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.

 

Doubt and Silence

I am in an ugly season, of doubt and silence.

I am weary to my core, and have nothing left to give but the relentless days keep coming. The sun keeps rising. Children need dressing and feeding, and leave me no space to turn inwards, or even upwards.

My husband has a back injury that has recurred five times in the past two years. Each time he suffers terrible pain for weeks. He can’t sleep, and he recedes (understandably) into a cave out of my reach. We drift through the days, which become fuller for me, as the help I depend on from him has to stop.

My body is weary. My stomach is playing up, causing nights of pain and nausea, but I must get up in the morning to care for the toddler and get the older two to school, because my husband can’t do those things right now. I ache for breathing space; I feel my lungs are compressed by the days and hours and the pressure of carrying children and housework and husband and church.

My prayers are desperate, like the chirping of a helpless chick. Wordless, most of the time, a bewildered wail. Help. Help.

It feels as though the help does not come. I feel alone.

I have been through times of grief, times of struggle before. I have watched others struggle through bereavement, illness, and just hard days. We can be so tempted to come to sufferers with words, layering up clichés of supposed hope, which often injure and deepen the sorrow.

God works all things for good. This may be true, but in great grief we just can’t see it.

God’s power is made perfect in weakness. Yes, but I’m not experiencing God’s power right now.

Sometimes we just want someone to sit with us, to grieve with us. To sit in silence.

The Lord is good to those whose hope is in him, to the one who seeks him;

it is good to wait quietly for the salvation of the Lord.

It is good for a man to bear the yoke while he is young.

Let him sit alone in silence, for the Lord has laid it on him. 

Lamentations 3:25-28

Perhaps, when God’s silence is most profound, this is what he is doing. For we know he knows our grief. We know he tasted sorrow and loneliness and pain to the dregs. We saw him weep in Gethsemane. Alone.

Perhaps his silence is that of companionship, where the pain is beyond words. Perhaps the tears are rolling down his cheeks in sympathy. Perhaps he is sitting right there all along, in silence.

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.

Dry ground

When the soil is dry, plants are driven to push their roots deeper and deeper to find water. It makes them stronger in the end, though the long summer may be hard to endure.

08 St Fagans Garden

A dry spell in our garden has just ended. Rain is falling, sinking into earth and pattering on leaves.

In the next dry spell, their roots will be that much closer to water.

I am in a spiritually dry spell. After a winter spent at an oasis of God’s nearness, I am feeling lost and a bit bewildered. God’s arms seemed to encircle me, his presence seemed so near, and now I pray and I feel I am speaking to an empty room. My heart is heavy, and it is hard to lift it high to God.

But our feelings are no measure of our circumstance.

The truth is, I am firmly planted in the love of God. His nearness is as certain as the ground beneath my feet. I must learn to trust in the certainty of his promise, of his character, instead of how I feel.

I put roots down, seeking water, seeking spiritual life. I return again to old texts that have encouraged me before, seeking the silver trickles that once refreshed me. I seek new sources of life, thirsting for the living water that does not run dry.

Christians have written often of the strangeness of these times. Why does God withhold the rain, the sense of his presence? Why do we have to endure dry ground?

In our emotion-reliant culture, it is more important than ever that followers of Jesus have deep roots, strong foundations. We have a rockbed of truth that never moves, and we must take our stand firmly on that, not on feelings.

God is faithful, when I am not. God is good, all the time. God is loving, in a way we can barely understand.

These truths must be the source of my life, my strength, not how I feel about them.

And is it possible that I have been seeking nearness with God, merely to enjoy the heady emotions that follow? Surely God himself should be my heart’s desire, whether he chooses to bless me or not.

Whom have I in heaven but you?

And earth has nothing I desire besides you.

(Psalm 73:25)

We went to a lovely wedding today. Admittedly, I spent most of it trying to prevent BabyGirl from bumping herself, screeching over the vows, and breaking my necklace (she’s every inch the nine month old) but it was still wonderful to be present when two people commit to love for a lifetime.

The year we got married there were another six couples from our group of university friends who also tied the knot, and we were present for most of them. That was eleven summers ago. Then, weddings filled me with hope and anticipation. Now … I don’t know. I am so excited for the couple getting married. It’s a wonderful time. But it’s also awesome in the traditional sense of the word. A lifetime is no small commitment.

I think now, knowing something of what it takes to make a marriage work, I feel a sense of fear as well. Marriage is no light undertaking, and I tremble a little for the newlyweds in their innocence.

We recently heard that one of our university friends, who got married maybe eight weeks before us, have separated. It was sad and unsettling, and made me appreciate more deeply the courage and determination it takes to be faithful for ten, twenty, thirty years and more.

It made me consider what makes a marriage work. How can any couple, entering into marriage, be sure of still being together at death, whether that is five or fifty years away?

Some would say it’s luck. You meet the right person. You both happen to stay in love.

I don’t think so. Looking at my own marriage, and being fully candid, there have been many times when each of us have wanted to walk away. Neither of us are perfect. Far from it. And when lack of sleep, difficult children, and sin are all stirred together, marriage can become a battle ground.

So how have we lasted almost eleven years? And how do I have confidence of lasting another eleven and longer?

23 PembrokeFirstly, at one level, there are no guarantees. I cannot control my husband. I have no guarantee that in ten years time he will have been faithful, or that we will still be married. So my deepest confidence must always be in my Saviour and God, who has promised absolute fidelity and never breaks a promise. If he is my joy and my hope, then even marital breakdown will not destroy me.

But, secondly, there are a few things that I think make a marriage ‘work’.

My husband and I are committed to the marriage as well as to each other. Before we made our vows we were committed to a lifelong relationship. It is important that divorce is not a possibility. If even the thought of leaving is allowed, then it will almost inevitably lead to dissatisfaction and then acting on it. When there are hard days (and we have known many), that commitment has kept us together when the easy option is to walk.

Marriage is a covenant, but most people of my generation treat it like a contract. What’s the difference? A covenant has no conditions attached. When I made my vows they were not dependent on my husband keeping his. Nor were his dependent on me keeping mine. With a contract, if one party breaks their promise the other is free to walk away. Not so with marriage. If my husband fails to love, honour and cherish me, my vow to love, honour and respect him still stands. This ensures that when one is struggling the other will work at the relationship. At different times we have each broken our vows to one another, but we forgive, and learn, and try to change.

Marriage is ultimately a picture, designed to help us understand Christ’s relationship with his church. Aiming for this keeps us from being self-centred about our marriage. Marriage is not, firstly, about my happiness or my husband’s happiness. It is about reflecting something of God into this broken world. It is wonderful when a marriage brings happiness, and it is meant to be a place of blessing and joy, but even bad marriages can bring glory to God if the husband and/or wife are committed to love and fidelity, as Christ is committed to his Church.

I think these are the three things that have made our marriage ‘work’ so far. It is far from perfect and I am not holding us up by any means as an example for people to follow. I have already said that we have each failed to keep our vows, and have each wanted to leave at different times. Adding a third child has put a new level of strain onto the ropes of our relationship, and some days I find myself clinging on by prayer alone. I know my husband feels the same. But knowing that this is about more than just him and me, knowing that our commitment resonates in eternity, and knowing that God is for us and with us in this brings perseverance, and levels of joy that would otherwise be unknown. For I find that each time we come through a difficult path, our relationship is deeper and stronger than before. If we had given up we would not have known that deeper love. We would have lost out on joy.