Seeking reasons to stay alive

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

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

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

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

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

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

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

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

But it’s difficult.

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Struggling to live, battling to stay alive

A year ago today, I left hospital in Dublin after my first spinal surgery. Though I was in pain, I was chirpy and full of hope. The surgery had gone well, I had been told. The bolt had been inserted and held in place with four shiny screws. Over the coming weeks, as the graft took hold and the wound healed, my strength should return and the pain should ease and eventually subside. That was the plan and the promise.
I came here to Limerick to begin my recuperation and, though the wound healed nicely over the following couple of weeks, the pain never disappeared. I waited and I fretted and I hoped, but it never went away. It was clear that the procedure hadn’t worked and I was despondent.

A subsequent scan showed that the screws had come loose and no healing had occurred. A new procedure was recommended. I jumped at it. Surely, once those blasted screws stayed in place, then the pain would disappear. I had the second surgery and a third two weeks later to add further support, but the pain never disappeared.

One year after my first surgery and six months after the follow-up surgeries, my pain is worse than ever. All I have for all my troubles is a titanium bolt and seven screws. I feel screwed both literally and metaphorically.

With injections having achieved nothing except to fill my back with alien fluids, and with the failure of various alternative treatments to make any difference, I am left with strong medication to help me through each day.

Now there is talk of inserting a spinal cord stimulator to deflect the pain. I don’t know precisely how it works, except from reading the literature there is no guarantee that it will succeed either. Some kind of morphine pump seems a last resort.

It is no exaggeration to say that the joy has gone out of my life and I have no pleasure in being alive in my current state. I have been doing a little extra work of late, but all I look forward to and the only thing that offers any solace is sleep. Thank God, with the help of a pill, I can get a relatively good night’s sleep. 

I dislike the advent of each new day, because it means another day of pain. Some days are better than others, but no day is good. I cannot remember what it is like to be without pain.

I am full of self-pity, though I am no less deserving of chronic pain than anyone else. I try to focus on the positives – and there are many of those: a supportive community that gives me the luxury of allowing me to work at my own pace and that provides the financial resources I need; a loving family and a mother restored to good health after we thought we had lost her; 52 years of life during which I had no pain and got to see so much of the world; the knowledge that so many people are praying for me and sending me good thoughts.

Still, my natural tendency is to see the half-empty glass. Much of the time, all I can think of is escaping from the pain. I can’t see myself living into old age if my situation remains as it is. I can’t see myself enduring even another two years of this daily purgatory. My thoughts turn very dark and I am tempted to despair and self-destruction.

I pray every day for the strength to keep going and for a breakthrough to take place, for I find this agony so difficult to endure. 

Feeling broken on my second anniversary of chronic pain 

Exactly two years ago, life as I knew it came to an end. I went to bed on May 9, 2014 tired but excited about my sabbatical in America which was due to begin three days later.
But I noticed a pain in my lower back when I awoke on May 10. I wasn’t worried about it. I worked on my homily for the next day, which would be the last time for eight months at least, that I would be preaching in Rathgar. Then I went for my customary walk, which I was sure would iron out the pain that continued to nag at me, but by the time I got home the pain had intensified.

I cursed my luck. Imagine damaging my back right before heading off to America. It was the last thing I needed.

I got to see a doctor, a parishioner, and he filled out a prescription for me. Some anti-inflammatory medication, and I would be fine. And so off I went to Indianapolis, where I would spend the first weeks of my break, before then going to Boston College and finally to a retreat centre in the Arizona desert.

I had it all planned for months in advance. And I had worked so hard to get ready for it. I had written Mass commentaries for a whole year ahead; I had written our Christmas special in March! I had tried to make everything as smooth as I could for the guest editors who would be filling in for me in my absence. After 22 years, I would be able to enjoy time without the pressure of deadlines and budgets and keeping a small publishing house on the road.

It was going to be fun.

I flew to America on May 12, excited and as relaxed as I could be given the persistent pain in my lower back. But I was sure the pills would kick in and the pain would go away.

I was helping out in a lovely parish in downtown Indianapolis. There was so much to do and see and so many short trips out of town I had planned on making, but the pain would not go away. Instead it got worse. There are few things worse than falling ill in a country where you know few people and have no medical contacts. Eventually I found a chiropractor I could reach by bus, and after taking some x-rays, which indicated considerable wear and tear in the lower back, he promised to have me pain-free in three weeks. It would cost quite a bit, however.

