Category: Uncategorized

17 July 2016

I wish I could tell you we have a new house and it’s perfect. I wish I could tell you I’m back to my former energy levels and I’m back at work full time. I wish I could tell you that I am without pain. I wish I could tell you my wheelchair skills are amazing and there are no longer any obstacles between me and full independence. None of these things are true. Boooooo!

What I can tell you, though, is that Steve and I continue to look for new digs – expanding and exploring options all the time. We are lucky to have jobs and resources, and although the housing market in Wellington could be more friendly to us, we are not out of the game. Grateful.

I can tell you that I am working four days a week and those days are both stimulating and exhausting. That one day off in the middle is a refuge and I’m still relying on it for a mid-week recharge before going again. My memory has improved, my processing time is getting quicker and I’m learning a thing or two on a new project. Grateful.

Pain. That’s a hard one. I am off nearly all medication. I take a minute quantity of something to try to keep spasms under control (and honestly, they aren’t that bad and I would probably be fine without that tiny bit of medicine), I take panadol occasionally for aches. I do have pain in my back below my left shoulder blade that I’m on the edge of seeing a specialist about. It isn’t going away by itself (yes, I really did think it might). Considering the fall and the damage, I’m doing well in the pain department. And don’t think this is just me gritting my teeth and bearing up – I am a complete wimp, I have a drawer full of codeine at my disposal, and I have a doctor who loves to write scripts. When I do have pain, I just find it completely unfair. In my mind, the further I get from the accident (in time), the better I should feel. That should be the deal. New and different aches, pains, nerve dramas, etc are completely unwelcome and make me feel like I’m being persecuted. Not grateful.

I have a fancy little wheel called SmartDrive that attaches to my axle. It is battery powered and, like a powered bicycle, it senses my effort to propel and adds to it. I wear a little wristband that has a blue tooth connection to the SmartDrive, so I can turn it on and completely off. The rest of the control is up to how hard I push. I think it has about 3 gears or speeds. If I need to turn it off quickly, I gently tap my wrist against the wheel of my chair, and the SmartDrive stops. It has sufficient oomph to get me up some pretty steep Wellington hills, and most importantly, can get me from a dead stop into motion when I cross a road (you wouldn’t notice without being in a chair or on a bike, but at a road crossing, the sidewalk ramps down to the gutter and then the street ramps back up toward the centre of the road, then ramps down to the other side where the footpath has another ramp from the gutter up – this is shitful from a wheelchair perspective and requires special skills and a big push. Some crossings are much flatter and easier than others, of course). Here’s a little SmartDrive video from the youtubes. Grateful.

Friday and I are working better together as a team. She has slotted right in at work, and has made a lot of new two-legged friends. She is also getting much more attuned to me and where she needs to be in relation to my chair. We recently got a new harness and a new ‘leash system’ for her. The harness is specifically for pulling so that we can start to work on getting her to pull me when I just need a little boost (and I don’t have smartdrive). The ‘leash system’ is just a short leash that connects to my chair with a quick release buckle. Believe me when I tell you that I have only recently gotten to the stage of trusting her deeply enough and consistently enough to actually attach her to my wheels. She is a big, strong, willful dog, which is great when you need the combination of strength and tenacity (like pulling open a heavy door), but scary when she would rather lunge at a chihuahua than go in a straight line. Not cool, Friday. Not cool. 98% grateful.

When I’m with my PT or my OT and, in conversation, just tell them what I’m doing at work or where I went on the weekend, they are always encouraging about what I’m able to do. I have left the office by myself to meet a friend for coffee (involving a street crossing and at least one challenging ramp), I’ve been to a full day conference managing to roll there and back and negotiate a full day out (potential toilet dramas, heavy doors, things I can’t reach, etc) by myself. I’m grateful to live in a friendly city where I’m comfortable asking for help if I need it and I always feel safe. My co-workers are also pretty amazing and always there to lend a hand if I need it (or just get the hell out of the way if I appear to be doing fine). Grateful.

All of these things are helping me to be more independent. My life is not where I want it to be just yet – there are a lot of things still unsettled and a lot of things I’m not confident enough to do alone – but I’m getting there.

