Medical update – Up and running for SCS surgery

For the first time in six months I travelled to the capital yesterday to attend an ‘education day’ in preparation for my spinal cord stimulator (SCS) surgery. The event took place in a city centre hotel and was facilitated by a leading member of the pain intervention team at the hospital I attend.

Seven prospective recipients of the SCS surgery and their companions attended. We were required to bring a companion so that he/she would know about the procedure and be there to offer support afterwards.

It wasn’t difficult to identify the chronic pain sufferers in the room. All one had to do was look at their faces.

I had already researched all about SCS surgery but I found the day to be both educational and entertaining. It was clear that our facilitator knows her stuff. She told us that more than 500 people in Ireland have had the surgery to date, with a success rate of more than 85 percent. Success is defined as experiencing a decline in pain levels of 50 percent or more. Some patients have done much better than that, even becoming entirely pain-free, while a few have experienced little or no relief from the procedure. They don’t know why it works for some and not for others.

Given the delicate and invasive nature of SCS surgery, there is always a trial period of about two weeks to test whether it will work for the patient or not. If it is making a positive difference, then the device will be implanted permanently.

The surgery requires that incisions are made in the upper and lower back so that leads can be placed along the spinal canal and then to the battery device itself, which is usually placed in one of the buttocks. You can turn the device on or off, or up and down, by using a remote control gadget similar to a TV remote. The device is programmed while the patient is in hospital, and can be modified remotely by the pain management team afterwards, if required.

The recovery period is lengthy. The patient is asked to be as still as possible for three to four months to give the leads a chance to take root solidly in the proper place along the spine. Sudden movement can cause the leads to move out of position, which would then require more surgery to return them to their proper spot. Nobody wants to have to go through that.

Then we were given the list of ‘Don’ts.’ Don’t bend, don’t lift, don’t pull, don’t twist, don’t stretch, don’t push; don’t make any sudden movement that might dislodge the leads. And all of this for three months. Don’t drive for four months. Don’t go back to heavy work for up to six months. Healing and recovery require that we do as little as possible for the remainder of the year, so that by the end of it, hopefully, we can live full lives again.

Almost as discommoding as these instructions was the news that we can’t take a shower for about two weeks after the procedure or until such time as the stitches are removed. Given the nature of the surgery, there is a high risk of infection if the wounds aren’t cared for properly. As the instructor put it, nobody ever died due to the lack of a shower for a couple of weeks, but lots of people have died as a result of serious infection.

Though the instructor didn’t downplay the risk of failure, she was keen to tell us about success stories, and there are plenty of them. She also promised that, if we wanted, she could put us in touch with a patient who had a similar pain history to our own and had successful SCS surgery, who could function as a friend and support along the way. An excellent idea.

All that remains now is to be given a date when to show up at the hospital for the two-week trial period. That could happen any time within the next few weeks.

I journeyed back to Limerick last night (after an hour-long diversion at Portlaoise had added to an already very long day) feeling optimistic that the SCS will ease my pain enough to allow me to function properly again. And that would be a delight.


 

Ten wishes for the church in 2017

  1. That the church will examine any structures, laws or traditions which hinder rather than facilitate its mission to proclaim the Good News. Our world today needs to hear the Gospel message as urgently as at any time in the last 2,000 years. Nothing man-made should be allowed to stand in the way of this overriding task.
  2. That the number of dioceses will be cut from 26 to at least13. There is absolutely no need for 26 dioceses in a country of our size with our population. This won’t happen overnight, but cutting the number of dioceses would reduce administration (and the number of bishops), and make for a more efficient church.
  3. That organisers of the World Meeting of Families will make every effort to ensure that the experience of families of all kinds will be factored into the celebration.
  4. That the church will be experienced as truly the People of God. The church teaches that it is made up of all the baptized, but many ordinary Catholics do not experience this to be the case. They see it rather as an elite club for celibate male clerics only, and who want to preserve the medieval structures of the institution at all costs.
  5. That the church will recognize and use the gifts and talents of women to build up its life and ministry. Many women feel excluded from any real decision-making or leadership role in the church simply because they are women. Women must be given true ownership of the church of which they make up more than 50 percent, and be allowed real and meaningful involvement.
  6. That Catholics will have a real say in the choice of their leaders at local and diocesan level. Bishops should not be foisted on people and priests as a result of some secret Roman process, based on how suitably conservative they are. Lay people and clergy must have a say in the selection of their leaders. The selection process must be open and transparent, allowing an opportunity for the input of all.
  7. That the church at every level will identify with and not be afraid to speak out on behalf of the weak and vulnerable in society, as Pope Francis insists. The church must not only be prophetic; it must be seen to be prophetic. That prophetic voice is needed especially in these tough economic times.
  8. That the LGBT community, many of whom feel alienated from organised religion, will feel more welcome in the family of church.
  9. That the Gospel of Jesus Christ will be proclaimed and heard as Good News. Too often, in the church’s teaching and preaching, people do not hear God’s word as good news. They hear it as something that enslaves rather than liberates, as a series of forbidding rules and regulations (especially around sex) rather than as a message that is truly joyful and life-giving.
  10. That priests and religious who have left the ministry will be invited to return to it, if they so wish, thus enriching the church with the wealth of their gifts, talents and experiences.

