Seeking reasons to stay alive

I am going through some dark days. Anyone who has happened across this blog will know about my battle with chronic pain. It’s a battle I have been fighting for more than two years now, and it’s a battle I’m finding it harder and harder to fight. It frightens me to think of the number of hospital visits I have made, the number of medics I have seen, and the number of procedures I have gone through, not to mention the amount of money I have spent.

And yet, and yet, the pain is more deep-rooted and widespread now than at any time in the past. It’s wrapped around my lower back and my left thigh. It digs in and through me – and no pill, no opiad, no medication of any kind can make a dent in it.

I try being more positive, I’m trying journaling, I walk a lot, but nothing seems to make the slightest impact.

I’m awaiting news on a spinal cord stimulator, but though I want to have that procedure, I’m also scared of having it. It will mean more surgery on my already fragile body, and of course there is no guarantee that it will ease my pain. If I were to have it, and it did not work, I doubt that I could cope with the disappointment.

I know that in many ways I am lucky. I have a community that supports me and that allows me to do as little or as much work as I can manage. I don’t have to worry about my next meal or how I will pay for a consultant’s visit.

But it makes me feel guilty, too. Because I earn nothing, and my tear-filled, sorrowful presence only upsets people. I am making no contribution.

And as each day turns out as miserable as the one that went before, I wonder about my future, for I know that I cannot go on living like this. I do not have the strength. My spirit is sapping. My motivation is slipping. My faith is weak. I can’t take much more.

And so I seek reasons to keep on going. What is life if there is no happiness? Why go on if there is only spirit-crushing, unrelenting pain, day after day, week after week? I do try to hold on for the sake of my mother and my family, and because I have enjoyed being alive for the 52 pain-free years that I had, and because I want to build up the life of the community and the church.

But it’s difficult.

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I have become but skin and bone

I am fading away. For some time now, I have noticed that I’m losing weight, but, despite my best efforts, I can’t stop the pounds from falling off. I have never been overweight. At my heaviest, I’ve been about 12 stones, but today I weigh just a few pounds over nine stones or 131lbs. It’s not a healthy weight.

Some people with chronic pain put on weight due to lack of exercise. I am the opposite. My chronic pain is knocking the weight off of me.

I went to the swimming pool for the first time in months last week and was shocked to discover just how frail and skinny I have become. The water from the jet pool was too strong for me, it nearly blew me away. I could barely lift my legs to get out of the water. Though there were several older people in the pool, I felt the oldest and weakest of the lot. And the most frightened too.

It’s not that I don’t eat – I do. And I love sweet things. It’s just that I can retain nothing. Day by day, pills and pain are sucking the weight and the life out of me. 

If anyone knows a good way to increase weight, that doesn’t increase constipation, I’d be delighted to hear about it. Because not only are my clothes becoming too large for me, if I don’t build up some strength soon, it will be much harder to fight my way back to recovery.

Hospital blues

I am now in hospital more than 24 hours. In terms of facilities, it couldn’t be better – spacious room, big tv, wonderful menus (I might add to my miserable 62kg weight), caring staff. A few days in this place would be a lovely break were it not for the reason I’m here, which is to try to calm my pain.

A line was inserted into my stomach yesterday. It carries a strong painkiller, which should begin to ease pain after a few hours. Alas, so far it has done nothing. The pain has not diminished. It’s as if the line had not been inserted at all.

Of course, there have been the usual reassurances – give it time, don’t panic, let’s see what happens over the next couple of days. I know all that, and yet it’s hard not to feel disappointed.

I know, too, that things could be worse. I have a cousin who has been in the same hospital bed for more than a year, and who displays extraordinary resilience. I marvel at his fortitude and determination. I must try to hold onto hope, even if I have always been a glass half empty person.

Back to hospital I go

It’s been a while since I blogged, mainly because there was nothing new to report.

Now, however, I am preparing to return to hospital. I will be going in on Monday and will remain for up to five days while they try a different drug out on me. If that doesn’t produce the desired results, then I will be getting a high velocity spinal cord stimulator, which, the consultant assured me, can reduce pain by up to sixty percent. This is an electrical device that disrupts pain signals.

It’s a slow process, though, and may take a couple of months before it is put in place. If I do end up with the stimulator, not only will I be screwed (I have seven screws in my back), I will also be wired as well. When I die, I might as well be sold for scrap.

So, I’m hoping that the journey I am about to take will be the one that brings me some comfort and hope.

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.