3 June 2016

We think of life passing in days, months or years, but we only really come alive in the amazing moments – when we are switched on, when we are paying attention, when everything else falls away and we have a pure experience. In between, there is what passes for life, but really between those cherished moments, it is just static. White noise.

I would like to think that I have always been grateful for the moments. I would like to think that I have tried to minimise the static and truly live. I would like to think that I have a neat little store of the moments in my head that I can re-live with gratitude and fondness.

It’s been just over a year. I’ve been thinking about what I miss most. Now, you might think that the things I miss most are those pure moments – moments of bliss or happiness or uplifting love.

Here is a list:

Visiting friends in their homes – without an entourage to help me up or down stairs, without worrying about whether or not I will be able to use their bathroom, without thinking about whether or not my presence will in some way make them feel bad that I can’t do something, anything, while I’m there with them.

Getting on the floor with the dog to play – without needing technical assistance to get up again, without thinking I’ll have to be down there for at least an hour to make the effort worthwhile.

Knowing I can get on a plane any time – without having to plan ahead for my arrival at the airport, without having to transfer to another chair so mine can be packed (and at risk of breakage by people who mean well but don’t know what they’re doing), without having to plan ahead for my destination.

Going to a shop counter or bar and being seen immediately – without having to ring a bell (if I can reach it), without having to wave my arms, without having to shout and without the person on the other side inevitably saying “sorry, I didn’t see you there”.

Rising early and taking the dog for a walk – without worrying about my toilet routine, without spending half an hour getting dressed, without needing Steve’s help to get out of the house and through the gate and back in again, without worrying that, if Friday gets excited or agitated, I might not be able to adequately control her from the chair.

Coming home from work and preparing a nice meal in less than an hour – without needing help to get a cast iron pot out of the cupboard, without needing help to get food from the top shelf of the fridge, without having exhausted shoulders just from chopping vegetables, without needing help to put something heavy into the oven or take it out again.

Finding Steve anywhere in the house or garden and embracing him in a full body hug – without ramps, without having to ask him to bend to my level and still only being able to hug in pieces, never the whole.

I still have amazing moments. I still have the sublime. Those moments are easy to appreciate. I sit still and quiet in gratitude for a friend’s kind words or my partner’s sweet compassion. I think it is fair to say that what I miss most is the static. I miss the white noise. I miss everyday comfort. I miss easy.

Don’t get me wrong, I was happy to go for walks with Friday, and many times, I described it as the best part of my day. I liked cooking. I enjoyed visiting my friends. But, pre-debacle, my gratitude did not extend to the everyday ease. I didn’t cherish the way I got on and off the floor or how easy it was to pull on pants – that would have been ridiculous, right? To take a moment of inwardly smiling gratitude every time I walked up or down the stairs to a mate’s house? Thich Nhat Hanh makes the observation that we all notice when we have a toothache, but how often do we notice that we have a “not toothache”? How often do we let the ‘usual’ make us happy or bring us comfort? He makes a good point.

I didn’t think to be happy about the ease with which I could do things. Now that’s what I miss most.

18 May 2016

I’m surrounded by people every day. A carer who brings me breakfast and helps me in and out of the shower, a PT who keeps me on track to get stronger, an OT who helps me learn new skills and teaches me about my equipment, my dearest partner who laughs with me and hopes with me. And friends. And colleagues.

One might think that I don’t have a chance in hell of feeling lonely. One would be wrong.

I spoke to another paraplegic on the phone just a few evenings ago. He is designing a specialised bike for himself and others and he wanted to talk to other paras who might find such a thing useful*. As we talked, I realised how nice it is to talk to someone else who has the same life issues that I have. And I realised how isolated I’ve become in my grief and in my … uniqueness. Unique amongst my friends and family, of course, not unique in the world. But sometimes it feels that way.

I don’t socialise like I used to – partly because it is currently impossible for me to do some of the social activities I used to do (like tramping/hiking/bushwalking), but also partly because it is easy to get into a habit of doing the easiest possible thing, which is to go to work, come home and stay home**. I can understand, for the first time in my life, why and how people become house bound. It is so easy to do, and so easy to make excuses, and frankly, so easy to sit here and wish things were different, all the while feeling a mix of self-pity, resentment and guilt (for the self-pity and resentment).

