Sharing My Story

Living a Healthy Life With Chronic Conditions

(Originally written for the leadership magazine Enrich)

Imagine an enthusiastic pastor who is a runner, a rock climber, a person who enjoys skiing, a practicer of martial arts, and loves getting out in his canoe to work on sermons ... and then having it all slip away to the point that dragging yourself out of bed before noon is a real accomplishment.  

For years I have struggled with chronic illness but it came on fast and furious in a matter of months.  

First a definition: “Hyper Eosinophilic Syndrome is an idiopathic condition (which means they don't know what, when, where or why) associated with marked peripheral eosinophilia and gastroenteritis.  ...HES involves other organs such as the heart, lungs, brain, and kidneys and generally has a progressive fatal course.” (Fauci, Harley, Roberts, cited  in Wallace and Apstein, 1997.)

 

I have been on at least 20 medications for symptoms like chronic pain and fatigue. 

To help you put yourself in my shoes, a bit of background: I just turned 46 which could well be half way along, or much further, and this year is our 25th wedding anniversary. My wife's name is Joy, and she deserves it - a missionary kid who grew up in Argentina; and I am a pastor's kid born in Alberta, raised in Kelowna. Tearing up the dirt on my motorbike, waterskiing, snow boarding and snowmobiling helped keep me out of a lot of trouble. Mostly. But that's another story. God gripped my young life and I sensed a call to serve in ministry.

Joy and I met at Summit Pacific College and became fast friends. After a few years we married and moved to Vancouver to work on my Masters degree in Theology at Regent College, UBC ('97).

We have five kids - three of which are college aged, two still in high school. The two boys have Autism and also were born with cleft lips and palates. Facing that early on in our marriage was quite the learning curve. At three months they began a series of corrective surgeries at BC Children's Hospital. The doctor did such a good job, the rather graphic video is used internationally as a teaching aid around the world.  Visits to Children's Hospital and witnessing what other families have endured have truly shaped compassion in me as a father and minister.

I had been pastoring a church plant for about a decade. At year eight I was privileged to take a good long 4-month sabbatical break to rest and work on writing; I also played. I took a skydiving course, went on a motorbike tour through B.C.'s Okanagan and then we took a big family trip to the Dominican Republic where Joy's parents are ministering. There I got do some preaching, went hiking and scuba diving reefs, ship wrecks and under-water caves. It was all tremendous. In fact, on the last day before our return flight I checked our general bank account for our budgeted trip and the bottom line read $777. I had to make a photocopy of that. It seemed to be such a 'God-thing'; a little indication that we were held in His hand. 

And then I come home to feeling symptoms like my body says it's broken. What?! The church is going with really good momentum so it's perhaps hard for me to accept the signals at first (picture this somewhere in late Spring), but getting ever harder to ignore. It was in June that I first mentioned it to a Doctor, then again as it progressed in July. We enjoyed a sunny summer break with family on the beach in Kelowna - I'm 'in' on all the playing, smiling, but for some reason hurting lots after (like a hockey player must feel in the playoffs) feeling really tired and strangely cold in my muscles all the time. That can really mess with your head! So in the Fall we started our medical hunt in earnest. I just couldn't  keep up with church week to week.  

Fast-forward through a year's worth of tests and referrals; I am on medical leave now and it's getting close to my birthday, which means I somehow made it through another Winter! What a blur. It seems my life is boringly ticking by slowly each day and yet calendar pages are flipping by as everyone else in my home goes on with regular days and weeks. I hardly know how to describe that.  

 

In October of 2004 we finally got the diagnosis of HES. I get no indication that this will be better in 6 months, not to mention a rather ominous diagnosis developing with no good remedial therapy.

I know that the process of searching out a new pastor rarely takes less than 6 months. I've never had to do this before ... and I've never seen a resignation on medical basis before, so life is quite the adventure! I readied myself for the inevitable next step of letting go.

 

God gets creative when we let him provide. Just this week half a dozen gift cards turned. up mysteriously in our mailbox. When you're on a Fixed LTD Income with 5 growing kids, that little something means so much. There's been a long list of such provisions all the way through this journey.  

