Author: cboyles

31 December 2015

Nine years ago (approximately), Steve tackled me on the beach in Byron Bay and planted a whopper of a kiss on me that continues to reverberate. Yes, there is a minor, ongoing disagreement with the words “tackled” and “me” and “Steve” and who really did the “tackling”. What is agreed is that the incident was the start of a new kind of relationship for us. We had been friends who ran into each other at work from time to time, we went to the movies once in a while, we had the occasional glass of wine and a chat. That kiss opened the door to a new world of richness that neither of us had expected.

We haven’t always known how to describe or define our relationship, especially early on. We just agreed to treat each other with love and respect and let the rest of the world put a name to it. This little tactic kept us from making assumptions about each other and required that we talk in descriptive terms about where we wanted to go, what we wanted to do together and how we would live in each others’ company.

We kept the love alive while I lived and studied in Fiji. I lived in Canberra and then we lived in Canberra. We moved to New Zealand and bought a house and designed renovations together with an architect.  There were a few very comfortable years when we probably did make a few assumptions about each other; about where we were going and what we were doing together.

The accident in April changed that for us. Suddenly there were question marks over nearly everything present and future related. I say “nearly” because the one constant has been our way of treating each other. Steve nailed it in the hospital when he said to me that this kind of life event amplifies everything else. If we had been terrible communicators, we would now go for days without speaking; if we were the type of couple who bickers, we would now be the type of couple who fights visibly, audibly, bitterly.

Lucky for us, what this life event has amplified is love and respect and a healthy dose of laughter – even when things are at their worst. We have our moments when one of us might need a juice box and a nap or a clean up and some heavy pain relief … possibly both, but the accident and its aftermath have opened the door to a new world of richness that neither of us expected. Again. As it happens, this story isn’t a tragedy at all, but a love story.

I have loved him from the start – his insight, his huge soft heart, his confidence in us. I saw it all then, and I see it all now multiplied.

I absolutely wish that I could give him a healthy me, an easy ride into the rest of our lives together, the fulfillment of dreams we had. Instead, we have to find new ways of being together, new ways for me to accommodate a changed body and new ways to navigate the world hand in hand. We have to face the question marks together and change them one by one.

This post is for him. I write it with gratitude and humility for his love. For our nine years together. For the hope of many, many more.

22 December 2015

I’ve never been much of an equipment person. The whole reason I loved running was because it was just me and the shoes – no racquet, no bat, no ball, no tires, no tubes, no ropes. Just me, a t-shirt and shorts, and shoes. You can imagine the mind boggle I have when it takes two hours to ‘script’ a new chair. Every piece and every millimeter of placement of each piece matters.

But gee, isn’t she a beauty? It’s the same type of chair as the one I’ve been trialing – a TiLite ZRA – but it has a few modifications and a few adjustments just for me.

It is made of titanium and has a lovely green colour near my feet at the front casters and behind the wheels at the axle level. The colour is “sub-lime”. It weighs about 4.9kg (just over 10 pounds) without the wheels.

The wheels are ‘spinergy’ and the tires are schwalbe bike tires with kevlar to help prevent punctures.

And check this out – disc brakes. Not only can I slow down on steep declines, I can stop one wheel and corner like a mother- … well, like a person who might get a certain level of satisfaction from turning quickly.

The push handles not only fold down and out of the way, they telescope up and down so that a tall person pushing me doesn’t have his mouth right next to my ear while he’s complaining. Not that I know anyone that would need that feature.

And look! Fat tires for off-road! The hubs are quick release so the tires can be swapped out and because the brakes are in the hub, not on the front of the chair, they don’t have to be adjusted when the tires are switched out.

Once I get better at it, I’ll try to put up some video of something fancy like wheelies over curbs.