I do my best to let other people in – I’m working up a ‘wheelchair challenge’ at work so people can have a go in the chair and see what it’s like, I talk to people who are interested in my situation, I’m part of a facebook community designed to connect people with spinal cord injuries and their families, I read the blogs of people in similar situations, and I watch youtube videos of people demonstrating different wheelchair skills. All of these things help, but honestly, none of them are quite like that phone call. That feeling of sharing a predicament in real time.

The power of writing this down is that I can reflect and think and become inspired to do. Every day, I ask myself “what did I do today to make myself stronger?” Sometimes the answer is “I took a nap”, sometimes the answer is “I learned a new chair skill” or “I went to the gym”. This discipline has been helpful because it helps me to acknowledge even the smallest steps in getting stronger, more capable and more independent.

Maybe I need to add “what did I do today to make myself less invisible?” so that I can answer “I sought out another para and talked about how annoying it is to be ignored at a counter because the clerk can’t see me”  or “I had a coffee with another wheelchair rider who wants to get a dog” or “I went to that bike shop that specialises in adaptable bikes so I can take part in social sporting activities”.

In the mean time, I will pout and listen to my favourite song about loneliness.

*please please please DO NOT send me a hundred links of bicycling equipment already modified for disabled people – he is designing something special, not me. And yes, I know (and he knows) there are many on the market already.

**Occupational therapists who specialise in this kind of rehab know this, so there is a focus on getting out and about – making sure I at least have a route I can do fairly easily to get to a cafe or the gym or a park or somewhere, anywhere.

7 May 2016

It will make sense to you when I describe it, but off the top of your head, would you have guessed that I have to spend time thinking about skin every day? Of all the worrying conditions that accompany paraplegia, this has been the most unexpected.

The most obvious result of the tumble is that I’m paralysed. I have nerves and muscles that talk to each other, but not to me. I have skin that responds to hot and cold, sharp and faint; but I don’t feel it in my brain. This means that I can easily do harm to myself without noticing. If, for example, I roll up to a hot oven and open the oven door and (without meaning to), open it until it rests on my lap, I can easily burn myself. My legs might try to move, but I might not notice. In another example, I might shift from my bed to the wheelchair, and in doing so, scrape my leg or my backside across the top of the wheel – knock a bit of bark off, as they say – and carry on without knowing.

As it happens, I’ve done just that. Try knocking some skin off and then sitting on it for 8 – 12 hours solid and see how that goes. Wait! I’ll save you the trouble. It does not go well. On the upside, it doesn’t hurt. On the downside, a wound that takes a long time to heal. I’ve learned that, with skin, a lot of the healing has to do with circulation. The first best treatment is bed rest (Nooooooo!) to stay off the wound entirely. A pressure wound that isn’t even severe (the skin has broken down, first one or two layers is missing) can still take a couple of weeks of bed rest to heal completely.

I am not made for bed rest. Don’t get me wrong, I like a good lie in followed by an afternoon nap as much as the next person, but flat out in bed (or worse, lying on one side or the other – not on my back) for days on end is enough to make me psychologically unfit for anyone’s company. Including my own. Without devout bed rest, instead of taking a few weeks to heal completely, the wound takes a few months. Seriously. Months.

Most of you won’t be surprised to find that I am a delicate flower, at least with regard to my skin. In one of the more surreal moments of my stay in the Auckland Spinal Unit, I had two nurses – one from India and one from the Philippines; one on one side of the bed and one on the other – arguing across the top of my damaged body about whether my skin is royal skin or baby skin. I finally had to interject that perhaps it is not one or the other, but both. Some of you may remember that I was on bed rest for 10 days as a result (as a result of the skin, not my impertinence).

