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.

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.

Honouring a legacy?

This week, one of our very long standing church members died, and had a funeral that celebrated her long and incredibly full life. It was very moving, to reflect on all that she did, and she was described as a pioneer of her time. One of our challenges as a church, is how we live up to her legacy.

This started me thinking about what we leave behind us. None of us knows the number of our days, so how do we make them count?

I found a quotation from the 4th century Greek statesman Pericles:

‘what you leave behind is not what is engraved in stone monuments, but what is woven into the life of others.’

I started writing because I wanted to honour my late husband’s life. Somehow, telling his story, helps us as a family, to find meaning in what has taken place, and to honour his legacy.

Part of this is shaped by a desire to raise the profile of the need for more effective care for veterans. The damaging nature of the long term emotional, spiritual and physical injuries after serving in armed conflucts, cannot be over estimated. And the impact on relationships and families can be immensely destructive.

It also feels important to raise awareness of the need for more research into epilepsy, and the exploration of possible new treatments. If some one’s seizures are well controlled by medication that is great, but if their epilepsy is intractable, life is challenging.

To honour Colin’s legacy, in the midst of these two strands, I also want to give thanks for people who have supported and prayed with us. God gave us kind people around us, guided our path, and sustained us on the darkest days, granting us all we needed.

And so Colin’s legacy is that even in the midst of trauma and disability, we are not to give up, that God gives us strength each day, leads us to helpful people, enables us to laugh, helps us find an internal resilience that we did not know we had. Every day of life is precious. God gives our lives a quality of love and grace that is life changing.

At times, I question writing about all this, because it makes you so vulnerable. But this feel like our purpose to try to encourage others,, and the best way I can honour Colin, so I pray for strength to do so, especially in these days leading up to Remembrance.

In Ephesians chapter 5, verse 2 it says: ‘ live a life of love, love others as Christ loved us’ The legacy of Christ, is indeed love, and so sharing that love, truth and grace with others, is our greatest calling, let us pray.

Gracious God, forgive us that we often don’t think what our spiritual legacy is to the next generation. Lord Jesus, may we be inspired by generations of Christian people, who have faithfully and creatively followed you. May our life’s purpose be to honour the legacy of all who have gone before, and may your holy spirit guide us as to what to do, as we seek to pass on your life changing and transformative love and truth to others, Amen.

” a million thankyous”

On behalf of Andrew and myself, I want to thank everyone so much who attended, and showed an interest in our booklaunch ” Love Song for a wounded warrior“. We are so greatly humbled by your prayers and good wishes and comments, and are very moved by the support of so many.

The idea of this book was to honour the memory of my late husband Colin, who wanted his memories and recollections of his time in military service, especially northern Ireland, to be published. Last night at the booklaunch, I read out one of his poems, and I was so heartened by people really listening to what it was about, and relating to the horror of war. Just in that one part of the meeting alone, it fulfilled so much of what we hoped for.

We were also grateful for the words of Shirley from Epilepsy Connections, who spoke so caringly, and with such insight as to the situation of so many people with epilepsy in Scotland, and the struggles they face. And to have Allana with us was so lovely, from the Coming Home centre, who has such a passion to support veterans and their families on their return to civilian life. The work of these two charities is inspirational and they go the extra mile to help others.

We were delighted that the Moderator of the General Assembly of the Church of Scotland, Rev Dr Martin Fair could come along, and for his words of encouragement and grace. We also heard the words of Rev Jock Stein, who edited and published the book, and who was such a brilliant support in bringing the book to this point.

Andrew speaking about the way his dad’s disability affected him, gave very real insight into the difficulties that can be faced by children of veterans. After a time of questions and answers, the meeting came to a close, but it was such a wonderful time to hear people acknowledge Colin’s story, and both he and his parents would have been so pleased.

” In my end is my beginning”

The Four Quartets – TS Eliot

I was thinking of these words – how God can bring something good, even out of the most dark and difficult of circumstances, and praying that our of this book, might come fundraising, and also conversation about how to better care for people who are veterans, people with epilepsy and brain damage. The conversation seems to have started already, and I hope that out of Colin’s life and death, God can bring something with will bless and help others.

An enormous thank you all, for participating in this process with me, whether near or far. Our society is under such pressure just now, but anything that can help us to think about how we can support people with complex needs and difficult behaviours, is surely central to that question about what it means to love and care for some of the most vulnerable in our society. I will keep blogging, because somehow I always seem to have something to say! But just now, thank you from the bottom of our hearts.

Dear God, we give thanks for Your faithfulness in difficult days,

For the support of friends and family, for moments of connection and care,

That out of despair and pain, can come possibilities of new beginnings.

Lord Jesus, bless all those today, who are veterans or veterans’ families,

Who are carers for people with epilepsy or disabilities,

Grant them the right support, respite, wise guidance, humour and love

In the midst of the challenges of every day life,

And guide and sustain all those who seek to support them, Amen

“Love Song for a wounded warrior”

Dear friends, thanks so much for reading this. Like so many people, I have a desire to write, to connect. I want to tell people about the difference that Jesus’ love makes, and to encourage others on the journey through life.

You may wonder what the strap line ” including love song for a wounded warrior” means, and so i would like to explain a bit more, although it takes all the courage I can muster.

My husband Colin died just over two years ago, in April 2018 after a long time of ill health, as he had intractable epilepsy. Many People have epilepsy which is well controlled – but not him.

Colin had an head injury, sustained on active service, and this was the cause of his seizures. He had quite a journey in military and civilian life, seeking to live with his injury and its consequences. Colin wrote reflectively about how he felt, fragments that give insight as to some of the experiences that he had, and he always wanted these published.

To give his writings a framewoek, I tried to provide a context for these writings, about how Colin’s disability affected his family, as we sought to love and support him. These writings, including a piece from our son Andrew, are the material for our book ” Love Song for a wounded warrior” which we have written about Colin’s life – a story of sorrow, humour, frustration, anger, joy and thanksgiving!

We offer this story to the world, even though I am full of trepidation – it feels like a very personal story to share. Yet I am also relieved to finally be able to fulfil Colin’s wishes and tell his story, and I pray that through this story, others might be encouraged – especially family and carers of veterans and people with disabilities, who can find that their road often looks bleak and rocky.

The things that helped us on our journey were God, prayer and encouragement, family and friends, music, forgiveness, understanding, medicine, oases of care of the way, and the knowledge that God never forgot us. These things were often all intertwined. PTSD symptoms added to the melee, and added an additional layer of confuson to deal with.

The booklaunch will be on the 24th of June on zoom, and I am prayeful that these writings might do some good- to encourage another family to persevere, to remind people that every story is significant, to raise awareness of issues for veterans, people with epilespy and their families, and to raise funds for charity. All proceeds from this book go to Epilepsy Connections, and the Coming Home centre in Govan. More to come on this…….

A prayer – Dear God, the bible is a book of stories of ordinary people

Who placed their trust in You, who made mistakes, who struggled, who fell down, and then stood back up,

Help us to reflect on our own story, to notice all You have done, and to be thankful,

Help us listen attentively and tenderly to each other’s stories, with prayer and deep care,

As You have called us, Amen.