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Sunday, March 6, 2011

Taking Charge
We just had a gag at home that made both of us ‘fall about’ (not literally, I hasten to add). I had just finished putting some stuff in the dishwasher and said: “Well, I’ll just beetle upstairs and get on with some writing”, to which Jan responded: “I would love to see that”, and we both laughed. “Right” I said (still laughing) and literally marched across to the stairs with more stability than I usually have. “I could try taking the stairs two at a time; I haven’t done that in ages” (fourteen months), and proceeded to somewhat carefully try the right leg first (holding on to the banister as I usually do). I did it, but Jan’s comment was “Whoops” as I struggled with stability. “OK let’s try the good” (left leg – on the grounds of the ‘good go to heaven’). Mmm, not much better. We both laughed, “I’ll just have to beetle slowly then”, and promptly decided it would be a good exercise to work on to strengthen the legs, over and above my three times a week 40 minutes on the exercise bike.
But, though it was funny, there is a serious edge. First, the last month has not been all that good in terms of stability. I have done less exercise due to end of year work stuff, and Christmas celebrations and family time. It has been raining solidly for weeks, so I have been unable to get in the pool (more of that later). So I have been a bit depressed that perhaps my spinal cord is not improving, and this bloody process is still active, not resolving. So to acknowledge that when I set out in my semi-beetle stance walking with more determination, I walked with more stability, has a central lesson in it – do more, recover more – a lesson I have known for a good year now. But there is more. To even think about taking stairs two at a time is a triumph; well perhaps many of you would see it as bravado or perhaps outrageously stupid. But it suggests that somewhere in me I know I am nearly there, but also needed to test it out to urge myself to work harder.
The other issue is the one of due care. As I note, I use the banister every time I go upstairs and every time I come downstairs. But, I have noticed that my grip is lighter, and that on several occasions I have consciously focused on how my legs are working and less on the death grip to ensure safety. I can now carry quite heavy or awkward things in the non-banister hand. Again, progress. So trying to take two stairs at a time, I was back in safety mode, with the old death grip – quite sensibly. I have no wish to fall and really set myself back. So on the one hand there is care, and on the other challenge. Somewhere in the middle is an issue of habit.
I am increasingly aware that, when walking, I hold onto railings and touch walls and the surface of furniture, when I am doing it almost like a talisman rather than taking any weight, or ensuring in reality I don’t fall. OK at night getting out of bed, I am wobbly in the process of standing up in the dark (or semi-dark of moonlit nights). On a couple of occasions I have sat back on the bed with a thump, and on one occasion did sink (crumple?) to the floor quite lacking in grace (well how many ex rugby players do you know who are graceful anyway?). No damage, but my legs were at funny angles under me and for days I was testing myself out to make sure I was not bruised or had not torn something. I got up, held on to a chair for a moment, then a chest of drawers, and then so on round the bed to the bathroom, slightly shaken.
OK I can hear you thinking: “Why doesn’t the fool use a night light? And use a stick to support his weight?” To which the answer is ‘pride’ (which as we all know ‘comes before a fall’). I am struggling with how I should behave at this time. Am I a person with a few handicaps, just getting on with it? Or am I actually a cripple being stupid about the need for assistance, personal aids, and a large number of concessions? Is it better for me to note the positive improvements and discount the little bits of retrograde progress, or should I be accepting that at some stage in the future I will be back in a wheelchair? And how long have I got before I have to start saving to purchase one of these quite expensive bits of machinery? This dilemma is the central theme of this chapter of ‘Taking Charge’.
The dilemma cropped up the other day when I was on Facebook. One of my recent additions to friends, had offered at some stage to help me with some fundraising, and had laid out a tentative plan. The generosity left me slightly uncomfortable. I do not know the guy well, have not met him face to face, and don’t know why he would offer such a thing. And in an academic environment you get used to doing things on your own and fighting for every cent you can get. People in a competitive atmosphere don’t just offer out of the blue. The other side of this, of course, is that I am normally reticent to ask for such help. Not sure where that comes from, but it has been life-long – a belief that you have to stand on your own two feet, and nobody is going to help you. Jan finds all of that frustrating, and sometimes deeply annoying when I obviously need assistance, but won’t take the proffered hand.
