Crohn’s and Coronavirus

The outbreak of coronavirus has coincided with our own little crisis, so that at first, I didn’t really appreciate the severity of the global situation.

My Crohn’s disease, which has behaved itself very well for at least six years now, has suddenly flared up. I caught a flu-like illness at Christmas time, and my poor stomach hasn’t been the same since. I got to the stage where I was exhausted and visiting the toilet several times a day … anyway, it wasn’t pretty. Thankfully it was just as the first coronavirus headlines were reaching the UK, so I was able to quickly access medical care.

The catch is that I’ve been put on steroids. These dampen my immune system and while that’s great for my Crohn’s (which is beginning to behave itself again) it’s not great when a global pandemic is occurring!

It has been really hard to know what to do. What I’ve been very aware of is that it was a flu-virus that triggered my current symptoms. I don’t want to give my immune system any more excuses to misbehave, especially with a brand new virus. I also don’t want to become one of those people overloading the NHS, by developing complications.

So we’ve applied social distancing measures to our family. We made the decision to keep the children off school yesterday. It seems foolish for me to be avoiding supermarkets, but letting the children go into a crowded, closed-in space for six hours a day, and risk bringing germs home. At first I thought we were overreacting, but a doctor friend has reassured me that we are being wise.

I’m very conscious that I was facing some deep questions just as coronavirus began making its way around the globe.

What if the treatment doesn’t work this time? What if my Crohn’s gets worse, and I have to live with debilitating pain and illness long-term? What if the treatment really doesn’t work? Will my life be cut short? Will I have to leave my family and my children?

I don’t want to sound dramatic, but these questions are very likely to be running through the mind of anyone facing a serious, chronic condition. I’m also aware that these may be the questions running through your mind right now, as you watch the spread of coronavirus, and the attempts of governments to slow and stem the tide of disease.

I think coronavirus is exposing us to things we prefer to suppress. Things I’ve had to face up to often through my life.

Medicine does not hold all the answers. When I was diagnosed with Crohn’s, I was surprised to discover that the doctors did not know what causes this disease (and many others). They know what the disease does, and can offer some very welcome treatments to heal our bodies, but cannot explain why a body’s immune system would turn upon itself.

And even the treatments themselves hold no guarantees. I may take the same steroids and medications as another woman my age, and she may respond and recover; I may not. Again, the doctors don’t have an explanation. Different people respond differently to different treatments, and it’s impossible to predict outcomes with certainty.

What this is all whispering to us is that our lives are not certain. We have far less control than we like to think. This is a truth we are able, most of the time, to keep at bay here in the west.

I know this because it’s how I lived before I got Crohn’s disease. I assumed that ill health and death were far off. I assumed that if I did get ill, there would be a scan, a pill, a treatment. And in the moments when such assumptions were shaken, I could silence the whisper of fear through social-media and home entertainment.

Teach us to number our days, that we may gain a heart of wisdom.

Psalm 90:12

I know it’s really scary, facing the unknown. It can feel like standing on the tip of a void. As I’ve reckoned with the possibility of my life holding illness, surgery, pain, cancer, and possibly an early death, I’ve sometimes been gripped with terror. What will happen to my children if my life is cut short? What will happen to me?

I’ve begun to realise, very vividly, that none of the things we trust in are strong enough in such a storm. Medicine can do much, but it cannot save your life indefinitely. The outlook is bleak – the mortality rate on this planet is fixed at 100%. You may get to live to eighty, ninety, but then you will die. And as Moses so eloquently states, even those years are weary, and full of trouble (Psalm 90:10).

My gentle challenge to you, during this fearful time, is to let yourself face those fears. Ask yourself those hard questions. Stand on the edge of the void, face the unknown.

What is your baseline trust? When all the things we usually trust in – social order, government, medicine – are being shaken, where is your hope? When a vague platitude of, “I’m sure it will all work out” no longer holds water, where do you turn?

It’s only as we face our fears that we really discover what we are hoping in, and where our trust is. Mine was in my health and youth, once. I quickly realised that a disease can easily take away all of that. Then for a while my trust was in medicine, but I learned that there are no guarantees, even for our amazing doctors.

