grahamm44

Taking Charge
Nine
Firsts
This chapter begins just over 4 months after my initial paralysis. It was my birthday, and Jan decided we should go to the beach for the first time – just as a test, you understand. Surf beach at Woorim is about 15 minutes from home just the other side of Bribie Island. I drove (yes, really) and we parked in a little car park about 50 metres from the beach down a path or across some grass. I held Jan’s hand rather than use one of my Canadian crutches, and we walked carefully down the track. So far, so good. Gravel path reasonably flat – I can do that. Ah, yes, a 10 metre slope down through soft sand; this will be fun. Like everything else after you have been paralysed, all you can do is to take things a step at a time (LOL). So, dig the heel in, make sure I am taking my weight, crush Jan’s tiny hand. Then the next step, and then the next. I had had several days in recent weeks when I had despaired for one reason or another, thinking perhaps I had plateaued, or worse, perhaps it was all starting up again. But no, we reached the beach, which was still on the soft side, and managed fairly easily to get to the hard-packed stuff left by an ebbing tide. I wiped several minutes worth of my own salt water from my cheeks and marvelled at the feel of the firm sand through my joggers – just like hard ground really or the floor at home.
We kicked our shoes off, and tested the water. It was nowhere near cold, but that first feel of it on my feet gave me this electric jolt up the back of the legs to my spine. Whoa, that was freaky, exhilarating, scary; thought I was going to overbalance for a moment! Like a giant whole body shiver. We laughed, the sensation went away and we enjoyed the soft waves over our feet, that unique sight and sound of small crashing waves, the view of Moreton Island, and (later) a school of dolphins travelling north. This is why we had moved to the island. Why hadn’t we done this earlier. Silly question (but not!). Leaving the joggers in a small pile, we managed about 100 metres along the beach before I began to feel a bit exhausted. I get this after exercise, and have been warned by various people to accept it, and then make sure I take the necessary rest. So, wandering back we then sat for 20 minutes, breathing in the smell of beach, listening to the rhythmic sound and not saying much at all really, except in brief response to the occasional dedicated walker. Lovely.
Then of course we had to cross soft sand, and go back up the soft sand slope. Much more difficult than coming down, but again taking one tired step at a time, making sure of the certainty of each step, we arrived back at the gravel. Joggers in hand and protecting feet, we took to the grass; delicious. And then I drove us home (yes, really).
Yesterday, two days after the first walk on a beach, it was our 45th wedding anniversary, and late in the evening, after dinner and after all the mozzies had gone to bed, Jan suggested we do a celebration walk over a bridge and around a small island near our canal home. With some silent trepidation I agreed. The last time we had been around the island I was in a wheelchair, being pushed by someone else. The other thing was that it was dark, admittedly cloudless, but also moonless (and I have a tendency to overbalance when I can’t see). The street lights are OK, but hey, I can still lose my balance easily in the gloom… We started out, again without my Canadian crutch, and again holding firmly to Jan’s hand. The first problem is the down slope of the driveway, and at the end of that a kerb where we had got stuck the first time with the wheelchair and needed rescuing by one of my sons who was up for the weekend. No problems this time. After about 20 steps I got into a rhythm, and we managed to maintain that up and down the bridge, and then half way round where we stopped to admire the stars. Again I still get a bit dizzy looking up, but it was fine on this occasion. We started off a bit slowly, but then got back into the rhythm. Towards home after navigating a couple more kerbs and the bridge, I could feel I was tired. From time to time both feet would just catch on the ground, and an old problem of the right foot swinging outward on landing returned about 20 metres from home. I could hear the physio saying: “Well you fool, you should be using the crutch; you don’t have to keep pushing it!” But I do. We arrived at the gate; no tears! In the gate and up the garden path on my own – no hand holding; no tears! Inside the front door a slight feeling of triumph but, you guessed it, no tears! Perhaps my frontal lobes are not so bad after all; or perhaps I am getting used to all the little triumphs, and a new first every day. Mmm, well, writing about it has blurred my vision, and made me blow my nose; perhaps last night I had just used up all the emotion that the little triumph of our version of walking round the block had provoked.
These two ‘firsts’ make me realise just how far I have come in four months, and act as a counter to my sense that I may be reaching a plateau. They also make me reflect on all the firsts I have experienced, and I thought it might be fun to review some of them that we have not talked about in other chapters.
The first time I stood upright was just before Christmas, about 3 weeks into my admission. The physios brought this machine that looked like a bed, but was motorised to be moved to vertical. They strapped me down with my feet on an end bar, trussed securely at hip and chest. You have peculiar thoughts when you’re unable to move and entirely under the control of a couple of other professionals. I guess psychiatrists have peculiar thoughts anyway. So I jokingly asked if they were going to give me Electroconvulsive (Shock) Therapy; the very worst thing I could have imagined. They just looked perplexed (like I was daft) and got on with what they were doing; tightening straps. From horizontal I was gradually moved until I was almost standing, but not taking much weight. When the guys were satisfied I could take my weight, they tested my ability to slightly bend my knees and then straighten – a test of extensor and especially quads strength, I guess. After 20 minutes, they seemed happy with the result, I was returned to horizontal and then slid with wardie help across into bed.
