The frustration of invisible disabilities

Disabilities, things we struggle to do, for whatever reason, can be so frustrating. They can be seen or unseen – but still hugely significant to the individual involved. My late husband for example, had a problem with proprioception – estimating depth. This sounds like a small thing, but it meant he had issues doing something as simple as pouring tea, because he would overfill it, and the burning liquid would go everywhere. It also affected his gait, as he couldn’t tell when his foot would hit the ground, so he would be uncertain of each footstep, and more likely to fall.

I have been listening to people with disabilities recently, and some of the indignities endured. We think we are a modern inclusive society, but if you have ever used a wheelchair you discover that this is not true. A floor is uneven, a pavement kerb is too high, and even a disability friendly toilet, doesn’t seem to mean you can turn round in a wheelchair. There are so many obstacles to keeping your dignity. The only consolation, is that there are also many kind people who are ready to help out and go the extra mile.

For disabilities not able to be seen, the issues are just as distressing. Whether it is a neurological condition or a lung problem, or any one of many health conditions, people are often not noticing or dismissive. We live in a society that is often so judgemental. A person I knew with Parkinsons for example, was often treated as if they were drunk, and given no help if in difficulty.

People shouldn’t have to be expected to explain themselves in order to be treated with respect. There are perhaps some practical possibilities of dealing with specific situations. One person talked of having to go out of a cafe to the toilet for example, and they come back and their table with their fresh coffee and not eaten food is cleared. Can we have a nationally recognised card, to leave, to secure a place in a queue or at a table? We need better training too, with people perhaps having to spend a day in a wheelchair to see just what it is like.

In general, the deeper question is how to change people’s awareness and attitudes, to become a kinder more compassionate society. Then if we see some one struggle, instead of ignoring them, we ask how we might be supportive. It might be we can’t do anything, but the knowledge of a sympathetic person can go a long way.

In Colossians 3:12b it says: ” you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness and patience.”

This is the best way to live, to choose every morning to be kind and compassionate, to show the same mercy and patience as Christ has shown to us.

Gracious God, forgive us that we often react to people who seem different with fear or prejudice. We are too quick to judge someone who takes their time, or is boisterous. Lord Jesus forgive our lack of curiosity and patience. Teach us how to love, with the mercy and forgiveness You show us. May your holy spirit give us insight, and to teach us how to accept and value others, as beautifully as You do us, Amen.

Legacy of love.

Today is the anniversary of the booklaunch of ‘Love song for a wounded warrior’. I am so grateful for all who have been so supportive, prayerful and understanding to our story. That has made such a difference.

I started writing Colin’s story because I was journalling. I have kept a prayer journal for many years. When Colin became too unwell to complete his writings, I wanted to use my writings to give context to his words, to try to explain that they were fragments of his experiences, because over time to lost the capacity to relate his memories. I hope to eventually feel a sense of completion to have honoured his wishes in this way. Thankyou to all of you for helping me do this.

One of the things I learned about Colin’s complex military traumas was that he felt better when he told his story, was heard and understood. He felt alive telling stories about his experiences, whether it was a critical incident or a car bomb. And so there is something so powerful about sharing something of your interior life, and being heard, even if just by one person.

For me, Colin has left a legacy of love. He showed me what courage looked like, humour in the face of distress, defiance against the odds, faith in no man’s land, in a bleak and desolate territory of nothingness.

So, now I have to ask God to continue my healing, and remind me of my purpose to let these experiences enable me to in turn support others. I want to use my legacy learnings for good in the world. God is guiding me through this process, and I am so grateful. One of my learnings is that I really enjoy writing, and I want to continue this, at least for this season. I think I want to write some more contemplative pieces also, so there might be more variety in what I offer.

In the ‘Four Quartets’ T S Eliot wrote ‘ in my end is my beginning’. The circularity of life cycles is striking, and I pray that for all of us, in the midst of grief and painful endings, new buds and new life will emerge.

I often go back to the words of Jesus in John chapter 12:24 ‘ I tell you the truth, unless a grain of wheat falls to the ground and dies, it remains a single seed. But if it dies, it produces many seeds.’

This helps me make sense of life, for sometimes dreams, familiar ways of thinking, even people have to die. But in the mystery of all things, there gradually emerges new life and possibilities.

For anyone struggling with trauma, fear and grief, I desire healing and new possibilities for you. It is a difficult road, but our Saviour walks with us, and we explore the legacy of His love forever.