Pain has beaten me

Two months ago I thought I was gaining control of my chronic back pain. I had found a new physio, I had followed her recovery plan and had cut back on my medications. I had increased my exercise and stayed up longer each day. And it seemed to be working. The pain had begun to ease to such an extent that I decided I didn’t need more surgery after all and could live without getting a spinal cord stimulator. I began to look forward to having a reasonably active, good quality of life.

Now that hope is crushed. For the past six weeks the pain has been increasing again, so that now it is as intense as it ever has been. I was hoping it was a short-term flare up, and was determined to not panic. I continued doing what my physio has recommended. But to no avail. The pain is so bad I want the spinal cord stimulator to be inserted as soon as possible. It is the last shot I have at being set free from this prison. If it fails, there is nothing left, but that is okay. Then I can choose whether or for how long more I can continue to endure this torture.

Thinking about life and end of life, I realize that I have been lucky in so many ways. I don’t have a bucket list of things I want to do before I die. I have done most of what I wanted. I have no desire to see how trump fares in office or how brexit works out. Indeed, the direction the world has taken of late makes it a far less attractive place to be.

The only reason I want to keep on fighting is for the sake of my mother and family. But the pain is beating me. All I can do is try to take each day at a time for as long as I can.

Words delivered at the funeral of my Aunt Mary, Sr Peter, Cork (November 16, 2016)

The last time I saw Aunty Mary really fully alive was two and a half years ago when we gathered in the nursing home in Boherbue to mark an extraordinary achievement – her platinum jubilee of profession. Alongside two others, she was celebrating 70 years as a Sister of Mercy, 70 years as a member of a religious family that has done wonderful work for God since it was founded in 1831.

Aunty Mary was in her element that day. She may have been in her 92nd year, dependent on a walker to get around and on others to manage her getting up and laying down, but her mind was sharp, and there was that familiar twinkle in her eye and bubbly smile of enthusiasm and anticipation that I always associated with her. It was the last of many wonderful times we celebrated together.

Her memory began to fail soon after that milestone event, so that for the past two years she had been gradually losing touch with home and family and community and world. A frail little woman, still smiling, but without life in her, the twinkle in her eye now no more. To see her like that, little more than a shell, not knowing who we were, not able to initiate conversation, not asking about grandnephews and grandnieces, especially whomever she had deemed was her current pet, was distressing and we are relieved that she is now free at last, enjoying the just reward of a good and faithful servant of God.

Today we gather not so much to mourn as to celebrate, and there is much celebrating to do.

There was the length of life and of good health that God gave her. She lived to see incredible change in the world and in the church. She was born in Doon, Co. Limerick in 1921, just as Ireland was gaining its independence. She left home to join the Sisters of Mercy in faraway Macroom, Co. Cork as war raged across Europe and the Far East. She made her first vows in 1944, as D-Day was about to get underway in France, and vocations were plentiful and churches were full. She was witness to the dramatic changes in the church in the period after Vatican II, from an era of strict enclosure and uncomfortable religious garb to greater freedom and less restrictive dress. Though she was no fashionista and came late to the world of fashion, she liked a nice suit and a healthy splash of colour.

The changes in the church also made it possible for her to go home more often. And that, she did. She must have been one of the very few religious sisters in Ireland to still have her own bed in the house of her birth right into her nineties. And home she came, as often as she could, until just a few years ago. She was so fortunate to be able to do that, and we were fortunate that she could.

