Taking Charge (17)
Getting on with it
Laying here in bed
I could just be the old me
Preparing for the day
Of course I am not the same me. I am still a husband, father, grandfather, friend, clinician, teacher, researcher, but just over two years ago, my life took a new direction, and since then I have been coming to terms with it, more or less. There is a lot that I do not like, but then, there is so much to be surprised by every day.
I have to say that I am privileged. I don’t mean by that I have special rights (except that of parking the car in a disabled area, and asking for assistance from airline personnel). I don’t have diplomatic or any other sort of immunity, and I have as many obligations and liabilities as the next person. But having worked hard for the last 45 years, with grown up children who are now independent, and a secure home and finances, I am privileged in the sense that I can do things that many other people may not be able to do, or do things in ways that others maybe cannot. So I am reflecting on the last couple of months of my life, in the context of this privilege. It has been surprising and extraordinary – in spite of my residual handicap.
I was invited to attend a two-day national forum in Sydney and present some of our research work and thinking about self-injury. My collaborative team has been working in this area of suicide prevention for about 5 years, and completed a number of research studies which have clinical and practical implications for people who struggle with managing their emotions, as well as professionals who try to understand the area and do their best for self-injurers. The conference offered to pay my fare from Brisbane to Sydney and accommodation in a hotel close to the conference venue for the duration, and allow Jan to attend the conference as my carer. So we accepted.
Brisbane airport is just over an hour’s drive from home on a good run. In the old days I would have left enough time for driving, parking the car, managing luggage and getting to the gate, but probably not given much thought to the process. It had become a bit of a routine. On the other hand, I have been caught out. Several years ago, before being paralysed, I was due to fly to Adelaide to provide training to a group of telephone-based interviewers helping us with a national study of self-injury. I cut things too fine, was driving just that bit later than usual for the early morning flight, traffic had swelled, and there was a jam. I missed the flight and a young colleague who did catch the flight had to do all the work, even though I teleconferenced in a couple of times to answer key questions and resolve some issues. So, having been caught out when fit, active and healthy, I am a bit more cautious now that I struggle.
These days, on almost every occasion, I have to carefully map things out in my head, making allowances for my current status. I like to drive as much as possible, and chose to drive to the airport on this occasion. So what do we do with parking the car? This is where the idea of privilege begins to creep in. I choose to use Valet parking, which means I can drive right up to the door of the airport, and have someone else park the car for the duration. It costs money, but avoids parking in a carpark away from the airport, and then having to walk 500 metres or so to get to the airport. I think the cost is worth it, even when I choose as well to have the car cleaned inside and out prior to returning. As a part of a business trip (ie attending a conference) where I am a keynote speaker or presenting a workshop or seminar, it becomes a justifiable business expense and gets offset against tax.
So we get the cases out of the boot, hand the keys over, collect the receipt and are only 100 metres from checking in. Again, planning comes into it. I have taught myself to work the flight system online. So the night before I print off the tickets at home to make it easier for going and returning. We insert the tickets in the new check-in system, load the bags, and return to security. Being a frequent flyer (albeit only a Gold FF), we go to the shorter line. This saves time and standing in a lengthy queue. Take the laptop out of the backpack and put both on the Xray system rollers. Now, can I walk through the Xray arch without touching the sides? This may sound like a stupid question, but my balance is not perfect, and I have been caught out twice – once when not thinking carefully, and once when super tired at an international check-in. You feel stupid when an alarm sounds, and some bloke in a uniform says: “Can you walk through again, Sir? And this time please do not touch the sides.” It is just these little things that contribute to a level of anxiety when travelling. And if you are not careful, these things mount up, and you can get to the point of thinking: “Why would I bother? In fact, why do I bother to leave home and do all this stuff? People can read what I write, and if they want to see my face we can use Skype!” But these sorts of questions are the beginnings of the road to Agoraphobia – that fear of making a fool of yourself in public places - to the point where your mind stops you venturing out at all into public places.