My latest scrape happened in September. Although the skin is all grown back now (8 months later), I still wear a dressing on it every day. I started taking a zinc supplement more or less by accident over the Christmas holidays, and that actually sped things up a bit. It took several weeks to work out the best kind of dressing and tape to use – my royal baby skin reacts badly to some types of medical tape and taking dressings on and off only makes things worse. The nurse, who comes to see me once a week (down from twice a week visits for the first few months) to make sure the progress is still happening, tells me the skin will remain vulnerable for up to two years. I don’t want to have to think about this. I don’t want to worry about one more stinking thing – staying in the chair is quite enough, thanks. But here we are. And here we will be.

I can’t change my skin, but there are things I can do to help myself. I can use high end products like a Roho hybrid seat cushion and a fancy Metzeler mattress (thanks ACC!). I can get stronger and make sure my transfers are top notch – lift rather than slide, pay attention while I’m doing it. I can eat and drink well to nourish my skin. I can take care of any break down so it doesn’t go downhill fast. I can be vigilant in checking to make sure I’m not wounded – can’t feel it, so I have to actually look with mirrors and ask for help from Steve or from my carer. Looking after myself has a lot more detail to it than it used to; or maybe it’s just new and seems more intricate. I used to think of myself as pretty low maintenance, so all this focus on my skin and my diet is taking a little getting used to.

I’m not fool enough to think this means skin problems won’t happen again, but I will do my bit. Doing these things gives me a sense of control over a little bit of this life, and as one of the specialists recently said to me – the point of taking care is so that if something new or interesting comes along, you’ll be fit and ready. That’s pretty good life advice right there.

A wee addition: I provided a ‘lived experience’ to a pressure wound symposium a couple of months ago.

 

13 April 2016

Imperfections. Blemishes. Shortcomings. Foibles. We all have them, we all struggle with them, and we all do our best to hide them or at least cover them over with a bit of … what … paint? a big hat? good humour? We tell ourselves that our imperfections are charming little quirks. That they are endearing. That we are okay or at least as okay as everyone else.

Our imperfections make us shy, they make us want to hide parts of ourselves, and they often make us feel diminished in the company of other people that we perceive to be whole and perfect. In a word, our imperfections make us vulnerable.

I used to be able to hide. Most of my imperfections – the ones that mattered most to me – were on the inside*. Relationship scars, emotional divots, being not so great at math and far worse at spatial visualisation – those things were revealed only if I wanted them to be revealed. This is where vulnerability and privacy intersect. The essence of privacy is being able to reveal what you want to reveal, when you want to reveal it, only to those persons to whom you’ve chosen to reveal it. Hardly anyone asked me to do calculus on the fly and no one gave me visualisation tests (hilarious clip from The Royal Tenenbaums … I feel your pain, Dudley). I was camouflaged and I felt safe most anywhere.

Like so much of my life, this has changed. I’m out there. My disability. My impairment. It’s all on show and there isn’t enough paint and good humour in the world to distract onlookers. I am constantly aware that the world’s perception of me has changed. I remember the first time (at an Auckland shopping centre) that someone looked at me with pity (PITY!). I registered it and thought “huh, that’s what pity looks like”. But as I continued rolling, I thought “how dare you pity me; you don’t know me; you don’t know what I’m capable of; you don’t have any idea what I can do, etc”. I wouldn’t have said I was outraged, but I was certainly surprised. Of course, this happens regularly now. Not the pity usually, but something equally gawky. I think what bothers me most is how routinely other people remind me of my vulnerability – it is the opposite of private. It’s like having a giant bruise on your shoulder and once in a while some stranger comes past and pokes it hard and you can’t really say anything because you’re not sure they meant it and you’re too polite anyway and you can’t push them away because you’re using your hands for something far more important like pushing a stinking wheelchair and your friends are supportive and lovely but you suspect they are all thinking ‘well, what did you expect? it’s a big bruise and it’s right out there and anyway they were probably just checking you’re okay and why are you so sensitive anyway’. Even though they probably aren’t thinking that at all.

I’ve been thinking about whether there is anything positive about vulnerability. It makes us more human, of course. Maybe it makes me more approachable … that’s good, right? I’m struggling to see the upside. But maybe there isn’t one. Maybe it’s just one more annoyance that I’ll become armoured against.

