These past 6 weeks have been really tough. Probably the toughest in my life so far.
I’m not saying that to be dramatic, I just want you to know where I am coming from as I write this.
I also know there are so many people (some of whom may even be reading this) that have been through and are going through much worse than I have/am. (If that is you I am literally in awe of you – You are a miracle!)
But I thought I would write this about my experience and what I have learnt, what I am still learning and what I am still trying to figure out, in the hopes that it may help someone else and at least make them feel a little less alone.
6 weeks ago I had magnum decompression surgery because of a Chiari Malformation in my brain. A Chiari Malformation means that my skull is slightly too small for my brain (obviously because my brain is huge and not because I just have a teeny tiny head…or not) and the bottom part (weirdly called the brain’s “tonsils” – fun fact) was being squished against the top of my spinal cord.
Essentially the surgery involved cutting a hole in my skull to make some extra room for the both, as well as making the membrane of my brain bigger.
It was simple brain surgery (if that’s even a thing?), with a 6-8week recovery period. And although I was scared, I had enlisted the prayers of everyone I knew and went into the surgery confident that God would protect me and I would heal quickly. I was convinced that although there would be suffering during the healing period, none of the “small risks” that the doctors had warned me about would prevail because we had fervently prayed against them. I was even convinced (and I’m a little ashamed to admit it) that within a couple of weeks I would be almost back to normal!
We’d prayed as a church, the elders had prayed, I had prayed, my husband had prayed, my family had prayed, people at work had prayed…the list goes on. I was covered in prayer and I was confident and full of faith.
I came out of my surgery on 23rd June and according to the surgeons, everything had gone really well. There was more ‘congestion’ in there than they were expecting but it had all been carried out as planned with no issues – thank God! As predicted I was in hospital for over a week and during that time I was in a lot of pain. And I mean A LOT. But I was ready for that, I was expecting it even, and with the painkillers I could cope, I could manage conversations and I even managed to make a few jokes. I was confident that God had me covered and that this was just going to be a few weeks and then I would be well on my way to normality.
Before I left the hospital, because the head pain became worse and I started to be quite sick, the doctors decided to do a CT scan to check that everything was ok. It turns out that there was some fluid build up in my head that wasn’t “inconsistent with the surgery” but was likely causing the problems. However I was assured that this was usually reabsorbed naturally and the pain and sickness would disappear with it. So 10 days after my surgery, I was discharged.
I was thrilled to be going home!
Then, just 3 days later I ended up back in hospital (this time my local hospital’s A&E) with severe head pains and vomiting (from both ends if you know what I mean…). It was horrible. The pain that was supposed to be subsiding was just getting worse and worse. The anti-sickness medication that I had been given was doing nothing to stop the vomiting and the morphine that I was on was barely scratching the surface. They re-CT’d my head and discovered that the fluid was still building up and this time there was also a small bleed in my brain.
After discussing this with my consultant in London, and getting the sickness under control, they decided to discharge me again with the hopes that this would still be naturally reabsorbed by my body and that the symptoms would then finally improve.
Nope. Although again with painkillers, anti-sickness and lots of bed rest the pain was kept under control for a while, a week later, I woke up early hours of the morning in excruciating head pain (shout out to my poor husband Jason who has been amazing through the entire process, despite being continually woken up in the night with me screaming!).
The pains weren’t entirely new, just more frequent, so for about 4 hours I woke up every 15 minutes screaming in agony. I had read online that dehydration during the recovery process could cause pain so every time I woke up I would drink some water. I was scared because I thought I might have done this to myself by not drinking enough fluids.
But then it happened.
I woke up at about 7am and the vomiting started. It felt like it was never ever going to stop. My husband wanted to rush me straight to A&E but I was so exhausted (not to mention naked because it was so hot), and after the last time I thought it was just a part of the natural healing process, so I refused to go straight away. (If I’m honest I think pride kept me from going in case they just discharged me again). So I promised him that if I was sick again, we’d go straight there.
It turns out a few hours later, I was sick again. Very sick. Once it had stopped, off we went to A&E. By this point I was getting angry. I was angry at God for not protecting me from this and allowing me to go through this pain. I was angry that he didn’t seem to be answering any of my prayers about this (or anyone else’s for that matter!). I was angry because it felt like he was ignoring me, or that he just wasn’t there. I was angry because in my head it was 3 weeks in and I should be feeling better by now. It didn’t seem fair.
