Thanks

The walk4andy has of course been a labour of love but I could never have achieved it on my own.  This is my opportunity to thank all those who have supported me (I just have to hope it doesn’t sound too much like an Oscars acceptance speech!) and it goes without saying that I wouldn’t have got very far at all if it hadn’t been for the man who built the Wall in the first place …

Publius Aelius Hadrianus

Thanks to all those who have joined me on my walk: Julie, Ian, Nathan, Erica, Scott, Tamara (and Charlie the greyhound!), Tony, Sue, James, Benjy, Hilary, David, Jonathan, Benjamin, Wendy and Val

 

Thanks to those who have helped with lifts and being around during the week: Allison, Will and Dan, Yvonne, Chris, Catherine and Anna, Mags, Matthew, Daniel and Lucy, and especially Barry (and Zac!)

Thanks to those who have given us hospitality, especially Michael and the folk at Carlisle Cathedral, and Benjamin and Stephanie, Elizabeth and Matilda.

Thanks to those I’ve met along the way – Michael, Dany, Clare and countless others whose names I never found out.

Thanks to Andy at the ATC who lent me his camel pack so I didn’t have to stop to drink.

Thanks to my Diabetes team at Leicester General who gave me my continuous glucose monitoring kit making it so much easier to avoid the hypos.

Thanks to Geraldine’s chiropodist who provided a kit for my feet which amazingly I haven’t had to use at all!

Thanks to those who have been praying for me, especially everyone back at St Denys who have been walking and praying in solidarity.  I have felt held in a way like never before.

Thanks to those who have been reading my blog and sending comments and words of encouragement.  It has meant a great deal to me.

Thanks to those who have supported by sponsoring me.  That is the most important part of this whole journey and I am gobsmacked to have raised nearly three times my target of £1000.  Thank you thank you.

And thanks to my family for putting up with me, not only through this week but through all the planning and practice walks, for agreeing to holiday in Carlisle and Derbyshire last year so that I could do some walking.  Thank you for your endless patience and your support this week.  To Erica and Hilary for your companionship on so much of the walk, and to Wendy for encouraging me and humbly getting on with the most boring job of bag-carrying, fetching and dropping off.  I know you had lots of tea and cake in pretty places to make up for it, but it did mean you had to get up when we did!

 

And finally, thanks to Andy, without whom I would not be the person I am today and would never have found the inspiration and determination to do something like this.  I laughed out loud when I read a comment from someone who knew Andy very well saying ‘I can’t help thinking Andy would want to know why you’re walking that far when you could drive!’  So true!  But I hope that this will go some distance to helping others with his condition to get more support and maybe help those who are working to find a cure for VHL.  Huge thanks to VHL UK/Ireland for all the work you do for families like ours.

 

 

My mum

‘You knit me together in my mother’s womb’ – words from the psalm set for evening prayer yesterday, which I was able to say in the beautiful church in Corbridge after finishing day 8 of my walk4andy in the company of my eldest daughter and my mum.

My mum came up to join me last weekend and has been able to do part of the walk with me.  She is a great support and has even raised sponsorship herself.  But yesterday was the first opportunity I had had to really talk to her and ask her all sorts of things about what it was like when Andy and Dad were both diagnosed with VHL.  I was around Hilary’s age at the time and don’t really remember much at all.

As we walked side by side, Mum told me stuff today I had never known, about the time when Andy, aged 11, was in hospital next to Dad, both of them having cryotherapy treatment on retinal tumours.  And the time she went to Manchester with Andy about ten years ago to a VHL support meeting for those with VHL and their carers.  At that stage he was still reasonably able, and meeting others at later stages of the illness came as a huge shock to them both.

I knew my mum was brave but hearing her talk about those times filled me with a whole new appreciation for her courage and determination in the face of nearly losing both her husband and her son.  Now as a parent myself, I can’t imagine the pain of seeing your child suffer like Andy did.  He probably wouldn’t have realised at 11 what VHL meant, but Mum would have had a much better understanding of how it might progress which must have been terrifying.

She has been witness to more operations and emergency procedures than she can count, she has visited hospitals all over the country and sat in on numerous consultations bearing bad news.  But she also speaks so highly of the nurses on the wards who cared for Andy, how they became like family to her and remembered her each time Andy was admitted.

