Atlas
"And the last enemy to be destroyed is death."
- Messages
- 120
- Location
- New Zealand
This past 18 or so months has been possibly the most painful in my life.
But at some point it has also become the most hopeful.
I would like to share some of how that happened, if that's OK. It's quite supernatural because my hope has been found in Christ and in his responses to me — that's why I have put this in the spirituality section.
I have cobbled it all together mostly from the journal notes I already have on my phone, so I have put it in three sections:
1. Lament
2. Rainbows
3. My Desert
---------
Right up until my ME became severe, I had been studying Christian theology. Perhaps prescient of the deep suffering that was about to come upon me, one of the last papers I took was "Theology of Suffering and Hope". There is one thing I learnt about during my studies that has been so so helpful to me, and that is the practice of lament.
Lament to me is about being real with myself and with God about the brokenness in me and around me — and handing my anguish over to him; and about crying out to ask him why all this is happening; how long must it go on; and about turning towards hope that although everything has been munted, he is all about restoration. What is broken he will restore. What is unjust he will repay and remove. What is hurting will be healed. Because "God is not willing evil into existence. He's willing evil out of existence".
And finally, lament to me is about asking for help in the midst of all this. Asking for help and comfort now, in my current situation.
I wrote the following for my Dad's birthday, which is also my brother's birthday. It is partly a personal journal-kinda lament, and it ends with a traditional style lament. I have also interspersed some lamenting prayers from some of my more painful days.
Note, it may be quite emotional... at least it was for me... just letting you know in case your energy levels are sensitive to emotion.
Take care.
---------------------------
Lament
---------------------------
Today is my Dad's and my big little brother's birthday. Oh how I genuinely love them both! How I wish I could walk to the dining room and lay my hand on my Dad's shoulder as he works on his puzzle, to wish him happy birthday. How I wish I could drive to see my amazing brother and make him a coffee and share a conversation. That's why, when I cannot do these things, or much of anything at all, I sometimes wonder "if I cannot live, am I really alive?".
I want to live, I will not lie
But cannot live, yet do not die
(This is the thought that entered my head on one of my darkest days)
And yet... I *am* alive — even though I cannot do the things I want, even though I am powerless, my inner self is being refined and renewed every morning and night by my creator; and to know him makes me feel more alive than any activity or accomplishment.
And yet... my suffering is real. On days when the sound sensitivity becomes so bad that even a clatter of a spoon or a single word from someone I love feels like a knife into my brain, what can I do? I can do nothing but pray.
In early 2021 I had just turned 30 and was exactly where I wanted to be. I thought my turbulent life might finally be starting to trend up. But ME had other plans. The relapse snuck up slowly at first; then about half way through the year it hit with full-force, and my condition rapidly spiralled downwards.
When I tried to free myself, it was like quicksand — the more I moved, the deeper I sunk over the following days and months. My ability to live was ripped away piece by piece; and for every piece I tried to take back, two more were taken. It's now been well over a year since I had to stop driving due to POTS; and despite drastically reducing my activity I continued to sink until I became completely bedbound.
In silence and in solitude the Lord has been showing me my faults — he is using this affliction to refine me and it might sound crazy but I am learning to trust him more than ever before. He has taught me that I am dependent. A dependent child is who I am, because I am nothing without energy, without mind, without strength, or without body, and these are all gifts that are sustained by him. There is only one through whom all things hold together, and only one who can create or destroy energy. He has been speaking hope into me, and answering me in ways that seem too good to be true, but too mathematically impossible to be false. He has been showing me that he is always faithful, even when I am doubtful, and he has given me confidence that he is going to answer my prayers. I am waiting for him.
But some days, like in Psalm 88, I have needed to just acknowledge the darkness of my situation for a while before I'm ready to step into hope. And when that time comes, on days like today, the practice of lament has been so helpful to me.