Gracious God, You know all things, You love us, and redeem our life from the pit, and crown us with love and compassion. When we are in that dark pit however, we grumble and complain and cry out to You, for we feel scared and alone. And through the cross, Lord Jesus, You offer us cleansing, and forgiveness and acceptance. You embrace us with the blanket of your love, and keep us safe. May we humbly receive your grace. Give us courage to tell our story, and to find our healing. May your holy spirit help us honour legacies of love, and use our learnings and insights to he an encouragement and blessing to others, Amen.

Transforming wounds into scars.

There is a quotation from the American military leader Douglas MacArthur ‘the soldier, above all other people, prays for peace, for he must suffer and bear the deepest wounds and scars of battle.’

This week, I witnessed the aftermath of a road traffic accident, where a car hit a cyclist. The cyclist, a young man had a gash to his head, and was bruised and on a state of shock, and taken off in an ambulance.

Seeing his injuries, got me in touch with that feeling of what being wounded can feel like, the initial surprise, feeling faint, the pain, the blood. It is such a debilitating thing, where you feel helpless and vulnerable.

For many people, including veterans, our wounds are not just physical but also emotional and psychological. Past traumas can stop you functioning, as powerful memories replay in your mind, paralysing you, and stopping you function. Triggers, which bring buried memories back, can cause reactions which look random, but which are part of people’s coping strategies, and these strategies then often become part of the problem.

How can these wounds be healed? If it is a bodily injury, a wound needs to stop bleeding, for it to be cleaned out, and then for healing to take place. Wounds can be prone to infection, so sometimes they need to be cleaned out again, for ointment or antibiotics to be used. The healing can be itchy and uncomfortable, but eventually a scar is formed, at first looking angry and raw, but eventually fading.

For emotional and traumatic wounds, there is a similar process. There are practitioners in traumatic therapies, that can help people acknowledge the terror and the pain, and start the journey of cleansing, forgiveness and healing. The book ‘ The body keeps the score’ by Bessel van der Kolk demonstrates the range of possible neurological and community based programmes that can help.

In parallel to this, as a Christian, the balm of Gilead comes to mind. In Isaiah chapter 1 verse 6, the prophet describes a broken nation: ‘from the sole of your foot to the top of your head, there is no soundness, only wounds and bruises and open sores, not cleansed or bandaged or soothed with oil.’ In a similar situation in Jeremiah in chapter 8:22 the prophet asks ‘is there no balm in Gilead?’ This balm was an aromatic and antiseptic medicine, to bring healing. The balm is often interpreted as the soothing and restorative love and presence of Jesus Himsrlf.

To transform wounds to scars, is a surprisingly raw and long process. It can involve prayer, the transformative healing power of Jesus Christ, and an understanding and loving community around you. It can involve wise and sensitive trauma therapies which allow the wound to be cleansed, and for deeper and lasting healing to take place. The scars will always remain, and they are not something to be ashamed of, but they are part of our story.

Gracious God, as a world we are so broken, and we hurt and are in pain – so much violence and cruelty. Lord Jesus Christ, thankyou that You are the wounded healer, and that You come alongside us, and remind us of the scars you bear. May Your Holy spirit guide us to individuals and communities that are supportive and wise. May despair and darkness never overwhelm us, for there is always forgiveness and love and hope. May the oil of Gilead flow, and bring healing to all haunted by traumatic pasts, to transform open wounds into healthy scars. May we all be channels of your grace and peace to others, Amen.

In memory of Colin.

On the alert- a carer’s relationship with their phone!

When we have a loved one who is vulnerable or unwell, the sound of your phone becomes crucial. Whatever you are doing, your phone is always nearby, and you are on edge listening for it to ring. Whether it is a child struggling at school, a loved one in a care home, or a relative in hospital, your phone is that conduit of the latest information, and as such becomes central in your life.

When the phone goes off, my first instinct was to worry, what has happened, what can be done, what decision needs to be made. It is like the rest of the world is on hold in that moment, as you digest this latest twist in their care, and what it might mean. Time slows down, and is almost still.

I love when the person on the other end of the phone understands that, and starts their sentence ‘ now I don’t want you to worry, but………’ It just seemed so humane, and gives you time to adjust to what was coming next.

For my late husband, phonecalls could sometimes mean he had a seizure, an infection, or in some instances that he needed to go to hospital. Sometimes I needed to go straight away, morning, noon or night, and it became the norm for me to be ready to do so. It only had to happen now and again, for me to be on high alert every time I heard the sound of the phone, as I never knew what to expect.