Anyway, the truth is that we have been running a preliminary research program on a new group short-term therapy for self-injuring young people. This has been on a shoestring from our own pockets – ‘private funding’. You know the issue; you can’t really apply for a grant to prove that something works well, until you have done some preliminary trials to prove that it is likely to work. We have almost completed three small trials, begin another in April 2011 for ten weeks, and this may be the last one before the funds dry up. So, I took my courage and pseudo self-reliance in both hands and dropped this Facebook friend a note asking for his help. He is one of those people who seems to be always on Facebook, has thousands of friends, and communicates frequently with all sorts of people.
I had started a Facebook group called Random Acts of Kindness, and my friend had obviously liked this and the ideas in the group, and had offered to circulate his friends. Within weeks we went from about 600 on the group to nearly 900. So he must be all right. He responded that evening, very positive and following his original plan – so we will wait and see. In the meantime, I noted a couple of posts referring to photos, and so I went to look at his photos. My friend is in a wheelchair.
So much fell into place. I reckon he has been following my journey of the last year, and feels some kinship maybe. I don’t know what he has been through, but I could speculate that his journey may also have influenced his humanity, and the fact that he is such a gregarious and helpful person. So I wrote to him acknowledging that at some stage I might need his help in teaching me about the finer points of using a chair.
That pulled me up short. The thought has been hovering at the back of my mind, and the last month has brought it to the fore more frequently. But it may be the truth. However hard I exercise and work at getting well, however positive and solution focused I stay, it may happen at some point as I age, and other forces come to bear on my spinal problems. Mmmm. So, do I let that intrude? Should I just give up now, relax, stop fussing and buy the best wheelchair I can find? Let other people push me around (pun intended), and not worry about their potential for back problems. Well, no bloody way!
But it does come back to those questions: “Am I a cripple pretending to act as if nothing has happened? Or am I just me, with some physical problems I can change and keep under some sort of control?”
“Should I stop the habit, the ‘talisman’, of holding onto things?” Now there’s a good question. When do I really need the security? How do I walk that fine line (pun intended) between being just that bit more careful, against finding myself doing all sorts of small things that begin to define me as a cripple?
Having begun to address all of this, I began some immediate changes (proud bastard that I am…). Every time I find myself touching a wall to give me the impression of secure balance, I stop myself. I am working hard on reducing the death grip going up and down stairs, and just lightly hold the banister. Maybe I could begin to go upstairs without the need for the banister? Well, let’s give it a go… If I practice the two stairs at a time trick, perhaps slowly over time I will be more confident to just go upstairs as I always did in the past. Not sure I will get to the point of being able to chase my grandson upstairs as I would have done in the past. Hey, I am 66.
The rain stopped for a couple of days, and the pool temperature rose. As I described in a previous chapter it has been a right rigmarole to get in and out of the pool. Put down a cushion from the swinging hammock close to the edge of the pool near the steps. Cover this with a towel for later. Place a garden chair just behind all of this. Sit to remove top and joggers and glasses. Place glasses in joggers so you know where they are. Slowly, using all that I learned from the physios at the spinal unit, grasping the seat of the chair lower myself down onto the cushion with one knee and then to the point where I am seated. Edge round, swinging my legs into the pool. Edge forward until you can take the weight on the first and then the second of the steps. Holding onto the side of the pool with one hand and lower down a step to the floor of the pool. Woo-hoo! (and on cold days as the water closes over the groin, ‘God that’s cold; why am I doing this?). In the past, Jan has steadied the chair while I manoeuvred, but apparently she is secure in the knowledge I can manage (as long as she is around).
I was watching Jan as she gracefully took a step down into the pool, only holding onto the skimmer net to remove leaves and flies. Question: “If I practice my two steps at a time trick, why could I not just step gracefully down into the pool?” Mmmm, maybe. Perhaps next week. Question: “But what if you fell?” to which my rational side said: “We are talking about getting into a pool, here. If you fall, you are going to get wet. Duh.” And then it added: “What about several weeks ago when you were feeling a bit cocky, and stood towards the deep end and jumped into the pool?”
