Tag Archives: Motor Neurone Disease

Farewell letter to Kirsty

Kia ora, e hoa!
Hello my friend

No reprieve, no remission, no cure and…. no miraculous healing.

Three years from diagnosis, you die from Motor Neurone Disease (MND). If there is a bright side to your suffering this monstrous illness, it is you outlived your six-month prognosis. As selfish as this sounds, given the vicious nature of MND, I am grateful for the extra couple of years of having you this side of my life.

Unlike me, you were never troubled by God. This both irked and inspired me. When I think of you now Kirsty, it is your faith that drenches my thought. Your absolute, firm, and unwavering belief in a loving God. And I must admit I was, at times, annoyed at your unshakeable faith. I expected you to rant and rave at this supposedly loving God who seemed to be standing by and doing nothing as you endured the agonising steps of MND. Compared to you, my faith resembled the life of a gnat the way it jumped all over the place – I long to rest in the absolute sureness of God’s love, and I envy your ability to completely accept His fiery love for you..  

Why does God answer yes to some prayers and no to others? Why does God miraculously heal some people and not others? You will know the answer to this now Kirsty – but I don’t know. God tells us to ask, and it will be given to us (Matthew 7:7). But God did not physically heal you Kirsty even though we asked. There was no miraculous physical healing despite the hundreds of prayers and rituals, held nationally and internationally by obedient Christians, for this very purpose. You did not leap from the bed dancing, whirling, and twirling, around the room. In all my years of spiritual journeying, I have never witnessed a physical healing. Although there was a part of me that desperately hoped you would be healed, I did not believe it would really happen.

Religious gospel advocates will raise an eyebrow in an, ‘Oh ye of little faith,’ kind of way at my disbelief. They will say lack of faith is the reason God did not answer my prayers. I need to ‘do’ this and ‘be’ that. Try a little harder. I am not good enough. Subtle messaging of this nature is incredibly bruising to the spirit. Nothing loving about this. There are many of us out there with bruised and damaged souls tainted by religion. And you understood this Kirsty. We discussed how important it was for the church to re-think the messaging around God.

Love has been ‘trodden down under religious mores’, you said, and I laughed at your phrasing. But yes, God and religion are difficult to untangle because when we merge God with religion, we are in danger of extinguishing the real message of God – the message of love. The message you longed for everyone to know – love is the by-product of God, not theology. That there is nothing, we need to do, or be, to experience God’s love. God’s pure unadulterated, unfettered, untamed love is free for everyone.

“Living or dying, being spared or being tortured, being delivered in this life or the next is not an indicator of God’s love for us or the measure of our faith. Nothing can separate us from God’s love, and our future is determined by what he knows is best for us (Romans 8:28, 35–39).

Watching you struggle with your illness was a stark reminder that God’s love is not a magic potion exempting us from adversity. Fear, despair, helplessness, powerlessness, pain, and loneliness – you experienced every single one of these feelings and emotions. I am reading the words you wrote, and my heart bleeds a little at the agony in your words.

“I know what it is to feel so scared and kicked in the gut that you don’t know how to go on. There is nothing left in the tank—just fear and disappointment. I live with the shadow of overwhelming dread every moment of every day. It is trying to cut off my air supply.

I do not really HAVE to take him at his word when life is rosy. I have excess resources to cope with life’s bumps and bruises then. But right now I am in absolute deficit. Motor Neurone Disease does that to its victims.

But it is now Jesus invites me to take him at his word.

As the offerings of life became slim pickings, you nestled into words of love, of Gods promises, wrapping them around you, protecting yourself from the brutality of your inevitable outcome. Body riddled and decimated, your eyes would light up, and you would get that ‘glow’. There is no mistaking real joy. Faked joy looks manic. True joy is stillness, is light and It shines. God’s love radiated through you Kirsty. How could you be so ill, yet look so alive, we all asked ourselves.