I don’t know if my relationship with my phone will ever be normalised. I believe that Colin is now safe with Jesus, and so I am not going to get emergency calls about him in the middle of the night. However, when the phone goes……..

And so in every circumstance, I need to trust in God, and to seek to be calm. In psalm 28 verse 7 it says ” The Lord is my strength and my shield. I trust Him with all my heart.’ As we all learn to trust God more, may we panic less, even when the phone goes!

Gracious God, we thank You for all who care for others, and do so with love and grace. We thank you for people on phones, who quickly communicate vital information. Lord Jesus, You encircle us with Your love, You communicate your care for all who are struggling. May we learn to hear the phone ring without being fearful or catastrophising. May Your holy spirit guide us, and bring healing, and peace. Amen

Seizures and grace

My late husband Colin had epilepsy. It sounds like such a little word, but it had such major consequences. He was unfortunate, in that his epilespy was intractable, and so he would have 4-6 tonic clinic seizures a month, always when he was asleep.

A seizure would start with a loud guttural shout, the change of colour of skin and shaking of limbs, and then his body becoming more limp, and the gradual restoration of a more rhythmic natural breathing occurred. It could appear pretty scary. Colin was again unfortunate, in that he had long post-ictal periods, so his brain function would not be fully restored for days.

My heart goes out to all who live with this disability. I know that many people have epilepsy that is well controlled by medication, and they have a good quality of life. However for those whose epilepsy is more difficult to manage, my prayers are especially with you, your family and friends.

I guess this is where the grace comes in. It seems like grace, when people around you are understanding. Grace when people call an ambulance when some one has a seizure on the street. Grace when people choose not to walk by on the other side of the road.

We were fortunate too, to have good support from various organisations, including Epilepsy Connections. This organisation provided great practical support, as well as a brilliant befriender. From another similar organisation, we found another support worker, who understood the nuances of how seizures can affect you, and was a brilliant help to Colin, even in demanding and unusual situations. So much grace.

Sadly I know from much personal experience how difficult it can be to support some one living with epilepsy. However it it certainly never dull, and teaches you much about love! I hope that as a society, we might be better informed about seizures, and more open to learning, and being supportive, and I am grateful for all who work in this difficult area of medicine and social care.

In the bible, Jesus often met people having seizures, and was able to heal them, as in Matthew 4: 24. My prayer is that there would be many opportunities for healing for people with this condition.

Gracious God, You want all people to be well, to be loved, to be at peace. Yet in our world we see such suffering and illness, including epilepsy, cancer and other diseases and conditions. Lord Jesus bring healing, through Your love and power, through medicine, and through wise individuals, willing to go the extra mile. Holy spirit, when people are ill and distressed, by your grace, may there always be some one there to care, to helpfully intervene and to bless, for in that way Your kingdom comes, Amen.

After bereavement, who are we?

I used to think that once you lost some one you loved, that you were sad for a while, and then felt better. However often, grieving is such a complex process, and can be confusing and circular in form. You often seem to go round in a circle, rather than making tangible progress.

One of the things I struggle with, is about identity. Often in a marriage, you get to know the other person so well, you almost become one. And when the two people are no longer together, you can’t remember who you were beforehand. Another dimension can be if you are a carer, as your energy in in supporting your loved one, and your motivation and focus is their wellbeing. When that person is gone, you miss them profoundly. But you also can realise that you have then lost your self too. The simplest decisions seem too hard.

Part of the grieving process then, is allowing your wounds to heal, and then seeking space to find out what is left in who you are. It can be hard to remember, and the old ‘you’ is gone anyway. So I pray for God to refashion me into whoever I am meant to be now, a bizarre mix of genetics, memories, learning and likes and dislikes, limitations and scars.

We can work hard on trying to work out our new priorities, praying for inspiration, seeking wise counsel. Yet I think perhaps the best thing, is to pray for God to shape our lives, to remind us that He still has a purpose for us:

In Isaiah, the prophet writes ‘Yet you, Lord, are our Father.
We are the clay, you are the potter;
we are all the work of your hand.’ Isaiah 64:8

At times that can be what we feel like- a clump of heavy mishapen clay. Yet God is not finished with us yet, and can use even our cracks and blemishes, to make something beautiful. Though His spirit, may we each find our God given identity as His beloved child, and have courage to live in this truth, and to find our way forward.