On her 60th birthday!

Mum has held close all of that heartache for such a long time.  More than ten years ago she nursed my stepfather through an agonising few months as he died of cancer at just 54.  And then shortly after Andy died in 2013, she also lost her mum, my grandmother, who she had been caring for.

How anyone can go through so much and still want to open their heart to the risks that come with love, I cannot guess, but it was an absolute privilege to be able to marry her to her new husband Barry last January.  This has been a painful journey for me but it is as nothing compared to the journey my mum has been on.

Mum and her boys in 1999 at my wedding

Andy, Dad, my stepfather and grandmother are all now on that farther shore, safe in the arms of the God who created them and loved them.  As Mum left last night before she travels home to Leicester this morning, we hugged one another tight, struggling to hold back the tears, like a pair of shipwrecked sailors clinging to a piece of driftwood as they are tossed and thrown by the waves around them.  But maybe, just maybe, we can see a bit of land coming into view now, something to look forward to and give us hope and peace.

God bless you, Mum!

 

 

Burdens laid down

Is it wrong that I’m enjoying this?

Heavenfield

Ok, this has been the hardest post to write so far and so should come with a health warning!  The walk4andy was meant to be about Andy, about celebrating his life and doing something positive in his memory.  And yes, I am spending a lot of time thinking about him and talking about him, but if this was meant to be a hardship endured out of love for him or for some other wonderfully holy, altruistic motive, then I hate to disappoint but that’s not how it really is.

 

I have loved the walking and the fresh air, I have loved the stunning scenery and the time to think, I have loved the company and the conversation, the sense of achievement at the end of each day.  But this isn’t how it’s supposed to be, is it?

It’s not the first time I’ve felt a lot of guilt on account of Andy…

It started when I was just a few years old and managed to cut off the end of his finger in the chain of his bike.  Oops!

Then there was the time I hit him in the eye with the cricket ball, chased him round the house with a pair of scissors and there was the ‘sleeping bag’ tobogganing down the stairs incident which left him with a bleeding head wound!

But as we got older, and Andy was diagnosed with VHL, I too was taken for regular testing, put through CT and MRI scans, blood tests, eye tests and so on to make sure it was caught early should I too develop VHL.  I was well aware that Andy was ill but not really how that might impact me, but it felt like a shared experience to some extent at least.

Around the time I went to university I was offered the option of a blood test.  The faulty gene had been identified and I could have the DNA test to see if I was likely to develop VHL in the future or at risk of passing it on to my children, not something that was high on my agenda at the age of 18.

The test came back clear some time during my first year in Cambridge and I still have the letter telling me the news in a very brief and official kind of way.  I’m quite surprised I kept it, as it didn’t really mean a lot to me then.  I just carried on with all the fun of being a student!

It has only been later in life, as I’ve gone on to get married and have children, to work and make friends, to meet others whose lives have been affected by complicated illness or family tragedy.  Over the years, the guilt began to take root – why Andy?  why not me?  Apparently, it was 50/50 either way.

There was a part of me that was relieved when I was diagnosed with diabetes at 28.  Finally, my life wasn’t the perfect world I thought it must seem to Andy, and I had my own inherited illness.  I’m so ashamed that I felt that way but it’s the truth.

Of course, when Andy died, it was worse.  Much as I missed him, the pain at losing him was mixed again with what I guess could now be called ‘survivor’s guilt’.  It could so easily have been me that had had VHL, that had died at 38, leaving Andy to mourn my passing.  What would he have done?  How would he have marked the ending of his brother’s life?

Guilt is something Christians can be particularly bad at handling, which is something of a surprise when you think that our whole belief system is built on God’s grace removing our guilt and sin, setting us free through Jesus’ death on the cross from those burdens we like to carry around with us.  The Bible says that ‘as far as the east is from the west, so far ha he set our sins from us.’

As I walk from the west coast to the east, I am learning to see that it is not my fault that I was the lucky one, but that I can choose what to do with the life that I have been given now, the post-40 life that Andy will never see.  The culmination of 3 and a half years working through all those emotions is the walk4andy.

This is why it matters so much to me.  Yes, it is an opportunity to do something positive in his memory but, perhaps selfishly, it is also about freeing myself from that burden of guilt and finding my own path to forgiveness and freedom so that I can do what I know in my heart Andy would have wanted which is for me to squeeze every drop of hope and joy and love from the years of life that God has granted me in his unfathomable wisdom.

Words from John Bunyan’s Pilgrim:

Must here the Burden fall from off my back?

Must here the strings that bound it to me crack?

Dad

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Dad with his two beautiful boys back in the late ’70s judging by those sideburns!

I’ve written a lot about Andy and because he died so young from VHL, I think his story is particularly moving.  But he wasn’t the only one in the family with VHL.  Although it is rare (1 in 36000), because it is genetic, when it hits one person in a family, it’s likely to affect others too.  And in our case, it was Dad.  In fact, Dad had it first.

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Dad and Andy

A successful building society manager, member of the Round Table, active in the community, and with two wonderful little boys (!), Dad collapsed in his late thirties when I was about 6 years old.  They found a tumour in his brain the size of an egg which later turned out to be one of many, a symptom of Von Hippel Lindau disease.

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Dad and Andy in more recent years

My memories of Dad before he was ill are few and far between.  Instead, etched in my memory are the fear I felt when I saw him having a fit at the top of the stairs, or another time I found him lying on the kitchen floor, or when he passed out over lunch in Swiss Cottage in Leicester.  I remember how uncomfortable I felt visiting him at Addenbrookes when I couldn’t understand what he was saying, and I remember the painstaking slow process of speech therapy, the endless repetition of ‘The man walked up the hill slowly’!

For many years, sadly, Dad was something of a stranger to me, not least when he went to live with his mum, my grandmother, in Wisbech and the occasional visits felt like going to see a very elderly relative.  We dressed smartly and were on our best behaviour while Dad sat in his chair smoking his pipe and we drank tea out of Gran’s flowery bone china cups and admired her doilies or talked to the budgie!

But life changes, and as we grew up, we got to know him better.  He married again and that gave him a new lease of life and energy.  Despite the constant appointments and operations that he too had to endure, he was a determined and positive person, always keen to talk to anyone who would listen!

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Dad with his wife Wendy and a rather tired and grumpy Hilary after her baptism in 2008

We grew much closer in later years, and although I couldn’t share in his experience of VHL (or his love of snooker or cars for that matter!), when I was diagnosed with Type 1 diabetes, there was something we could share.  We would bore everyone else by comparing blood sugar readings, changes in treatment and carb counting.  Dad was fascinated by the flexibility I had with my pump, while he would still insist that he couldn’t have any sweet desserts and complained when the menu didn’t offer cheese and biscuits!

In fact, Dad said it wasn’t the VHL that annoyed him, it was the diabetes that he found much harder to live with and caused him more angst on a day to day basis.  In fact, it wasn’t even the VHL that caused his death in August 2013 but a heart attack while recovering from his latest brain operation.

As a boy, it was common for people to say I was like my dad, while Andy was more like my mum.  Of course, the reality is we are much more of a mixture of our parents’ genes and uniquely ourselves too.  But I am proud to be told I am like my dad now, complete with the terrible jokes that make my daughters cringe.  My dad, Michael Smith, was a remarkable man, who taught me above all what it means for God to turn our weakness into His strength.

 

 

Number crunching

Well, yesterday an anonymous donation pushed me past my £1000 target!  Hurray!

Thank you so much to everyone who has sponsored me so far.  I know there will be much more to come too.  You can go to my donations page and give to VHL UK/Ireland by clicking here.

Targets are all the rage.  We want to monitor and measure everything.  We see it in schools, in hospitals, in the workplace and even in the church.  It’s certainly something that people with medical conditions like VHL have to get used to – constant testing and measuring and monitoring.

I’ve had to get used to it too as a diabetic.  Several times a day I test my blood sugar levels and am given a number.  If it’s between 4 and 8 I feel good – that’s a success.  If it’s outside of those figures I can’t help thinking I’ve failed and I agonize over what I’ve done wrong.  Did I miscalculate my carbs?  Or underestimate my activity?  Did I have one too many pints last night?  What was hiding in that sauce?  Sometimes I can find no reason and that’s even more frustrating.