Oh yes. I had calculated that the water would partially take my weight, and that if I kept my knees slightly bent on entry, then as I hit the bottom of the pool (if I hit the bottom of the pool) I would be able to manage. Well, there was a slight shock (but no damage), and I emerged with a grin. “So what stops you doing that again?” To be honest with all the rain and the passage of time I had forgotten. I will try it again when my grandson is up for the weekend; that should provide a surprise.
Having thought about my entering and leaving the pool, within days there was the need to do something. I have not yet had the courage to just use the steps of the pool. Why not? They are just steps, even if they are a little deeper than a standard step. There is no bannister. Do you need a bannister? This week “Yes!”
But we have been trying to leave the pool without the rigmarole of sitting, swivelling etc. So on good days when I am not too tired, I stand on the second step and dry myself off, then step to the first step, and then poolside. On one occasion I lost my balance and knew I was going to fall backwards into the pool – it felt as if it were slow motion. I managed to throw the towel at the chair, while falling. Spluttering, I surfaced, and started the whole process again. You have to laugh.
On the early occasions Jan held my hands as I stepped up – just to steady me. A couple of times since, I have stepped up but kept my hands on the side of the pool to steady myself. Then I can stand up straight legged when I am sure I have my balance. Gee, it feels good. Next step (literally) is to just take a step out of the pool like any other person. “Can I do this?” I think so.
“Doesn’t all this thinking through and worrying about it all drive you crazy?” Well, no, not exactly. But I do get very tired from time to time, and I need a good sleep every night to keep me on top of the game of working out every step of the journey. I am still, I fear, at a stage where one slip of concentration and I will be gone. “But then is that not part of all this dilemma thing?” This week, no! Next week, maybe!
There have been some other things that I have noticed. At mealtimes I tend to arrive after I have been summoned, the meal being on the table. Sometimes slightly before I arrive to get drinks for everyone. During the meal, and at the end of the meal, it has been Jan who fetches and carries plates and glasses (or other members of the family at weekends when they are there). In the old days I would have been much more active, and much more helpful. But you get into a set of habits. Given you are slower, and sometimes wobbly, and others are quicker, it is so much easier to leave it up to them. But as I recover, this is neither good nor fair. I can begin to help more, so I will. I have been making a conscious effort to get off my backside (you don’t know how nice it is to be able to say that) and help. Just small things, you understand. I fill the dishwasher, or perhaps wash some of the pots and pans, or make the coffee. Not every day, but certainly on good days.
The extension to this is that there are many jobs round the house that have languished. Lights that need to be replaced, things that need to be screwed back into place, a study that has quietly turned into a garbage tip while my body has been focused elsewhere. Jan just says she needs her ‘Mister Fixit’ back! OK, I am (mostly) here; what can I do? “Well…”, and there follows rather a long list.
The other morning I climbed a ladder, and replaced some fluoro bulbs in a couple of ceiling lights. I used a full size, if lightweight folding ladder which I could put over my shoulder to bring in from the garage. No problem so far; you just have to be careful when walking to not approach objects (like the dining room table) too fast to allow for corrections. OK, ladder placed carefully next to a rigid bench to break any fall, I opened it up and used the cross bar to secure each side to the other. Then some careful thinking around using pockets for the loosened heads of the screws that hold the glass plate to the base attached to the ceiling…. Thoughts about taking a new starter motor with me in my pocket, I opened the pack to place the new lamp in an easily accessed position on the bench, and room to put the dead one down….
So, there we go. Using the golden rule of ‘the good go to heaven’ (thanks Tina the physio!), I put my left foot (marginally stronger leg) on the first rung and pulled up carefully leaning my weight into the ladder. Then I broke the rule and put the right leg on the next rung and pulled carefully up. No problem so far. I was now just under the ceiling and, again making sure I leaned into the ladder, I reached up with one hand to support the glass face plate, and one by one unscrewed two of the screws putting them carefully into my right pocket with the new starter motor. OK, now releasing the clips holding the circular neon tube, I lowered it, and slowly and carefully removed the old starter motor - which I placed in my left pocket. Then pulling the starter motor frame from the tube, one freed up tube got placed on the breakfast bar bench. Not having to reach to far, I picked up the new tube, holding it in place while I fitted the frame, and then the new starter motor. Together, I placed it in the clips. Good. Now reaching down slowly I retrieved the faceplate, tipped out the old flies and dust, and tuck it under the two remaining screw heads/nuts on the ceiling with my left hand. I then got one of the nuts and begin to screw onto the thread at the side of the faceplate. All done, I got out the next nut, and carefully found the thread and then screwed that on. Checking all four screws for tightness, I released the faceplate. Done. Short breather, and then again remembering to lean into the ladder, I lower the right foot to the next rung down, and then slowly the left to the floor. The legs actually felt slightly shaky! I was a bit sweaty! Good we needed some exercise.