Gracious God, You tell us in Your Word, that we are made in your image, and that we are fearfully and wonderfully made. Help us remember this when have many questions, and we feel lost and disorientated. Lord Jesus bring healing to us, and in time help us rediscover our true self. In this season of Pentecost, may your Holy spirit bring life to dry bones, so that we might live again. In Jesus’ name, Amen.

The shenanigans of seagulls.

Yesterday I travelled north (before the new covid restrictions were announced) and was walking along the streets in the town in which I had newly arrived. All was going well till splat, and a present arrived from a passing seagull. So there I was, in the middle of the street, trying to remove bird splatter from my hair with dollops of hand sanitiser. Not the best moment in my day. I got some very strange looks.

It reminded me that I have often found that in times of stress, trauma or bereavement, other things often go wrong. It could be a little thing, like forgetting something, or getting your jumper sleeve caught in the handle of a door you were endeavouring to go through. The week after my husband’s funeral, I took my son to the cinema, in the forlorn hope of distracting ourselves for a moment, and I managed to break a bone in my foot. In the cinema! How is that even possible?

I think though if you are a long term carer, or have been bereaved, so much of your brain is coming to terms with what happened, another part becomes less active, and you can become accident prone. The stress of everything on your body, seems to show itself in clumsiness, illness and even pantomime situations where ridiculous things happen. A grief reaction I hadn’t been aware of, is to laugh hysterically at something. I think it was the alternative to crying, but it looked a bit strange. I still do this!

I just want to encourage anyone who is going through difficult days, when things seem to go wrong around you. It can be so frustrating. It doesn’t last forever, or hopefully at least not in such an intense way!

In the midst of all the antics that happen to us, and around us, I remember the verse from psalm 3: ‘You, O Lord, are a shield around me, my glory, the lifter of my head.’

When we feel besieged by adversity, God shields us with His love. When we are down, God lifts up our head, and gives us hope. What a Great God we have.

Let us pray, Creator God, we thankyou for all the creatures in this world, even seagulls! We know that when we feel sad or under strain, it can seem that everything is going wrong. Lord Jesus, may we know your understanding presence with us, and find strength, and be able to find a way forward. Holy spirit, console us when we are discouraged, help us to be patient, and to keep trusting, Amen.

Medication in the sock drawer.

There are just so many anniversaries in life. Just when you have worked your way through one, along comes a other.

Today is three years to the day since Colin’s funeral. Some of the memories are still so vivid, the people who came, the sound of the singing, the positioning of the coffin. My son Andrew and I are so appreciative of all the people who were so supportive and prayerful at this time. It was such an expression of care, at a time of pain and loss.

Going through times of grieving is so complex, even after three years. I think other losses in these years exacerbate the process. One day you think you are feeling a little better, another day you suddenly hear a piece of music or a letter comes in the mail, and it brings waves of unbidden emotion.

There is little logic in it. As the grieving person, you begin to realise that you are not only missing the person, but also your old way of life together. You also begin to realise that habits you adopted, especially to support a loved one who was unwell or disabled, are no longer appropriate.

An example of this, was that one of the conditions my late husband had was epilepsy. This meant that anytime we went anywhere, the first thing we did was check we had his medication with us. If we were going abroad, I would have it in my hand luggage as well as the cargo hold, just in case. It is drilled into my head to take Colin’s medication everywhere I go.

So this is not working for me now! I need to retrain my brain not to think of this. But it is very hard. And so my confession today is that I have kept some epilepsy medication in my sock drawer, just in case. Just in case of what, I don’t know, but it it just one step too far to dispose of it. In my head I know this is ridiculous, but my heart just doesn’t want to let go.

So when people say they are still struggling with grief, even three years on, please be kind. The multilayered significance of the loss of of the person, their life, their life together, and a way of living, is so hard to articulate. There are so many decisions and accommodations that you make in life, that then have to be relearned. It is a slow, laborious process of reformation, but God strengthens us and gently leads us forward, for He shows mercy to the sorrowful.

‘God heals the broken hearted, and binds up their wounds.’ Psalm 147:3

Gracious and Eternal God, we give thanks that You understand our hurts and sadnesses and convoluted thinking. Lord Jesus, thankyou that You are gentle with those who are sorrowful, and heavy in heart. Holy spirit, help us to become unstuck from repeating old ways that were so important in the past. Lead us from grief and old patterns of thinking and being, so we can find healing and freedom to be our true selves. Amen.

Broken, beloved and blessed!

I adore Easter Sunday! I used to get stuck at Good Friday, as I contemplated Jesus on the cross dying for my wrongdoing, saying ‘Father, forgive’ even in the darkness and pain. The love and amazing grace of our Lord still humbles and astonishes me every day.

However, I have also learned to appreciate the difference resurrection makes, as I think of the women at the tomb, and the words of the angel ‘ He is not here, he is Risen’ Luke 24:6. The power of these words are breathtaking.

I am going to focus on Mary Magdalene, someone who knew Jesus well, who was described as having ‘ seven demons’ in Luke chapter 8. It is difficult to interpret exactly what that means, but at the very least it means she was troubled or even disturbed. But Jesus healed her, and she became his devoted follower.

So in many ways, Mary went through a time of brokenness, when she was upset, mixed up, distressed. And Jesus helped her find peace. But when she watched her beloved Lord be treated so cruelly, mocked, whipped and beaten, she must have felt so distressed once more, for it seemed that their dream of working for the kingdom of God on earth had died, and their hopes were in smithereens.

In John chapter 20, we have a narrative where the Risen Jesus speaks directly to Mary, and calls her tenderly by her name. And she tries to cling to Him, but he says it is not the time, for he must ascend to His heavenly Father. The whole encounter between them however, speaks of Mary being beloved to her Lord. She is loved and cherished by Him. There is such a depth of beauty in these words, that reminds us that this woman, who was once troubled and seen as an outcast in society, was now accepted and valued.

So Mary was broken, beloved and then blessed. She went to speak to the others, with reverent excitement and enthusiasm saying ‘ I have seen the Lord’s. She has witnessed a miracle, and feels blessed and ready to share what she has seen with the whole world.

This spiritual journey is so relevant to all of us, for we are all struggling or broken without God, but then spending time with Jesus brings healing and an experience of the depth of God’s love, that is life changing. And we are blessed so richly, that we are motivated to go out and share our story.

In these days of resurrection, and reflection on the Easter story, may we all find hope and healing and love, so we can travel from brokenness to wholeness, from estrangement to belovedness, from alienation to being blessed. God desires the best for our lives, so may we be open to all He has for us to receive.

May we pray ‘ Risen Lord, as you appeared to Mary, please come to each of us, call us by our name, remind us of your healing power and purpose for our lives. We may have gone though dark days of illness, trauma or grief, but You are still here for us. Speak tenderly to us in our brokenness and tears, and remind us that we are beloved, treasured by You, and that You want to bless us. Holy spirit, may we be healed and blessed, so we in turn might be a blessing to others. Empower us to do your will, and be a channel of your peace in this world, Amen.

Painting and dancing!

Today has been a lovely, dry, spring day, and I decided to paint a wall in the garden. That sounds quite normal, but I had my music on as well, and was listening to the Christian band Hawk Nelson- songs like Diamonds, Parachute and Never let you down. They are such great songs of faith, I couldn’t help but dance. I think I had too much paint on my roller, and I ended up a bit painty, as did the grass, the bush and one or two other things. I think it was quite creative, but rather messy.

Next month will be the third anniversary of my husband’s death, and it occurs to me that I still feel guilty for dancing to a song. Some one said it was ‘survivor’s guilt’ that you feel it is not fair to enjoy music when your loved one can’t. It is a way of thinking that is hard to let go.

The grieving process is so lengthy and so complex. You think you are coping with one thing, and then something else starts bothering you, or worse still, something from the past you thought you had worked through, comes back in a new form. It can be so disheartening and exhausting.

Every day, we have to choose once again how to live. We are often sad, or struggling with difficult memories. Yet I believe that part of the healing process, is how to learn to be thankful to God all over again for each day of life. And sometimes that means laughing hysterically, or being still for a long time, or dancing when you are painting! God wants to set us free from grief and sorrow, even just for a few moments. Whatever we are going through, may we all know these moments in life.

We remember God’s promise in Isaiah 61:3

‘ to all who mourn in Zion, God will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair.’

Let us pray, there are so many reasons we may feel sorrowful- illness, the strain of the pandemic, the death of a loved one, and it can feel that the weight of heaviness and darkness will always hang over us. Lord Jesus, You remind us that from the pain and suffering of the cross, came forgiveness and new beginnings. Holy spirit bring healing to us, so that in moments, we might have hope and so we can still dance for joy in your presence, Amen.