not any more:

* Putting on my socks and shoes

* Tying my laces

* Using the bathroom without difficulty

* Driving long distances

* Genuflecting

* Taking no medication

* Sleeping with ease

* Working long hours

* Throwing myself carelessly onto a sofa

* Not having to look always around for the least uncomfortable chair

* Having a casual football game with my nephews and nieces

* Hill walking

* Planning a holiday

* Sleeping-in without discomfort

* Spending late nights watching tv or working or in the pub

* Sitting at a desk

* Not worrying every day about my future

Make sure to appreciate even the simple things, because you never know what tomorrow may bring.

Struggling to live, battling to stay alive

A year ago today, I left hospital in Dublin after my first spinal surgery. Though I was in pain, I was chirpy and full of hope. The surgery had gone well, I had been told. The bolt had been inserted and held in place with four shiny screws. Over the coming weeks, as the graft took hold and the wound healed, my strength should return and the pain should ease and eventually subside. That was the plan and the promise.
I came here to Limerick to begin my recuperation and, though the wound healed nicely over the following couple of weeks, the pain never disappeared. I waited and I fretted and I hoped, but it never went away. It was clear that the procedure hadn’t worked and I was despondent.

A subsequent scan showed that the screws had come loose and no healing had occurred. A new procedure was recommended. I jumped at it. Surely, once those blasted screws stayed in place, then the pain would disappear. I had the second surgery and a third two weeks later to add further support, but the pain never disappeared.

One year after my first surgery and six months after the follow-up surgeries, my pain is worse than ever. All I have for all my troubles is a titanium bolt and seven screws. I feel screwed both literally and metaphorically.

With injections having achieved nothing except to fill my back with alien fluids, and with the failure of various alternative treatments to make any difference, I am left with strong medication to help me through each day.

Now there is talk of inserting a spinal cord stimulator to deflect the pain. I don’t know precisely how it works, except from reading the literature there is no guarantee that it will succeed either. Some kind of morphine pump seems a last resort.

It is no exaggeration to say that the joy has gone out of my life and I have no pleasure in being alive in my current state. I have been doing a little extra work of late, but all I look forward to and the only thing that offers any solace is sleep. Thank God, with the help of a pill, I can get a relatively good night’s sleep. 

I dislike the advent of each new day, because it means another day of pain. Some days are better than others, but no day is good. I cannot remember what it is like to be without pain.

I am full of self-pity, though I am no less deserving of chronic pain than anyone else. I try to focus on the positives – and there are many of those: a supportive community that gives me the luxury of allowing me to work at my own pace and that provides the financial resources I need; a loving family and a mother restored to good health after we thought we had lost her; 52 years of life during which I had no pain and got to see so much of the world; the knowledge that so many people are praying for me and sending me good thoughts.

Still, my natural tendency is to see the half-empty glass. Much of the time, all I can think of is escaping from the pain. I can’t see myself living into old age if my situation remains as it is. I can’t see myself enduring even another two years of this daily purgatory. My thoughts turn very dark and I am tempted to despair and self-destruction.

I pray every day for the strength to keep going and for a breakthrough to take place, for I find this agony so difficult to endure. 

It’s as if pain is shrinking my brain

There may even be some scientific evidence for it, but I think chronic pain, or more likely, the medication I’m taking for the pain, is slowly making mush of my brain.

I’m certainly more drowsy than in the past and that is a definite side effect of the pills, but what I feel much of the time is more than drowsiness, almost as if there is a void where my brain used to be. There are days when I sit down to write and I can’t think of anything to say. I sit down to read, and nothing sinks in. I end up watching repeats of The Big Bang Theory, which at least has the advantage of distracting me from the pain as well as killing time.

I try to think or write and it’s like turning the ignition key to start the car and nothing happens. Or the engine heaves and splutters before slowly cranking into life.

It frightens me because I never had a problem expressing an opinion or being creative in the good old days before my back gave out and my life ground to a halt. I had no problem putting together a homily or posting a witty comment on Twitter. Now I try to think of things to say and nothing enters my head. I want to comment on issues of the day but come up empty.

All I like to do is sleep because then I enter a pain-free realm, a world of the unconscious where there is no suffering or struggle simply to stay alive and interested and focused.