What a waste of an evangelical heart where you are now Kirsty. Talk about ‘preaching to the converted’!
I remember in one of our conversations you told me about how you stood on street corners in Rotorua speaking about Jesus. You invited those who listened to open their hearts to His love. I was aghast you would do this, and a little envious. I remembered a time, many moons ago, when this too was my passion. You talked with such passion about the longing and hopelessness in the eyes of lost young people. How no one had ever told them the love story of God.

We cannot find refuge from pain and remain filled with hope anywhere else than in the presence of God. The hope God gives us is powerful and effective. Everything man comes up with, just can’t go the distance you told me.

“His hope keeps my head up and my smile shining in the middle of a death sentence. Do you realise how valuable this is? Do you realise how desperately the world needs to hear about this? In an age of epidemic anxiety, skyrocketing suicides and unprecedented environmental instability, hope is what is needed. And we know where to find it.”

I don’t have your courage, but I do want to honour your soul one last time. So here is a personal invitation to each of you who are reading this piece.

What does it take to know and receive God’s love, to be in a personal relationship with God? Are you curious about God? If you are feeling unloved, unworthy, dirty, hopeless, worthless, or insignificant – then this invitation is for you. If you are feeling successful, accomplished, confident and well-liked – then this invitation is also for you. I invite you to ask God into your life. You don’t need fancy words. There is no right or wrong way of asking. God’s love is not curtailed by language, culture, or religion. Just ask, Seek Him.

Haere rā e hoa
Farewell my friend



Hopelessness … why not try God?

The only yellow flower growing out of parched, cracked soil.

The ‘wait’, every damn second of the ‘wait’, is consumed with survival, yet survival, is the one thing her Motor Neurone Disease (MND) cannot give her.

With her days numbered my visits with Kirsty are much quieter. Our conversation more intermittent as she rests from the effort of trying to live.  And while the disease continues to wreak havoc on every muscle in her body, despair and hopelessness also hover in the background. Like vultures. Persistent in their quest to ravage her soul.

The dictionary describes hopelessness as an emotion characterized by a lack of hope, optimism, and passion. From my perspective, as a bystander to my friends’ illness, the English language completely lacks words to describe the intensity of emotions encircling the dark, shadowy wasteland of this thing called ‘hopelessness’.  Fear, despair, helplessness, powerlessness, pain, loneliness, and ‘I feel so useless’, are words Kirsty has used at various times during my visits as she confronts her death – a death forced upon someone wanting to live.

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My friend Kirsty is dying

There will be no reprieve, no remission and no cure. The medical profession describe it as Motor Neurone Disease (MND). For two years now, this ogre of a disease has ransacked Kirsty’s body, causing chaos as it plunders and pillages, weakening and wasting all her muscles. I liken it to a home invasion; when all you can do is watch as someone violently strips your home of all its precious belongings.  Motor neurone disease is a progressive wasting and weakness of muscles responsible for speech, chewing and swallowing. Kirsty lost the ability to talk, cough, eat and swallow in the early stages of the disease. Her gait is now a lurching stagger and her head too heavy to hold up.  Motor neurone disease is fatal. Kirsty can do nothing but watch and wait, fully conscious of what is happening, for her end to come. Even her family of doctors, one a prominent Neurosurgeon, are powerless to offer lifesaving intervention – because there is none to offer.

But I don’t want this article to be about MND. This article is about the soul – mine, yours and especially Kirsty’s.  Does MND leave the soul alone. No!  Not even the soul has a free ‘get out of jail’ card.  MND taunts with power, boasts with its relentless destruction of the body. ‘Where’s your God now,’ it scoffs. But with the help of voice assist technology and some rather hilarious miming, I can tell you, Kirsty’s soul is alive, alight and very much on fire. Much, much more alive than the ravages of the disease. You do not see the illness when you talk with Kirsty. Her love for her God, her unwavering faith and the sureness of God’s love for her, stirs something in you. ‘What’? I hear you say. ‘If this God is so loving why the disease?’ ‘Why doesn’t God just heal her?’.  Good questions.  Kirsty and I touch on this from time to time, especially on the topic of healing.