It was painful, having my hopes, my expectations, taken away. My foundation was shaken. Yet as I discovered how weak medicine is, I found something stronger, something that is big enough to carry me through illness, pain, suffering, and yes, even death.

Or rather, Someone.

My hope used to be in treatment, in cure, in long life. Not any more. If God gives me those things, then I will thank him with all my heart, but he may not. That’s his call. And yes, I tremble as I write that. I don’t want to die. I don’t want to leave my family. I’m scared of coronavirus, just as I’m scared of the uncertainty of Crohn’s disease.

But here is what I’m hoping in.

God is bigger than Crohn’s, or coronavirus, or any other disease. He is more precious than youth, health, long life. His love is deeper, stronger, than any I could ever have known. It’s the kind of love we all long for.

As we look at our world now, pause and notice the fragility of our society. We appear so strong, with our health care, justice system and advanced technology. But coronavirus is revealing it all to be built on sand. A tiny particle, invisible to the human eye, is destroying our society.

But this is my hope … one day God has promised to renew this world. He has promised to sweep away corruption, disease, and even death. In fact, he has already removed the sting of death for those who love him. When I do die, whether of coronavirus, Crohn’s, or peacefully in my sleep as a ninety year old, I believe I will be truly coming alive. I will wake to peace, healing, and life.

While coronavirus is fearful, and evidence of the evil that underlies our world, it can also be an opportunity. It’s a chance for us all to pause, to sit in silence, just for a few minutes each day, and ask what we are truly trusting in. Youth and health may fail you. Medicine will fail you, if not now, then one day.

God will not. He can keep you safe in this life, and if he chooses for you to leave, he can give you an eternal life, un-threatened by disease, sorrow or death. Look for him.

You will find him if you seek him with all your heart.

Deuteronomy 4:29

A time to cry

It’s been a tough week.

I feel like I’m carrying a stone weight in my chest. Everything is hard. I cry often, but nothing seems to take away the pain at the centre of my being.

I know the diagnosis of autism for my son will be the best thing in the long run. It’s already helped.

But I’d kind of wrapped my head around it being ADHD. He is high functioning, and very affectionate (in an awkward, stick-insect kind of way) and I’d persuaded myself that ADHD was the answer to his rage, his argumentative streak, and the difficulties he was having in school. ADHD seemed more limited somehow, more manageable, its effects smaller (I know this is not always the case, but from my reading, children with ADHD who have high intelligence seem more able to develop coping strategies).

Autism was a shock. I still feel sometimes that it isn’t right … and then my son has a complete meltdown, screaming on the living room floor, and I know this isn’t typical 11-year-old behaviour by a long stretch.

I’m aware that I’m grieving. Tears. Denial. Anger. Depression. Yup.

I feel a little guilty saying it. I know there are children with autism who are non-verbal, who will always need full-time care, and whose successes will be things we all take for granted. I know that J has high intelligence, and is likely to be able to go to university and get a decent job. For someone with autism, he has every advantage. His prognosis is as good as it could be, in one sense.

But then I look at my family. I look at everything we’ve lost over the last 11 years. I think of the rows, the frustration, the things we’ve not been able to do because of J. I know that this is going to continue now. Things are not going to get better.

I’m sad. I’m sad for me. This is not what I wanted, when I imagined motherhood. I didn’t want a child who woke me through the night until he was seven, and who still, at times, wakes me for unreasonable reasons, so that I’m often tired and irritable. I didn’t want a child who is obsessed with screens, and Sonic the Hedgehog, and who is unwilling to try new things, even things he knows he would enjoy. I didn’t want a child who has to be persuaded every night that, yes, he must do his teeth; and yes, he must wash.

I’m sad for my other children. I didn’t want family trips out to be made miserable by one child who complains the whole time because they didn’t want to come, even though if we’d stayed at home he would have been bored and miserable. I didn’t want some family trips to just not happen because the thought of going to a theme park and queuing and managing J’s impatience and disappointment, as well as two other children, just felt like too much. I didn’t want family games to always be an exercise in behaviour management, and to often end in pieces being thrown across the room, and doors being slammed, because J didn’t win.

I didn’t want my desires and longings for motherhood to be slowly eroded until I feel I don’t want to do this any more.