She was, of course, a teacher. But she wasn’t just a dedicated teacher, good at her job. She was an outstanding teacher, great at her job. Time and again, her primary school classes won prizes at local and national level, in essay writing and in other competitions. One prize was a replica copy of the Book of Kells. But Aunty Mary, or Sr Peter as generations of Macroom students would have called her, wasn’t obsessed with winning prizes. She was focused on educating children, encouraging them to realise their full potential, as in one example of two special needs pupils who floundered at school until they came under Aunty Mary’s tutelage. She changed their lives, and enabled them to flourish, to be the best they could be.

There was her strong work ethic and commitment. In 1988, upon reaching retirement age at home, she headed off to Africa for two years, to teach there. She could have taken it easy, put her feet up, or got involved in some local project, but she would have none of that. She wanted to do more, to teach a while longer, if she could, while she could, and so she went to Kenya. She wasn’t the least bit apprehensive about having to adjust to such a different culture at her age. Instead, it invigorated her.

And once back home in Macroom, she remained active – arranging readers for Mass, promoting Reality magazine, assisting the local parish and community in any way she could, until finally, into her 90s, worn out, she could do no more. No one can question Aunty Mary’s zeal.

There was her love of life. She spent almost a century on this earth and she embraced it with relish. She had what seemed like an almost childlike enthusiasm about her, an effervescence, that made it easy for people to engage with her and for her to accept and embrace whatever challenges came her way, whether they were the changes in the church and religious life or the changing circumstances of her own.

There was her love of family. Everything she did, outside of her commitments in the classroom and the convent, she did for us. I experienced that love personally in so many ways throughout my life. She took me on my first grown-up holiday, to Ballyferriter in Kerry, when I was all of 10 years old. We spent a week in a B&B over a pub, she and two other sisters and myself, alongside Americans and all kinds from far and wide. Her wonderful ability to make friends meant that a nice Dublin couple with two young daughters took the three nuns and myself along with them on their daily trips to the beach. I remember, too, that every day during that week she had me do some reading. Even while on holiday, she continued to teach.

I remember all the stories she typed out for me before I got a typewriter of my own, and all the books she bought for me when I was in the Philippines and couldn’t get them myself, and all the copies of Reality magazine she sold for me, many hundreds of them, with her ledger full of subscribers and her accounts carefully tallied to the last penny. I knew the reason she did it was out of love for me.

When my sisters got married, she did their wedding booklets. Whenever we had a major family celebration, she got the younger participants to practice the readings, just as she always encouraged them with their study. She might have lived in Macroom and elsewhere for periods during her long life, but the house in which she was born always remained home.

And, of course, there was her religious vocation, which was the foundation of all that she did and represented. She loved God and she loved being a Sister of Mercy. She was a wonderful advertisement for the religious life – a simple, happy, smiling woman, without airs or issues or graces, without arrogance or resentment or regret, without a doleful hankering after the good old days of the past but, rather, a hope-filled trust in God’s promise and plan for the future. A joy-filled woman always loyal to the vows she made nearly three quarters of a century ago; a faith-filled woman who lived in love of God through humble service of others.

She was indeed a good and faithful servant. And even though we gather today to commend Aunty Mary to God and to celebrate a live well lived, there is sorrow and sadness too. For her passing is reflective of a larger passing taking place in the church in Ireland and in the West. The convent where she spent most of her life is gone now, like so many others throughout the country; that extraordinary era when so many thousands of generous women like Aunty Mary entered the religious life is now just part of history; future generations of young Irish will not have the benefit of the selfless service and sacrifice of religious like Aunty Mary, nor will the Irish church.

But enough of that… she wouldn’t want us to be morose or nostalgic today. Instead, as we say goodbye to our beloved aunt and sister, we acknowledge her wonderful legacy, and that of all good religious such as she. We thank the Lord for the many blessings with which he blessed her and the strong faith which he gifted her, and we entrust her soft, gentle soul to the merciful embrace of the God she served so well.

New Vatican rules on cremation will only put people off

Earlier this week the Vatican’s Congregation for the Doctrine of the Faith published a new instruction on the burial of the dead and on cremation, entitled “Ad resurgendum cum Christo” (“To Rise with Christ”). The instruction states that because of its belief in the resurrection of the body and because the human body is an essential part of a person’s identity, the church insists that the bodies of the deceased be treated with respect and laid to rest in a consecrated place.

