The black dog has been hounding me for the past week or so, that feeling when you are low and listless and each day becomes a struggle.
The black dog grabbed me and held on tight. Only now is his grip beginning to loose. It’s not always easy to identify what springs him from his kennel but, I think, several factors have been at play.
The usual January blues have done their thing. It’s that time of year when the Christmas buzz has dissipated, but the all-enveloping seasonal darkness remains.
There has been a spike in my chronic pain. Cold weather exacerbates the constant ache in my back, which of course is not helped by the January blues. Medication does little for my pain. Doctors can do nothing. All I can do is struggle on.
The state of the church in Ireland and the world has left me feeling low. The post-Christmas assembly of Irish Redemptorists demonstrated with crushing clarity just how fragile we have become as a body of men and how fragile is the state of religious life in the western world. What will we be like in ten years’ time? How can we plan for the future when it appears there is no future? How different it seems now from the organisation I joined straight out of school almost 40 years ago.
The state of the world hasn’t helped. The Madness of King Donald and the British Tory Party, as well as the coming to power of extremists such as the new Brazilian president and the clinging to power of autocrats such as the current Venezuelan president, has left one feeling angry, bemused and worried for the future. Our bright, progressive, tech-driven world is threatened by the primal forces of fearful populism and narrow nationalism.
There is also the peculiar loneliness of the long-distance celibate, the tsunami of aloneness, of lack of intimacy, of disappointment and regret, that occasionally washes over and engulfs and almost drowns.
There has been nostalgia for days past, when I was busy and occupied, and thrilled to the buzz of the editor’s office.
So I wonder in the midst of all of this, what have I achieved over my almost 57 years of life? What, if any, difference have I made to the world or the church? What have I contributed over 30 years of active ministry? It’s a desperate seeking after validation, scratching beneath the surface of my existence to see if I have left any visible imprint for good. I know I have, though, when hounded by the black dog, I see just the trace of a blurred line on a tattered copybook.
All I can do at this stage is to try to be good, be honest, be loving, and a little prophetic if I can. And if I can manage any of that, and smile a bit more, then I am doing something meaningful.
Tag: chronic pain
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.
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.
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.
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.
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.
A God deaf to my appeals
I have written countless Gospel commentaries and preached countless homilies over the years and I have always done my best to offer them as Good News. Challenging, consoling, uplifting words.
But I am coming up short now.
Tomorrow’s readings are all about perseverance in prayer. Keep on knocking on the door, and eventually God will answer. Ask and it will be given to you. Seek and you will find. Knock and the door will be opened to you. For the one who asks always receives, the one who searches always finds; the one who knocks will have the door opened to them.
Except it’s not the case.
I have asked and I have sought and I have knocked – and there has been no response from on high. Many others have asked and sought and knocked on my behalf too – and have found only silence. Candles burning to the quick, prayers unheeded, the door left firmly closed. After two years of hell, my pain is more intense and more deeply rooted than ever. My despair beyond despair.
In my old pre-pain, preaching days, I would have found ways to explain or make sense of this silence from beyond. God will answer in God’s own good time, God knows what’s best for us, God’s ways are not our ways.
Maybe that’s true, except that’s not what tomorrow’s readings promise. All I know from long, painful experience is that the God to whom I have dedicated my life has been dead to my appeals, and, whatever about miserable me, God has been dead to the appeals of my saintly mother and my aunts and of so many, many others.
All I am left with are tears. I’m not even sure that it’s worth my while screaming with the psalmist, “Out of the depths I cry to thee, O Lord,” for all I seem to encounter is the sound of silence.
Another crushing hospital stay
After 12 days in hospital, I returned home on Saturday. Twelve days of disappointment, hope and, ultimately, despair. I am back in Limerick more broken than before I left it.
I had a reaction to the first drug they tried on me. It was being funnelled in through a little tube in the stomach area, but that area became inflamed and sore. They switched to an oral form of the drug. The pain eased slightly. I thought there was light at the end of the tunnel but after a couple of more days it became clear that this new drug was failing too. So, ever the optimist, the doc change me to another medicine, again to be taken orally. As they increased the strength of the drug every day, they reduced and finally eliminated the pills I was on. This new drug seemed only to be making me groggy, but I was hopeful that once I returned home, to my own environment, I would notice its positive effects.
Then I started being physically sick, throwing up the meds I had just taken. I was sleepy and nauseous, and all the time the back pain continued to burn me up as before. So, following a discussion with the doc yesterday, it was decided to abandon the new drug and return to my old one – the same ineffective one I was using before my fruitless hospital stay.
To say that I am disappointed is an understatement. I am crushed. The final option open to me is the spinal cord stimulator, but it could take a month before this happens. I want to have it because I will try anything to reduce my pain. And yet I am scared, because if it fails, there is nothing left. It will be the end of the road.
The doctor, like all the others I have dealt with in the past, started off full of easy optimism. “Eighty or 90 percent of people respond very well to such and such medication. We’ll get you sorted.” Then, when that med fails, he shrugs his shoulders and says, “Well, we’ll try this other one so. Up to 90% of people get great results from it, etc, etc.” And when that in turn fails, and I ask why it hasn’t worked for me, he says that I fit into that difficult tiny percentile of people who are unresponsive to various interventions. Which is so devastating to hear. The disappointment as much as the pain is killing me, literally. I’d rather docs didn’t offer false assurances but I suppose they have to be positive for the sake of their patients.
Two years ago I would not have believed that there were people in the so-called First World who had to live with chronic pain. I thought medicine had advanced enough to ensure that people did not have to suffer 24/7. But now I know that there is a vast community out there living with chronic pain, whose best hope is a few hours of relief every few months, if even that. I have increased empathy for people I see who are bent over or in clear physical distress. It is a lonely place to be.
I am 54, and I can’t imagine going on into pension or old age like this. I can’t remember what it is like to have no physical pain, to go to bed looking forward to the next day and not dreading it. The disappointment and the despair are killing me, even if the physical pain on its own won’t finish me off.
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.
frommypulpit 