I didn’t want to write this blog.

But you know, all this week, I’ve felt this permission in my heart, from my Father, to grieve. It’s almost like he’s sitting with me, saying, “I know. It’s ok. This isn’t how it’s meant to be.”

Because he of all people knows that this world isn’t the way it was meant to be. He sent his own Son, after all, to bear all our griefs. He has had his own heart broken too.

The book of Psalms has many songs of lament. I’ve read them often. They give words to pray when words are hard to find. Most lead us to a positive end, affirming God’s good power, and our hope that good will prevail in the end.

One ends with the sombre words, “Darkness is my closest friend”.

I’ve often returned to Psalm 88 and wondered why it ends in darkness.

I think it gives us permission to grieve when we know things are not going to get better. J is not going to get better. This will afflict him and us for the rest of his life. It may well be that I, as his mother, suffer more than him, watching him live a different life. I hope that’s the case. But he may suffer much too. He may want to get married but be unable to find someone to accept him. He may want close friends, but be unable to connect to people meaningfully. He may have close friends and lose them, because of his social ineptitude.

This is my Psalm 88. I will blog another time about hope, about God’s goodness, about the rainbows he is painting through this storm.

But right now I am sad. Right now I am angry. Right now I need to cry.

And if you are dealing with hard, hard things, know that it is ok for you to cry too. God is listening.

Not alone

My oldest son was diagnosed with autism on Tuesday.

I don’t quite know what to do with the diagnosis yet. It sits in my chest like a stone, hard, heavy, painful.

He’s been under the neuro-developmental team for 18 months, and we’ve known for at least three years that there was something going on. We’d kind of wrapped our heads around it being ADD, and felt he had some autistic traits, but because he’s doing so well academically, I suppose we had ruled out a diagnosis of autism.

And I’ve realised that I’m the kind of person that holds onto hope, however unlikely it seems. I want to believe the best, I want things to work out, sometimes to the point where I won’t accept the obvious fact that something isn’t working out.

I mean, when your 11 year old is rolling round on the living room floor, crying and screaming because you’ve told him he can’t have any more X-box, you’d think it would be obvious that something was not quite right.

Still, it’s hard to accept. He’s my son. I want the best for him. I want a happy, simple life for him, with a good job, marriage, kids.

Suddenly all those things are looking less likely, perhaps even less possible.

So I’ve come back to this blog (after a looong break) to try to process it all. I suppose I’m aware that lots of other mums are going through the same thing, and will go through it in the future. By putting my journey of acceptance out there, then perhaps I’ll help someone else.

After the meeting with the consultant, after driving my son home and picking my other kids up, and cooking tea … my first big concern was how autism would affect my son’s acceptance of Jesus and the gospel.

We’ve already encountered some problems. I mean, he has a really hard time accepting that he might be wrong, so wrapping his head around personal sinfulness might be hard. He seems to struggle to engage with the church service (we go to a more charismatic-leaning church at the moment, so emotions are high on the agenda) … he doesn’t like to sing, and just wants to draw Sonic the Hedgehog through the sermon. He also checks out during our family worship times, or cracks silly jokes and distracts his brother and sister.

Can he even become a Christian, I feared. The obstacles just seem too high for him.

Almost immediately I felt the reassurance of God. Nothing is too hard for Jesus. He has defeated death, sin, hell, Satan. Autism is no obstacle to him.

Jesus can save my son. It’s a spiritual work, not mental or emotional (though of course the Holy Spirit will transform those things as he works). And maybe my son will always struggle with aspects of church and spirituality. But Jesus has a special place in his heart for the broken, the weak.

So my first fear was laid to rest.

 

My heart for you, if you are a fellow mother, struggling to accept your child’s future, is for you to press closer to Jesus. He is so strong, so good, so kind. I know it might not feel that way right now. But he is. He will sit with you while you weep; he’ll weep with you in fact. He knows this world is not the way it should be. You are not alone.

 

Thoughts from the pit

I had such a strong vision of how our family was going to be. Thirteen years ago when I said, “I do”, I thought we would have a tribe of happy children, gathered peacefully around the table. With Christmas coming, my vision turns to games played around the fire, stories shared with food, children listening as we whisper the reason for the lights and presents, the joy that we have a Saviour.