Burial of the remains of the deceased is the church’s preferred option, but cremation is also permitted. In fact, the Catholic Church has permitted cremation since 1963, but only now has got around to issuing specific instructions as to what should be done with a person’s ashes.

The instruction forbids the scattering of ashes (there goes my plan to have my ashes scattered over the hallowed turf of Anfield!) as well as the growing practice of keeping cremated remains at home. Instead, the urn containing the person’s ashes should be placed in a sacred place – a columbarium or tomb – that is marked with the person’s name.

It’s no surprise that there has been strong reaction to this latest Vatican decree. Some have welcomed it, saying it was necessary to have clarity on the issue. Many have ridiculed it, suggesting that it demonstrates how out of touch the Vatican is. Others have said there are far more important issues the Congregation for the Doctrine of the Faith should be focussing on rather than what to do with people’s remains. Others see it as a joke, just as they do the whole idea of the raising up of the dead person’s body to new life on the last day. So, their response is, let the deceased’s family decide what they want to do with his or her ashes, and how they want to mark their loved one’s death.

One of the Vatican’s chief concerns in publishing this instruction is for the respectful disposition of the dead. “A human cadaver is not trash,” said Cardinal Muller at the press briefing, and an anonymous burial or scattering of ashes “is not compatible with the Christian faith. The name, the person, the concrete identity of the person” is important because God created each individual and calls each to himself.

There is no doubt that some people, a very few people, do not treat their loved one’s ashes in a respectful way, and putting them into items of jewellery or pendants or dispersing tiny quantities around the world to different family members does not sound edifying or even proper.

But it’s also true to say that almost everybody, whether they are Christian or not, do not see or treat the dead body of a loved one as “trash” simply to be disposed of as they fit. They do try to treat it in a respectful way, often in accordance with the specific wishes of the deceased person. Occasionally, how they do this may be unconventional, but that does not mean the deceased will be forgotten in time or will be cut off from God’s embrace or the possibility of resurrection. While reasonable in much of what it has to say, to many people this CDF instruction is all about laying extra burdens on grieving families at a most vulnerable time in their lives.

And when it comes to respecting the dead, a tradition the Vatican might look at is the use/abuse of saints’ relics. How respectful is it to the body of a saint to put his or her relics on display, or have fragments of bone or hair scattered here and there across the globe?

A fact, too, that cannot be ignored is that cremations are cheaper than burials when expenses like the cost of a grave and headstone are factored in, so they are going to rise in popularity in Ireland and elsewhere irrespective of what conditions the Vatican lays down.

And if priests or bishops take a heavy handed approach to implementing this new instruction, all it will do is reduce the number of funerals held in church and further alienate people from the faith.

That would be a disaster because the Catholic funeral liturgy – its solemnity, symbols, rituals – is one of the great treasures of the church, that offers wonderful solace and support to families in their grief.

Finally, how is this new policy going to be policed? Will grieving families be forced to spell out what they will do with their loved one’s ashes before a Catholic liturgy is permitted? And afterwards, what can a priest or parish clerk or busybody do to ensure that the ashes have been disposed of as the CDF wishes?

As church, we must always strive to do what’s best for the bereaved. We should always be careful not to place unnecessary burdens on people.

Words delivered at the funeral of my aunt, Mary Kelly (Oct 20, 2016)

As we know, a bitter presidential election campaign is slowing drawing to a close in the United States. It has had many low points, and few high points. But there is a statement Michelle Obama has made a couple of times now that has resonated with many people, and that I thought of too, as I looked back on the life of my aunt, Mary Kelly. Speaking of her opponents, Michelle Obama said: “When they go low, we go high.”

Go high…

That is what Aunty Mary did all her life, both in a literal and a metaphorical sense – go high. She went high. She always went high.

She was born and bred on high ground in the hill country of Croughmarka almost 93 years ago. She crossed those hills every day to go to school. She met and fell in love with and married a young man called Paddy, also born and bred on high ground in the same hill country. They spent most of their wedded lives together living on high ground, in a house nestled in the hills of Commonaline, rearing a family in often challenging conditions, when farming was tough, and frugality a necessity, and the weather not always hospitable. But being high up in the hills didn’t matter to Mary. She loved the mountains and she loved the outdoors.

