Category: Uncategorized

22 November 2017

 

Well, my girl Friday finally made it. Perfect Partners Assistance Dog Trust did their final assessment of team Friday on 10 November. It was a Friday – auspicious. Belinda and her team came to the Ministry where Friday and I work four days a week so they could see her in her element. Friday waited patiently at my desk while I went to get the assessors from Reception – down, stay while I’m out of sight; tick. Friday had to have a sniff of each new person, but was calm about it; tick. We went into a meeting room to have a chat and (without a lead) Friday walked along beside my chair and went straight under the meeting room table with hardly a hint from me – drop the lead and the dog stays with you; tick. We went into the kitchen and Friday dropped and stayed just at the entry (she’s not allowed in the kitchen at home or at work – this is not a Perfect Partners requirement, it’s a Claudia requirement) – down stay while I do something without her; tick. We went downstairs in the lift to get hot chocolate from the local cafe – Friday came into the cafe, didn’t eat off the floor (miracle), was placid, and relaxed next to my chair while we waited for our takeaway; tick, tick tick.

Passing doesn’t really change anything for Friday. While she was in training, she was allowed to go everywhere with me, and she had jobs to do. Now she goes everywhere with me and has jobs to do. The upside is that we don’t face assessments every couple of months, and we can confidently enter new situations with new people because we both know Friday can handle it.

People love her – they love seeing her at work and she is coming around to the idea that strangers are pretty good at giving pats or just being cool.

Lucky for us, most Wellingtonians understand about a working dog and they (usually) ask if it’s okay to pat her or say hello. Friday also opens up conversations, and people randomly show me pictures of their own dog or they open up about a friend or relative that has a working dog. She is an icebreaker without even knowing it.

In the shops, she walks along quietly and only lifts her nose to sniff when we’re in the meat aisle. I’m sure she would love to climb into the butcher’s window or have a red hot go in the cheese room, but she controls herself nicely.

I’m sure there are people who don’t like seeing her around the food they are about to purchase. No one ever says anything, but it would surprise me if a few people don’t like it. I try to control for those people by making sure Friday is always clean and tidy, she never jumps up on me or anyone else, she stands or sits quietly at the check out. I want people to experience the best of her so they aren’t frightened or worried or disgusted. She is my responsibility in addition to being my mate.

We look after each other. She can find my phone, pick up things that I drop (I can reach the floor, but if something rolls under a table or my desk, I’m sunk), open doors using a pull cord. If I call out to Steve and he doesn’t hear me, I call Friday and ask her to go get Steve. She lifts the mood. She makes people smile. She leans into my chair and rests her head on my lap and it makes me feel so happy that she’s in my life.

We’ve done this together – me and Steve and Friday. We achieved the goal we set while I was still in the spinal rehab unit and I feel a winning combination of loved, loving and unstoppable.

 

 

13 April 2017

On 29 June 2015, I was discharged from the Auckland spinal rehab unit. On 17 July 2015, I went back to work. I started slow at 10 hours per week, but I was determined to get back to it. For the first couple of months, I felt like I needed work more than it needed me – like I was benefiting more from being there than anyone else was benefiting from having me in the room. I didn’t feel bad about that, but I was pleased a few months later when I felt like the balance had shifted and I was making a contribution.

Now why on earth, one might reasonably ask, would I be so keen to get back to the grind? Why would I want to go back to work, when by all accounts, I love my time away from work?

I think the answer lies first in how I identify myself, and second in what it means to have an occupation. Although I ran regularly for 30+ years, I swam well enough to do it for exercise, I played tennis socially, and I bushwalked or cycle-toured on holidays and weekends, I did not identify myself as athletic. My physical being was clearly important, but it was not my identity. My brain, my intellect, my way of thinking – that was me – and the head injury I sustained in the accident put that at risk. I needed to make sure I could still use my brain – that it was functioning and that my identity was intact.

That was me coping. That was me in the bunker pulling back to what I knew and maintaining that as my focus. For months, the phrase “keep it together” played on repeat in my head like the sound of a train.

That was also me occupying myself. I didn’t want to constantly focus on my physical situation. Of course, I attended physio sessions, I worked at the gym, I learned what I needed to learn so I was able to get around at home and get around at work. But work took me out of my own head, helped me shift my perspective for a few precious hours each day and allowed me to contribute to something outside of myself.

Coping is a beautiful thing that we all do. We can imagine a person finding that space where getting by doesn’t require any new effort and we can imagine that a person might call it home and a person might settle in there for the duration.