I still feel physically poisoned. My brain wades through a thick goop and my body punishes me for using it. The world goes on without me as I age on my bed. "But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness."
“The Lord is my portion,” says my soul, “therefore I will hope in him.”
---------------------------
Rainbows
---------------------------
It was during this time when I was continually taking this posture of lament that the Lord over and over showed me how near to me he was, and despite my situation he pulled me closer and closer with a song of his faithfulness. As part of his love song, several unbelievable things happened.
For background, he has a history of showing me rainbows right at low points in my life. Even though I have always seen rainbows as a symbol of his promises, until this happened I had still doubted it was him who had been showing me them at those low points.
So, I was feeling particularly disheartened one day in my illness. I had begun (as brain fog allowed) slowly memorizing the first half of Lamentations 3, and in particular I had been meditating on these words:
"The Lord is good to those who wait for him. To the soul who seeks him"
I had been seeking him. I had been waiting for him. I had been doing my best to trust him. But with my depressing situation I was finding it difficult to believe that God actually wanted to help me in this life.
I had recently read the story of Abraham's servant who asked God to do something to verify his promise.
So I asked Father, please show me a single rainbow if you'll promise to bring me healing, a double if you'll also promise to help me with this other thing, and a triple if you're going to give me more than I asked for.
At this point, some time around the end of June, I had not seen a single rainbow this year.
Over the next approx 10 weeks, starting about a week after I prayed, I saw 2 sets of 3 rainbows, 6 total. First was in the sky. Second was a rainbow drawing (pictured) from my 3 year old nephew Ezra. His name means "God helps". Still, I doubted it was from God. But then the third one literally formed on my sweater just as I was getting dressed. The rest also formed in my room, reflecting off the glass and plastic objects that were on my bedside table.
The first 3 were single rainbows. So he answered my prayer 1 at a time.
Then after a month (33 days according to photos) a triple appeared on my bedside table.
Then about a week later a many-many...
Then the sixth was a double, as if to say, "oh yeah, and for good measure here's the only one I haven't shown you twice over yet".
So, he answered every prayer twice over in different forms plus one I didn't imagine, and everything arrived in the perfect order...
Even after the third rainbow, I still doubted and said to myself "if another one appears now, this all must have been a coincidence". But then the fourth was the kind of triple I had been expecting when I first asked. It's like he was taking a sledgehammer to my doubt and each rainbow was him taking a swing at it to prove his steadfast love. You'd think I would have learnt my lesson after the 4th, but the last 2 I brushed off as meaningless until later when I wrote down all the ones I had seen and realized how they all fit together. That's when a feeling of astonishment and gratitude came upon me that has only ever occurred in the past when I caught the slightest glimpse of how deep the Father's love actually is for us.
I was only asking for one triple rainbow. But he said "I'm going to do abundantly more than you can ask or imagine" (Eph 3:20) and in doing so he shattered my doubt. (For some time I had been doubting whether God actually wanted to be my present help in this life; I had hope for future life in a restored universe, but not much hope for this life).
I'm a scientist and have been a skeptic. But the odds of all this happening by random chance are so miniscule they may as well be impossible. My faith might be smaller than a mustard seed, but it's enough to cover that gap. He had sated me with wormwood, and I had forgotten what happiness is. But now he has sated me with rainbows and my heart can't take it any longer. I have to let go of the doubt and trust him.
I had asked for faith,
I had asked for a promise,
I had asked for transformation,
and for peace.
And he gave me them all.
I may still be bedridden with no end in sight, but I am trusting him now.
You will keep in perfect peace
those whose minds are steadfast,
because they trust in you.
Trust in the Lord forever,
for the Lord God is an everlasting Rock.
(Isaiah 26:3-4)
---------------------------
My Desert
---------------------------
While I was writing this there had been 2 more complex rainbows and then a friend sent me the 9th just before I finished. But I had already written almost everything out, so did not include them.
