On being a patient patient
17 July 2016
On being a patient patient
It's almost 11 weeks now since that fateful autumn day when one wrong move saw me landing heavily on the deck instead of lightly on the next seat as I had intended, injured and barely able to move.
Autumn gave way to winter and winter has half passed and still I have not been able to return to the boat.
When I first left the boat to go to the hospital and have the injury examined I hoped the kids would be okay for the evening. Little did I know then what a journey I was about to undertake - I thought at worst I might be gone till late that evening and made sure they had all they would need! I had no idea what would unfold for me.
When the radiologist came out from where she stood to take the films and said it looked quite bad, I still had no idea what was going to be ahead of me. I pictured a cast and wondered how I would be able to get on and off the boat – my first glimpse into the coming days. But it had been a long day and I was finally warm and overwhelmed by sleep so I nodded off without thinking too much about what the near future was going to look like. I had made sure the kids would be okay overnight and still thought little of what lay ahead for me.
When the orthopaedic registrar came to see me in the early hours and told me I would need surgery, and explained what a complex break it was, I began to understand that what I was facing was a little more complex than the torn tendon or dislocated knee I had thought I might have had but still remained clueless of the duration of recovery time I was looking at.
This injury has been very much a process of progressive revelation! If I had known right at the beginning that it was going to be such an incredibly long journey back to full mobility I would have felt quite overwhelmed.
So 11 weeks later I still have a journey ahead of me. I am a little over a week away from my next orthopaedic appointment. My expectation is that at that visit I will be given permission to begin to weight bear. At that point I will begin working with a physio and practice standing, then taking steps. Depending on how I manage that I will have a clue as to how to manage the next transition I face - going from walking frame and wheelchair to slightly less assistance in moving.
My goal of course is to return home but the complexity of the movements I will need to be able to make to hop into the Dinghi, climb up onto the boat, move from the side of the boat around to the hatch and then down below are not things I'm going to be able to do immediately. It will still be a step by step process (pun absolutely intended!!!) and it will still be a while before I can return home.
But the waves are calling me.
I returned briefly to the boat a couple of weeks ago when the kids were finally free to return Argos to the marine stadium area after having served the full time away required by the local authorities. We celebrated their being able to anchor more safely and among friends by having a little party on board. A couple of the fellas brought Argos in to the jetty for me - coinciding perfectly with the charter fishing boats who had all dropped off their passengers and were not returning for hours. So we tied up and I was able to get on board very easily by sitting on the back deck which was the perfect height, and then shimmy backwards until I was fully on. I was able to sit for the evening surrounded by friends, gently rocked and where I could hear, see and smell what I missed!
That was two weeks ago and the first time I'd really seen the boat properly since my fall. Homesickness has really set in since then!
But I have learned a great deal through all this.
I've learned how incredibly capable my kids are.
They have managed the boat, managed in harder-to-get-into anchorages, managed working from the boat and all the complexities of getting to and from work, sharing a dinghi while each working In different locations - not without the occasional mishap - dinghies not being where they thought the other had left it and having to catch a bus to another location, the dinghi deflating while at work and needing to be pumped up when they return late at night to go home, dinghies filling with water during a storm and the self-bailer failing, and yes, the bailing bucket having gone missing from the dinghi. Dinghi’s that were not quite as secure as expected haing to be retrieved from the rescuer! Their attitudes have been challenged many a time and tested but they have come out on top and leave me confident in their growing capacity to manage so much more than most kids their age.
My own biggest learnings have been about pain management and the challenges faced by people with mobility impairment.
I am not good at managing pain. I have a tendency to not be aware of it and to minimise it – I have lived with way too much pain in my life and while on some levels that might seem like a good thing, it isn’t always. I am learning. I am learning to call it what it is. I frequently have terrible nights where I can't sleep at all and spend hours wondering why, only to identify that I just can't seem to get comfortable. You'd think by now I would know straight away right? But no. After 8 births (most drug- free) I guess I have a fairly high pain threshold but I don't do myself any favours when I miss-label my pain as a bit of discomfort!
Having a metal plate in my leg and some whopping screws holding the break firmly together is a very interesting sensation. If it's cold then I feel it intensely. If I have been active - out in the wheelchair or sitting for a long time, my ankle still swells up massively and my whole lower leg feels like it’s trapped in an ever-tightening vice - or like I'm wearing a very, very tight shin guard as if I'm about to play a game of hockey. It's 'interesting' but also often quite painful and I am learning to call it that. I've never been one for taking pills but now the local chemist warehouse is my favourite shop and I visit the friendly staff there frequently!
I'm also becoming acutely aware of how un-wheelchair friendly our society actually is despite the perception that we do well in this area. Wheelchair friendly parking is great - though I don’t have a permit - if I had known at the start how long I was facing before getting my mobility back, I would have organised to get a temporary permit - but the unfolding process meant I didn't think that would be worthwhile for just a few more weeks, or a few more weeks...... Turns out that would have been very helpful.
But wheelchair parking spots are only step one. Then you have to find the gutter-ramp so you can get the chair up the kerb. Some places they are close and some you have to walk to the end of the street to go up, then shop and then return to the one ramp in the whole area to go back to the car. Some shops don't have a ramp and I just can't go there at all. Often in shops I find that people don’t make eye contact with me. I'm down low to start with but people also seem to make a bit of a judgement that I'm 'disabled' and therefore whoever is pushing me is the customer. They look over my head, around about, anywhere but AT me and I have to speak to them before they will look my way - even if I am waving my shopping and bank card at them!
I have become quite invisible - and yet I am still me - just me in a wheelchair.
Getting around is a challenge in so many ways – people dart in front of us, some oblivious because their heads are in their phones, others just so spatially unaware that they don't notice the chair at all until they are stumbling around it. We make jokes about the people we nearly clean up but it's not really much of a joke that people are so in-conscious of how hard it is to push an adult in a wheelchair or how hard to manoeuvre they can be.
I'm the winner here though because I will get my mobility back and I will bring this new consciousness with me. Me and those who have been with me on this journey.
So today, with a little over a week to go till my next set of X-rays and assessments, I focus on being patient. I work on my knee and ankle mobility. I can't weight bear but I work on other movements. I can lift my leg, bend my knee past 90 degrees and can almost straighten it. I can rotate the knee a little and the ankle quite well. I put my foot down on the ground and remember what it feels like to touch floors and I imagine myself walking around, climbing on board and returning to my life.
I miss my salty existence and I miss the sound of the waves crashing on the shore as I drift off to sleep at night, the gentle rocking motion of the boat at anchor but I appreciate the opportunity this experience has brought to me to learn stuff I never would have otherwise, and yes, my patience is definitely growing by the day!