In October 2009 a friend seriously injured his spine in a climbing accident.
Over the following months as we wondered if he was going to live, and later if he was ever going to walk again, his wife kept us all updated with emails. In the last of these they "... reflect a little on the past 349 days and share a few lessons/observations we've picked up along the way – just in case you find yourself in a situation like this ..."
I went back to this email recently when my wife and I both had cause to deal with health issues of loved ones. It helped us and I hope it helps you if you need it. The Patient is now back at home with his family and getting on with life. We will be sharing a few beers over the summer.
Reproduced below; with the author and the Patient's permission, and the hope that it may assist those reading it is:
"Chapter 15 - The Final Chapter
Before you get too worried with a subject line like that –The Patient is fine! The day has finally come and he's about to return home, so this chapter marks the end of this particular novel (which sadly for you – and us – wasn't a short story...). The next novel will unfold as we get home and face the challenges of everyday life, but we've decided we won't inflict chapter updates on you for that as I'm sure it will get very boring after a while.
The official discharge date is Friday the 1st of October – thank goodness it happened before we got to the one year in hospital date - we're very very pleased to have missed that milestone. Reflecting back on the past 11 months, it's astonishing to realise how much life can change in the blink of an eye. This time last year we were all celebrating spring (with slightly better weather than this year I may add) and looking forward to our first real summer at the Mount. Our house renovation was about to start at the end of October, and all the plans we'd put in place over the past few years were coming to fruition.
Then on October 17th life changed – a simple mistake on an indoor climbing wall, and so the journey began: 349 days in hospital, 11 surgeries, 5 blood transfusions, 4 skin grafts (including one from a cadaver), 23 leeches – and 650 hospital meals that weren't touched thanks to the kindness of people delivering edible meals that didn't have white sauce on them (!), together with summer BBQs and a frequent shopper card at the local Otahuhu food hall!
There are a lot of miracles that happen in the Spinal Unit – people who come in completely broken, and walk out – simply because they fell on a slightly different angle and the swelling in their spinal cord didn't damage it permanently. For others, there are no miracles as they have what's called "complete" injuries – where the spinal cord has been damaged totally.The Patient sits in the "incomplete" part of the spectrum, and there are certainly muscle groups that have come back – he MAY over time, learn to walk with callipers but it will be a very long road to get to that point, with continued physio and hard work. In reality he will spend the rest of his life in a wheelchair – albeit a very groovy one. If callipers become an option, it will mean he may be able to walk a few metres at a time for special occasions so don't go expecting him to run down the beach any time soon!
For our last chapter, we just wanted to reflect a little on the past 349 days and share a few lessons/observations we've picked up along the way – just in case you find yourself in a situation like this somewhere along the way.
1. Invest in trauma insurance. We didn't, but if we had our time again we would. Having an insurance policy that pays a lump sum should a traumatic event happen to you is a very good idea – it takes away the worry of money when you have so many other things to worry about.
2. Don't believe all the bad press you hear about the public health system and ACC. When you really need it, both are very good. Sure there are a few dramas here and there, but there are in any part of life. Overall, the system works for those in real need.
3. Fighting the system head on doesn't work. Inevitably, people in the public health system or ACC do drive you nuts. Don't try and fight them head on – use all your powers of persuasion and all the skills you practised when your kids were little, to influence rather than dictate.
4. If you have people you love in the hospital system, the best thing you can be for them is an advocate. While the public health system IS great, you can't always assume they care for their patient as much as you do. Time is the greatest thing you can give someone in hospital - it always helps to have two sets of ears listening to what the doctors say, and someone else to make sure the nurses are giving you the care and attention you need. The energy you can save the patient by helping them reach things, eat things or get things – is energy they can use for healing. Always make sure you're at doctor's rounds if you can be there – find out from the ward clerk or the nurse when that time is and use the skills from point 3 to get you into the ward to be there. And when you're there, have a notebook with a list of the questions you want to ask – it's far harder for them to nip out the door in 2 minutes if you keep throwing questions at them.
5. If someone goes into hospital, some of the nicest things you can do for them are:
a. Bring meals and snacks – preferably in dishes you never want to see again. Hospital food is as bad as they say it is.
b. Lend them an electric chillybin or mini-fridge to keep beside their bed – food has a habit of walking from the central fridges in each ward, and there's nothing like having your own food source within easy reach.
c. Send them regular letters – there's nothing as special as getting mail delivered. One very special friend sent photos to the patient every day for the first 6 months of stupid things they had done at university – he ran out of photos after that (thank goodness as some of them were a bit dodgy)!!!
d. Send regular emails where you don't expect a reply – it's wonderful to be distracted by other people's news.
e. Bring low-key entertainment that doesn't need much user input – ipods with audio books or loaded with music; hard drives with DVDs on them that can be connected to the tv.
f. Pay for their sky subscription if they have decided it's too expensive – it's not that bad, and Sky TV provides the best entertainment.
g. Introduce them to a vodem and a notebook computer if they don't already have them – being able to kill time on the internet from your own bed is fantastic.
h. Buy a big huge jar and fill it with jellybeans – means the kids are happy as well as the patient!
i. Even if your patient can't eat, still bring yummy treats – sharing them with the nurses DEFINITELY gets better quality of care. It shouldn't but it does.
j. When they first go into hospital – an emergency pack is wonderful – special friends gave us one with toothpaste, toothbrush, notebook, pen, torch, earplugs, mini tri-pillow, chocolate, nice teabags etc.
k. Offer to do interesting things with the kids – often the patient and I couldn't do much, but many of you offered to look after the girls and do interesting things with them which has been wonderful.
6. Be positive and look for the good in any situation – it's always there. Right from the beginning we have believed we were very lucky – most people if they fall 15 metres onto a concrete floor will die or, at best, have head injuries. The patient has neither which is something to be very happy for. I will personally never forget the drive from the Mount to Rotorua. Our Friend had called to tell meThe Patient had an accident and it was serious – I convinced myself on the drive over that he was just waiting until I got there before he told me the patient had died as his voice sounded so unlike our friend. So on that drive I'd planned the funeral, right down to who the pallbearers were going to be (two shifts of them!). So when I walked into ED and saw him alive, talking and smiling it was oddly, one of the happiest moments of my life. There is always good in any situation – sometimes you have to hunt for it but it's there. And truth to tell – often the outcome will be the same, but at least if you're positive about an experience rather than negative – the journey will be a whole lot more enjoyable.
7. Such an easy thing to say but so very true – friends and family are everything. Sometimes as you get caught up in work or politics or the everyday dramas of life, you forget this. Don't wait for a crisis to remember it.
8. Setting goals is great, but at the same time remember to make the most of now. A lot easier said than done, but sometimes spending too much time thinking about the millions of "what-ifs" in the future can be very debilitating. If you live in the present moment and really enjoy it – you will never die wondering "what-if". Make sure the goals you do set are achievable – they don't have to be big. Some days, in the early weeks, The Patient's goals were simply to sleep or to read the Herald. But achieving them made him (and me) feel good about the day.
9. Plant a garden – it's good for the soul. One of the great things about the Spinal Unit are the garden plots – where you can go down and weed and water your own personal vege/flower plot. Somehow everything seemed to get put into perspective when you watch something grow.
10. When life gets overwhelming, just concentrate on breathing. Strangely, this tip really works. If it all gets too much, go and shut yourself away somewhere, close your eyes and just concentrate on the rhythm of your breathing and how you feel, both physically and mentally. Somehow or another, everything just calms down, your mind relaxes and everything feels more manageable. When you get right into it, the answers seem to come from nowhere – very new age, but oddly effective!
11. And finally – never park in a disabled carpark unless you have someone disabled with you! Those carparks are seriously wonderful when you're trying to unpack a wheelchair and transfer into it from the car – you just can't do that in a normal carpark.
.... The final lesson we've learned is There are times when you just can't do it alone. Even if you think you have done nothing, by being on the receiving end of these emails you have. You are only on the list because at some stage you reached out to give us some support – so thank you from the bottom of our hearts."
Are your affairs in order? If sickness or injury strikes you or you loved ones:
- Who will take care of you or them?
- Do you and your family have up to date Wills?
- How will you replace your income if you can no longer work?
- Do you have an Enduring Power of Attorney so there is someone who can act on your behalf if you are incapacitated?
- What other things do you need to consider?
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