 I hold on to this bible verse from Romans 8:38. 

“…In all these things we are more than conquerors through him who loved us.  For I am convinced that … neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”

After being sidelined from pastoring with worsening symptoms from HES I felt like I lost my 'voice'. I literally do go hoarse trying to sing or with extended speaking. The cramping muscle pain and fatigue have left me too weak to enjoy playing my guitar, piano or saxophone.   Walking short distances is my best effort compared to weight lifting, rock climbing and competing in martial arts just a couple of years earlier. All the energy and gifts I had been creatively using in church ministry seemed, well, useless. 

What do I do now, going from years of full-time ministry to being essentially  a 'shut-in'. Who am I? Still I have a pastor's heart. 

Fortunately, just as I was getting sick I took a course (that I intended to teach as a church outreach program) called Living A Healthy Life With Chronic Conditions. What a lifeline. Being sick for a long time truly is hard work. I have a 3" binder stuffed full with forms and records for communicating with all my doctors.

Other chronically ill people helped me realize that if I could no longer try to be what I was, especially on rounds of chemotherapy, then I should figure out who I am supposed to be now and learn to be good at that.

It was a huge swing from the outgoing, adventurous church planter. It feels like I can only move about in slow motion, as though I’m on a different planet with heavy gravity, compared to my energetic family. Or like my batteries just won't recharge. I don't know how else to put  it. 

At that point of questioning your own self-worth you hold on to bible passages like Eccl. 3:1 - "There is a season for everything, and a time to every purpose under heaven."  

 

As I struggled to cope with my ongoing illness, I began to better understand what many others challenged with chronic conditions were going through  – a common yet vicious Symptom Cycle that spirals around illness, fatigue, tension, stress, financial worry, anxiety, anger, frustration, fear, and depression. In fact, according to Canadian statistics most of us will have one or two chronic long-term illnesses in our lifetime. How many in our churches are struggling?  We never quite seem ready for that hard fact of life. That statistic virtually guarantees suffering will at the very least be in your family, if not in your own life Can you be a grace-giver to someone really down and out? It’s what the Church is all about. Not sugar-coated promises, or clever salesmanship of religion.  It's what I'm learning as I try to help others suffering. 

 

The Bible is very clear that Life has its storms. They talk of a calm that exists in the centre of a storm-cell - that is possible in our lives as well.  The outside ‘environment’ of unpredictable circumstances does not have to disturb our inner peace. The ‘storm’ is not in me – I happen to be in the storm. Despite the daily trials of chronic and painful illness that happens to be my ‘stormy time’, I seem to keep bobbing back up to the surface like a cork on the ocean. That in itself is a miracle. 

For me, daily letting go of the negatives and holding fast to blessings large and small has made all the difference. More than that, my inner spiritual life is deepening in ways I don’t fully understand. I have a stronger faith. The calmness works from the inside out. 

 

I used to preach on 'abundant life' as something that starts here, not only in eternity. There's nothing wrong with that exegesis, but my application was that we should be thriving instead of surviving. Well, after years of survival I think there is a lot to be said for a faith that can hold on. Overcoming faith is great. Everyone enjoys a victory! There is another, deeper aspect to our faith - the kind that sustains us in the trials.  I have faith in God’s character, I trust that He is just and good. I trust His purposes.

 

Perhaps the most profound prayer is of the soul which, despite a lack of understanding in the present and no longer even feeling God’s presence, still declares 'Thy will be done!, after Jesus’ own example at Gethsemane.

 

I have developed what you might call a Theology of Suffering. What happens after sick people leave yet another healing line ‘all prayed out’ and still in deep discomfort? They have tried everyone’s well-meaning suggestions, perhaps have spent all their hard earned money on extravagant treatments, hoping for the quick fix. That endevour alone could precipitate a crisis of the soul. Is there something wrong with these people that God won’t heal them? God IS for us. He IS on our side.