 

 

*(note that I am old/mature enough to have accepted that I’m not likely to be world class at anything – not running, not beauty, not cooking, etc and I no longer feel self-conscious about lack of perfection in those areas)

24 March 2016

For most of my life, I’ve found a lot of comfort in the presence of animals – the four legged variety. I had a thing for strays, I begged to be allowed to have pets of different kinds, and I was often successful in coercing my mother to see my point of view. Of course, by the time I was in high school, she had worked me out and I remember her telling me (on at least one occasion) that if I brought home one more animal, she would break both my legs. Wow. Bringing the mafia hit man out in my devoutly christian mother was quite the coup. I took her seriously.

As an adult in my own home, relieved of the threat of my mother’s cartoon violence, I’ve nearly always had a pet of one kind or another and I have always bonded with them. I believe they have souls, and I believe they are capable of feeling in ways we can only imagine.

A few years ago, way back when I was living in Canberra in what seems like another life, Steve and I brought a puppy into our lives. We called her “Friday” partly because she is my girl Friday and partly because everybody loves Friday – just saying the word makes people smile. Friday is full of possibility. She is an Australian Shepherd and, in spite of being the 7th of 7 in the litter and in spite of being the smallest of them, she has grown into a 30 kilo dog tall enough to put her head into my lap when I’m in my chair.

She is stubborn and willful, whip smart, and concerned that children are just too chaotic for their own good. She is also far more patient than most any person you could name. Before my accident, she was my running partner, she went tramping with us, and she excelled at learning new things. She got us out and about at least a couple of times a day and she was often the icebreaker at the beach or at the cafe. People want to pat her and ask about her colour, her half blue eye, her breed, her lovely coat. Without question, she is a looker.

While I was in the hospital and rehab, I missed Friday like crazy. But, there was a dog at the spinal unit who had been adopted by one of the Occupational Therapists. Floyd had been trained as a service dog, but didn’t pass his final assessment because his legs were too short! It seems a little harsh, but he couldn’t reach lights, crosswalk signals, etc so couldn’t fulfill the necessary duties. He has a great life, though, because he comes into the rehab unit most days and everyone just gets such a lift from his little furry presence.

I decided then and there that one of my goals for rehab would be getting Friday assessed and trained up as a mobility service dog. Steve and I went on the hunt for an organisation that would support us to do this, and we found Perfect Partners Assistance Dog Trust. We also needed a trainer in Wellington that would help us out – training for obedience and a few cute tricks is one thing, training for dependability, ability to ignore distractions, ability to cope with new or potentially scary stuff is a different level altogether.

We entered this endeavour knowing that, although we love Friday and we know she is brilliant, she can be a little too suspicious of people and her nature is to guard. She is also, like a lot of working dogs, excitable and sometimes easily distracted. Being away from her for months didn’t help. She became anxious if we even left the room, and a new person entering the house brought on barking and carry on that was hard to stop. We needed to get her to a more placid state – less likely to bark or turn her attention away from me. Enter Jan Voss of A.C.E. dog training.

We started out just working on settling her and helping her adjust to the idea of me leaving the room and reappearing. We moved on quickly to settling in public places, ignoring yapping small dogs, hanging out at the bus stop with people and buses coming and going, and hanging out at cafes and pubs (you might imagine that part was a real chore for me). Steve spent innumerable hours walking her and patiently working with her to get over her anxiety. Over a period of three or four months, she became a different dog, so we applied to the program and got accepted. We continued the work at home, and Friday quickly learned to pick up items that I’ve dropped and return them to me gently, get my keys, get my phone, get the remote, and open and close doors using a pull tab. She is learning to pull me when I need a little extra boost to start up an incline.

Friday received her official jacket that identifies her as a service dog in training, so we were able to access more public places like the inside of a cafe/restaurant and trains. I started taking her to work with me, and she has made quite an impression. She takes the whole thing seriously and people love having her there.

Just last week, Friday was assessed by the Perfect Partners program staff for “public access” at the Wellington Airport. She passed with flying colours. The only thing they noted for us to work on is “leave it”. The assessor intentionally dropped a couple of fresh hot chips on the floor, and in spite of me saying “leave it”, Friday ate them … really fast. She negotiated tight shop aisles with me, I dropped her lead and she stayed with me on a busy concourse, she walked in and out of sliding doors like she owned the place and she went into and out of the lift like she does it every day (actually, she does do it every day – a benefit of taking her to work). As a result of the passing mark, Friday received her “disability assist dog” tag for her collar and she has been legally registered with PPADT as dog 12, and can be re-united with me even during a civil emergency (like an earthquake).