I know now that this was an ideal, even in ordinary families. The peace is disrupted by sin, selfishness, illness, and tiredness. Those moments of peace and joy, when they come, are precious.

I think the past ten years have been God slowly prying my fingers loose from my vision. I cling on tightly, because this is what we have been taught to want. Peace, happiness, gently glowing fairy lights and thankful faces.

I think God has a different vision. And now that we have accepted that our oldest son actually has some pretty deep issues, I’ve been working through a process of mourning my vision, and learning to accept and live in what God, in his wisdom, has given instead.

God’s vision is one of self-sacrifice, where we learn to make space for other peoples’ difficulties and differences. It hurts. It means that maybe our family worship times have to be short, snappy, fun, rather than slow, deep and thoughtful. But you know what, that’s where my husband excels. So maybe God’s vision is also one where I learn to let go of control a bit more.

God’s vision is one of forgiveness, where we walk the hard road of saying, “You hurt me, but I’ll accept the pain of that rather than break our relationship”. We are walking with him in this, following the footsteps of Jesus.

God’s vision is one of love, where we show kindness when we are reviled, patience when faced with ingratitude, and persistent generosity when our efforts go unrecognised. We could not learn these things so well if life was always easy, if our children were always obedient and thankful.

If I have learned one thing in this life it is that the harder road is always the better one, though it may hurt. The best things of God are those won through pain, through trial. Just as the best views are found at the top of a rugged mountain path, the greatest love is found through sacrifice.

God knew this. It’s why he allowed sin into the world. It’s why he sent his Son to live here, instead of remaining in perfect peace and joy in heaven. It’s why he allowed us to crucify his deeply loved Son, so that the whole Trinity could enter our brokenness and love to the fullest measure.

God seeks to draw us up into his higher life, his life of sacrificial love, his life of forgiveness and mercy. Will I still fight him? Or will I embrace the opportunities he has given me to experience deeper love, deeper forgiveness, deeper grace?

Behind the emetophobia

Emetophobia is a fear of vomiting (or someone else vomiting).

I have suffered from it for as long as I can remember. I have encountered many who also suffer from it. A big part of it is shame, and a sense that you are somehow pathetic for not being able to just get on with being sick and then move on, like the rest of the population.

I have had therapy which helped me to overcome some of the fear. But I would still rather almost anything happen to me than catch a sickness bug.

I fear being sick more than anything else. (For some emetophobes the fear is broader – others vomiting near them, watching a vomiting scene on TV, even hearing or seeing the word written).

If you are like me, and fear being sick, it is quite possible that you share another trait with me – being a highly sensitive person.

An HSP has a brain which processes stimuli at a far deeper level than the average person. In real terms this means that experiences will be more intense, whether physical or emotional.

I believe this is why vomiting is something I avoid at all costs. Every single sense is stimulated unpleasantly: taste, smell, sight, hearing and touch. For the HSP it is an absolute bombardment of misery, and utterly out of their control.

No one likes being sick. Most people avoid it if possible. But for the HSP it is overwhelming.

Realising that this is part of who I am has helped. This is not going to go away, and that is discouraging. But the reason I hate it so much is not because I am weaker than everyone else, or just pathetic. It’s not because I did something wrong earlier in my life. It’s not because I suffered a traumatic experience. It’s just because of who I am.

And being highly sensitive, for me, has a massive upside. I am also incredibly sensitive to the many pleasant sensations that this world affords. I feel uplifted just by walking past a garden of beautiful flowers, or a peaceful river. I experience deep joy in watching my children play or holding my husband’s hand. And spiritual joys perhaps are easier to come by … one of the problems that seems to be exhibited by western Christians is a lack of wonder at the character of God. Yet I rarely struggle to find those emotions – perhaps they are closer to the surface than for the average person.2014-06-23 20.53.14

So although sickness is traumatic and awful, it really only lasts a few moments. It is far outweighed by the joys and pleasures that are just as intense and far more lasting. I just need to remember to focus on those, instead of fearing the worst all the time.

A study in fear

Fear seems to shadow me at the moment. More than shadow; its sickening claws have got a grip around my throat and I’m choking on it.

