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.


 

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The Christmas I managed to upset an entire congregation

It was Christmas 2001 and I had been invited to celebrate midnight Mass in a small, non-parish church on Dublin’s north side, a place I had never celebrated Christmas before. The year that was coming to an end had been a tumultuous one, with people still reeling from the events of 9/11 and talk about yet more conflict in the Middle East.

I decided that I would talk about how at Christmas, some people experience the absence of God more than the presence of God, how they can find it difficult to feel the joy of the incarnation. I used a story to make my point. It was one told by holocaust survivor Elie Wiesel, who along with the other concentration camp inmates was forced by the Nazis one day to witness the hanging of a young boy in retaliation for an escape that had taken place. Being but skin and bone, it took the boy a long time to die. And as the child hung there, struggling between life and death, Wiesel heard another prisoner cry out: “Where is God now? Where is he?” And Wiesel found himself silently answering: “Where is God? Here he is. He is hanging here on the gallows.” 

The point I was making was that even in the darkest of times, God is with us.

As I preached, I could sense a shift in the packed congregation, an hostility almost. It was just as well that I was too obtuse at the time to pick up on this negativity, otherwise I wouldn’t have been able to finish the liturgy at all.

When Mass was over, during the recessional hymn, I processed to the back of the church to take up position by the door to greet people as they left. I hadn’t time to catch my breath before an irate younger woman descended on me. “Are you saying Mass tomorrow as well, Father?” she asked. I told her that I wasn’t. “Good,” she replied, “because you should never preach that again, especially to a church full of children at Christmas. It was totally inappropriate.” She stormed off, leaving me stunned. Not good at handling confrontation, I wanted to scamper to the sanctuary of the sacristy and hide there, but it was too late. By this time the congregation was filing out of the church through the door beside which I stood. There was no escape. 

They weren’t slow to make their feelings known. “Dreadful. Dreadful homily,” a man bellowed without stopping to talk or even look at me. Another older man said the same thing. His wife tried to soften the blow. “It was fine, Father. Don’t listen to him.” But her husband interjected. “No, he needs to hear the honest truth. It was the worst sermon I ever heard.”

By that stage I was so taken aback that I was physically shaking. Usually, I received praise for my preaching. I had never received criticism like that before. Christmas was ruined for me. I learned the painful way that people don’t want to be reminded of harsh reality at Christmas time. They want happy clappy, feel good, uplifting stuff. They want angels and mangers and shepherds and joy, and I gave them Auschwitz and public hangings. No wonder they were angry at me.

I learned my lesson. I preached many Christmas homilies in the years since 2001, and while I never danced around the challenges that confront Christians at Christmas, I have always focused on the positive. No more upsetting stories. No more graphic tales of execution. No more talk about the absence of God.

This Christmas I have been thinking a lot about the incarnation, the good news of God with us. I have tried to feel it, to sense it, but my physical pain keeps getting in the way. I feel God’s absence far more than God’s presence. All I can do is try to believe, like Elie Wiesel, that somehow God is present with me in my agony. I might not feel God’s presence; sometimes during the long, dark nights, I might doubt it or even deny it. But I’m sure God doesn’t mind. I will keep trying to struggle on, hoping for glimpses of God’s presence, hoping for any shaft of light to help me endure into another new year.

Things that give my joy

A short list of things that give me joy (in no particular order):

• A Liverpool win

• A piece of chocolate of any kind

• Seeing my mother

• The end of another day, when I can fall asleep and escape from pain for a while

• A Munster or Ireland rugby victory

• A good homily well preached (or article well written)

• Any sign of renewal or reform of the church

• Family members doing well

• Receiving a thoughtful message or kind word

• A day when pain doesn’t spoil things

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.

Remembering one of my worst days

I remember vividly almost every waking moment of this day last year. It was the day of my father’s wake.

Unlike the more common practice today, we decided to wake my dad at home. We wouldn’t take his body to a funeral parlor. We wouldn’t bring it to the church for an overnight stay. Instead, we would keep him at home with us in his own house for one last night.

So the house was open to all-comers. My dad’s body was laid out in a coffin in the middle of the sitting room. All the chairs were pressed back against the walls surrounding it, allowing for a free flow of mourners around the room as they offered sympathies.