The whole process was laboriously repeated with the other ceiling fluoro light, and then I carefully, but nonchalantly, released the cross bar, folded the ladder, and put it over my left shoulder, returning it to the garage without scratching, table, walls or one of the cars.
Now why would I describe this in such a detailed way? Partly, it was triumph to get back to being a handyman, not having to wait for others, or pay a commercial handyman. Partly, because that is how every piece of action occurs in my life at the moment. You have to plan very carefully, and have some strategy for where each bit goes before you actually do anything. Nothing is automatic. You have to be careful, making sure not to carry too much weight or bump into objects. And if you are up a ladder, you really would not want to drop anything small onto the floor. So why didn’t I wait for someone to come home from shopping. Because I am proud, I take risks, and I am fed up with not contributing to the household chores. And what I did was a very small everyday thing for a fit bloke, but a bloody miracle for someone who, a few months ago thought they would spend the rest of their life in a wheelchair. So again, it acknowledges the basic dilemma. I am handicapped, I do have to be careful, but as long as I take it slowly, plan each step carefully, I can achieve things. I can rebuild my confidence. I can get back some of what I had though I had lost.

Just before Christmas our house cleaners resigned. They had been coming for nearly 10 years, and were always cheery, and always left the place spotless. We decided we would see what we could do, whether we could manage. So on Mondays we spend half a day cleaning parts of the house. On the first occasion, I offered to vacuum the top floor. We have a cute little modern machine with an anti-allergy filter – nowhere near the size and weight of the brute we had 15 years ago. So lengthy extension cord plugged in, special tools to the fore, I began in a bathroom, moved to the bedroom, vacuumed the corridor and, needed a rest. It had been fun, especially being careful with all the little tops of skirting boards and nooks and crannies that seemed to have collected a bit too much fluff and dust over time. I had completed about a third of the job, and I was tired, sweating, and my lower legs had developed that (by now well-known) feeling of reduced sensation within a woollen stocking. I rested, had a cold drink and started up again, this time more slowly. I was determined to finish the other bedrooms and the TV lounge. Achieved…. And I was cactus.
A week later I tackled the downstairs, and managed slightly better, getting that lovely sense of achievement of a job well done, and a house that was passably clean; I was cactus…again. Two weeks later, I vacuumed the whole house from top to bottom, and really felt there was less impact on my legs, or my general wellbeing. Another Monday morning again tomorrow, and I will see how I go. My expectation is that this is manageable – one more piece of being a human being recovered. And the long-term benefits seem worthwhile – the exercise is contributing to my physiotherapy program. Ain’t life quaint?
My professional life continues, and I have applied for a further 5-year contract. Such arrogance…or is it? Despite my residual physical problems, in many ways I am at the peak of my profession, doing good quality clinical work, teaching lots, gaining good research grants, advising honours, masters and PHD students, publishing lots each year, and increasingly being cited by other colleagues. I try only to drive into Brisbane on three days a week, and spend Mondays and Wednesdays at home, writing (and sometimes doing the vacuuming). In at work, I am often able to forget physical problems. I see clients or staff members for 50 minutes or so, and it is not until I go to stand up that I need to do that careful thinking and planning thing to make sure I can stand, stretch and then walk. I plan to keep the pattern going for as long as I can. I used to get very tired in the early days, but overall, my work is invigorating and enthralling, and recently I seem to be coping increasingly well.