Now in addition to being a lovely, smart companion, she is becoming an indispensable part of team Claudia. We are learning to work together in ways we didn’t have to before, and she is taking to employment with real gusto. We will continue the training, and she will have her final assessment in 6 – 12 months. Everyone has confidence that she will pass. I could not be more grateful to Jan or more proud of Friday. We have always been close, but her able assistance and her desire to do just any little thing to help makes my heart smile.

 

19 March 2016

I’ve debated whether to post this, but authentic and cathartic won out over squeamish. If you’ve come here looking for something uplifting, you may want to move on. Try another post or check out a baking blog – people do some amazing stuff with flour, milk, butter and sugar. Don’t say I didn’t warn you.

My body and I are still working out our arrangements and mostly this negotiation is about me compromising and learning and then compromising some more. Last Friday morning, I woke to the smell of poo – a bowel accident. My carer was in early to get me up and out for work, so she came in and cleaned me up, but then I had a bladder accident while trying to catheterise myself. This is how I pee nowadays – inserting a tube and draining my bladder once every four to six hours. Most of the time, it works a treat. Once in a while it doesn’t. So I did my best with the equipment, underlays, towels and called the carer back in with my breakfast. I sat there alone, smelling of filth, eating my meusli and wishing this wasn’t so. I can be miserable. I can feel isolated. I can feel lonely.

With breakfast finished, I transferred to a special chair that has a hole so I can use the toilet and have a shower. I sat there in the bathroom thinking about whether the lower half of my body would cooperate for the rest of the day. I have no way of knowing, and this kind of accident can set my confidence back. No matter how much I reassure myself that this has never happened to me in public, that I certainly seem to be empty now, that it is unlikely … I choose to stay home. And that decision by itself undoes my confidence a little bit more. I don’t feel brave or strong or courageous. I don’t feel independent.

I stayed in bed most of the day sleeping and reading and then Saturday morning woke with a cracker of a headache. I don’t often have tears from pain – not for months – but Saturday I did. I got up to use the toilet, but skipped the shower and went back to bed until mid-afternoon.

This kind of routine happens to me about every 4 – 6 weeks. Lower half gives in, top half follows and all I can do is tread water and hope that rest is enough. So what does it mean for me? It saps my confidence in the present and in the future. It makes me wonder about recovering parts of my life like travel and it makes me wonder about dreams Steve and I had together for living rural. I find myself making little deals with myself about where I will be in 6 months time or 12 months time in an effort to perk myself up, but I have no authority to make those deals. I can guarantee nothing. I can hope. I can work to get stronger. I can let people in so I don’t feel so isolated. What I can’t do is believe beyond all doubt that I will be better off in 6 months.

My recurring question to myself is ‘why on earth would I write this down and make it public?’ and my responses are many and varied. I started this because I need the catharsis of writing it down. I also started this because I want my friends and family to be able to understand what my life is like now. You may not want to know this much, but what I’d like you to understand is that the physical suffering (as icky as it is) is only a grain-sized piece of the loaf. The bulk of it is about what the physical does to the rest of me – how it pushes me to think about who I am and what I’m capable of and to think about what parts of me I have to abandon or what parts of me I can modify (with or without technology).

Strip away the physical manifestation of the accident, and you will find that in this wilderness of the aftermath, I am no different to anyone else who has been through a life changing event. We all struggle. We all feel isolated. We all wrestle with our dual identities of ‘the before’ and ‘the after’. Oddly, the fact that suffering connects us all is a comfort to me. I do not wish for it, not for myself or for anyone, but my word I am grateful for the feeling of communion that it brings.