I didn’t care about the money, I just wanted rid of the pain. I went to him three or four days a week. He put me on various machines and performed all sorts of manipulations, but nothing changed. The pain didn’t ease. It was getting worse, and I began to get increasingly concerned.

Finally, with the date of my Boston course drawing ever nearer, I made the decision to abandon the sabbatical and go home.

I was devastated, but I was sure that once home, my back would be swiftly repaired and I might even be able to return for the final leg of the sabbatical.

I remember the tremendous disappointment I felt back home in Dublin. I remember getting up in the middle of the night and wandering around the house, the pain preventing sleep, and shaking my head in disbelief. How could this be happening to me? And why had it to be now? I was in denial.

But denial quickly turned to frustration and then to self-pity, as every effort to treat the pain came to naught. I had four epidurals, and extensive physiotherapy. I tried acupuncture and ‘cupping.’ I went from one specialist to another, and none could help.

I remember receiving a whole series of injections into the muscles from one very prominent medic. At the end of the session, he asked me, “Do you feel better?” I shook my head and then he shook his. “There’s nothing more I can do for you,” he said, sadly. After I left his room, his nurse rushed to hold me. I was shaking and ashen and broken. “Can I get you water or something?” she asked. “A gun, if you have one,” I replied. I cried all the way home in the car that night.

And then I found hope. My doctor referred me to the man considered to be the top spinal specialist in the country. I was told that he only sees those he thinks he can help, based on his analysis of their MRI scans. So when he agreed to see me I was thrilled. Clearly, he thought he could help me. There was light at the end of the tunnel. The surgery was scheduled for May 20, 2015. The three weeks leading up to it were full of hope. I couldn’t wait to go under the knife. I couldn’t wait to be pain free after one whole year of agony.

I had the surgery. Four screws and a titanium bolt were placed in my back at L4/S1. The doc pronounced it a success. I should begin to feel better within a few weeks.

But it never happened. If anything, I felt worse, and the disappointment was tremendous. I was on more medication than ever before, I was spending longer in bed, I felt capable of doing nothing.

I began to see a counselor, and to try to practice mindfulness. I read several books on healing back pain and to read testimonies of people who had recovered from chronic pain. But nothing seemed to help me. Nothing worked.

And then a new scan showed that the screws inserted during my surgery were loose. The fusion had not healed. The surgeon recommended we do it again. And so I was full of hope once more. No wonder I still had pain with all those loose screws rattling around in my back.

The second surgery took place on November 2nd. The doc reported that no healing had taken place at all from the first op, that the bone was very brittle, and that he’d like to support the fusion by going in from the front via the abdomen. And so I had a second op on November 18th. It was tough. My blood pressure collapsed and they spent the night trying to get it back up.

I was just out of hospital when my father died unexpectedly, increasing my emotional turmoil.

Even worse, these surgeries were no more successful than the first, except that now I had seven screws instead of four. So bad was the pain that they took me back into hospital for two weeks before Christmas for pain management.

All the hope I had for the back surgeries turned to intense regret that I had them at all. So much pain, so much trauma to my body and for nothing.

The constant chronic pain has left me broken in mind and spirit as well as in body. So many days I have wept bitter tears. So many days I have given into hopelessness and despair. People have encouraged me to unite my sufferings with the sufferings of Christ and thus participate in the great mystery of salvation. But I must confess that this doesn’t help me much.

Many times in the last few months, as disappointment followed disappointment, I have considered ending it all. I cannot imagine going on for another year, not to mind the rest of my life, with this kind of pain. I am not able to endure it. I try to keep going for the sake of my mother and my family. Every day I make it through alive is one less day of pain that they would have to face.

Ready to meet my maker

Next Friday I am having yet another medical intervention to try to calm my chronic back pain. A series of Botox injections will hopefully ease the muscle spasms in my back. At least that’s the plan.

But whether it will make any difference I am not at all sure. I have had so many procedures over the pasts 18 months, so many false dawns, that I am afraid to hope anymore. I have had so many interventions, and all I have to show for it is a titanium bolt and seven useless screws. My pain is more intense now than at any time in the past and I feel broken. At this stage I feel that the life has been sucked out of me and I’m not able to endure much more.

Over the years I have known and admired people who had chronic pain. I think of a Redemptorist confrere of mine and his sister who both suffered for years with arthritic pain that left them wheelchair bound. They were always so phlegmatic, so serene in face of adversity. I don’t know how they were able to do it. I’m not as heroic or as stoical or saintly as they were. I can’t envisage spending the rest of my life like this. I know I won’t be able. 

I cling on to the hope that maybe the Botox will do something. But it’s a long, long wait until Friday.