The preface to the days that changed my life…
Thank you to my friend Tanya for her searingly honest and thought-provoking post on the day that changed her life. You can read about it here. I’d highly recommend it. If you’re someone who is easily prone to tears I’d keep the tissues handy. Tanya’s post gave me the inspiration for this one. There are several days which have changed the course of my adult life, rather than just one. (There were several incidents as a child which had a profound effect on my life, including my journey to faith at the age of nine. However none of that is my focus here, but is reserved for later posts.)
Day 1: The day I got ‘chucked out’ of home
Fortunately for me, this isn’t actually true,.It’s just something of a family joke. My mum’s always said one of the best things she’s ever done is to encourage both me and my brother to leave home. It’s part of what’s made me so independent now. My days at Stirling University seem so far away. If this was a film of my life, the camera would have to rewind 11 years to my first day at uni! I cannot believe it’s that long. It makes me feel so old. And yet, I remember the first days of independence so clearly. The feelings of being lost, both in the sense of not having friends, and also feeling physically lost. My sense of direction has never been my strong point. My brother got the full measure of that when God handed it out.
When I look back now, there are so many things I wish I’d done differently. For example, I wish I’d joined more clubs and societies. The only one I ever joined was the Christian Union (CU), though by the end I guess I’d had quite an impact on it by the time I’d left. There are quite a few things that happened at uni which still affect me now. For starters, I was in and out of hospital a few times, which impacted on my studies. The situation was not resolved until I was 25 but more of that later.
The other significant thing that happened at uni was that three full years into my degree, I failed. This time I was unceremoniously kicked off the course. I’d been trying to complete a BEd alongside a regular arts degree. I wasn’t much good at it, though I remember my tutors saying that they always praised my values highly as these were always well established, and I still hold to them now. It took me a long time to get over the loss, even though I’ve admitted I was not good at teaching. There are incidents coming back to me now which I thought I’d consigned to the dustbin of history. Quick girl, keep typing, get onto the next screen shot in your head. This one’s far too painful. I still remember now the sense of loss. It hit my parents so hard. They hadn’t realised the road would come to an end so abruptly. They’d always thought I’d get there somehow like I always did. Not this time though. I remember it hitting my Dad particularly hard, as my brother messed around in his first couple of years at uni, and still sailed through. I’d worked so hard and failed.
I did do an extra term to finish off a bog-standard bachelor of arts degree. Leaving things half done was not my style. That last semester was such a disaster though. The mess I made of relationships with my flatmates might have had eternal consequences. I still think About it sometimes now and pray that it’s not true, that they’ve found Jesus other ways, as they didn’t find him through me. I was a mess that term. Looking back, the bottom had just fell out of my world. I didn’t make things any easier for myself though. The memories are all slamming into one another now. Lets move on.
I then had to spend a difficult nine months at home thinking and working out what God would have me do with my life. I was offered two roads — an English one and a Scottish one. I picked the former, and packed my bags again. Before that though, I have a distinct memory of my Dad talking to me in the car and saying things like “I want to talk to you very seriously now. I want you to think long and hard about Leeds. What if you get ill, you’re doctors in Aberdeen. If you’re at Aberdeen you’re not far away, but if you’re in Leeds and have a disaster, we can’t get to you”.
Day 2: The move to the ‘wrong’ side of the border!!
Well, I did move to Leeds. The loneliness and sense of loss reared it’s head again. I cried for an hour SOLID about missing home, and had I done the wrong thing. It felt so far away. I did make it through that year. Now it feels like I just scraped through. I’d do it all differently if I’d had the chance to start over. Well scrape through I did, with ‘just’ a pass. A masters, when I wasn’t supposed to have the mental capacity to finish primary school. When you think of it like that, it does sound like an awfully big deal.
Day 3: the one with the operation…
Again, I remember this like it were yesterday. November 2008, so a year after I’d scraped through the masters. I’d not been feeling well for quite some time, and had just been existing on the insides of plain baked potato, and white bread and butter, that sort of thing. I’d been in St Mary’s in Leeds having physiotherapy amongst other things, and had to have an emergency appt. at the hospital. They’d offered me an ambulance or a taxi there a few days before, but I hadn’t seen the need. It all came like a bolt from the blue. I remember sitting with doctor Sprakes, and him saying, “how would you feel about saying in hospital for a bit. I don’t think it would be a good idea to go home.” I said to him, do I have a choice? It’s not down to how I feel if you think I should be in here.
Fast forward a week, to ward 53, ward 59 as it was later called. I wasn’t getting any better, not even IV steroids were working, and Dr Everett said, “lets get a sensible surgeon in here.” Along comes Mr Saunders. Honest and straight forward to the point of being brutal. He told me a bag on my tummy would be a certainty, probably for ever, but at least for the short term. Wham, it hits me again. The familiar wall of emotion that I just have to cry out. The deep sense of loss, and the frenzied thoughts. I already had cerebral palsy and was finding it increasingly difficult to walk, never mind coping with a bag into which I poo, as well.
The day arrived. Barring a serious RTA, I was up. So, the accident never happened, so it was my turn to be centre of attention, not that I wanted it. I felt such fear on the way to theatre. I started to wail under my breath, as it’s always sounded when I’ve tried to sing. But had you been a fly on the wall, you’d have heard a hopelessly out of tune version of “my Jesus, my Saviour”. I remember being in the pre op room as well. Then trying a failing to find a vein. Then nothing. They wake me. I beg to be told if I have a feeding tube or just a bag. Just a bag, they say. It was no longer the worst case scenario. I breathe a sigh of relief. And so the rest of this day that changed my life is not quite over. I remember the sense of relief in the left hand side of my tummy– pain free. It had not been that way for months.
I only later learned of the enormity of that day. How touch and go it had been. How my heart rate was dropping and they’d had to halt my op, quickly, just as they who had delivered me all those years before had had to do. Mine was one of the ‘hellish’ operations my surgeon forgets, so bad it was, he had to be convinced it was he who had done the operation, and nearly fell off his chair when he remembered. My bowel had been so twisted and so scarred, it took them eight hours just to save my life, never mind do the rest of what they had scheduled. They’d saved my life, misson accomplished. My mum denies it was ever this serious, but she wasn’t in the very first meeting with the surgeon, or any of the subsequent appointments, so let’s leave it there.
I recovered remarkably quickly, given all I had been through. just 9 days after the operation, all that was keeping me in hospital was that I was struggling to cope with managing the bag on my tummy. Something I’ve struggled with for just over three years, and only gave up the actual changing of it fairly recently. Going back to how I was then, I cannot believe it was almost 4 years ago. What happened then, is something that’s happened a few times in my life. God has seen fit to partially heal me. No problems so far with scar tissue and no problems with the scar healing. It was so well healed, getting the staples out was agony. Someone had to hold me down while someone else took the staples out!
There was one nurse in particular I bonded with. Nurse and patient relationships are such an important part of recovery. This nurses calm demeanour and the way he coped with each of my emergencies, his quiet way of going about my care, and the way we’d always laugh and joke throughout was a big part of how well I recovered. I can see how the NHS is going and it’s a tragedy of massive proportions. Something Lansley never understood, and I think his predecessor understands even less, given how he hadn’t a clue about some things that stared him in the face. I’m in the ‘Jeremy Hunt as health minister is a disaster’ camp unless proved otherwise, but frankly I’m more likely to be proved right. If I’m wrong, and your someone that believes in the guy, if he gets it right, I’ll buy you a beer!
The days after were so difficult, and I’ve struggled for the last 3 years. I’ve never properly managed the bag on my tummy, but am so good at putting a face on things that everyone apart from my parents has thought otherwise. A couple of years back, someone’s nephew was going through a similar op to mine and I bolted out of the room in an emotional mess, instead of being there for them. I managed to pick up the pieces of that afterwards, but still wish I’d been able to be strong. My mum has always been so matter of fact about how I should be over it. It’s only now, four years later, that I feel there is now some distance between me and the operation. I still do have days now where I wonder what the thing is on my tummy and how I will care for it for the rest of my days on earth. For a very funny, honest account of what it’s like living with a bag, follow Wendy Lee on twitter and read her blog, she’s fabulous.