OK, safely through security and collect the bags from the rollers. There is always pressure here from the people following you, and lots of huffing and puffing behind your back. You try to hurry as much as possible, but it is not quite that easy – and the slightly intolerant huffers and puffers just have to wait those extra seconds. Bad luck. Then, either Jan or I are almost invariably (every three out of four times) stopped by those overly polite people in uniform, needing to stuff some magic wand with sticky tape on the end down into the depths of your hand luggage, searching for evidence of bomb-making materials. I think it is something to do with slowness. Jan is petite with nearly white hair, and takes a modest pace, so she looks just the type to be involved in dangerous activities. “Excuse me, madam, I just need to check your bags for explosives. Have you had this done before?” Jan, bless her, is always polite and accepts her lot meekly. I have tried at times to be funny and say things like: “Only about 300 times!” But they don’t really appreciate it, and you just know with ‘officiousdom’ that you can go too far one day and end up being strip-searched in some dingy office somewhere. So you smile sweetly at their incredible ability to catch a cripple, and open your bag for inspection. I did ask on one occasion why they always seem to pick on slow people like cripples, but that was met with a frown of marked disdain. I suppose I could be wrong. Perhaps you should not make eye contact; if you did not look around to see where they were, but just walked smartly past with an air of being in a hurry, they would not notice you. But I can’t hurry anywhere these days; I have to measure the pace. Perhaps they pick on us knowing for a certainty we will be ‘clean’. There must be a dreadful amount of paperwork to do if you ever find someone with explosives stuffed under the underpants at the bottom of the bag.
Right, on to the escalator; now for the fun part. Stepping on firmly and maintaining your balance while holding a backpack is an art I have practiced. You have to make sure that the backpack is on your right, and you are toward the left of the escalator so you can reach out and stabilise that first step with your left hand. There is always a slight uncertainty but to date no accidents, even though your heart does miss a beat. Getting off the escalator is possibly more of a hazard, because your motion is forward, and the floor you step on is going nowhere. I have twice had a little foot drop (with a slight catch on the floor) at the wrong moment and had to recover quickly. Strangely neither time was when I was dragging a small wheelie piece of cabin baggage. You never thought you might have to actually think through these things, did you; after all you learned the art of escalators as a child in a department store – its all automatic.
And so, the next 50 metres to the club lounge. Ah, the club lounge; such a haven – if you can find a seat. On most occasions I have to plan going to the toilet about 15 minutes before the flight is called. This is usually just a formality, but I have to remember not to drink too much coffee early in the morning when flying somewhere. My bladder can manage about 90 minutes, but too much coffee makes my bladder slightly irritable, and if I don’t take precautions, I can end up desperate to get to the in-flight toilet as soon as the plane has taken off. Again, there is anxiety – on this occasion about the possible embarrassment of leaking. Again the spectre of agoraphobia rears its head.
On this occasion going to Sydney, we used the business club lounge, having used frequent flyer points to upgrade. I went to the toilet only to find all of the cubicles full. So I retreated to the handicapped toilet. Why did I not go there first? Don’t know; there is a slight reticence, perhaps, to acknowledge my status. But I am fully entitled, so often I do make a beeline for the wheelchair sign. Anyway, as I got there a middle eastern man was just leaving, all clean and shiny and slightly red-faced and perspiring from taking a shower. The room was a steamy disaster, and potentially dangerous with water all over the slippery tiled floor right up to the toilet basin (he obviously had not used the shower curtain). There were towels strewn everywhere except where they might have been useful – on the floor soaking up the water (I guess at home his wives would have picked everything up). The toilet was really filthy and had to be cleaned before use (I guess his mummy had not ever trained him to clean up after himself). The toilet roll was off its holder and sitting next to the toilet on the floor in a puddle of water (luckily there was a spare on a shelf). There were paper hand towels strewn around the basin where they had been thrown with careless abandon. I did the best I could to clean the toilet, and avoiding too much water on shoes and clothes, did what I had to do, cleaned myself up and retreated to the front desk to report the mess, and possible dangers to handicapped people (such ironies). The flight was being called.
At Sydney airport, there is another set of problems. You have had a nice sit down and a rest for an hour or so but the concourse at Sydney can be overwhelmingly long, and the potential for struggle depends on the gate at which you arrive (this circumstance is further discussed later regarding our international journey). Luckily on this occasion we arrived at gate 5, fairly close to one exit. So, off to the club for a precautionary loo break, and then down the escalators with care. In Brisbane I had organised for a hire car to take us to a meeting I had planned prior to the conference. I checked in on the way to collect luggage, and the driver had the cheek to complain that we were late, and he had been waiting 15 minutes. I explained my status and the need for the loo break, but he was not mollified, and worse was to come. In the limo, I asked if he could drop me at my destination, and then take Jan on to the hotel to check in (for a fee of course). No he could not do that; the arrangement was for him to just take us to the original destination with no changes. I had forgotten how rude Sydney taxi drivers can be if you only have a short journey when they expect a long journey fare, so with an “Of course, I had forgotten we were in a Sydney cab”, we sat in silence, got out in silence, and stalked off. No-one is programmed to make your life easy.