Alas, that content-with-coping person is not me.

Going on that holiday to Australia in December was one of my first ventures back into life. It hurt, but it was necessary. I realised how badly I need skills and purpose so that I can relearn my independence and reassert myself into the world. I won’t be the same. I won’t ever be the same, but I need to learn how to be in a world that is the same. Rather than staying with coping, I’m moving along the spectrum to adaptation.

I thought what I would be describing in this post is resilience, but being resilient means being able to withstand a shock and recover to function just as before. Being resilient means, ultimately, to be able to resist change. I’m not in a position to do that. In order to be independent and to bring my best self to the world, my whole perspective, my whole way of interacting with the world has to change.

2017 is my year of independence. In a couple of weeks, our new car will be modified with hand controls so that I can drive. Sometime later (maybe a month or so), the car will go to Christchurch to be fitted with an Abiloader so that I can go places by myself without worrying about loading and unloading the chair. Someday soon (I’m told), we will have a set of plans for modifications to our new house – modifications that will increase my independence in activities like cooking, and gardening.

I’ve also taken time off work this month and next to work with my Occupational Therapist on wheelchair skills and with a Physiotherapist on new or different sport activities. I’m trying swimming, basketball, and maybe even cycling. I want to find a sports activity that makes me stronger, sure, but also one that takes me to that lovely meditative immersive space in my head. I want to fulfill the new me – the me that is different, the me that has come to terms with a new way of being, the me that will contribute to the world in new, different and interesting ways.

My aim is to be completely independent in my new neighbourhood so I can wheel to the library, the shops, the cinema, etc by myself or with Friday. Steve is always invited, but this way, he won’t feel like he has to come out of need or “just in case” – he can come because he enjoys my company and because he knows I know where the good coffee is.

This will be the me that has not resiled, but who has adapted.

24 December 2016

It was the best of times; it was the worst of times. It was a time of elation; it was a time of exhaustion. It was a silken cocoon of love; it was a punch in the face that went on for 10 days. It was confidence building; it was soul shattering. I laughed, I cried, I loved, I resented, I wished, I realised, I coasted, I pushed, I learned.

On the upside, we caught up with friends and family and got a top up of love that neither of us realised was so low. We spent days in the physical and mental warmth of Byron Bay and the Gold Coast being a little spoiled and catching up on the lives of our friends and family – things we’ve missed, things we knew about but wanted to know more of, even meeting new additions to families. All of it so important and so lovely. I would not trade my hours of sharing and communing for anything. In Canberra, I spent hours with a couple of friends in particular who reminded me of good times and what it means to pass five hours as if it is five minutes. I re-connected with friends who have had life-altering experiences. We were able to share our highs and lows, creating new pathways for our ongoing friendships.

On the downside, I was reminded – brutally – of what I am not able to do. Traveling to places that I enjoyed as an able-bodied person brought home to me how much I rely on Steve and others to do just about anything physical. I couldn’t go anywhere alone. Not one place. I couldn’t swim in the sea at Wategos, I couldn’t pop in and out of shops on Lawson Street, I couldn’t go to the National Portrait Gallery or black mountain. Everything was so familiar and so completely out of my reach. It hurt. It made me feel like I’ve wasted time. It made me wish and resent and feel sorry for myself.

On the upside, I spent a little time with Timothy Lachlan working on wheelies, gutter crossings and popping up curbs. I have a lot of practicing to do, but he was encouraging and helpful and generous with his time and experience. Video to come – I promise.

On the downside, I learned a couple of these skills in rehab, but the skill learning and practice was interrupted by the need for bed rest. The practice with Timothy just reminds me that I should have been able to do these things already and I should have been practicing and working on them for the past 12 months. I should have been further ahead by now.

On the upside, the plane trip was a piece of cake. I have to tote a bunch of stuff with me these days – no turning up at the airport just in time to walk onto the plane with a carry on; those days are definitely over – but the ground and air crews are incredibly helpful and I’m feeling quite confident that I will eventually be able to do this with some regularity if that’s what I want. I also feel more confident about the possibility of going further afield, which is such a welcome feeling.

On the downside, I have to take so much stuff and need so many skills that I doubt my ability to ever travel solo again. I think I will always need help into the airport and I will need to be met at the other end, even if I can fly alone. That has implications for work travel and implications for going anywhere I want to go by myself. Traveling and moving alone was the source of a lot of my confidence as an adult. Knowing I could do it reinforced my feelings of capability and strength. Not being able to do it, well, I’m not back at zero, but it’s pretty shit.