Day 4: The one with the ‘wheelie chair’
(If you’re still reading this now and haven’t given up the will to live, thank you!) One is a couple of years back. Am sat in a rehab consultant’s office, let’s call her doctor P. I sit there, relaxed, thinking this will just be an ordinary review and I’ll be out in half an hour. I’d foolishly gone to the appointment on my own. However, at some point the room starts spinning, swirling round and round and I have no idea where I am. “…you need an electric wheelchair full time. It’s not the end. you’ll have more energy and be able to do more. it’s just that you are doing so much damage to your hips that if you carry on the way you are, you’ll need to start being hoisted in the next few years…”
Fast forward a couple of years, and I’m writing this with a laptop balanced precariously on my knee, with a chair of wheels surrounding me. The second the NHS had to offer, because the first had so many faults it had to find it’s way back to the people who made it, as not even reps from that company could find the fault, they just fixed the same things as those contracted to service it. Normally you’re not provided with a chair when you can still stand, but the pain and fatigue was having such an impact on my life, there was no getting out of it. In fact, even with the chair, I’m dosed up on something I shall not name, but I’ve heard is addictive. Just something else I have to trust the Lord with.
I’m aware I haven’t mentioned Jesus much in this search of my soul. He’s always been there, even when I’ve let go of Him. I’m aware of the theology of overcoming, and am not sure how I feel about it. More of that in future posts, as I would like to talk to a few people about that one first. I’ve had some help recently to process everything that’s gone on in the last year. I got my electric wheelchair the middle of last September, and started having care two days later. Add to that the heaps of appointments I’ve had in the last year too. Not working is a full time job! And we come to…
Day 5..The joys of being cared for…
I’ve written about this in a previous post. It might be more than you can take to read it now. However, it is worth reading! This again, is something I’ve had to come to terms with, and is still not easy. It still gives me trials on an almost daily basis, partly because the office ‘crisis manages’ the situation rather than calmly planning the whole thing. However, I won’t say any more, because planning has never been one of my strong points either!
I’ve been privalidged to have so many opportunities to share the gospel with this lot, but even more than that, I’m privileged to call some of them friends, and the gospel sharing may be for later on. Some of them just need a friend right now. What is it about carers, that trauma just seems to follow almost all of them? Not one of them who comes through the door isn’t hurting about something or other, and brings that to the job. Enough said about that, I’m probably already in trouble.
I’m signing off for now, you’ll be relieved to know. Off to find my phone alarm and take my prescribed ‘sweeties’ as the noise will be bugging the neighbours right about now…
10 thoughts on “The days that dared to change my already complex life…”
Wow – thank you so much for sharing your health story. That operation sounded just terrifying… It was nice to get to know you a little better – thank you,
yeah that’s why I think it’s been so hard to move on from it. Thanks for the encouragement. I thought it would just sound like self-obsessed waffle!! I couldn’t see anyone reading to the end of it either, so thank you for that. It has made me feel better to write it, for sure. I feel chilled out today for the first time in a while 🙂
One of the things that I notice from this blog entry is that certain life events have been quite grim for you, Jacks. Yet what I read on Facebook and in the rest of your blog, is a conscious effort to keep (excuse the unintentional pun) picking yourself up and not just lying in a puddle of pity.
Such little things can derail us on a day to day basis, and yet every so often a person comes along who (some would argue) has been dealt a rather rubbish hand of cards, and chooses to continue to play those cards and not throw in the game. I am glad to know at least one of those people.
[…] in Pakistan. There was also, selfishly, the soul-baring post I wrote earlier this week on “The (5) days that dared to change my life”. I have been overwhelmed with responses… mostly in people’s kind comments or tweets, or […]
[…] of course, is that Jesus is the bridegroom, and I am his bride. Not because of me, but because He first loved me (1 John 4:19). Whenever I think of this picture, I am free, there is only me and Jesus. One day, […]
[…] life with a severe, life-limiting disability is like. I recently wrote in my own blog about 5 days that changed my life. I was overwhelmed by the way people reacted to it. Most people were just grateful I shared a part […]
[…] my faith, or faith in general. There are couple of notable exceptions such as when I blogged about my “health story” and referred to the way God has sustained me and been my strength. The other time […]
[…] enabled me to me walk through so many difficulties in the past few years. Things I’ve already written about, including failing my teaching degree, being ill and trying to pass a masters degree. Add to that, […]
[…] was devastating. If fact, it’s not too dramatic to say it was actually life-changing, one of five days to be […]
[…] post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt […]