Preaching this Sunday

This Sunday sees me do something that I’ve not done much of recently and which I’ve certainly not done since losing my sight in July. What might this be you ask? Well this might surprise a few of you but I’ll be preaching at our local Baptist church.

Yep that’s right the folks at Beeston Baptist Church have been brave enough to let me loose in the pulpit for the first time since I spoke there in May of this year. Those of you who know something of the journey we’ve been on as a family over the past few years will know that Erica and I used to be involved in leading a church plant in Northumberland and a major part of my role was preaching on a Sunday. so it’s not exactly a case of me having to do something i’ve not done before or which i’m completely new to. I may not be the best at it and I know my lack of practice will show but I do generally enjoy doing it and I do think God has given me a voice that news to be heard.

You would therefore think that I would be pleased to have been ask to preach and would be looking forward to putting my past experience to good use. Well in many ways I am, although it probably wasn’t the best idea to agree to do it at a time when our house is in chaos with building work and when Erica is busy all Friday evening and all day Saturday meaning I am on kid-duty!!! More significantly than all this however is the fact that it is the first time I will be preaching to a congregation that I can not see at all.

In the past I’ve never really been able to see much of what’s happening in the congregation whilst speaking, I have relied more on the verbal feedback which I always hoped wouldn’t just be snoring or bored shuffling noises. I have never been able to see people’s faces or gauge body language and so this Sunday will be no different. Bizarrely enough I have in the past also been told what good eye contact I have which has always made me chuckle! This Sunday however I really will be preaching “blind”. I am all too aware of how self-conscious i could feel and how awkward I might look and my worst fear is that I will lose my orientation and end up preaching to the bak wall or something random like that!

At this point many of you are probably telling me to stop worry what people think and that God will use me in my weakness, yes you’re quite correct, I do know that and I can testify to many times before when God has spoken through despite my weaknesses and I really do hope this is the case this time. As true as this is however I really am quite nervous about how it will all go and whether or not I’ll come away from it thinking “that’s it, I’m never preaching again”.

to be fair to the good folks at Beeston Baptist they are a very encouraging bunch and I do genuinely feel a sense of acceptance from them of who I am and what my disability means in terms of how I do things. I know that if I give my best and am true to what I believe I should say then the rest is ultimately out of my hands. yet as much as I know this I’m still somewhat daunted by the whole prospect.

why am I telling you this? Well partly so that if you’r the praying type you will spare some time to pray for me as I prepare my sermon and preach it on Sunday. Also I guess I want to cary on my vow to be honest with you about the ways in which my new reality affects every part of my life not least of all my faith and how I seek to serve the local church community.

Perhaps I need a rethink on getting a guide dog?

I knew from early on that one of the most difficult aspects of losing my sight was going to be getting out and about independently Although I wasn’t as confident and independent as I’d like to have been before the accident I nevertheless had got to a point where I was able to walk to and/or from work, go into Beeston to a choice of coffee shops or pop to the corner shop if I needed essentials like bread (or beer!). I was also relatively happy using a local bus particularly if it was one of the ones with talking stop announcements

Having been back at work full-time now for a couple of weeks I can safely say that the thing that has had me most frustrated is the fact that walking to and from work is no longer a pleasurable experience but instead is extremely stressful and I’m far more prone to bump into stuff, take unexpected detours along the way or generally get confused and arrive home worn out and on occasions close to tears. yes it is early days and I’ve not managed to have any formal mobility training and I know it can get better with practice but it’s safe to say I’ve been getting more lifts from Erica to / from work than I would like to and and less likely to go out on my own to meet someone the pub or coffee shop.

This has all got me thinking that perhaps I do actually need to rethink my thoughts on having another guide dog. I have had 2 guide dogs before and as mobility aids they are truly fantastic, they really do bring you a great sense of freedom and independance which I would love. There are huge issues though regarding the fact they are dogs the need to be looked after and having a dog in the house even a well-trained guide dog is another factor for us to consider as a family. yes I’m sure the kids would get to like the idea again and although neither Erica or I are or have ever been doggy people we did on the whole enjoy having a dog in the house.

So I have made a phone call to the local Guide Dogs office and I’m meeting one of their mobility instructors later this week. It’s still very very early stages, the process could take up to 12-18 months and I still don’t know if it’s the right thing for me/us but I’m at least wanting to open up the conversation again and see where it takes me. The one thing I do know is that I need something i hate having to rely on Erica I ate not being able to get some daily exercise from my 25 min walk which I could do at a decent pace. I hate having to be guided all the time. Yes I use my long cane but it’s just not as liberating or enjoyable experience as being out and about with a guide dog. so we’ll see where this takes me and watch this space for updates along the way.

I’m actually very fortunate..

One of my many flaws in life is being thankful for what I have got instead of moaning about what I haven’t got. I know I’m not alone in this and a big part of it is a bi-product of my visionary nature that can see how much things could be so much better in life if only we truly wanted them to be. It’s an area I’ve always wrestled with but I’m even more acutely aware of as I seek to live out my faith and live a life worth of calling myself a follower of Jesus.

In reflecting on returning to work and the new challenges I’m facing I have been reminded just how fortunate I actually am to actually have a job in the first place and not only a job but one that’s full-time, permanent, is reasonably well paid and which I know I’m quite good at. Ok so I didn’t leave school or University with a passionate desire to work as a Disability Adviser, I actually wanted to go into journalism but that’s another story, however I have spent most of my working life working in this area and on the whole it is a rewarding role with plenty variety and opportunities to develop new skills. What’s more there are some good perks working at a University such as being able to use Uni facilities and getting quite generous holidays; although before you think it no I don’t get the whole summer off.

Do I see myself working as a Disability Adviser until retirement age? That I don’t really know although it’s safe to say there are other things I’d like to do in life and who knows what the future holds, one thing I do know however is that I am incredibly fortunate to have a job especially at the current time and in light of the fact that so many disabled people find it really really hard to get work and many end up without work for large periods of life. It may surprise you to know that according to the Royal National Institute of Blind people (RNIB) around 75% of blind and partially-sighted people who have the necessary skills, knowledge and experience to work are unemployed. Yep you read that right, 75% of blind people of working age are without a job. This figure is about the same when you extend it out to other groups of disabled people. Yes I know you have to be careful with statistics and no I’m not going to get into all the politics ere but hopefully you get the picture that as a disabled person you face a real uphill battle to not only find work but to find work that you enjoy and which has the right terms and conditions. I was reminded of just how fortunate I am only a couple of weekends ago whilst playing in a blind cricket tournament where I met many blind and partially-sighted people in very 20’s and 30’s who were out of work and who had been for quite some time even though they’d been doing all they could to find a job.

What’s even more amazing in my case is that I didn’t actually get my first job until I was 26 having spent 7 years after leaving school doing 2 undergraduate degrees in completely different subjects and spending a year as a volunteer youth and community worker for a church in Glasgow. Not only that but having got myself a good job as Disability Adviser at Nottingham Trent University where I did my first undergraduate degree I committed what was considered career suicide by resigning from it so we could go to Northumberland and be involved in a church planting project which didn’t work out as we’d hoped.

So here I am, fast approaching 40 and working for a top Russell group University with decent pay, decent holidays and able to walk to work. I should be thankful, I am thankful, I know how fortunate I am and I do know that I’m where I am because God has put me here. That’s not to say it’s been an easy journey getting here, there have been some real bumpy bits along the way but I do have to remind myself how fortunate I am and what a privileged position I’m actually in. Does that mean I won’t moan about the fact we’re fast approaching the start of a new academic year and all that means, hmm, what do you think, however what it does mean is that I must continue to challenge myself to remain thankful even though it’s often the last thing I want to be.

Life without colour

As I continue to adjust to my reality without sight I have been reflecting over the past few days over what I miss the most. As stated previously I didn’t have a lot of useful sight before my accident and what I had was only in one eye (the one I bashed on the cupboard door!) however I was able to make out certain things, shapes, outlines, glimpses and so on.

I’ve already blogged about how my new situation won’t really affect the way I access information as I’ve been doing this via computers and other electronic means for years. yes there is the obvious impact it is having on my ability to get around independently particularly in unfamiliar settings. yes there is all that as well as other stuff like now knowing when the lights are on in a room, disturbed sleep patterns and the visual hallucinations which I’m still getting although not as regularly.

What then do I miss the most?

Well it’s dawned on me that what I miss the most is colour. yes it’s true that before the accident I could only make out bold colours and was no good with subtle pastel shades or the difference between a navy blue and a black for instance however I could nonetheless tell if something was red, green, yellow etc etc.

Why does this matter?

Well I’ve not really thought about this aspect of going totally blind before but it has hit me in the past few days that the absence of all colour in my life is at best tedious and at best quite depressing. No longer can i see the vibrant colour of my oldest daughter’s auburn hair and the different shades of hair of my other children. No longer can I see the colour of the clothes I am wearing or would like to wear or that of those worn by others. No longer can i tell the colour of our car from that of the others around me. No longer can i see if it’s a sunny day versus an overcast day although yes I can feel the warmth of the sun on me. No longer will I be able to look out the window on a snowy day and see the blanket of white. No longer will I be able to see the contrast between grass and the path in a park or even a glimpse of bright lights or fireworks in dark winter skies.

I could go on but hopefully you get the message. yes i have my mental images of ow things were but even now they are starting to fade. yes I have weird sensations of bright light and darkness even though this is totally unrelated to external stimulus and I think is part of the visual hallucinations. Yes I have found myself paying much more attention to the sounds of things around me to formulate a picture of what’s around me. yes I can get people to describe things to me as happened on some occasions before.

This is all true. I’m sure I will get used to it and find other ways to engage my imagination but that doesn’t take away from the fact that my world is now one not even of black and white but black and black. I know what I had before wasn’t a lot but it really is true that you don’t know what you’ve got until it’s gone and boy am I missing it at the moment.

Some things I didn’t expect..

It’s 4 weeks ago today since my world changed to one of total blindness. As I have shared previously on this blog there are some things like how I use a PC that haven’t changed and there are others such as how I will get around that will need to be adapted in light of my lack of any useful vision. Much of what has and what will need to change has not been a total surprise however there are a few things I had not anticipated and I thought it might prove interesting to share a couple of them here so here goes:

Visual Hallucinations

One of the weirdest things over the past few weeks has been the times when I was convinced that I could see something in front of me such as an item in the house or a particular piece of clothing I was wearing even though I knew for a fact I couldn’t physically see anything at all. It was more often the case that the things I thought I was seeing were things I knew how they looked from before and although they didn’t look as sharper as they did before I nevertheless could “see” a pretty good image of them.

I mention this to the Consultant last week and he said that they were likely to be visual hallucinations and they were not uncommon in cases like mine although they were more typical in people affected by macular Degeneration which tends to affect older people. The way he explained it was that my brain was getting a bit bored of not getting any visual stimulus and so was playing tricks on me on occasions. I have since discovered how common this phenomenon is and it is referred to in the recent book “Tango 190” which is the story of PC David Rathband, the Northumbrian Police Officer who lost his sight after being shot in the face by Raoul Moat last year.

Disturbed Sleep Patterns

I guess this shouldn’t have come as a surprise but it has and again having done a bit of googling it turns out it’s quite a common experience of people with little or no vision. I have always had a bit of an erratic sleep pattern although of obviously the arrival of 3 children hasn’t helped over the years!! What I’d never thought about though was how much the lack of any visual triggers of when it’s day and night would affect how well I slept or when I woke up.

I’m well aware the past few weeks haven’t been my usual daily pattern and recovering from surgery and taking strong painkillers has undoubtedly added to issues with being excessively tired and needing to sleep at odd times of the day. What I have found though is that even as I’ve been able to reduce the amount of painkillers I’ve need to take I’ve still found myself waking up at odd times during the night and feeling wide awake. Hopefully as I return to work next week and get back to a more “normal” routine this will improve and if it doesn’t then apparently there is medication that can be prescribed should I wish to go down this route .

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Those are just a few of the more unexpected things I’ve noticed so far, no doubt there will be more which I may share some other time. I’d be interested to hear from any other blind people reading this who have had similar experiences of either of the above.

So this is how it’s going to be..

I was at the hospital again this afternoon for a follow-up appointment with the retinal consultant I saw 2 weeks ago. Whilst I wasn’t expecting much from what was said at my last visit there was still a possibility that they would consider some further surgery to help clear the excess blood from the front of the eye which may have improved my chances of regaining some level of light perception. If I’m honest though I have suspected right from the start that this was it, the end of all sight and that was confirmed for me today.

In short the fact that I have not regained any level of improvement in vision by now means that there is no point in them considering further surgery. The guy I saw was very nice and thankfully not too patronising but he was very honest and said that there was no point me seeing him again as there was nothing else he could do. So this is how it’s going to be, I am officially a fully certified totally blind person, one f the very small percentage of visually impaired people who have no sight at all.

As I said this wasn’t a total surprise for either Erica or I and at least we now what we’re dealing with but it still feels a bit weird having it stated by a medic. It’s not the end of visits to the hospital, the next step is for me to see my regular corneal consultant for them to see how the eye settles down over time and whether or not it ultimately needs to be removed in order to prevent future infection or inflammation.

How do I feel about it all?

It’s all still early days and as I’ve indicated before my emotions range all over the place at times and I do ultimately know that I/we will adjust and it’s not the end of the world after all I was living a pretty full on and active life beforehand and I aim to carry on doing the same again.

So to those of you who have been praying for healing, thanks, feel free to keep doing so as I know God can ultimately do this but prayers for wisdom, grace and patience as we adjust to the new reality would also be much appreciated. To those of you who aren’t the praying kind, thanks very much for your words of support, encouragement and love, all just as much appreciated and welcomed.

Do blind people dream?

What a great question!! As I’ve thought about how to answer it over the past day or so I have found myself pondering some very interesting related questions of how much I used to “see” and how much was simply my brain filling in the gaps with visual memories of things I remember from when I had more sight. If I had the energy this would probably be a great subject for a longer piece of research but well hey that will have to wait for another day!!

What I can say however is that yes blind people do dream and I know from the anecdotal evidence I’ve heard that many of them do dream in pictures and often those “pictures ” are pretty sharper and vivid at least to the person dreaming them. I do recall reading a while ago about some research that had been done which suggested that people who had been totally blind from birth also dreamed and dreamed in colour – although how the researchers discovered this I don’t know.

I do know that I have always had a very vivid imagination and as a child I did used to enjoy drawing and was even quite into photography for a while as a teenager before I had to stop due to deteriorating vision. I also know that when I dream I do ‘see” things in my minds eye and those images can be pretty vivid however in thinking about it what I don’t know is how much of what I “see” in my minds eye is simp;y a combination of visual memories and images I have put together of people, places and things based on how they have been described to me in the past.

What’s even more weird now however is how at times I think I am seeing something around the house but actually I know that since my accident I have absolutely no vision at all, not even light perception. it’s all very strange really and I’m not sure what’s going on but their are times that I could swear their is a bright light on in the room even though Erica will tell me I’m sitting in the dark.

Hmm, looks like I’ve unearthed more answers than questions with this one. Perhaps some of my fellow blind friends reading this would like to share their experiences of how they dream and what they “see” when they dream, imagine etc.

Harder than I first thought

It’s just over 2 weeks since my close encounter with the cupboard and it’s safe to say it’s been a rough few weeks for us all. If you’ve been following my ramblings since the beginning then you will have deduced that the fact that I’ve now lost all sight wasn’t a total shock to me and it’s something I knew would probably happen some day for one reason or another. As soon as my eye collided with the corner of the cupboard and I felt the searing pain and felt the blood dripping onto my hands I knew this was probably it and apparently all I kept saying as Erica took me to eye casualty was “what the hell Have I done?”.

Of course it’s one thing knowing that something might happen one day and then finally having it happen and I guess that’s where I’m at at the moment – trying to adjust to live in my new reality of being totally blind. AS I touched upon in some of my earlier posts I know fine well that this does not mean that life is over for me, I do know that given time i will be bak to doing pretty much most of what I was doing before albeit perhaps having to do some things in a new way or with more support to begin with. I know enough totally blind people myself who live thoroughly fulfilled lives and who don’t et their lack of sight limit their goals, ambitions or desire to live life to the full. I know I will be ok, I know in time we will be ok as a family. However as much as I know this I also know that I’m probably guilty of underestimating the shock that this new reality is for not just me but Erica and the kids too. I know many people think that I’m incredibly brave, courageous, inspirational, etc etc, well it’s nice to have this said about you but as much as I might seem like this on the outside I certainly don’t feel like it on the inside at the best of times and least of have all now.

So what am I trying to say?

well I’m not entirely sure. as i said at the start of doing this blog this is a confusing time for us all and so what I post here may well reflect that confusion. I guess however want I’m trying to say is yes it’s hard at the mo, yes I am still in pain, yes I am frustrated that it’s messed up our summer holiday plans; in short yes I am finding this all harder than I first thought.

So what can you do?

Well the very fact you’re reading this is a great encouragement. if you’re the praying type then please do continue to pray for us as I know many of you have been in particular for grace, patience, wisdom and yes healing. Other than that there’s probably not much you can do, this is my journey after all and I know I have to work through it myself but it is good to know that I am not doing so alone.

What about prayer for healing?

Hmm, prayers for healing, now there’s a subject that would merit a blog all of its own!!Don’t worry, I don’t have the mental energy at present to rehearse all the debates about why God does / doesn’t heal today but be assured this is a subject I have wrestled with over the years and which inevitably comes to the fore again at times such as this.

Does God heal today, absolutely. Have I seen God heal others, yes once or twice. Am I open to God working an act of miraculous healing on my eyes, not only restoring the damaged eye but completely restoring both eyes and giving me full sight again; yes I do believe God is more than capable of doing this and I know there are many of you praying sincerely that this will happen.

That said however I also believe I am no less of a person or any less loved by God should He for whatever reason known only to Him decide not to heal me. I do not believe that having a disability means that God has somehow given up on a person or has cursed them for some past sin. I do believe that people with disabilities just like people without are made in the image of God albeit it an image that has been tarnished by the presence of original sin. Disabled people, just like all other people, are created by God to live for Him and bring glory to Him by living lives of love and service in whatever context they find themselves.

Of course as much as I believe this it doesn’t mean that I don’t have periods of struggle or times when i want to rant at God and ask the big “Why me?”. As I’ve said if you’re currently praying for me to be healed then by all means carry on, if you genuinely feel it would be helpful to come and pray for me in person then get in touch and we may be able to arrange this. If in the end I do lose all sight permanently and have to have my eye removed then I don’t believe for one minute this will be because not enough people prayed for me to be healed or because I didn’t pray enough myself.

Perhaps I can end by sharing some of my favourite words of scripture that I have reflected on at other times like this. They’re the words of the Apostle Paul written to the Corinthian church and talking of his own struggles with his own “thorn in the flesh”

.”..therefore in order to stop me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. 8 Three times I pleaded with the Lord to take it away from me. 9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians12:7)

What a week!!

So here we are 1 week after my accident and what a week it’s been. I’m sure many of you will have already heard from Erica what’s been going on and I would really like to thank those of you who have supported us over the past week offering us food, childcare, ironing and of course prayers.

So what exactly happened?

Well last Monday morning (11th July) I was downstairs getting something out of a floor cupboard. As I bent down to get the item I somehow managed to bash my left eye on the corner of the cupboard.

That was it, the pain was intense, I could feel the blood dripping and I knew that whatever I’d done it wasn’t good.

Next thing I knew Erica had scooped up me and the kids and we were on our way to Eye casualty where it was quickly apparent to the nurse on reception that I should be seen too immediately. The next few hours were a blur of doctors, nurses, excruciating pain, blood tests, admission on onto the Ward and then emergency surgery just after lunch.

During all this I knew that whatever Id done it was serious and as my left eye is the one I have any vision in I knew this could be it. It turned out that I’d managed to rupture my eyeball and the emergency surgery I had was primarily only to stitch up the eyeball and stop it bleeding and losing essential fluids.

So that was the start of what has probably been the most difficult week we’ve had for along time and we’ve had a few tough ones over the years.

If you want to know more about how things have been since, what I know so far about the long-term prognosis for my eye and how I feel about i all then please do follow this blog. If you’re not that bothered then that’s fair enough, I’m not doing this to seek pity or sympathy but to let people know what is going on. No I won’t tell you everything and it may be that what I write often seems confused, that’ll be because this is a very confusing time for us all.