Steve, in his way, referred to the holiday as a ‘growth experience’. Coming from anyone else, I would have called that a euphemism right before I ran over the toes of the person that said it, but he didn’t mean it as a way of glossing over anything. Growth isn’t easy. In fact, I’d be hard pressed to come up with anything I’ve ever learned that came without effort. It was confronting, and shitful, and it made me weep. But it also made us stronger, and better equipped, and it made our relationship(s) deeper. It also made me realise that I need a holiday.

7 December 2016

There was a time when I was in love with my wheels. I started riding a bicycle regularly on off-road trails with my friends in Tallahassee – Munson Hills, Tom Brown, Redbug – and when I moved to Australia, I took my trusty bike with me (including on planes, in Ed’s open jeep, and on trains). My first trip around Adelaide was on my bike. My first trip to Kangaroo Island was on a bicycle, by myself, camping and riding. My first trip to New Zealand included a bicycle tour of the South Island. I worked a bike ride into nearly every trip in every country on every holiday. My bike was my preferred means of travel when exploring a new place – faster than walking, but still part of the environment; being in it and part of it rather than moving through it.

A couple of months before the debacle, I put a deposit on a new touring bike – the bike that was to take me many, many more places. A handcrafted Llewellyn. I visited Darrell in his workshop in Brisbane and he measured me up … and his lovely wife made dinner for us. Amazing attention to detail and the craft of cycles. I felt like I had toured enough with big groups, small groups, and by myself to have worked out a good combination. I was scheming and dreaming about what my first trip would be on my Llewellyn – Vietnam? Italy? Japan?

But now here I am with four wheels instead of two. Compared to how I felt about the touring bike, well, this is a little more like an arranged marriage. I didn’t look at it and swoon, it was chosen for me. There wasn’t any chemistry and there wasn’t any honeymoon. Here we are, the TiLite and I, working it out and trying to make the best of it.

Being who I am, I’ve decided that perhaps I can do better than just making the best of it. Maybe I can re-frame the situation and learn to love the chair. On the upside, if it weren’t for the chair, I would … what … be in bed or at least stationary all the time. Or I could have one of those wheelchairs like they have in the airport that someone else has to push. I find it excruciating to ask someone to reach a mug for me in the kitchen, can you imagine how miserable I would be if I had to ask to be pushed everywhere? I can imagine it, and I wouldn’t wish that on anyone. I could have a power chair that doesn’t fit through most doorways and that is too heavy to pack into the car. Okay, so things could be much worse. The question is, could they be better?

Enter Aaron Fotheringham and his attitude “It’s wheels stuck to your butt. How is that not a good time?” He’s the guy who opened the Rio Special Olympics with a flippin’ wheelchair backflip through a flaming circle. And, of course, Katherine Beattie who I’ve praised in this blog before, but who is (in this clip) bailing several times in a row … and persisting.

I asked you all about inspiration before, and whether it is enough to have the thought without the follow through. I don’t think it is – not for me anyway.

So, Step 1: find the model. Tick. See above.

Step 2: find a teacher. Timothy Lachlan – WCMX competitor who lives on the Gold Coast Queensland. Tick.

Step 3: connect with the teacher. Tick. Yay the internets.

Step 4: get your gear. Tick.

(and yes, that is indeed a camera mount on the helmet. gnarly shit coming your way … or more likely, high definition images of me a) leaving skin in Queensland; b) chucking a tanty; c) cracking the sads; and d) eating an ice cream while pouting)

 

Step 5: video the carnage. Not there yet.

Step 6: get comfortable with wheels stuck to your butt. Not there yet.

Step 7: fall in love with the chair. Not there yet.

Steve and I are headed to the Gold Coast on Friday. We’ll have a little break before meeting Timothy on Monday for a couple of days of learning and practicing. I’m not aiming to do flips or glide on rails, but I’m looking for skills that will help me navigate cities without help. I have no idea whether this will work, but I’m so excited about learning new skills that I think will facilitate my independence. Then we’re off to Canberra to catch up with a few mates and back to Welly in time for my birthday. In addition to the chair skills, we’ll practice traveling and going without professional carers and being in unfamiliar places. Can’t wait.

