I want to end my pain

I never thought I’d end up like this. There’s longevity in my family. I have four aunts who are aged over 90 (two on each side) and I always hoped/assumed that, as long as I looked after myself, I’d make it into old age too. I don’t think that any more.

We never know what’s ahead of us, but I never would have imagined that, just into my 50s, I’d be crippled with pain, for which there seems to be no cure. I never thought I’d end up like this.

For more than two years I have been suffering, and despite all manner of interventions, I am worse than I have ever been, broken and in constant tears.

The doctor told me that I am on the strongest pain meds he can safely prescribe, yet those meds are almost totally ineffective. Two nights ago, after watching a football match (and thank God for the distraction of the Euros) I went to take my meds, only to be horrified to realise that I had taken them before the match. They had made no impact on my pain. 

I am supposed to be getting a spinal cord stimulator, but I cannot get any dates from the hospital for when this will happen, and there’s no guarantee it will make any difference. 

Our big annual novena begins here in Limerick tomorrow. My colleagues are all looking forward to it, but I am not. Up until last year, I used to be actively involved in planning the themes for our novenas, I used to write the booklet for each year, and was regularly one of the main preachers. Now I am on the periphery – pain-riddled, lost and broken.

I want my pain to end. I want to be free of it. There is no worse feeling than waking up early in the morning with your back on fire, and realising that there’s another miserable day ahead.

A couple of weeks ago, I had a few days of relative respite but what followed is worse than what I suffered before. It’s not worth living in agony for months at a time in hope of a few days’ respite in the future.

The only reason I have been determined to hang on all along is for the sake of my mother, but my strength is running low now and my will is ebbing. I don’t want to die, but I don’t want to go on living like this. Death is inviting. I keep thinking of the peace it would bring. Unless there is a miracle, I won’t see many more birthdays.

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.

Upsetting my mother is what upsets me most

I have always been a hopeless actor and have never been able to disguise how I feel. One look at me and you know how I’m doing that day.

But you don’t have to see me to know how I am. My voice is a giveaway too, certainly to my mother. Every day I phone her at a prearranged time, and even when I try to sound chirpy and cheerful, as if the pain isn’t killing me that day, she knows straight away how I really am. She can tell immediately whether I’m having a good or bad day. 

I hate that, because I hate upsetting her. Many days I haven’t wanted to make that phone call because it ends up with the two of us in tears. My mother has enough on her plate without my pain adding to hers.  

It’s bad enough that chronic pain has consumed my life for the past two years, but I hate how it impacts on others too; above all, how it impacts on my mother.

I wish I was a better actor or, better still, that the pain would ease. Then I wouldn’t have to dread phoning her on my very painful days, like the one I’m having today.

Things I used to take for granted

Chronic pain disrupts your life. In fact, it takes it over. We don’t appreciate what we have until it’s gone. Here are some of the things I used to take for granted but not any more:

* Putting on my socks and shoes

* Tying my laces

* Using the bathroom without difficulty

* Driving long distances

* Genuflecting

* Taking no medication

* Sleeping with ease

* Working long hours

* Throwing myself carelessly onto a sofa

* Not having to look always around for the least uncomfortable chair

* Having a casual football game with my nephews and nieces

* Hill walking

* Planning a holiday

* Sleeping-in without discomfort

* Spending late nights watching tv or working or in the pub

* Sitting at a desk

* Not worrying every day about my future

Make sure to appreciate even the simple things, because you never know what tomorrow may bring.

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.

Could we really continue to feel pain after death?

A medic said something to me the other day that really made me stop and think. I was talking about my pain and how I could understand why some people would choose to die rather than live with constant chronic pain. The medic’s reply went something like: “But we don’t know what happens on the other side. We don’t know if the pain ends once you die.”

I was taken aback. Could what he said be true? Could it really be that your chronic pain would remain even after you had breathed your last? That one’s soul or spirit or life force would continue to experience suffering even after the physical body was no more? Maybe that’s what Hell is, but I can imagine nothing more unjust or wrong.

When I told somebody what the medic had said, that person came up with an interesting analogy that also gave me pause for thought. Why do some people experience phantom pain in a limb that has been amputated? The limb isn’t part of the body any more, yet the person feels terrible pain where the limb used to be. Why is that? And might the same thing happen on a larger scale after an aching body breathes its last?

It’s too horrific to contemplate. And if there is a creator, as I believe there to be, why would a creator punish anyone in that cruel way? Why should I continue to suffer after death, when, through no fault of my own, I have already suffered so much in life? It goes against every concept of justice and decency. It goes against any notion of a loving God. I’d rather that there was no afterlife than think I would not be allowed to Rest in Peace.

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.