Equipment is not cheap, and once again, I thank my lucky stars I didn’t have this accident in a country with no national health insurer. In addition to the chair, I have a companion bed that is motorised on my side but flat for Steve. The mattress has pressure relieving qualities so I don’t get pressure wounds from lying in the same position for 8 or more hours. I have a special folding frame wheelchair that I can take into the shower. I have a frame underneath my lounge chair to raise it and make it easier for me to get in and out. I could floor you with how much these things cost, but in all honesty, I don’t know. I never see an invoice, I never touch order forms, I never have to seek reimbursement for these things. It all magically happens and I could not be more grateful.

 

 

12 December 2015

During the last 10 years or so of my mother’s life, I was living on the opposite side of the world from her. We wrote letters to each other, and we talked on the phone. Sometimes she would fill half an hour with rambling stories I’d already heard twice before, sometimes it was small town news. The point is that although we still felt close, our relationship had become auditory and verbal, not tactile or visual. Since her death in 2009, she has taken on many of the philosophical qualities of Schrodinger’s cat – I can’t see her, but then, I didn’t see her much before either. Our relationship is still non-visual, so it is sometimes hard to realise that she is not sharing the same earth with me anymore. But I can hear her. When I am making polenta (closest thing to grits I can find) and I start to stir in that extra spoonful of butter, I can hear her say “We know what’s good, don’t we, baby”. Her voice is as clear as it would be if she were standing behind me, urging me to use more butter. Sometimes it catches me off guard and I cry. Not a sweet little tear running down the cheek, more like a sneeze – it is automatic, sudden, unthinking grief.

And that’s how grief is. For a little while, it is a constant companion. Then it eases. Then it comes back with a vengeance. Then it eases. Even as I think it is gone, it lurks. It is no further away than my ability to recall – sometimes accidentally.

In my current situation, I wonder sometimes what it is I’m grieving, but I’ve come to realise that it isn’t one thing, it is a multiplicity. It is the same with the loss of anything – we grieve for the loss itself, we grieve for the future, we grieve for the empty space inside. We grieve in every possible tense – past, present and future. Is it any wonder that it goes on for so long? Is it any wonder that it lurks?

I arrived at work last week in a fine mood. My morning had gone well. Traffic was okay, and Steve and I had good car conversation during the commute. Nice. I was in the car in the basement carpark, and Steve was getting my chair. I happened to look up just in time to see a colleague running for the lift, and I burst into tears. I can’t run for the lift. I will never run for the lift. One day, I won’t remember what it felt like to run for the lift. I won’t remember the pound of my feet. I won’t remember the flex of my thighs or the tightness of my calves.

But we are constantly adapting, Steve and I. There are question marks over so many things that I might be able to do again, albeit in a changed form. So my grief is tempered with possibility and by our desire to be more and do more. Possibility helps me keep going, helps me keep trying. Possibility fills the hole a little bit. I don’t know how long I’ll grieve about this. Maybe forever, but maybe less sharply with time.

 

6 December 2015

When Steve and I embarked on the house hunting 2 years ago in Wellington, we decided that the house needed to have some “Wellington-ness” about it. We needed, for example, a view of the harbour; or maybe a little bit of steepness on a narrow road; or native bush views with visits from Kaka – something that would say to us “you are in Wellington and nowhere else”. What we got was a lovely house perched on the side of a hill with walk-on access and a view over the suburb of Miramar. We parked on the street above and walked down 80 steps or parked on the street below and walked up 50. The house was built in 1967 and hadn’t really been touched since – you can imagine the wallpaper, the built in shelving, sliding doors to some rooms … Alongside an architect, we made plans for renovations. We got reticulated gas piped to the boundary in anticipation of a new hot water cylinder and a radiator heating system. We got approval from the Council to make changes. A week later, I did the unimaginable. I haven’t seen the inside of the house since – can’t get there in my chair.

The only possible way of getting access to the house would be to get right of way over the neighbours’ steep driveway, cross over the Council pedestrian accessway and make our own new driveway. To make a long story a wee bit shorter, the neighbours (for good reasons all their own) have said no to the right of way. No to access by car. No.