I had another CT scan. And more doctors sticking me with needles, taking blood and giving me IV fluids. I was continually having the head pains every 15 minutes or so and I couldn’t stop being sick. Because I was exhausted I would fall to sleep, but as I did my breathing would shallow and the pain would hit and wake me up again. I didn’t sleep. I mean at all. It was horrific.
By the next morning I hadn’t slept for over 24 hours and I wasn’t any better. The pains continued, regular as clockwork. I wanted to go back home. I just wanted to get better. But that wasn’t happening. After a long (incredibly hot) day, they decided that there may be something more serious wrong and they would transfer me back to London.
I was devastated. I broke down and I cried my eyes out. I’d had enough.
I felt like God was nowhere in this – if he was a good God who loved me then how could he let this happen to someone who loved him? It felt like he was just watching this happen and ignoring me. What was he doing??
And yet even as I thought this, somehow I knew he still was good and that he still was there. A worship song hit my brain.
“God is fighting for us, God is on our side, He has overcome, yes He has overcome. We will not be shaken, we will not be moved. Jesus you are here.”
Jason and I went in the ambulance to the hospital in London – we prayed and worshipped the whole way. I was sobbing and struggled to get a lot of the word’s out but as I sang I felt my strength improving and my faith rising. I wasn’t sick or in pain for that whole journey. The truths of the goodness of God in those worship songs flooded my soul and even though it did nothing to change my situation, it gave me some much needed peace.
At around 2am I arrived on my new ward. It was so beautifully cold! They had air conditioning and I felt immediately better – I said goodbye to Jason and I settled down for a sleep.
But that didn’t happen. As before, each time I would fall to sleep, I was again immediately woken up by excruciating head pain. You know when they ask in hospital for you to rate your pain on a scale from 1-10, and if you’re anything like me you hedge you bets and pick a 6 or 7 because you aren’t really sure what a 10 would be? There was no doubt in my mind, this pain was a 10. And then some. It felt like my head was going to explode!
Note: If anyone sharing my ward with me for that first night ever ends up reading this, please accept my sincerest apologies for keeping you awake.
I screamed. I sobbed uncontrollably. I was sick. In hit that call button so many times, even though they had already told me that the doctor hadn’t prescribed any painkillers for me so I would have to wait for them to get there in the morning.
That was without a doubt the worst night of my life. I will never forget it.
The next day, I was told I needed emergency surgery to put a shunt in my brain to drain the fluid for me. That fluid build up – it wasn’t going away on its own. I was completely shattered. This was the thing we had all been praying against the most. It means that I can’t drive for 6 months because of an epilepsy risk and it meant them opening up my head again! The recovery would start all over again!
It was at this point, after 3 days of almost no sleep, constant pain and vomiting (I hadn’t eaten for 4 days. I wasn’t even sure there was anything but my my stomach to come up now!) and another operation looming, that I gave up. I stopped caring.
I know that’s a ridiculous thing to say and I’m sure deep down I did still care but it was like I couldn’t bear feeling anymore. I didn’t want to hope and be disappointed again. I just let things happen around me and my brain felt empty (ironically).
I am not proud of it but it was at this point to that I stopped asking God to heal me. It felt pointless to even try and I just decided that what was going to happen would happen and there was nothing I could do about it.
I remember lying in the MRI scan (which lasted an hour by the way!) and telling God that if this was the end could he make it quick, because I couldn’t take anymore. But if he did, I was pretty sure that my husband would have something to say about it! I felt defeated.
I thought I was going to die. But I knew that if I did, my eternity was with him and I felt strangely peaceful.
If any of you reading this are feeling defeated, please know that God is for you and not against you. He is with you right now and if you put your trust in him, he will see you through, no matter the outcome. He is a good God and a God of love and whatever is happening, he loves you.
I didn’t die. I had the surgery and everything went well. I woke up the next day and my head didn’t hurt! And (thanks to the anaesthetics) I’d had some much needed sleep! Everything felt better.
Well everything except for my right arm. I have no idea why, and the doctors are still stumped, but when I woke from surgery number two I couldn’t move the top of my right arm. No matter how hard I tried.
But I felt really good. I was eating (for the first time in forever), the head pains had gone, I was no longer sick and I was fully hydrated! It was wonderful.
But things didn’t stay that way. Wednesday I started to go down hill. I also ended up with something called PAN (periodic alternating nystagmus – there’s one for you to google) which affected my vision and made it difficult to move around without falling over.
On Thursday, the head pains and sickness made an unwelcome return. And I still couldn’t move my right arm. I remember thinking ‘God is this it? Is this my life now?’