As Christians we are taught and told of the miracles of healing the sick and raising the dead. Just pray and believe they said.  As a young Christian I believed this implicitly. But as I traversed the highs and lows of my faith, I began questioning. The multiplication of the loaves and the fishes, the blind to see, the lame to walk, bringing the dead to life, did they really happen and, if they did, is there any real, fail safe evidence that physical healing is happening now?  Will God answer my prayer and heal Kirsty? And if God doesn’t heal Kirsty, what does this say about God? What does it say about me? What does it say about Kirsty?  There had to be something we’re missing I mused.  The first part of the answer came from Kirsty herself.  I have reprinted it here.

Heaven or Healing?

It wasn’t so long ago that I had strong opinions about healing. I held a gritty assumption that healing was the rightful expectation of the believer. With sufficient faith and power-packed Scriptures, Satan would be disarmed, and God would triumph.

And then I got MND. I was the one needing healing.

As I faced this giant, I found that my thinking had changed. My growing understanding of God and deepening relationship with him had altered my perspective on the matter of healing. Also relevant was watching some mighty believers struck down by ‘untimely’ deaths.

Maybe there was no formula after all … and no guarantee. Maybe insufficient faith was not the culprit when healing did not happen? An element of divine mystery seemed so apparent.

From diagnosis I experienced a strong faith inside me. It was not faith explicitly for my healing, though there has never been an iota of doubt that my God heals. It was a faith that my Beloved held me securely in his hands and he was ordering the path before me. He called me to trust him with the unknown, with the fearsome.

As the months have gone by with MND’s unrelenting assault on my body, that faith has never wavered. His pleasure over me is real, his presence wrapped around me is strong and sweet.

Jesus the Immanuel … God with us … God with me. I gave him permission to have his way with my life, no matter what that looked like. I loved him so much that I just wanted him to be glorified – whether by healing me and letting me testify, or by taking me home. My real home. I trust in his wisdom and kindness.

So that is where is I am positioned this day. Almost overwhelmed by the ravages of MND but peacefully held. I would have it no other way. Hallelujah!

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. Psalm 73:26 NLT.

What an inspiring piece. This issue of physical healing is still a mystery to Kirsty.  She, me and we, do not have the answers to physical healing. But even though she is, as she says, ‘… almost overwhelmed by the ravages of MND’, Kirsty’s faith in God’s love for her, never wavers. And although I want, pray, cajole,  and demand, Kirsty be physically healed, God has been silent on the issue.  But God is bigger than our demands, expectations and perceptions – that’s the lesson I get from Kirsty’s writing.  She never stops seeking and searching to know her God better.  I love this about her.

In an earlier blog, I asked the question, ‘What if everything you perceive God to be is a lie?’.  It’s a thought-provoking question: It nudges, irks and challenges our ego. This is what it means to search and seek. It’s a question that excludes no-one – a God question that includes the atheist to the most ‘devout’.  A question daring us to let go of our perceptions of God. A question worth going back to time and time again because of the potential to discover new and greater possibilities of God’s love for us, every time we ask. This is the essence of Kirsty’s writing.

Whenever I visit Kirsty, I always hope I may be of some comfort to her as she faces the day to day grind of MND.  But exactly the opposite happens. I always leave with this weird feeling that Kirsty has comforted me. That my soul has been gently guided back onto the right track, as if I had been lost, and didn’t realise.   In our last conversation she was a bit down, “I just feel sitting here all day, I’m not contributing to anything,” she said. Well, I want my friend to know there is no bigger job than the work of contributing to the soul. Kirsty, you do that in bucket loads!

If you would like to follow Kirsty’s as she writes about her journey with God and MND you can search for her on Facebook – Prayers  for Kirsty.

 

 

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