ACC would have funded any accident related modifications to the house in Seatoun – for example, they would have made a wet-area shower that I could roll into, they would have modified the kitchen for my use, they would have widened doorways so I could fit.

We now find ourselves in the market again. We will sell our house. We will buy something else. The ACC is still supporting us. They continue to pay our rent while we look, they will help us sell the house in Seatoun, they will modify the house we buy. Great. The biggest impact on that front now is time.

It took many months to find the house we wanted in Seatoun, and I expect that to happen again this time. And then the modifications. Petone will be where we live for a while. It’s nice and all, but we are not settled – there are things we won’t unpack, there are rooms we would like to change, but we won’t, we won’t make a garden. It will not be home.

It seems like I should be able to think about this as just a house we sell to move to a new house. Big whoop. But for me, this is not about selling, it’s about why we must sell.

I loved the plans we had for the house in Seatoun, but not being able to go back makes me think of the things I am unable to do and the dreams Steve and I had that we cannot now fulfill because of me.

Steve says it is not because of me. He tells me it is because of my condition, not because of who I am. I say to myself from time to time that I am not my wheelchair in the same way that many people must say “I am not my cancer” or “I am not my epilepsy”, but it is still hard for me to make that distinction. What has happened to me has had impacts both inside and out. There must be many other conditions that affect any one of us deeply but do not determine who we are. Disease? Loss? Grief? Children? Marriage? The outside is so radically different, but the inside persists. There are some impacts my condition has that I welcome. This new condition has allowed me to experience the generosity of strangers that I might not have seen before. I think about access and the capability of movement in ways I never considered. Those are good things to have awakened in me, but how do I let radical external changes in so they can help me reflect and change for the better without letting the external conditions demolish or determine who I am?

 

 

22 November 2015

Because I had broken ribs, I was completely paranoid of sneezing. I didn’t think about it too much, but I did worry about what it would feel like that first time. Given that I often sneeze 4-6 times in a row, you can understand my concern. It was at least 2 months after the accident that I felt the build up – but the sneeze that happened was the most dainty little outward sniff I’d ever experienced. Phew.

Fears replace fears, so the new one was falling out of the chair. The only time I really let loose with expletives in rehab was after a quick roll down a steep incline when I felt completely out of control and ended up stopping short and leaning well forward in the chair. I didn’t fall out, but I certainly gave the Occupational Therapist a bit of blue streak for her trouble. After that, I knew it would eventually happen and before long I found myself wishing it would happen just to get it over with. I wanted to fall out and live so I could dust myself off and stop thinking about it. I’m sure you know where this is going.

This evening, Steve, Friday and I went over to the lovely Esplanade for a roll/walk. Over the last couple of weeks, I’ve been trying to get out for a quick push a couple of times per week – sort of treating it like a run. Going a bit hard for 25 minutes and then cooling it on the way home. There I was, pushing along at a nice pace and looming before me was a manhole cover set in the pavement, but with a nice yawning gap and about a 1.5 inch lip. I was staring at it for several meters – do I stop? do I go hard and get over it? I went hard. I did not go over it. The chair went left and I went right. I might have made a sound a bit like a chicken before hitting the ground with a thud. Honestly? It wasn’t so bad. Steve and a kind passerby helped me up (thanks, Amber, for teaching me how!), and I think Steve scraped one of his fingers in the process – he was the only one with any blood to show for it. My very rugged belaying gloves proved their worth.

I fell out and it wasn’t a practice and it wasn’t onto a cushion. One less thing to be concerned about. That’s not to say that I won’t be careful or that I will treat manhole covers with anything other than the respect they deserve, but I won’t be so worried now that it will necessarily hurt or that it will necessarily end with a whole new wound. I’ve never been very good at worrying or spending much time thinking about what could go wrong. It is not in my nature. When it does happen, like worrying about falling out of the chair, I’m stumped. I don’t know how to think about it in any productive way, and I don’t know how to put it completely out of my mind. I’m interested in the idea that what scares me or worries me for the most part, is physical pain. I don’t seem to worry about embarrassment or failure.