In the kitchen off the hallway was all kinds of food, mostly donated by relatives and friends. The kettle was always on the boil. Neighbours, relatives and friends acted as hosts and hostesses. We did not have to worry about any of the catering or hospitality duties.

Our only task was to gather round my father’s coffin during the official wake period from 3pm to about 7.30 and receive those who came to mourn my father and to express sympathy. The circle of chairs was occupied mostly by the female members of the family, while the men – my dad’s sons, grandsons, and sons-in-law – stood by the wall in their black suits and ties. 

I did not stand with them because I was not able. I had come out of hospital just a few days before, after my third spinal surgery in six months, and was wearing a brace to support my back. Earlier that day, just before the wake started, I had sought and received a pain-killing injection from our local GP. I was also wearing two pain patches and had taken every medicine I was allowed in order to help me get through the evening.

But nothing made any difference. The pain was excruciating and unrelenting. People in their kindness shook my hand, but even the gentlest handshake felt as if my arm was being ripped from my shoulder. The combination of physical and emotional pain was almost too much to bear. Several times, I just had to go and lie down for a while.

The wake lasted for what seemed like an eternity. Though it was a dark, winter’s night, and our farmhouse is in the County Limerick countryside, people came in numbers touching a thousand from all over the country and beyond. It was testimony to my father’s popularity but also a demonstration of Irish culture and tradition at their best. People wanted the opportunity to express their condolences in person and to offer support and solidarity to our family in its grief. 

I knew only about 10 percent of them. Younger people came, flush with youth and life, friends and colleagues of my father’s grandchildren. The old came, now bent and creased by the passage of the years, friends and contemporaries of my father. And people of my generation came too, lots of them, now in mid life, friends and workmates of my brothers and sisters. From the well-dressed, well-spoken professional to the shaven-headed, tattoo-sporting construction worker, from my elderly priest colleagues in the Redemptorists to school mates of the younger grandchildren, they came – a true cross-section of that part of rural Ireland on that dark December night, 2015. 

It was wonderful that they came in such numbers, and my father would have been delighted, but in my grief and physical distress, I thought it would never end. I wanted people to come out in their droves to acknowledge my father and his goodness, but at the same time all I wanted was peace and quiet and the solace of my bed. My back was on fire, my arm hurt, and my emotions were in turmoil. I had been in hospital in Dublin when my father was taken to hospital in Limerick for what turned out to be the last time. I had never even got to visit him (we had no idea he was going to die) and how here he was being waked and I couldn’t even stand beside my brothers as a chief mourner to greet and thank those who had gone out of their way to stand with us in our loss. The only good thing I was conscious of was that if my father had died a week or ten days earlier, I wouldn’t have been able to attend his funeral at all.

Eventually, of course, the numbers tapered off as the clock approached 10pm, and the local priest led us in some prayers for his soul. We left my dad in the sitting room with a teddy bear his great granddaughter had put in his coffin to keep him company, and we struggled our way to bed, knowing that the next day, the day of the funeral, would be another test of endurance. I wouldn’t be celebrating the funeral liturgy but I was going to preach. I wanted to do that last thing for my father, no matter how difficult it would be, and I did. I’m glad about that.

Now a year has passed, and the shock and grief have passed too. We will gather for his anniversary celebration tomorrow with sadness but also in gratitude for the person he was and the impact he made on so many. While my emotional turmoil has eased, my health problems continue. Unfortunately, my back pain is one thing that has not changed since exactly a year ago.

My friend, the new Cardinal

Yesterday a man I know was appointed to the most exclusive clerical club in the world. He was made a cardinal of the Catholic Church by Pope Francis. It was a surprise appointment. No one expected his name to be on the list, least of all the man himself.

I have known Joe Tobin, Archbishop of Indianapolis, for more than 25 years. He was a member the Redemptorist general government in Rome when I first met him. One of his responsibilities was for youth ministry, with which I also was involved.

I remember a large gathering in Durham in 1994 – a Redemptorist mini world youth day event – when he gave up his comfortable bed to sleep on the ground in a marquee full of young southern Europeans who were frightened of the frogs that had sought sanctuary there after a day of constant rain. I remember the many football/soccer games he refereed even after he was elected head of the Redemptorists. Though some of his on field decisions were questionable to say the least, it was hard even for the most hot headed player to mouth off at the man who was the head Redemptorist. I remember how he preferred jeans and sweats to the formal clerical attire of his office. I remember his wonderful storytelling ability, his extraordinary capacity to remember names, and how grounded in the ordinary he always appeared even as he attained high office.