15 February 2016

Like most children, I felt like I had to wait an eternity for Christmas to roll around. Like most adults, I feel like a year is nothing – they are all flying past at an increasing rate. This idea was a mystery to me for years until my mate, Kara, explained it to me in the clearest possible way. She said to me, when you were four years old and you had to wait a year for the next Christmas to come, you were waiting a quarter of the time you had been on this planet – 25% of my lifetime waiting! Whereas now, I’m only waiting 1/50th of my life. Seen from the other direction, if I had to wait 25% of my life for something to happen now, I would be waiting 12 years; if I were four and I only had to wait 1/50th of my life, I would only have to wait about 29 days.

What that says to me (apart from the fact that Kara is a genius) is that time is about perspective.

I’m sure you’ve felt it. Waiting for test results and it seems like 3 days equals 3 lifetimes. Being immersed in a task you love and time becomes irrelevant – it could be 3 days or 3 minutes but it doesn’t matter, time is simultaneously moving slow and fast. Our ideas of time are challenged by circumstance.

My circumstance has changed. Things I learned to do when I was young, like getting dressed, I’ve had to learn over again to accommodate changes. I would be quite sad if I spent a lot of time thinking about how much time it takes to get my shoes on or how little time it takes to flip out of the chair. Minutes are both an eternity and a flash and I am forever revising my estimates for getting ready to leave the house. By my latest reckoning, everything takes 1.5 times more time than I think it will.

Lucky for me, I’ve had an excellent time teacher for the past 9 years. I used to joke with Steve that his perception of time is different to everyone else. If he said he would be ready to leave the house in 10 minutes, I would ask “10 Steve minutes or 10 normal people minutes”. I learned not to let this frustrate me, but to let him be himself – there should always be time for that, shouldn’t there?

The secret to Steve’s successful ignorance of time can be found in the idea of ‘flow’. He has this amazing ability to engage in an activity to the point where time ceases to matter and I have a lot to learn about that (thanks to my focus on time, he describes the period of his life pre-me as ‘before time mattered’). Of course, this refers to tasks he enjoys or can at least lose himself in. It does not refer to untangling cords, a task that, by his perception takes about 20 years (our ‘normal people’ perception would find that about 5 minutes have passed). Mihaly Csikszentmihalyi came up with the term ‘flow’ and has a good TED talk about it. For me, he just could have called it “Be Like Steve”.

Since the debacle, I have discovered deep wells of patience I did not know I had. I have uncovered my own ways of finding enjoyment in the menial. I am learning to minimise the frustrating tasks (often by asking for help) and maximise the joyful ones. I can lose a day in a good book, or writing a letter to a friend, or taking my time in the kitchen to make something tasty. The challenge is to find moments in the menial that I can take pleasure in – small victories, noticeable progress, mental or physical fulfillment – and stretch them. Stretch them like crazy.

 

 

 

6 February 2016

Several years ago, Steve took me to his all time favourite music festival in southeast Queensland. We were to spend 10 days camping with friends immersed in music, yoga, african dance, sustainability talks, etc and we looked forward to it for weeks. As it happened, it rained … and rained. Each morning I would lie there on the floor of the tent, unzip the door and peek out. Each morning, I would witness something new floating past on a current of rainwater. In spite of the relentless rain, we made some happy memories there that I am unlikely to forget. It is with great pride that I tell you I was the thumb wrestling champion of the beer tent. I was able to use my extensive experience in setting up tents the wrong way to help others get theirs right. And we danced. My goodness, did we dance.

One of my fondest memories is dancing to the music of a group called Shooglenifty. They are from Scotland and their music is a bit … traditional celtic blended with electronica? dance? We were under a marquee with mud up past our ankles wearing boots we could hardly lift. The man playing fiddle had eyes like Rasputin. Steve, Wendy, Brigid and me – all hopping around like mad and laughing. It was wonderful.

When we think of paraplegia (and I say ‘we’ because it is definitely how I used to understand it to work), we imagine the person’s legs are inert. But let me tell you, they are not. They still have nerves and muscles that work, but they are no longer centrally controlled. In my particular case, I have spasms that usually originate in my abdomen and my legs follow with something like a slow stretch. The spasms started out as innocuous – no pain, not really in the way, not even noticeable to anyone else. With time, my abdomen has gotten stronger and so have the spasms. I will put my foot somewhere and it will stubbornly move somewhere else. I will try to put my foot somewhere and it will stubbornly dig in to stay put.