I’m afraid of sickness. A vomiting bug has been working its way through the family and so far, by the grace of God, only myself and BabyGirl have stayed well. But in an attempt to keep the sickness in check I’ve been on a cleaning frenzy, bleaching surfaces and washing my hands until they are raw. My house is probably the cleanest it’s ever been, but I’m exhausted and a bundle of nerves. I snap easily at the kids and my husband.

I’m afraid my daughter is going to keep waking me up at night. She had a nasty cold last week and woke three or four times a night, needing to feed back to sleep. She had one night of sleeping well and now she has another cold. I’m afraid she’s going to keep waking me. I’m tired, and tired of being tired. I want to feel normal for a while.

Even when she does sleep, often I can’t. I lie awake in the dark, turning over and over in my mind … have I cleaned every door handle, did I wash the baby’s hands before she ate, did I clean the toilet thoroughly?

I feel frustrated. I’d really got a handle on the fear through therapy and mindfulness, and I suppose just having a stretch without any nasty bugs in the house.

I feel alone. I want people to understand how every day is a desperate clinging to sanity and reason instead of giving into the impulse to clean everything in sight. In fact, often the only thing that stops me cleaning everything in sight is sheer exhaustion. I do what I can and then pray.

Where is the joy? That’s what this blog is about, isn’t it, what my life is aiming at? Joy …

I’m remembering that joy is not dependent on circumstances. It is deeper than that, bedrock.

Joy is dependent on Someone. I am realising that my fears are an indicator of how little I trust Him. Of how I cling to control, because I think I can manage things better than Him.

I turn to well-worn passages and I weep because this Saviour suffered so much willingly, undeservedly, and I can’t bear a bit of discomfort even for an evening.

I remember that he knows fear. He knows fear. He sweat blood, and still turned and faced what he feared most.

I do not know what tomorrow will bring. I may end up sick and miserable for a while. I may be well. I may sleep through or I may be woken every couple of hours. I don’t know.

But he knows. And I’m not sure why, but that brings some comfort. He knows. If I can calm myself and look to him, he will give everything I need to face whatever comes tomorrow.

A Study in Fear

Well, it’s hardly the most propitious start to the year but Son#2 spent most of yesterday with his head in the sick bucket, and I have spent today bleaching everything in sight, trying to prevent the rest of us from going down with what I can only assume is my great nemesis, the Norovirus.

I want to testify to the great and tender mercy of God. He remembers that we are dust, and has sent many kindnesses our way during this trial.

But he has been challenging me. Stretching me.

Today 60 years have passed since Jim Elliot and his companions were killed by the Huaorani they were trying to reach with the gospel. Such a willingness to surrender everything to Jesus by a young man with a wife and small daughter makes me ashamed of my petty fear of a day of discomfort.

I know the theory. I know that it is only one day, and that if I catch the norovirus it is only for good, even if I can’t see the good.

But all my feelings are in rebellion and I have spent the day like Jacob, wrestling with the God I think I know. He is good. He is merciful. But he is also wiser and greater than me, and can see further, to the ends of eternity and back. This is comfort.

But it is also terrifying. It puts someone other than me in control, and even believing that he is good and loving … I am fighting with myself, fighting to reach that place of surrender where I can let go, empty my hands and take whatever God sends with thankfulness and trust.

This fear goes deep. Its roots run right into my soul, where I cling tightly to the sense that I have some power, some control over my circumstances. But the only thing that God wishes me to control is myself.

It was very helpful to me to realise that Jesus’ command is not, ‘Do not feel afraid’, but ‘Do not be afraid’. He experienced the depths of fear in Gethsemane. He knows that gripping terror which turns the bones to water and makes every heartbeat last forever. He knows the urge to run, the hissing instinct of self-preservation. He felt fear at its strongest.

But he did not run. He did not allow fear to control him; rather he mastered it and walked calmly away with the soldiers to be tortured and killed.

I am fighting with my demons today. I feel profoundly afraid, but, with God’s help I will not be afraid. I will comfort my sick son when I want to run. I will wrestle until the truth that God loves me, and will send only good, comforts my soul. I will try to follow my Lord, and master my fear.

Fear cages me. Sometimes I like my cage. It makes me feel safe. I willingly open the door and step inside, thinking that the cage will keep me from harm. But in fact it traps me.

Faith melts the bars of iron and throws my horizons wide. Because anything is possible with this God. Moving mountains. Walking on water. Even coping with Norovirus.

When God says ‘no’

Prayer is my secret weapon. I am weak and broken, and full of fear. Prayer is how I cope. I lay my fears, my weakness and my shortcomings before my God. I receive forgiveness, and help (not often in the form I want or expect, but, still … help).

Prayer is also my source of joy. I learned through tough times that acknowledging the good things that overflow in my life (or saying ‘thank you’) brings great joy, even in pain. It puts my focus where it belongs – on the divine – instead of on me.

 

But sometimes I hit a wall. It happens most often when I’m praying for safety or protection (usually from whatever sickness bug is lurking in the ether) because I ask God to keep us safe, and then the finger of fear prods this nasty, insidious thought to the front of my mind:

What if God says no?

 * * * * *

That is the dilemma of every person who prays.15 View from Garden

This is the fear that turns our prayers from worship and love to manipulation and whining.

This is the doubt that turns our God into an idol, a creature of my imagination who can be persuaded and bargained with.

 

You remember idols. The Bible has a lot to say about them. They work like this: the idol wants (or even needs) something. I provide that thing (be it fruit, or money, or a hundred prayers, or my child) and then the idol does what I want.

It’s a business transaction. A bargain.

If I keep up my end, then I can fully expect god to do his bit and protect me.

 

Except God isn’t like that.

God is God. He will do what is good and right, no matter how we wheedle and plead and beg. He rules over heaven and earth and an army of angels. He even rules over demons and the forces of evil. He ‘turns the hearts of kings’, and puts governments in their place. This is the God of earthquakes, lightening and volcanos, the God of stars and solar systems … mighty forces that put the pinnacle of human power into the realm of ants and bees.

If I come to God imagining that I can offer him something he needs or wants, I do not know him at all. He isn’t even bothered by my disobedience – it makes no difference at all to his plans. All the forces of evil stand against him and he wins.

God cannot be bargained with. We offend him if we try.

 

So how do I pray to him? How do I get past the fear that God might say no?

 

Aha … (this was an ‘aha’ moment for me this week so I’m putting it in writing just for you) … aha! The fear that God might say no is the very thing that keeps me from trying to manipulate him.

Stay with me.

Look that fear full in the face. God might say ‘no’. This is not because he is petty or mean or because I haven’t offered him something big enough, but because he is great and good. Because he is God. If I was praying to a petty deity I could be afraid of his ‘no’ because I might offer him my whole life and it might not be enough.

But if I come to God as God, recognising him as the awesome Ruler of everything, if I recognise my place as the created, dependent, helpless being … if I then place myself into his hands … I am in the safest place in the universe.

Yes, that thing I fear might happen, but only because God has allowed it.

 

And God is God, who never willingly sends suffering into human lives (Lamentations 3:33). He remembers that we are dust. He doesn’t just remember, he knows. He became one of us. He knows what it’s like to suffer pain and sickness, tiredness and fear. He died so that you could be free of those things one day.

He is my Father. He is my Friend. So I can ask him for anything. I must remember as I do so that he is God. He may well say ‘no’ – but it is remembering this, while avoiding the impulse to try to tame the whirlwind, that is real prayer. It is laying my requests humbly before God, acknowledging on the one hand that I have no right at all to expect a favourable answer … but remembering on the other that God is good and merciful and kind and overflowing with love towards me.

 

“Aslan is a lion- the Lion, the great Lion.”

“Ooh” said Susan. “I’d thought he was a man. Is he-quite safe? I shall feel rather nervous about meeting a lion.”

“Safe?” said Mr Beaver. “Who said anything about safe? ‘Course he isn’t safe. But he’s good. He’s the King, I tell you.”

C. S. Lewis ‘The Lion, the Witch, and the Wardrobe’.

Looking at the thing I fear or want, looking at myself … this induces panic and the attempt to manipulate the God of heaven and earth.

Looking at God … this produces prayer.