In our day we have almost completely forgotten that the Bible gives us a thorough model for prayer-life in the Psalms. This is the ancient prayer book of God’s People. Jesus memorized those words as a boy. Everything that anyone can feel or experience in relation to God is in these prayers, and the majority of them fall under the Lament genre: basically crying out to God in times of grievous trouble. God is present in our situation. To be human means to be in change. Our journey often swerves into wilderness wanderings. Biblically, this is a place where we are not abandoned! Our earnest call for help is answered by God alone in a manner that causes us to better appreciate that God's ways are not our ways and to marvel at "the depth of the riches of the wisdom and knowledge of God" (Rom. 11:33ff). 

God wants us gut-honest with Him. Neither flowery orations nor pious platitudes. We must leave more room for waiting on the mysterious sovereignty of God.  

 

Through all this I have done consistent journaling. For years I have been quietly hoping to publish some of my writings. I even tried reflecting on this Theology of Suffering over the years with a couple of my doctors.  One specialist surprised me recently as he reclined in his chair and pensively replied, “It sounds to me like you have already begun your PhD in Life.”

 

Ultimately it comes down to this. We look for in people what can only be found in Christ. He is the Friend that will never leave or forsake us. The burden of wisdom cannot be fairly placed on any human - spouse, family, friend, or physician, for that matter. 

 

Our role is to let go, to relinquish that false sense of control, and yield to the sovereignty of God. I cherish this time I have with the ones I love and I see more clearly my ministry to family as priority one. They mean more to me all the time! The fact that we are so close during an event that can pull families apart is yet another blessing for which we are thankful.  

In a book forward, I wrote about a survey of those aged 95+ asking what they would do over if they had the chance. 1) They would Reflect more - taking time out pensively, 2) They would Risk more - you'll never hear them say 'I am so glad I wasted my time', and 3) They would leave a Legacy - do more things that would outlive them. Hopefully you and I can live like that and minimize the regrets while maximizing the opportunities.

Somebody is reading this with a heavy load, feeling lonely and struggling perhaps with depression. Risk and reach out, I would gently urge. You are not alone in this journey: We are indeed better together. 

 

As I close, I must recognize the many gracious acts of kindness and the prevailing prayers of people in our local community, across the country and around the world. We have been sustained by love.

In summary I'd like to leave leaders with a few thoughts to ponder. Like a long-distance runner you need pace yourself. No one else will do that for you. People will take your 40 hours a week, take all you give, and simply assume you could do a little more. 

So try practicing sabbath breaks weekly and monthly. Plan long range for a career sabbatical. It will deepen and extend your ministry.  Whatever it ends up looking like just don't cram it full of work! It's primarily about letting go and resting. Pick some books to devour and write consistently. Don't plan to quit your post or job hunt or get a degree. If you are thinking about any of that, please don't call it a Sabbatical. Take a leave of absence. This is about building deeper trust with your congregation and longevity in your ministry. 

Always carve out time in your schedule for the important things first or they will automatically get crowded out. Things like devotional prayer and reading, spouse / family and spiritual friendships. 

Healthy or ill there will always be ups and downs in life, sometimes feeling like a roller coaster. Learn to expect that and ride it out with grace. You're not perfect. Quit acting like it. Just work at being authentic. All around it will affect your congregation and relationships in beautiful ways. We are all broken. 

Finally, through relaxation breathing exercises I've learned to thank God for every healthy breath we have! It truly is a gift I cherish as a spectator of busy people. 

End note: If you could use some primer ideas for a Sabbatical, Ken together with the leadership at Steveston Christian Church have created a proposal paper for planning a Sabbatical journey. Email kkutney@shaw.ca.

POEM

"Bitter-Sweet Sorrow"

Like dark silence shared with another

What is this sweet sorrow

Calm, in the centre of me

 

In the eye of the storm

When one is at last aware of Rest

Even while the questions still remain

Calm, in the centre of me

 

‘Embrace the pain’ they say

Strange, but now it comes easily

I enter a humbled place

Brokenness, without humiliation

Calm, in the centre of me

 

Like the kiss that tastes hot tears

To let us know we are not alone

This sorrow 

bitter yet sweet

Calm, in the centre of me

Rev. Kenton James Kutney