Tag: 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.



		
	
	


	





	

		
		
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.

	


	





	

		
		
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.

	


	





	

		
		
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.

	


	





	

		
		
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.

	


	





	

		
		
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.

	


	





	

		
		
One devastating week
	


	
	
	

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


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


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


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


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


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


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


I am tired.