Scans showed that the shunt had sort of worked, that it had drained the fluid build up but then it had continued and was now over draining. And because of this I now had blood building up around the outside of my brain, causing it to sag.
I was taken in for further surgery to add a device in to regulate the drain.
3 brain surgeries in less than 4 weeks.
The surgery went well but I was exhausted. Physically, mentally, emotionally and spiritually drained. Unlike with the previous surgery, the next day I was not better. I still had all the same symptoms except now I had even more pain where they had cut me open again. I was done.
That night my husband prayed for me again. We were on the phone and he prayed whilst pacing up and down our living room – I lay listening on the phone in my hospital bed. He begged for this to be the last surgery. He prayed that things would get better from here. He declared the goodness of God even though we didn’t feel it.
I don’t know if it was the prayer or not but the next morning I woke up at about 4am with the worship song “So Will I” in my head – the original is by Hillsong but I had the Bethel version in my head. So I YouTubed it and listed to it. And then I listened to it again. And then again. I listened to that song on repeat for 3 hours that morning. And I cried as I realised the power of the words (if you haven’t listened to it before, I have included a link to it below).
I realised that for so many years I had been singing words like this without really and truly understanding the gravity of what they meant. It’s not a case of we should, but that we need to worship God in every season, in every circumstance. Because that is what we were created to do, along with the whole of creation!
God isn’t here to serve us, we were created to serve Him! We are here to honour Him!
We don’t deserve His help. But He does deserve our praise!
The truth is that He doesn’t promise we will never have problems. But despite our unworthiness, He does promise to be with us through everything because He loves us.
Many of you reading this will probably know this way deeper than I do, but something in that time of worship really brought this home to me, in a way that I have never understood it before. There’s something about pain and suffering that strips away everything we have, whether rich, poor, clever, not-so-clever, old, young, whatever, and forces us to listen.
I wasn’t physically better. Not even close. But my outlook had changed dramatically.
The last verse of the song So Will I goes like this:
God of Salvation
You chased down my heart
Through all of my failure and pride
On a hill You created
The Light of the World
Abandoned in darkness to die
And as you speak
A hundred billion failures disappear
Where you lost Your life so I can find it here
If You left the grave behind you so will I
I can see Your heart in everything You’ve done
Every part designed in a work of art called love
If You gladly chose surrender so will I
I can see Your heart eight billion different ways
Every precious one a child You died to save
If You gave Your life to love them so will I
Like You would again a hundred billion times
But what measure could amount to Your desire
You’re the one who never leaves the one behind.
As I sang that over and over again my eyes filled with tears and I remembered the sacrifice that Jesus had made for me. He felt more pain than I ever have and He felt forsaken by God. Yet he gave me assurance of life, no matter the ending to my earthly one.
Jesus gladly chose surrender for the sake of others and I decided that right there and then I would gladly surrender up my pain to Him, trusting that there was purpose to it, even if I couldn’t see it. Hadn’t he shown me time and time again how worthy he was of my praise? Didn’t I know from the testimonies of my own life and those of the people around me that he is an infinitely good father and that he loves us completely? And yet I had let only 5 weeks of pain shake me?
Jesus gave his life to love others. He’s the one who is constantly pursuing those who don’t yet know him. He’s the one who leaves the 99 sheep in search of the one that is lost. And right there in that hospital bed I realised that I was one of the 99 safely with Jesus and that, although it might feel like he has abandoned me, if by leaving me to suffer, even for a little while, it would help him to bring the one home, then I was ok with that.
BAM. That last point hit me like a ton of bricks. I had been so caught up in my own suffering that I hadn’t stopped to think that this may all be a part of the plan to rescue someone else. I believe God revealed that to me at the time I needed it most. What an awesome God we serve.
And although I still don’t know the ultimate reason for my suffering, I know that God’s ways are the best ways. I know that He really will never leave me nor forsake me. And I have a deeper understanding of His love for us, that He would go willingly through pain, pain which He could have prevented, just so that you and I could live an abundant life to the full in relationship with Him
For those of you not going through anything difficult right now, learn to truly worship in preparation for when you do. Learn to truly cry out to God, listen to God, spend time in His presence. Because the bible tells us trials will come. And I can promise you in those times, worship is powerful.
When we no longer have the strength to find words to pray, or read the bible, or get to church, we can usually remember the words to our favourite worship song or hymn. Words full of scripture and truth. Words full of encouragement and strength. And by declaring them in spite of our situation we are doing as Paul said in 2 Corinthians 10:5 and “taking every thought captive to make it obedient to Christ”. When we feel overwhelmed we need to actively point ourselves back to the truth of Jesus and His love for us.