The meeting was very successful with only one real challenge. “Oh, we are just upstairs in our meeting room; is that a problem?” How many stairs, I ask? “About 10” Should be able to manage that. In fact it was one of those tight circular staircases with 23 stairs (6 more than I manage at home). S’alright, I struggled up without a hitch, and later struggled down. People don’t know about your handicap unless you detail the issues; why should they? If they see you walk, albeit with difficulty, they assume you can walk long distance, and do most other things. I guess I am my own worst enemy; the less handicapped I try to look, the less they are likely to see me as handicapped. So, you just get on with it.
The hotel was, as promised, close to the conference venue (later we found out that was ‘close as the crow flies’). After negotiating 13 more steps to get into it, we checked in collected the electronic keys, wandered over to the lift, and up 9 floors. Our room was down, what felt by this time, a lengthy corridor (perhaps only 50 metres). We settled in, unpacked, had room service dinner, I finished and checked my presentation and (very important for my physical health) we had a good long sleep.
Despite all the travel and travail, we woke refreshed and had breakfast in our room. I used my iPhone to map the distance from Citigate hotel to the Aerial UTS Function Centre - 0.8Kms. We discussed walking given the beautiful day, our refreshed state, and lots of time. All dressed up, we left hand in hand and hopeful. Sydney, of course is built on hillsides. Walk out of the hotel and down the road, round the corner and there is what for me is a steep slope up Quay St to George St. We took it slowly. Turning right onto George, there were crowds of people, and the closer we got to the University of Technology, the more young people there were. By that time I was tired, faltering a bit, wary of people rushing at me, stopping to let them pass (a good strategy because you get a moment’s rest!). It was warmer outside than I had thought and I still had my jacket on, while everyone else was in shirt sleeves (well, I thought, we are from Brisbane). Its remarkable how much you notice pavements, and uneven surfaces seemingly going in all directions (sometimes it seems to me that no-one is able to create a flat surface); I had to take such great care not to trip, but by that time (600 metres), I was getting the occasional foot drop. Then the road led down somewhat steeply, and there was the bustle of pedestrian crossings, and deep kerbs to negotiate. We arrived at the building, went up in the lift, arrived at the conference, and I plonked myself down on a comfortable bench – shattered. More than that, I was totally saturated in sweat from the effort, and there were all these lovely old friends who had not seen me for a very long time wanting to come up and give me hugs, and kisses on damp cheeks. The conference organisers were excited and keen for me to go to the first session. I drank my coffee, and escaped to the loo (50 metres down the corridor). OK, I reflected, despite surviving and feeling oddly, if wetly, triumphant 800 metres was too far; tomorrow we get taxis.
Then there was acute diarrhoea (so what caused that?) – on and on. So, I had an hour and a half to morning tea and, after that, my presentation. I cooled down, sorted myself out, collected my thoughts, got another drink and snuck into the back of the auditorium. At morning tea I loaded my presentation onto their system, went back to the loo (as you do), returned, stood up on the podium and strutted my stuff. My consumer colleague and I were invited to do a radio interview the next morning - to which I agreed. “Can you walk down the road to the ABC studios – its only 500 metres?” I know it seems rather pathetic, but could you please organise a cab? After a stimulating pre-recorded discussion, we caught a cab back to the conference. Getting out, I reached back inside to collect my backpack, and the car rolled several inches forward to sit on my right 4th and 5th toes. Could you possibly drive 2 inches forward? “Sorry, what’s the problem?” I need to get my bag, and your wheel is on my foot... Are there some advantages in not being totally able to feel your feet? Mmm.
By the next day I was rested and recovered, with no apparent serious bruising to the foot, but we took a cab (with apologies and a tip) and arrived fresh and eager to do the first Keynote of the day. Everything went well, the discussions and other presentations were fascinating. That evening, the organisers invited us out for a Chinese banquet – “It’s just down the road from your hotel”. ‘Down’ was the key word, and again I had to negotiate uneven sloping pavements for about 2-300 metres. S’alright, we managed slowly, with the stabilising help of Jan’s ever present hand in mine. You just get on with it; do as much as you can, push yourself, and flake out afterwards. It was a great banquet, and the conversation was delightful. I envied several members of the party going on to find an Irish pub, while my kind colleague went to fetch his car to take us back up the hill.
So, safe back home we reviewed the stresses and strains of those few days, and made intricate plans for the forthcoming international trip to a conference in Vancouver Canada, on to London to see relatives not seen in over a year, and returning via Adelaide where I was part of a symposium. Why? This is what I do. I am a speaker. As it says on my Facebook page ‘I stand, I walk, I talk’. Mmm, I might have to review the ‘I walk’.