Once finished his two-term spell as Redemptorist Superior General, Joe went on a study break to England. Then came his surprise appointment to the Vatican as secretary for religious. It was a challenging post at a challenging time. The newly ordained archbishop found himself thrust into the middle of the doctrinal investigation of US women religious by the Congregation for the Doctrine of the Faith, an investigation he strongly opposed. He lost that battle, being considered too sympathetic to the sisters, and was hustled far outside Vatican walls to be installed as Archbishop of Indianapolis in 2012.

Indianapolis is a vibrant, sports-mad city that is only about 10 percent Catholic, but the new archbishop quickly made his mark as an approachable, compassionate, eloquent pastor, who had, what Francis calls, the “smell of the sheep.”

He wasn’t typical of the US Catholic hierarchy which was full of John Paul II and Benedict XVI appointees, who tended to be politically and ecclesiastically right of centre culture warriors, constantly at loggerheads with the modern world rather than engaging with it. Joe Tobin is not a culture warrior, and nor does he favour lace over grace. He is one of the few bishops who goes to the Catholic Worker dinner held during the annual US Conference of Bishops meetings in November, rather than the formal grand banquet held in a plush hotel.

Last year he clashed with Indiana Gov. Mike Pence, now Donald Trump’s running mate, over the politically sensitive issue of resettling Syrian refugees. Pence had announced that Syrian refugees would not be welcome in his state, citing concerns about terrorism.

The Catholic Charities agency in Indianapolis had been working to resettle a Syrian family at the time of the announcement, and Pence asked that they put those plans on hold. After a meeting between the two men, Archbishop Tobin announced that the diocese would continue with its plans to resettle the family, and did so.

Archbishop Tobin is also on record as supporting the idea of women serving as deacons in the Catholic Church. Needless to say, this idea, broached by Francis himself, is controversial, so it’s wonderful to have another strong voice for greater equality for women from within the college of cardinals.

Two years ago, when I was planning my sabbatical after 23 years in Redemptorist Communications, I asked Joe if he could accommodate me in his diocese for a couple of months, where I could lend a hand in a parish while at the same time having plenty of opportunity to read, write and unwind. He could not have been more helpful. I met and ate with him several times during my six weeks in Indianapolis, a time cut short due to my developing back pain. I was grateful for his kindness and generosity. As a cardinal and still only in his mid 60s, Joe is a man I will happily trust with helping to choose the next pope, though I hope that won’t be anytime soon.

The fact that Francis has chosen as cardinals pastoral men, moderate progressives, who know the smell of the sheep, is good news indeed. He wants men (wouldn’t it be great if there were women among them before long!) who share his vision for the church and the world. In choosing Joe Tobin, alongside others like Chicago Archbishop Blase Cupich, Francis has chosen well.

Pain comes sweeping back

It’s just after five in the morning and I have been awake for more than an hour with pain that splits my body in two. I’m trying not to weep but I can’t stifle the tears.

I had been making progress, so I thought. I had started attending a new physio who emphasized that recovery was as much psychological as physical. She gave me some uncomplicated exercises to do and encouraged me to take less medication, stay up longer and engage more with people and with life. And I did. And I tried. And I thought I was making great strides – my colour was better, my weight up, my activity increased, my pill consumption down.

And then, literally overnight, the pain came surging back. I woke at 3am Saturday with pain in my hips and buttocks that I didn’t have before, and with my lower back feeling like a poker was buried in it. In a matter of hours the pain levels had gone from a livable with three/four to an uncopable with seven/eight. And the frustrating thing was I couldn’t understand why.  I tried to remember if I had done anything differently, if I had over or under exercised but I hadn’t. This enemy had simply attacked me again without forewarning or reason, and I was so disappointed. The pain in the hips has eased now, but my back is worse than ever.

I was going to forgo the surgery for the spinal cord stimulator, both because my new physio counseled against any more procedures and doubted it would help me a whole lot anyway, and because I really don’t want to subject my battered body to more trauma, but I am changing my mind. Pain has made my life miserable. It has left me unsure of what any day is going to bring. It has left me deeply unhappy. 

If the spinal cord stimulator doesn’t work, and this new physio regime turns out like the rest, then, as I’ve said so often before, please just let me go.