9 October 2016

It will surprise no one to find out that my first sentence was “I can do it!” usually accompanied by hand flapping and maybe a grimace. One of my earliest memories is of my mother walking away with her hands in the air saying “well go on and do it yourself then” and my very conflicted feelings of “I hope I didn’t hurt her feelings” alongside “yay! finally! victory is mine”. “Victory is mine” won out and I went on with my task rather than inviting her to come back and help some more.

I’ve been thinking a lot lately about what it means to be given too much. To have too much assistance. To be given unwanted gifts. To be given unsolicited advice. All of these unasked for things are landing in the same basket these days and my basket is just about full. Time to tip it out here in front of you, my friends.

I have in-home care courtesy of the ACC. Cool. A person comes into our house every day and takes up my slack with the housework and provides the support I need to get myself up and out the door. As I have gotten stronger and more adept at this whole paraplegic caper, I can, of course, do more for myself and for us. More than that, I am craving privacy and freedom from ‘outsiders’. I have no doubt that this person cares for me and for Steve. I have no doubt that her intentions come from compassion and concern. I also have no doubt that if I allowed it, she would absolutely rob me of skills just by virtue of doing everything for me and stepping in rather than even letting me try. That would not be her intention, but it would happen, and I cannot let it be.

Sometimes it is easy to ask her to back off. It is easy to say, “no thank you, please let me try first”. But I find myself wishing she wasn’t here. Wishing she would leave early on the weekends. Wishing (honestly) that she would just piss off.

Which sounds horrible. Which sounds ungrateful. Which sounds, dare I say it, impolite.

And none of this is any different to a person coming into your house bearing gifts that you don’t need or don’t want. Since when did polite become mutually exclusive with honest? Why can’t I say no thank you without feeling like I’m ungrateful? Why can’t I be grateful for the intention without being grateful for its particular manifestation?

And none of this is any different to a person offering unsolicited advice about … well, about anything really. How one ought to live, how one ought to eat, how one ought to exercise, how one ought to dress. I should start keeping a tally of unsolicited advice in the categories of helpful and not so helpful. And the unhelpful could be put into sub-categories of bleeding obvious, rude, thoughtless and unhelpful-bordering-on-harmful.

The sucky suck suck part is that I am worried about being impolite because in about 30 seconds I’m going to have to ask that same person to help me do something. Galling. Bloody galling.

I’m pretty sure all of this relates to my current condition. I’ve had to rely on others for about 18 months now. I’ve had to open myself up to letting people look after me, asking for help on a daily (at times, hourly) basis – to reach something, to open a door, to carry something. I’ve been opening myself up by virtue of appearing vulnerable even if I feel strong and capable. It’s getting old, but I doubt it is any harder for me to wrestle with than it is for anyone else. Please share. Make me feel less alone with your stories of ingratitude in all its shameless victory.

 

 

 

4 September 2016

We bought a house, but it will take months to design the renovations, get a builder in and get it ready for us. In the interim, we are renting. Of course, the owner of the house we rented for the past year wanted to put it on the market, so in addition to finding a house to buy, we’ve also had to find a new place to rent. And move into. And eventually move out of. Ugh.

We’ve moved into a house that suits us, for the most part. On the up side, it is warm and dry, it has a couple of lovely sunny spots for sitting and reading or playing scrabble, it has a big deck on the back that I can access by myself to throw the frisbee for the dog (in the previous house, I could get outside onto the deck, but couldn’t get back inside without help – drag), there is a predator free nature park nearby that supports loads of birdlife, so we hear a much more diverse dawn chorus in the mornings, and the commute to work is only 15 minutes with zero time on the motorway.

On the downside (you knew this would come), I get to learn a new suite of skills associated with access. So far this past year, I’ve learned to get in and out of bed by myself, in and out of the car (not quite by myself as Steve still has to pack and unpack my chair), up and down ramps by myself and in and out of the shower. Of course, new shower set up means a whole new skill set. The ideal shower set up for a person in a wheelchair is a wet area shower. Basically, a fully tiled room with no door or curtain. This set up is actually becoming more popular as a bathroom design, so yay, it won’t be hard to explain for the renovations.

The ensuite in this house is shiny and modern, but I have to get in and out of the shower by transferring from a shower chair onto a bench. Unfortunately, the bench sits right in the shower door in such a way that I only have a gap of about 3.5 inches (not quite 9 cm)  to get my feet and legs in. That’s heaps you say? Perhaps I should add, I have a gap of about 3.5 inches to get my uncooperative feet and legs in. Shug and Lefty are not exactly models of unity. I’ve spent a lot of time each day the past two weeks trying different approaches. My feet and lower legs have bruises and scrapes from the shower chair, the shower door, the shower bench, my own grippy hands … all testifying to the effort.