My healthcare team at the hospital have been great and have given me a new bit of kit to measure my blood sugars constantly while I’m walking Hadrian’s Wall.  Hopefully that will minimise the risk of hypos and allow me to respond quickly to problems so I feel like less of a failure.

For my 40th birthday my mum has bought me another bit of technology, a Fitbit Charge 2, and she has very kindly given it to me in advance so that I can use it in my preparation for the walk4andy.  I feel like my 13 year old daughter did when she got her new phone last week!  So many exciting features, so many more numbers to count and measure – my heart rate, steps, calories burnt or floors climbed.  But I worry too that I’m just setting myself up for more failure if I keep insisting on measuring myself in this way.  Aren’t I more than my HbA1c or cholesterol or Body Mass Index or my monthly income or school grades for that matter?

Need a few more steps to hit today’s target!

 

If we are measuring so we can celebrate progress, that’s great, and it’s definitely good to be able to see how much money is being raised for VHL.  But there are lots of things that can’t be measured.  I remember as a child worrying about how I could love both my parents and my brother the same, as if I had a limited amount of love to share out.  I cried with relief the day I realized that wasn’t the case.  I was free to just keep loving, confident that the well would never run dry.  The things that count can’t be counted.

Walk with a bear hunt …

Managed to get the whole family to join me for a 6 mile walk on Saturday.  We went from Great Glen out to Burton Overy and the sun shone for at least part of the time.

It was reassuring to find that it didn’t feel too onerous although there were some complaints …

Not least when our way ahead was blocked by a tree, maybe one that came down in storm Doris several weeks ago now.  ‘Going on a Bear Hunt’ was a favourite book to share with the girls when they were small and so what immediately came to mind were these words:

We can’t go over it, we can’t go under it,

Oh no! We’ve got to go through it!

Well, the girls tried to climb right through the middle of the fallen tree and just made it out with one or two scratches.  Wendy and I found an alternative route with a bit of ducking and weaving.  Rolo couldn’t see what all the fuss was about and trotted underneath!

I thought about Andy and the many barriers that blocked him from doing what he really wanted to do.  He was mad about cars and would have loved to be a mechanic but his health problems got in the way.  He trained as an electrician at college and would have been a brilliant one but was told that it wouldn’t be good for his head to be twisting and looking up all the time.  He lost his driving licence and his ability to work.  But he kept smiling.

I was inspired by his courage and his confidence that there would be a way through all that got in his way.  Certainly in later life his rediscovered faith made a difference to how he approached these things.  The way through may not be obvious and it may involve a few scratches and bruises but he wouldn’t let that stop him.  When he died I swore my life would be different because he lived not because he died.  So when it comes to the obstacles on my own path,  I won’t give up hope either.

Headway

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Headway are an amazing organisation that work to support people with all kinds of brain injuries.  Andy got involved with Headway Leicester in the last few years of his life and benefited greatly from their services.  Over the years he endured countless operations on his brain to deal with growing tumours, and while saving his life, the cumulative effect could be seen in his slower responses, slurred speech and increased physical disability.  It was an inoperable tumour on the brain stem which haemorrhaged the night he died.

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Andy on a Headway holiday

Not only did the support workers at Headway help Andy go on holiday, get out to the cinema, go bowling and do the normal things that he desperately wanted to do as a young single man in his mid-thirties, but they also gave him opportunities to rediscover his practical and creative gifts.  I believe that there is something hugely important about our creativity, that it is an essential part of what makes us human and made in God’s image.  I still treasure some of the things Andy made with the help and support of Headway…

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Andy with some of his creations

I dropped in to the Headway centre in Evington this week to drop off some flyers and was delighted to have the chance to meet a lady with VHL who is now being supported there.  Headway typically helps people who have had brain injuries, perhaps through accidents, rather than those with degenerative conditions like VHL.  I remember one of the staff telling me it was unusual because they were used to people coming in seriously ill and slowly recovering, whereas for Andy and others with VHL it was the reverse.  Like Andy though, this lady struck me as a remarkably strong and positive person in spite of her illness and once again I was humbled by the resilience of the human spirit in the face of life’s challenges and reminded of why I am doing all this.