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.

 

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.

Pregnancy after trauma

Today some wall stickers arrived that I ordered for our baby girl’s nursery. I also ordered some furniture paint online so that I can freshen up our baby furniture (which is looking decidedly tired after serving two little boys).

Anyone who has not known the trauma of a high risk pregnancy and delivery can have little understanding of the faith required to do these small, perfectly normal things.

My first pregnancy almost ended in tragedy, for myself and my baby. I developed aggressive pre-eclampsia early in the pregnancy. My son had to be delivered at 30 weeks by emergency caesarean section. Both our lives were put at risk, and the decision to have another natural baby (rather than adopting) has been very difficult. My second pregnancy ended with a natural, full-term delivery. I had hoped this third pregnancy would be different. That I’d be able to relax and enjoy it (as far as pregnancies can be ‘enjoyed’!)

So far I’ve been as anxious as ever. After wading through weeks of severe sickness, I’m now, according to the pregnancy websites, meant to be enjoying the second trimester ‘bloom’. Instead I feel as though my body has decided to skip over those happy middle weeks when women are pictured jogging on the beach, playing football with their children, and generally enjoying a burst of energy, and go straight to the third trimester.

My stomach has expanded to the point that I feel ready to burst, and I am heavy and uncomfortable whatever I do. I have anaemia, and literally could sleep at any point in the day, even after an hour’s nap. I still get waves of nausea, and seem to have no immune system whatsoever.

But hard and jagged under all this is a bedrock of fear that I cannot seem to shake. It makes the niggles of pregnancy seem minor. I tell myself that I have successfully carried one baby to term, and this reduces my risk of pre-eclampsia. I tell myself that the chest pain is just heartburn, that the palpitations are anaemia, that the exhaustion is perfectly normal for a woman in her early thirties with Crohn’s disease.

I am not convinced. Instead, I am not expecting to go full term. I am waiting for something to go wrong. Sometimes I feel my daughter kicking and feel that she is struggling for life. I imagine her wrestling for oxygen as the placenta reluctantly surrenders what she needs. I feel like my body is a hostile environment for her; who knows whether my immune system might start reacting again and prevent her from growing.

So I bought stickers for her nursery and paint for her cot, but with a lacing of fear about the decision. I wonder if these things will one day bring me pain.

I am aware that today I have let go of my ‘life to the full’ motto. I am allowing myself to listen to the whispers of the demon Fear. I am finding it hard to listen to the voice of Christ, which says, ‘do not be afraid’.

So I remind myself that I am here on his business, not mine. I am here today, and today my job is not to worry but to let Jesus live in me. I am here to be his hands and his feet.

And I pray that my little girl will live and grow and become his servant also.

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.

My Emetophobia Story

This will be my last post about my personal issues for a while! I’m honestly not self-obsessed, I just think a bit of background might be useful in my future posts!

 * * * * *

This entry is about my struggle with emetophobia.

Emetophobia literally means a fear of vomiting, but it can involve a fear of nausea, other people vomiting, and even the mention or sight of words connected with vomiting.

People who do not have this will find it hard to understand. The best way I can translate it is to ask you to think of the thing you fear most. Almost all of us have some irrational fear or other, whether it is of being trapped in a lift (my husband will walk up ten flights of stairs rather than take the lift), or crashing in an aeroplane, or dogs, or birds or whatever. Most of these phobias are quite common, and people are usually quite sympathetic to a fear of closed spaces, for example. Now imagine that every day you faced the possibility of being forced into the situation you fear most, and having to endure it for several hours, possibly even days. That is what life is like for an emetophobe. Germs lurk everywhere – a trip to the library can be a source of great anxiety; all the hands that have touched the books, the tables, the chairs … how many of them were washed properly? The supermarket, the school, church, the park … each of these places and more contain hidden danger to the emetophobe.

Responses to my admission to having this phobia illustrate how misunderstood it is. “What are you afraid of?” one person asked. I couldn’t possibly put into words my answer – the physical sensation, the panic that accompanies it, the taste, the smell, the nausea, the sense of being out of control, the fear that I won’t make it to the toilet or bucket … and a shapeless, nameless fear that hangs over the entire thing.

“No one likes being sick”, is another common response. Of course not. But most people would probably not fear it so much that they would rather suffer excruciating pain than vomit. It’s not as simple as not liking it. I don’t like getting a cold, or bumping my head, or going to the dentist, but I can rationalise my dislike of these things, and manage any fear so that I can face them. I cannot rationalise the fear of vomiting. It just is a part of me.

I don’t want to overanalyse it. Sometimes people develop this fear because of a traumatic childhood experience involving a vomiting incident. But I think more often it is just part of their makeup. For myself, I am a very sensitive person. I feel things (emotionally and physically) very keenly. I have a low pain threshold, and a high sensitivity to smell, taste and sensory stimulation. This can be wonderful – I go through life in awe of the beauty around me, while most people become immune to it. But when it comes to unpleasant experiences I really struggle. And the act of vomiting, with its unpleasant stimulation of all the senses, is overwhelming, particularly for a small child who cannot minimise or rationalise the event.

By the age of ten I remember being very afraid of being sick. In university I reasoned with myself that I had to stop letting my fear be in charge. I stopped washing my hands so much, and ate things without worrying about the date.

Then in 2005, shortly after getting married, my husband and I both caught a nasty bug. I think after that I began to get more worried about vomiting.