The sad part is that, although the shower has historically represented several of the most uplifting moments in my day, it has recently become a real chore. By day three, I was feeling like getting in and out was more closely akin to rock climbing than to pleasure. Lift this leg here, bend the knee, push the foot back … no, wait, lift the knee up a little higher … hmmm, that’s gonna leave a mark … scoot across, uh oh it’s back out again how did that happen? alright, now the left, etc.

Yesterday and today? in and out in under 5 minutes. That’s right.

https://www.youtube.com/watch?v=tjdF7VJSc6U

31 August 2016

I’ve been having an internal debate about inspiration, and my central question is this, “is it possible to be inspired but not act, or is action a necessary follow on?” If one doesn’t act, is the ‘inspiration’ really just a passing thought? Don’t I have to do something to claim I was inspired?

The reason I ask is because Katherine Beattie at the skate park kinda blows my mind. I’m not interested in doing backflips or sliding along on rails, but I can’t get out of my mind just how liberated I would feel with this level of skill. I would laugh at curbs, sneer at stairs and treat ramps with disdain.

 

And so I am inspired. The question is … what next?

 

 

 

13 August 2016

You’ll just have to believe me when I say the Wellington housing market is a special kind of crazy. I don’t understand it entirely – don’t really want to – but I can tell you that the estimates put out by council and those put out by the agents are all wrong. And not just a little bit wrong. Hundreds of thousands of dollars wrong. We sold our house way back in April for more than we thought possible, but of course, we are buyers in the same market. Kinda takes the shine off it.

For months, we have been looking for something that suits us. And I do mean us, not just me. Over time, we’ve come to realise how valuable accessibility is. The house, of course, but also the neighbourhood. What is the point of being able to get outside if there is nowhere to go? In Wellington, the challenge is multiplied by terrain, unfriendly weather conditions and an occasional lack of engineering forethought for pedestrians and wheelchairs alike. We ruled out whole suburbs based on terrain and inexplicable interruptions in footpaths. We ruled out streets based on traffic and the safety of the furrier members of our little family.

We looked at more houses on the internet than I could bother counting, drove past many that were ruled out without going inside, attended open homes nearly every Sunday week in and week out, participated in one auction, one ‘price by negotiation’, one possible private seller that we made contact with through a letterbox drop and two tender processes. We’ve basically had at least one builder, one lawyer and one occupational therapist on retainer.

At long last, here she is.

Cute, eh? 1950’s built, loads of windows and light, northwest facing. A 500m flat stroll to the Roxy cinema and la Boca Loca, a few metres more to the local library and the supermarket. If we round the corner for a stroll in a different direction, we’re only a flat 500m to Cafe Polo and Lush Puppies. We’re also a flat 400m or so from the Hound Lounge – Friday’s favourite doggy day care spot. Nearby is also the Larder, a low-key but locally famous (award winning) resto, and La Rotisserie du Canard sets up on the roadside where we will pass it nearly every day. There are dog baths, movies and potatoes roasted in duck fat in our future.

For visitors, there is the Weta workshop and the beach at Worser Bay. Plus the airport is less than a 15 minute drive away.

All upsides.

On the downside, it is on a battle-ax block (also called a ‘rear section’ in NZ), so it is surrounded on all four sides by houses. Everywhere you look, house. The section (or block, or allotment, or yard) is small. The house itself is 3BR and 1BA with a smallish separate kitchen and a smallish separate laundry. There will be changes. We’ll be working with the ACC and their contracted architects and builders and occupational therapists to make changes to the garage and the inside. There will be a new ensuite with a wet area shower that I can roll into unaided (yay!), a kitchen design that suits my working height, and hard surfaces throughout for me to roll on with pleasure. We’ll also be working with landscapers to do something with the block so that we aren’t looking out to other houses or even just to fences. There will be double glazing and a good heat source. There will be covered areas so we can get in and out of the car in Wellington’s worst weather conditions.

Ideas and suggestions are welcome (that means you, Karen).

It will be months yet before we can move in, but we are so happy and relieved to have a new house that we can make our own. And as happy as I am for me and us, I am doubly happy for Steve. The man has a need for roots, and the lack of a place to call home has been heavy. It is so good to see the smile on his face and the weight off his shoulders. We are blessed and lucky.