Towns, cities, exotic foreign destinations, overseas travel – none of these held the slightest attraction for her. It was on the high ground – enjoying its grace-filled natural beauty, imbibing its unspoilt, invigorating fresh air, feeling the mountain dew beneath her feet, living in tune with the rhythm of the seasons – it was in Commonaline where she felt at home and happy and fully alive.

Go high. Aunty Mary went high.

But her going high wasn’t just a geographical thing, a matter of physical location. Aunty Mary went high in so many other ways too, the ways that define and describe one’s character, the essence of who a person truly is.

She had a high moral compass – a just woman who lived by the simple truth and did not tolerate wrongdoing; values she inculcated in her children and grandchildren.

She had a highly developed work ethic and sense of responsibility. Whether outside or inside the house, she worked long hours for long years for as long as she could, no cribbing about it. For her, it was simply doing her duty.

She had high standards of cleanliness – the yards and sheds always immaculate, her house spotless, too. One marvelled at how it could be done and how she did it.

She had a high sense of respect for others, was slow to speak ill of anyone, and was always warm in her welcome. She had a knack for making everyone feel special. Her constant smile reflected that. The way those in the nursing home loved her confirmed it.

She had an extraordinarily high capacity to love. She loved Paddy in a way that words cannot capture. A long, long love stretching back almost all their lives, broken only by his passing in 2005. His unexpected death was the beginning of her end. She loved her children and grandchildren in the same lavish, selfless way. The bond she had with them and they had with ‘granny’ was a thing of rare, high beauty. She was so proud of them. The way that Anne loved and cared for her deserves special mention.

It was easy especially to witness those love bonds these past few days as she grew smaller in her bed and her breathing grew shallow and the end drew near. The love, the togetherness, the unity, the sadness were all on display and yet also a profound sense of gratitude for having had this woman among us for so long, for being lucky enough to know her and be part of her family. I found my encounters with her to be almost sacramental – an audience with a gentle, simple, smiling woman who radiated something of the warmth and tenderness of God.

And, of course, that was no surprise, because she was a woman of faith. Her love of and trust in God was high. Her faith nourished her; strengthened her; it was what sustained her through the setbacks that came her way. Dying didn’t faze Aunty Mary. Just as in life she always went high, so also when she was faced with the prospect of death.

There are many today who believe that death is the end, period. That once you breathe your last, you’re gone forever, done and dusted. The best you can hope for is to leave behind some sort of positive legacy and happy memories, and a big gap in loved ones’ lives.

For us Christians, it is different. We know that death is a door, not a wall. Death isn’t an exit to oblivion, a sorrowful slide into nothingness. It is, rather, the threshold to a new, transformed life with God forever. On Monday morning, at 6.50am, Aunty Mary crossed that threshold from life to death, from life to life. Her earthly body is empty of life now; her strong heart is quiet; her big smile has given way; all we are left with are her mortal remains. But having crossed that threshold on Monday morning, she did not journey from life to death; from a breathing, smiling, pulsating, warm, wonderful human being, a granny to everyone, into some cold, dank abyss of darkness and destruction, she passed in that moment from this life to a completely new glorified life, life with God forever.

The second reading from St Paul, read to us by Noel, contains one of the most reassuring statements in all of scripture. Paul tells us that nothing can separate us from the love we share in Christ Jesus. “For I am sure of this,” he says, “that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”

Mary, our beloved one, knew and subscribed to that good news all her life. Now, reunited with Paddy and all she loved and lost, nothing separates her from the warm embrace of Jesus, her saviour. In our liturgy today, as in every liturgy, we are reminded that in Christ Jesus, we remain united with those who have died. Mary is gone from us but not forever. She is separated from us, but not for good. In this knowledge, we find our solace, our inspiration, our consolation, our hope.

And so we say our farewells. We are left with our tears and our sadness but, even more, we are comforted with countless happy memories and with a joyous sense of gratitude that we could not have asked for a more wonderful wife, mother, mother-in-law, grandmother, great granny, aunt, cousin, neighbour or friend – a woman was who a bastion of common sense, a beacon of light, a rock of faith, a fountain of love, a beautiful, caring, smiling woman who always, always, always went high.

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.

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.