I’m sure something new will come along to replace the rapid ejection from the chair as a fear, but for now, I’m pretty glad that one is gone. What a happy way to end a weekend.

 

17 November 2015

You would know, but Steve and I have not been alone in the aftermath. You would know because you are very likely one of the many people who supported us. From the moment I hit the ground, there have been people supporting us – some from a spot a little closer than others. So much energy and life coming our way that it can sometimes be overwhelming. I’ve been loved and cared for, and through it all, I’ve learned a lot about my friends and family. Pain and coping are revelatory, and so are the ways people go about comforting a friend. Many of my friends have shared their own personal suffering, not by way of comparison, but in a search for commonality and by way of reassurance. I was caught off guard by letters from people I had never received letters from before and by messages and thoughts that were conveyed (and are still being conveyed) with such compassion they would bring tears. I’ve even been figuratively knocked into shape by a friend who thought I had more left in me than I might have imagined at the time. I have been made stronger by you.

Now that we’re home, there is a whole new team of professionals here to help. It’s great in many ways, but like most aspects of life, the sheer number of hands can make things complicated. So here are some numbers:

4 – Occupational therapists – one for my personal equipment (bed, wheelchair, shower chair ramps, any other equipment in the home that can make things easier for me or facilitate my independence); one for work (desk, wireless keyboard, makes sure the building is user friendly and even evacuation friendly); one for our house (works with the architect and builder to make sure I can reach light switches, use the kitchen and bathrooms, access the garden); one for driving (assesses me and my capability to operate hand controls and helps us choose a car that can be modified for me to drive)

4 – Doctors – one GP (local who I adore who makes sure I’ve got the medications I need and that I’m rehabilitating well. He also makes gin for fun); one vascular surgeon who makes sure my aorta is good for another 12 months or 10,000 miles; one orthopaedic surgeon who makes sure my titanium frame is fitting in nicely with my actual bones; one neuropsychologist who makes sure my brain is recovering at the expected rate

1 – Massage therapist that I see about every three weeks helping me to keep my muscles and joints healthy and flexible

1 – Physiotherapist who gets me good equipment (standing frame) and keeps me on the straight and narrow with strength and endurance training and with practical skills like transferring (from chair to bed, from chair to car etc)

1 – Personal carer who helps me getting in and out of bed to the shower and back and takes up my slack around the house (cleaning, food prep)

1 – Grief counselor who listens to me and encourages me to increase the things in my life that bring me comfort and joy and decrease the things that don’t. Life advice for everyone really.

1 – ACC case coordinator who holds it all together

I haven’t even met the architect and engineer who are drawing up plans and getting costings for the house access and modifications (ACC may or may not approve – long story worthy of its own post).

I am surrounded by models of caring from the professional to the casual. Lucky doesn’t begin to describe it.

All of this makes me think about my own ways of coping and my own ways of comforting others. I have my own stores of strength put there by my mother’s fine example and hardened and topped up by life choices that didn’t always add up to safety, good health, money in the bank or even sanity. But they were my choices and the lessons have served me well – meaning that at the very least, they have made me resilient. I am, of course, ever hopeful that I will be able to stand with my friends and family in any tragedy or in any imperfect life situation. I am hopeful that my presence will be the necessary balm theirs was for me. I’m learning what vulnerability does for a friendship and how it lends authenticity to words of sympathy or sorrow. I’m not there yet, but I can see a time when I will want to reach out to others in a similar situation to mine to be a voice of reassurance. I’m not sure what form my own contribution will take, but it is important to me that I can keep the momentum of compassion going. You gave it to me and I want to keep sharing it.