Are there dilemmas in all this? Of course! As I am walking down a corridor (the corridor of ‘big bums’!) to attend a team meeting, I may be quite ataxic and look slightly under the influence of drugs or alcohol. I have a slightly wide-based gait, occasionally putting in a little stagger (although I trip far less than I used to) and people sometimes look at me strangely (perhaps with concern or pity) – and give me a wide berth. In lifts, I often get odd appraising looks, and (I swear) people do move physically away. Once at the meeting and seated, I am treated just like anyone else, my voice is heard if necessary, and no stigma is perceivable. Should I just quietly retreat to an office and write more books? Nice idea, but no bloody way! I have a job to continue.
Part of being an academic means presenting at conferences; which means travel. I have been able to do this since about 4 months after my paralysis, successfully travelling with Jan’s help (and crutches) down to Tasmania (mentioned in a previous chapter) to consult on a strategy. We have done some travel since then, and the problems seem to be less and/or more manageable (and the crutches are absent). So I have sent in an abstract to a European Child Psychiatry conference. If this is accepted, we will travel to the UK to see family members and consult on another book I am writing, then travel to a second smaller conference on self-injury, in the US. Conferences in my trade are part of self-definition. I research, I write, I present our work.
The dilemmas are about the facts of travel. Are there long distances to walk? Are toilets accessible? Will strange food upset my neurogenic tummy problems (now under better control)? Can I keep up with fluid intake without needing to go to the bathroom every 10 minutes? But one major dilemma relates to systems, and was mentioned in chapter 14. If there is a delay, for instance from being searched or checked for bomb-making materials, will I have an accident? Should I carry a placard stating I have a handicap? Is there a more subtle way of doing this? Should I tell anyone who stops me that I may have an accident? If I am stopped and they don’t care, should I pee on their shoes? Mmm, hope not. But seriously should I tell the airlines, when booking travel, that I may be in need of assistance? Do I ask for a wheelchair at Singapore airport where the corridors go on for miles? I think so. I have to swallow my pride, and accept my limitations, and do the sensible thing. Will that acceptance define who I am? Maybe. Do I care? Yes…and…no. The idea is to achieve the objectives of going, surviving, having fun, presenting our work, and getting home safe and sound. I can deal with my arrogance and my ego later.
One last little note of stunning importance to someone who needs to take charge. Jan and I returned to Karate the week before last (yes, she trains too). On the first occasion I was very careful, stood back from the main line of training, rested when I felt I needed a break, and avoided anything I thought would upset my balance. Shihan, and some students I knew well, were obviously please to see my return. The teacher flagged when I should take a couple of breaks because of the exercise he was about to teach. So, I could manage all of the Kihon punches and blocks, though my retained technique needs polishing a lot. I could manage most of the stances, though much more slowly and with great care to avoid going off balance. I could manage one of the senior Kata, which is controlled and not too wild. I still have considerable trouble lifting each of my knees up to waist height, right worse than left; so I have a long way to go till I am kicking – even if it actually was never my strong suit. After an hour we left early, and as I bowed at the door, my Shihan paid me a mark of great respect. He stopped the class, made them turn towards the door and asked them to bow. I was overwhelmed; yes, I am a Nidan black belt, had been a teacher for many years, and had trained many of the juniors, but my efforts were a bit pathetic. Apparently that meant nothing, and my rank was acknowledged. No-one saw the tears as we went to the car. For the next two days we took delight in our sore legs and back muscles. We had returned; we had done it.
We returned this Friday, and managed 90 minutes. Stances seemed easier and under more control, and my body was remembering the old technique; rusty but there. Again I was in for a shock. At the 60-minute mark we were just about to do one of the basic Katas. The class was divided by experience into groups, and my Shihan invited me to take a group through Kata Gekesai-ichi. Me, who had not done the Kata for 15 months. There is no refusal in Karate. You say “Hai!” and do it. I did. Remembering some of the Japanese commands (but nevertheless confusing a couple) I took charge, and worked around what I could not demonstrate – ie the kicks. Apparently I am still a second Dan Karateka, still valued by the club, still expected to have the knowledge, and still expected to use my teaching skills. I guess I am hooked, recommitted. Are the muscles sore? You bet. Do I care? No, because these two half sessions have contributed an immense amount to my ongoing need for physio. Will I be there next week? You bet.

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