What rocketed my emetophobia to unprecedented levels, however, was having a very premature baby. My first son was born at 30 weeks gestation, due to pre-eclampsia. He came home five weeks later in a very fragile state. He weighed only 5lbs, and we were warned by the nurses that if he caught a cold it could lead to major complications, including pneumonia and rehospitalisation. Rotavirus could cause major complications, and even kill him, as his immune system could not cope even with commonplace germs. We were told that supermarkets and other public places were dangerous for a preemie.

We took extra precautions, naturally, but for someone like me, with a predilection to anxiety over germs (and post-natal anxiety due to our traumatic birth experience) this was all I needed to allow my emetophobia full control. I had an excuse to worry now – my son could become dangerously ill.

I would wash and re-wash all his bottles, and sterilise them carefully. I washed my hands until they bled. When I finally thought he was old enough to cope with a supermarket trip I wiped the trolley down with antibacterial wipes. I wiped restaurant high chairs, and refused to let my son play with toys in a public place. I washed his hands after visiting the park, church, and friends’ houses.

I became more and more withdrawn. Going out of the house became stressful and emotionally difficult. I went to one or two toddler groups, but I was so anxious the entire time that I could barely carry on a conversation. I wouldn’t let my son eat a biscuit without putting gel on his hands. I was terrified that he would catch anything for a while, but eventually it just became stomach bugs. I couldn’t cook chicken for several months, afraid of food poisoning. I was afraid to eat food that other people had cooked. I was afraid to visit friends’ houses in case one of their children had a bug and they didn’t know it.

I knew that my fear was an overreaction. I knew that my phobia was controlling me to an unacceptable level. I was isolated, depressed, anxious and lonely.

The anxiety worsened after the birth of my second son. My health declined at this point, and I was too afraid to go to toddler groups; I would only visit friends who I felt confident were healthy. I was afraid to let my son go out with other people, or go to play centres or play groups, and so I turned down a lot of the help I could have received. I even struggled to trust my mother’s cooking, and would check that she had cooked the meat for long enough, and defrosted it correctly, before unwillingly eating.

I became badly depressed and that first year after my second son’s birth is a black hole in my memory.

I became really exhausted, trying to cope with this phobia. It was holding me back, and it had changed me into a different person. I used to love trying new things, new foods. I had wanted to travel. Now I could barely leave the house without it feeling like a huge expedition into the unknown.

You probably think I was being utterly ridiculous, but this fear is insidious. Germs are invisible. You cannot predict whether you are going to ingest them or not, or whether they will make you sick if you do. Germs can lurk anywhere. The cause of vomiting can be many things. If my kids were sick (which they were frequently, and usually not because of a bug) I would spend three days in absolute terror, bleaching everything in sight, and hardly daring to eat in case I would need to vomit myself.

(Just as a note – exposure does not work as therapy. I have been sick more often in the last seven years than I have in my entire life, and my phobia only grew worse, not better.)

 * * * * *

I prayed for release, for my own sake, for my family’s sake, and so that I could be free to serve God without fear.

Eventually I heard of a consultant in a nearby hospital who specialised in treating people with anxiety, Crohn’s disease and phobias. No one knew quite which department to put him in, so he was in physiotherapy.

I had a year of sessions with him. I learned to manage my breathing in a way that naturally calms the body down. I learned to practice mindfulness, focusing on the moment rather than imagining what might happen in the future and panicking about that.  Slowly my thought process altered, so that I no longer focussed on the possibility of getting sick. I felt calmer, less anxious, I slept better. And my Crohn’s improved, no doubt because I was no longer under such tension.

I am not fully cured – I am not sure I will ever reach the point where the possibility of vomiting does not fill me with terror. The sensation of it is bearable, but the moments before fill me with such fear and loathing that I would rather be writhing in agony. In an earthquake or an outbreak of flu I would be fearless, calm and collected. But if norovirus is about I turn to jelly.

But I do not obsess about it every day any more. I do not agonise over my sons’ safety while they are in school or nursery. I can bring myself to let them go out to a friend’s house, or just out of the house generally, without worrying overmuch.

 * * * * *

If you suffer from this condition, to whatever degree, know that you are not alone. You are not weird – this is a very common phobia. Part of the difficulty with treating this phobia is that, very often, patients do not want to get better – getting better means opening themselves to the possibility of getting sick, and this is something they fear above all things. It is not the same as fearing closed spaces; a person can reasonably expect to go through life without having to spend too much time in a confined space. A person cannot reasonably expect to avoid vomiting through their entire life. In fact, as a mother, I have had to be brave and love my children many times when everything in me was telling me to run in the other direction.

If you are a fellow emetophobe, take heart – I have endured three bouts of severe morning sickness, Crohn’s disease, and numerous stomach bugs. Most of the time, the act of vomiting was not as dreadful as I imagined it would be. A couple of times it has been, but it is over in moments, and I hardly think of those moments now. They are insignificant, compared to the joy and pleasure that I have received from my children.

 * * * * *

I sometimes wonder what God is thinking, giving an emetophobe severe morning sickness and Crohn’s disease … but I know that my phobia has made me walk closely with him when most people would have just pushed through in their own strength. My phobia, my weakness, has made me strong, because in scenarios most people would just get on with (like a bug hitting the family for example), I am forced to depend on him utterly for the strength to carry on loving my family, when all I want to do is run.

Fear makes us brave.