The next day they brought this machine that looked somewhat like a mauve ‘dalek’ on wheels (Yes, I am old enough to have watched quite a lot of Dr. Who – only for my kids’ sake of course). There was a platform to stand on, and then a kind of webbed body belt with which they locked you to the machine. I held onto some handles at the end of two arm rests, and then the machine did all the work lifting me from a sitting position to standing, although my forearms were taking some weight. Unbelievable (that some clever person had designed something like this). Terrifying (to be dragged/lifted to a standing position). Emotional (the tears just kept coming, given that I had thought never to walk again). Our little motorised dinosaur was capable of moving me around and up and down the corridor. The experience of being upright was exquisite, even if I was locked into a complex ‘aid’. I was only ‘on my feet’ for 15 minutes, and when they let me back down into a chair, and then transferred me to bed, I was cactus. That feeling would return again and again over the next few months, often mixed with triumph, and always with tears of relief at what was possible.
The next attempt was with a sort of parachute harness hooked to a rather classy forklift (40,000 dollars worth of machinery I understand) on loan to the department. The harness went round my waist, and 6 seatbelt-type straps were variously attached to support my weight, the other end of the straps finishing on the superstructure above my head. The lift began while several pairs of hands supported me. Then we had trouble. As the lift continued, the straps which went under my crutch began to cut into vital parts, and the pain became unbearable within seconds. This time I was weeping first from the pain, and then weeping with relief as the pressure came off. I had visions of being scarred for life or turned into a eunuch. On the other hand having lost almost all feeling below chest level, I was weeping probably because it is extraordinary just to feel anything! Expensive machinery; needs tweaking to make it male safe! They never used it on me again; in fact I was never to see it again.
We have a picture of me about two days later standing inside parallel bars, taking quite a lot of my own weight, but ably assisted by two physios, and with the wheelchair directly behind me if I felt the irresistible urge to sit down. The photo makes me look like I am in agony, silently screaming with my mouth open. In fact there was no pain; I was just overwhelmed that I could stand when I had thought I never would again, pouring tears, and slightly embarrassed at my reaction. The physios, of course, were not phased and I am sure they had seen it all before. They were never phased when I wept, when my indwelling catheter began to leak after some exercise, when I passed wind after some exercise (“Hey its all part of the job”).
From standing, on each successive session, the physios began a plan of getting me to take steps. I have described this elsewhere (see the chapter on physios), so I will not repeat myself. But that early work, so carefully done, formed the building blocks for what was to come. Four weeks later at the spinal unit, Jan was able to take a video of me with exactly the same expression on my face, stepping out one wobbly foot at a time with my hands raised over the bars of the parallel bars such that I could grab them if I had to. For the first time I managed end to end without stopping, and without holding, just with overwhelming triumph and tears; I look ghastly.
We have a 2 storey house with 17 stairs. Ever since my overnight stay at home on Christmas Eve I had looked at the stairs, trying to work out just how I could get the strength to climb up (let alone get myself down again). I had my first weekend at home at the end of the first week at the spinal unit, and still had to sleep downstairs in a single bed, dammit. Over the next 3 weeks of my stay at the spinal unit, I asked the physio to focus some of our work on climbing stairs. She had all sorts of different ways of getting me to step up, each carefully graded, and whenever one looked too easy, she would change the task to challenge me. There was a basic rule: “The good go to heaven first” meaning that my better foot should be lifted up first and take the weight while I dragged the other one up. Then put the ‘bad’ one down, while taking the weight on the good leg. It took me some time to work out how to manage the crutch as well as holding onto the banister. Do you put the crutch on the stair first and then drag the right foot up, or do you lift the foot and crutch together? The repetitions seemed endless and exhausting, and I sweated bucket loads each time into a couple of towels. The plan was to go up several stairs one at a time, left foot first. Of course once you have managed going up half a dozen stairs in the gym, you have to re-learn how to come down. More repetitions, more anxiety, more sweat.
Anyway, on my second full weekend home, there was no way I was going to spend my nights in a single bed. So when Jan was out, and no-one else around, I took my trusty right Canadian crutch, and holding the banister with my left hand, took the first step with my left (‘good’) foot. Dragged the right up, stabilised with the crutch and did it again. And again. By the time Jan got home from the shops I was safely ensconced in my favourite armchair upstairs watching cricket on Foxtel. Somewhat bemused, and with a half smile, she asked: “How did you get there?” to which the response of course was “With great difficulty”.
So the first climb of our home stairs led also to the first night in our double bed. Of course I was still having trouble with my erratic bowels and, anxious about accidents, was wearing ‘pull them ups’ to bed. I still had to sit up on the side of the bed, then climb carefully to standing, stabilize and then step round the bed using a crutch to get to the ensuite to have a wee several times that night, which was a bit of a drama; poor Jan, I must have woken her several times, particularly using the crutch and thumping around a bit stiff legged. A night light was important for my balance, as was leaning on several bits of available (and stable) furniture. I’m not sure either of us got that much sleep. