It's too easy to guess what the bad things about a spinal cord injury are. We'll get to them, but later. To begin with, let's focus first on the good things, and the way I'm lucky.
The good things about having a spinal cord injury.
(and yes, there are some!)
- I got an insurance payout that almost halved our mortgage. From being impossible, only paying the interest, we can now start to repay the capital. It's still big, but manageable.
I have a "free" car. Technically, it's not free in that I pay some of my Disability Living Allowance to Motability for giving me the car. But that payment (currently £45 a week) covers a brand new car, insurance, MOT, servicing, new tyres. To get a new Vauxhall Astra estate that retails at over £14,000 for a £399 deposit with all the other bits thrown in seems pretty good to me. I've never had a brand new car before. It's great! And then in another three years, I'll get another one.- I get benefits. My Disability Living Allowance and Incapacity Benefit. These take the pressure off financially.
- I've built a real relationship with my eldest sister Claire. We didn't use to be that close, but she was amazing when I was in hospital, visiting often, bringing lunch to eat together...
- I've had time to deeply reflect on where I want to go in my life, what I want to do. Spending months in bed kind of gives you that chance. It's also given me a different attitude to time. Having previously been a constantly busy person, now I'm happy to just sit and be. Most of the time.
How am I lucky? - I'm alive. Lots of people who fall out of trees die.
- I have my arms. Lots of people who fall out of trees break their necks and lose the use of their arms. With arms, I'm completely independent and don't need a carer or personal assistant.
- I''m older, so I've travelled, I've had 40 years use of my legs. There was an ongoing debate in the hospital about whether it was better to be young or older. If you're younger, the argument went that it was better because you didn't know what you were missing. I'm not sure about that.
- I'm married. Women are less judging of appearances, but even so, it's easier that I've been with Annika for almost 20 years. We've got a lot of history, history when I had legs too. At the same time, the length of time makes it harder for Annika for exactly that reason - I've had legs for the 20 years in our relationship.
- I have a complete injury, i.e. my spinal cord is more or less severed, which is both good and bad/lucky and unlucky. Read the definition of complete vs incomplete here. Some would argue a complete injury is worse than an incomplete one. For one thing, it means that for most of the time I don't feel any pain below the level of my injury - so nothing below my armpits. Many of the "incompletes" I know are in constant pain, need massive amounts of painkillers. However, the complete lack of sensation also means I can cause myself serious damage without realising. I can spill boiling coffee on to my legs, cause third degree burns and be completely unaware. That's very scary. Another thing a complete injury means is that I'm extremely unlikely to walk again. Again, this is a good and bad thing. The bad is obvious. The good thing about not being able to walk again is that I don't need to bother trying. Watching incompletes in hospital trying to walk makes you realise how incredibly difficult it is. I can focus on the rest of my life, rather than getting my legs to work again. Someone once said to me in hospital (an "incomplete", who'd learnt to walk again, then been injured again) "If I'd know I was going to waste the last twenty years trying to walk, I'd not have bothered. As it is, my career is over. If I'd not focussed on my legs, I'd be at the top of my profession now." Challenging thought.
- I have children. Lovely children. One of the many side affects of spinal cord injury is that it's harder to conceive. It's by no means impossible, but it's harder. I'm also lucky because they're older. Again, plenty of people with SCI have little children, but again, I imagine it's harder.
- I have friends. The accident really showed me who my friends were. It's interesting. Some of the people who I thought would really be there for me were not. And vice versa - others, who were more acquaintances rather than friends - shone. Nothing like a life-changing injury to get people to show their true colours.
- The hospital I went to, Salisbury Hospital NHS Foundation (SDH for Salisbury District Hospital) has a specific spinal injuries unit, and is held to be one of the best in the country. It's near where I live too, so family could visit fairly easily. And I went straight from the accident to the hospital. Lots of patients end up waiting for a bed and get put into a "normal" hospital, where the staff often don't know about the particular complications and requirements of Spinal Cord Injury. SDH is also in a greenfield site, with beautiful views, a lot of grass, trees...