If you do know someone who is going through a hard season, let them know that they are not alone. The messages of support, of encouragement, the prayers, the cards, the gifts, the meals, that people sent me were invaluable and literally can turn that person’s day around. Be Jesus to them.
But for those of you reading this that are the one currently going through a difficult season, whether that be physically, emotionally, mentally or spiritually, keep going. It’s a journey and all journey’s have an end, a destination. Remember:
Feelings are not facts. Just because it feels like you’re alone, you’re not. Just because it feels like God has abandoned you, He hasn’t. And just because you don’t feel like talking to God, doesn’t mean you can’t. Emotions can be misleading and although they are important to acknowledge and process, they don’t change the truth.
Doubt is normal. Yes, we are to “trust in the Lord with all our hearts and lean not on our own understanding” (Prov 3:5) but we are all human and we will have times when we’re not as strong as others. We aren’t perfect and God already knows that. That’s why it says His mercies are new every morning (Lament. 3:22-23), because he knows we will need them every morning! Don’t beat yourself up about it. You are not alone in this. But it’s also important to declare His truth’s anyway, even when you don’t feel like they are (guess this links to the above). He is good. He is love. He is with you. And His ways are perfect. Remember the times when He has shown you this, make a list, keep a diary if you you need to, and hold onto them like a life raft.
Prayer matters. Keep talking to God. Even when you don’t know what to say. Even when it’s painful. Because he hears us (1 John 5:14) and he promises that we will have what we ask of him (1 John 5:15). Even if it doesn’t come in the way we expect or as soon as we’d like it. Prayer is the way that we communicate with God and it’s powerful. Even if we can only groan or cry out to God, he records every one of our tears (Psalm 56:8) and the Holy Spirit intercedes for us through wordless groans (Romans 8:26). Just keep those lines of communication open.
Don’t be afraid to ask for help. We all need other people sometimes. Don’t be too proud. It’s not a sign of weakness, it is a sign of maturity. You were created to need others and you are not a burden. Maybe God is teaching us to be more open to letting others in. You never know.
God doesn’t make mistakes. The doctors said my condition was likely there when I was born. But I know that God knit me together in my mother’s womb. He created me the way that I am for a purpose. And I believe He has brought me to this place for a purpose. The pain I am in now doesn’t change or prevent the purpose that He has for me. And it’s the same for you. You are you because God created you that way. If you are a Jesus follower, you are where you are now because God led you there. Jesus didn’t protect his disciples from ever experiencing the storm – he took them through it (Matthew 8). Paul was not saved from the thorn in his side, even though he pleaded (2 Corinth. 12). Your suffering will serve a purpose. Trust God to show you.
God still loves you. This is sometimes hard to comprehend when you are right in the middle of something painful but it’s not any less true today than it has ever, or will ever, be. God’s love is unfathomable and unending. You are His masterpiece and no matter what, you are his treasured possession.
You can handle more than you think. We’ve all heard 1 Corninthians 10:13 quoted to us in one form or another when we have been going through something difficult:
”God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it.”
But the truth is that most of us at some point or another will feel overwhelmed by whatever it is we are faced with. Yet we, as human beings, are able to face a lot of pain and adversity and come out the other side. Every time I thought I was at breaking point, that I couldn’t handle any more pain, something worse would happen. But I did cope. Sometimes not well but I am still here. And people have gone through so much worse than me and come out the other side, not washed up, not by the skin of their teeth, but triumphant!
“These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold–though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.” – 1 peter 1:7
The truth is you are incredibly strong. And the bible promises that with Jesus we are strong enough to face whatever battles life brings (Phil. 4:13). Keep going!
There will be good days and bad days. But keep looking for God. He is there even when it doesn’t feel like it. You may not understand right now, and you may not for a while, but there is a purpose in your pain. Keep worshipping. Keep moving forward. Keep looking for the miracles.
I am now home from the hospital. I came home yesterday.
I am by no means “out of the woods” yet but I am well on my way to recovery and feel heaps better. I still have a problem with my arm (although I have a lot more movement in it), I still have the stitches in my head, I still experience pain (although nothing like before), and I still feel exhausted. But I am confident that God’s faithfulness will see me through anything I face in the future.
And you can be too.
I’ll leave you with one more song that has lifted me over the past week or so. It is a song called “Confident” and it expresses everything I want to say in a much better way than I ever could. I hope you enjoy.