Being me, I decided to name them – not the spasms, but my feet. At first I thought to call them something ineffective and annoying, like George W. Funny, but over time, I might start to hate them. No one needs a body part they hate. Instead, I call them “Shug” and “Lefty”. First, because together they take me back to a fond memory of dancing in the mud with my friends and second, because the two words individually mean something. In the south, when we call someone “shug” it is short for ‘sugar’. As a nickname, it has a charming effect – both for the person called that and for the person saying it. And ‘lefty’ makes me think of a 1920’s gangster. I can’t say it and stay frustrated.

Here is a clip of Shooglenifty’s music from the you tubes. I dare you to listen to it and not have a little jig on the spot.

Now, I dream of dancing. I don’t often dream of running or even walking – I dream of listening to a band and hopping around like mad and laughing. I don’t know if my dreams will ever catch up with reality, but I hope not. As my mate, Lex, says I like having one place where I will always be able to dance.

16 January 2016

I’ve written before about how lucky I am to be surrounded by love; how blessed my existence is because of the people in it. I seem to have a talent for drawing great people into my life, and although some have come and gone, all of them make an imprint that I treasure. I have a tendency to move around a bit myself, but connections and friendships remain – some fueled by visits, skype and correspondence and some just there waiting to be rekindled at the first reunion.

My very best friends are those that bring out the best in me – those people who make me want to be smarter, stronger, more generous and more loving. They are people I trust to be honest with me whether I have food stuck in my teeth, I’m making a fool of myself in a relationship or I have more to offer than what I’m presently giving. My very best friends are people I admire and respect but who are aware of their own foibles and know we are mates enough not to hide. And I don’t need to hide from them either.

Two of these people are Kathleen and Joris. I met them many years ago when we all lived in small town Victoria. We connected through shared appreciation of camping, movies and the occasional shot of tequila, and our friendship survived relocation, career changes and relationship troubles. We keep catching up and enjoying our time together whether it’s on a drive somewhere cool or at brunch with an exceptionally bad waiter. None of it matters when we’re all together.

Kathleen and Joris were there when I fell off my bike. It was Joris’ emergency beacon (EPIRB) that brought the helicopter that took me to the hospital. When I was on the ground, it was Joris who relieved Steve in the task of holding my head out of the dirt to keep me still and stable while I faded in and out of consciousness. I have a hard time imagining their individual and collective trauma as they continued the bike ride back to the lodge in the falling light (they had to finish the ride, pack and drive 2 hours to the hospital). The only thing I remember from the first two days in ICU is Kathleen’s stern and loving words that convinced me to stay alive and fighting.

They, along with Steve, Jean, Beth and Dorothee, made up the core of the Wellington branch of Team Claudia. Now, opportunity and career moves beckon. It was bound to happen, but that doesn’t make it easier. Kathleen and Joris are moving to a whole new country. Thankfully, they will still be in the Pacific rim, so there is a good chance I will see them over the next couple of years. It is still hard to say goodbye. It is hard to feel happy about parts of the core moving on … and away.

This accident and its aftermath have served as an anchor point for our friendship. It has certainly strengthened our bonds and has taught us all about vulnerability, strength, love, compassion, joy and fear. Moving on from that is scary. In a weird way, I want the bubble of the aftermath to continue, and on reflection, I think it’s because I want to hang on to that excuse or that circumstance that allows us all to stand together in mutual admiration and comfort. Unfortunately, it is a rare thing to hold our friends close and speak about respect and joy and sorrow. You know how it is, the family reunion that only happens at a funeral, the gratitude that only gets expressed in the brief moments of a holiday feast. And we all say ‘why is it so?’. And we all depart and carry on with our lives.

I know Kathleen, Joris and I will continue our friendship. We’ve been together and apart many times over the years, so this is nothing new. This time it has been a bit intense (understatement of the blog so far) and I hope we will remember it well.

I also hope that I can do better at holding fast to your hand. I hope that I can bring a little bit of that loving intensity to our relationship so that for the briefest of moments, we are present and reminded of our significance in each others’ lives.