- Annika works. And her employer was impressively sympathetic, giving her a pay rise so that she could bring in an au pair, letting her have time off when she needed it. If she hadn't been working, or hadn't been able to hold it together, we would have lost our house. As it was, she was incredible, coping with becoming a single working mother overnight with a very ill husband.
I know about fundraising. Because of Annika's income, we weren't able to get a Disabled Facilities Grant to convert our (three storey) house. The grant is assessed purely on income and takes no account of expenses. It was decided we weren't eligible. But I know about grants and trusts (I co-edited The Guide to the Major Trusts a while back), so managed to raise the £20,000 we needed. Thank you to my funders! I'll write something about how I managed it another time.- I live in a community. We live on a quiet road, the kids go to a great school, I know a lot of people in town through owning the toyshop. People have been extraordinarily kind and generous, helping out with cash, childcare, friendship. I can't imagine what it would have been like if this had happened in London, where I lived for 17 years.
- Of the (many) jobs I've done, none has particularly involved heavy physical work. I've used my mind. So getting work in the future (I'm hoping to retrain as a primary school teacher) should be possible, as long as I can sort out the physical side of things. More about that in the "bad" and "ugly" sections to follow.
- I used to be fit and thin. Having just your arms to move your whole body is a lot easier if you're not too heavy. I also used to do a lot of sport, so I'm used to physical challenges, and believe me, being in a wheelchair is one hell of a physical challenge. As long as it's a manual chair.
- We live in a beautiful house. It's Edwardian, has big rooms and high ceilings with a lot of natural light. I can spend all day inside and not feel trapped. The floors are level and there are no ramps inside. We have a big garden. We have enough space to include an au pair in our lives without bumping into them all the time (though how on earth do they manage to stay in their room so much without going mad?). The house has three storeys (and a cellar). In fact, many people said we should move - to a bungalow, to something more accessible. Yet with a stairlift that gets me to the first floor, this house is more or less perfect. And it's our home.
- I've always pursued things I've wanted to do. I'm not one of those people who defers wishes. If I want to do something, I'll go for it, as far as is feasibly possible. Yes, I still want to sail around the world, and climb Mount Everest. Both of those will be a lot harder now. But, I've been caving/potholing; turned up randomly at the airport and caught the next flight (I ended up in Marrakech), sat on the Circle Line in the London Underground the whole way round (not quite sure why I wanted to do that, and it wasn't that exciting); run lots of half-marathons (and a full one, but I prefer the half); been on the Trans-Siberian Express... You get the picture. I've done lots of things. It really used to frustrate me when people in the hospital said "Oh, you'll do things you've never done before". Hmm. Well, yes. I have done something since my accident that I've never done before. I've gone out clubbing till 4am. I'm not a very clubbing person, and I usually go to bed fairly early. But I was with a bunch of other people from the Spinal Unit, so I tagged along. It was amusing, apart from when a rather large and very drunk woman fell on me and broke my nose. Yet I wouldn't put it up there on a list of "things I've never done before. Gosh, I'm so happy I've had my accident so I could try this one".
The bad and the ugly?
(Many of these are so obvious, but let's spell them out)
- I'm extremely unlikely to walk again. As I've said above, this is both bad and good
- I can't do rough play with my kids. I won't ever feel grass under my feet. Yadayada. I could write this bit for hours (well, I did spend months despairing about all this), but I'm sure you can imagine the rest.
- My bladder and bowels don't work normally any more. If you really want to know more, read this and this.
- "Sexual function is impaired". In brief, this means I can't get an erection without Viagra, and I can't ejaculate. More here.
- I can't feel anything below my armpits. Yes, in some ways I'm lucky I can't feel: I'd be in huge pain. But I love touch, I used to love having massages. Now, if I'm having a massage, I haven't got a clue what's happening unless I actually watch.
- I get incredibly tired. With my level of injury, I have no trunk muscle or balance control. It's easy to fall over when I'm sitting in bed. It's hard to turn over. Lifting myself about with just my arms is hard work.
- Things will get worse. As I get older, my shoulders will start to give up and I won't be able to transfer out of my chair. I'll need a carer. This used to get me really down in hospital. I realised after a while though that there's nothing I can do about this, so there's no point in even thinking about it.
You can see why it's better to focus on the good!