But, for extra context, during the time of the second set of rainbows I had been doing a 40 day rest from phone activity, not only to help me rest better but because I had remembered Christine Caine's message "don't spend 40 years in the desert when you could cross it in 40 days", referring to the Israelites' journey from Egypt that ended up taking 40 years because they needed that much time to learn how to stop relying on themselves and trust God. Anyway, I thought... maybe God wants to use this "desert" to change me for the better, so if I take time in the silence to focus on prayer and asking him to reveal my faults and transform them, maybe I'll be able to cross this desert faster. And oh boy did he reveal so many faults... The biggest one that kept popping up was some arrogance and pride that I had buried deep and didn't know how to deal with. So, to be transformed, for each of my unhelpful thought patterns, I asked for an antidote thought pattern. And he gave me antidotes for every single one! Now, some of the bad habits keep popping up, but since I wrote all the antidotes down, I now have weapons against them. God is so good! At the end of that 40 days that's when I asked for him to transform my fear into peace. And the day after it finished my Mum (who is taking care of me) messaged me Isaiah 26:3-4.
So, why this is relevant is that the first set of 3 rainbows happened before that 40 days, the second happened inside the 40 days, and the third happened after. If you're a numbers person like me you might have noticed the trinitarian symbolism...
3 before my "desert"
3 in my "desert"
3 after my "desert"
This immediately made me think of the scripture:
"You hem me in, behind and before, and lay your hand upon me."
Psalm 139:5 ESV
God is behind us.
God is with us.
God goes before us.
---------
---------
---------
---------
---------
Thanks for reading my experiences of suffering and hope.
May the Father bless us all together and bring us all relief from this horrible disease.
That is my continued prayer.
He upholds the cause of the oppressed...
The LORD sets prisoners free,
Psalm 146:7 NIV
I have been praying for breakthroughs, and I believe that breakthroughs are being made as we speak.
I pray that for every one of my fellow sufferers, he will do what is described in that song:
He makes beauty from ashes
Strength from fear
Gladness from mourning
Peace from despair
But at some point it has also become the most hopeful.
I would like to share some of how that happened, if that's OK. It's quite supernatural because my hope has been found in Christ and in his responses to me — that's why I have put this in the spirituality section.
I have cobbled it all together mostly from the journal notes I already have on my phone, so I have put it in three sections:
1. Lament
2. Rainbows
3. My Desert
---------
Right up until my ME became severe, I had been studying Christian theology. Perhaps prescient of the deep suffering that was about to come upon me, one of the last papers I took was "Theology of Suffering and Hope". There is one thing I learnt about during my studies that has been so so helpful to me, and that is the practice of lament.
Lament to me is about being real with myself and with God about the brokenness in me and around me — and handing my anguish over to him; and about crying out to ask him why all this is happening; how long must it go on; and about turning towards hope that although everything has been munted, he is all about restoration. What is broken he will restore. What is unjust he will repay and remove. What is hurting will be healed. Because "God is not willing evil into existence. He's willing evil out of existence".
And finally, lament to me is about asking for help in the midst of all this. Asking for help and comfort now, in my current situation.
I wrote the following for my Dad's birthday, which is also my brother's birthday. It is partly a personal journal-kinda lament, and it ends with a traditional style lament. I have also interspersed some lamenting prayers from some of my more painful days.
Note, it may be quite emotional... at least it was for me... just letting you know in case your energy levels are sensitive to emotion.
Take care.
---------------------------
Lament
---------------------------
Today is my Dad's and my big little brother's birthday. Oh how I genuinely love them both! How I wish I could walk to the dining room and lay my hand on my Dad's shoulder as he works on his puzzle, to wish him happy birthday. How I wish I could drive to see my amazing brother and make him a coffee and share a conversation. That's why, when I cannot do these things, or much of anything at all, I sometimes wonder "if I cannot live, am I really alive?".
I want to live, I will not lie
But cannot live, yet do not die
(This is the thought that entered my head on one of my darkest days)
And yet... I *am* alive — even though I cannot do the things I want, even though I am powerless, my inner self is being refined and renewed every morning and night by my creator; and to know him makes me feel more alive than any activity or accomplishment.
And yet... my suffering is real. On days when the sound sensitivity becomes so bad that even a clatter of a spoon or a single word from someone I love feels like a knife into my brain, what can I do? I can do nothing but pray.
In early 2021 I had just turned 30 and was exactly where I wanted to be. I thought my turbulent life might finally be starting to trend up. But ME had other plans. The relapse snuck up slowly at first; then about half way through the year it hit with full-force, and my condition rapidly spiralled downwards.
When I tried to free myself, it was like quicksand — the more I moved, the deeper I sunk over the following days and months. My ability to live was ripped away piece by piece; and for every piece I tried to take back, two more were taken. It's now been well over a year since I had to stop driving due to POTS; and despite drastically reducing my activity I continued to sink until I became completely bedbound.
In silence and in solitude the Lord has been showing me my faults — he is using this affliction to refine me and it might sound crazy but I am learning to trust him more than ever before. He has taught me that I am dependent. A dependent child is who I am, because I am nothing without energy, without mind, without strength, or without body, and these are all gifts that are sustained by him. There is only one through whom all things hold together, and only one who can create or destroy energy. He has been speaking hope into me, and answering me in ways that seem too good to be true, but too mathematically impossible to be false. He has been showing me that he is always faithful, even when I am doubtful, and he has given me confidence that he is going to answer my prayers. I am waiting for him.
But some days, like in Psalm 88, I have needed to just acknowledge the darkness of my situation for a while before I'm ready to step into hope. And when that time comes, on days like today, the practice of lament has been so helpful to me.
I still feel physically poisoned. My brain wades through a thick goop and my body punishes me for using it. The world goes on without me as I age on my bed. "But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness."
“The Lord is my portion,” says my soul, “therefore I will hope in him.”
---------------------------
Rainbows
---------------------------
It was during this time when I was continually taking this posture of lament that the Lord over and over showed me how near to me he was, and despite my situation he pulled me closer and closer with a song of his faithfulness. As part of his love song, several unbelievable things happened.
For background, he has a history of showing me rainbows right at low points in my life. Even though I have always seen rainbows as a symbol of his promises, until this happened I had still doubted it was him who had been showing me them at those low points.
So, I was feeling particularly disheartened one day in my illness. I had begun (as brain fog allowed) slowly memorizing the first half of Lamentations 3, and in particular I had been meditating on these words:
"The Lord is good to those who wait for him. To the soul who seeks him"
I had been seeking him. I had been waiting for him. I had been doing my best to trust him. But with my depressing situation I was finding it difficult to believe that God actually wanted to help me in this life.
I had recently read the story of Abraham's servant who asked God to do something to verify his promise.
So I asked Father, please show me a single rainbow if you'll promise to bring me healing, a double if you'll also promise to help me with this other thing, and a triple if you're going to give me more than I asked for.
At this point, some time around the end of June, I had not seen a single rainbow this year.
Over the next approx 10 weeks, starting about a week after I prayed, I saw 2 sets of 3 rainbows, 6 total. First was in the sky. Second was a rainbow drawing (pictured) from my 3 year old nephew Ezra. His name means "God helps". Still, I doubted it was from God. But then the third one literally formed on my sweater just as I was getting dressed. The rest also formed in my room, reflecting off the glass and plastic objects that were on my bedside table.
The first 3 were single rainbows. So he answered my prayer 1 at a time.
Then after a month (33 days according to photos) a triple appeared on my bedside table.
Then about a week later a many-many...
Then the sixth was a double, as if to say, "oh yeah, and for good measure here's the only one I haven't shown you twice over yet".
So, he answered every prayer twice over in different forms plus one I didn't imagine, and everything arrived in the perfect order...
Even after the third rainbow, I still doubted and said to myself "if another one appears now, this all must have been a coincidence". But then the fourth was the kind of triple I had been expecting when I first asked. It's like he was taking a sledgehammer to my doubt and each rainbow was him taking a swing at it to prove his steadfast love. You'd think I would have learnt my lesson after the 4th, but the last 2 I brushed off as meaningless until later when I wrote down all the ones I had seen and realized how they all fit together. That's when a feeling of astonishment and gratitude came upon me that has only ever occurred in the past when I caught the slightest glimpse of how deep the Father's love actually is for us.
I was only asking for one triple rainbow. But he said "I'm going to do abundantly more than you can ask or imagine" (Eph 3:20) and in doing so he shattered my doubt. (For some time I had been doubting whether God actually wanted to be my present help in this life; I had hope for future life in a restored universe, but not much hope for this life).
I'm a scientist and have been a skeptic. But the odds of all this happening by random chance are so miniscule they may as well be impossible. My faith might be smaller than a mustard seed, but it's enough to cover that gap. He had sated me with wormwood, and I had forgotten what happiness is. But now he has sated me with rainbows and my heart can't take it any longer. I have to let go of the doubt and trust him.
I had asked for faith,
I had asked for a promise,
I had asked for transformation,
and for peace.
And he gave me them all.
I may still be bedridden with no end in sight, but I am trusting him now.
You will keep in perfect peace
those whose minds are steadfast,
because they trust in you.
Trust in the Lord forever,
for the Lord God is an everlasting Rock.
(Isaiah 26:3-4)
---------------------------
My Desert
---------------------------
While I was writing this there had been 2 more complex rainbows and then a friend sent me the 9th just before I finished. But I had already written almost everything out, so did not include them.
But, for extra context, during the time of the second set of rainbows I had been doing a 40 day rest from phone activity, not only to help me rest better but because I had remembered Christine Caine's message "don't spend 40 years in the desert when you could cross it in 40 days", referring to the Israelites' journey from Egypt that ended up taking 40 years because they needed that much time to learn how to stop relying on themselves and trust God. Anyway, I thought... maybe God wants to use this "desert" to change me for the better, so if I take time in the silence to focus on prayer and asking him to reveal my faults and transform them, maybe I'll be able to cross this desert faster. And oh boy did he reveal so many faults... The biggest one that kept popping up was some arrogance and pride that I had buried deep and didn't know how to deal with. So, to be transformed, for each of my unhelpful thought patterns, I asked for an antidote thought pattern. And he gave me antidotes for every single one! Now, some of the bad habits keep popping up, but since I wrote all the antidotes down, I now have weapons against them. God is so good! At the end of that 40 days that's when I asked for him to transform my fear into peace. And the day after it finished my Mum (who is taking care of me) messaged me Isaiah 26:3-4.
So, why this is relevant is that the first set of 3 rainbows happened before that 40 days, the second happened inside the 40 days, and the third happened after. If you're a numbers person like me you might have noticed the trinitarian symbolism...
3 before my "desert"
3 in my "desert"
3 after my "desert"
This immediately made me think of the scripture:
"You hem me in, behind and before, and lay your hand upon me."
Psalm 139:5 ESV
God is behind us.
God is with us.
God goes before us.
---------
---------
---------
---------
---------
---------
Thanks for reading my experiences of suffering and hope.
May the Father bless us all together and bring us all relief from this horrible disease.
That is my continued prayer.
He upholds the cause of the oppressed...
The LORD sets prisoners free,
Psalm 146:7 NIV
I have been praying for breakthroughs, and I believe that breakthroughs are being made as we speak.
I pray that for every one of my fellow sufferers, he will do what is described in that song:
He makes beauty from ashes
Strength from fear
Gladness from mourning
Peace from despair
Last edited:
- now I just try to be an open vessel with no particular agenda.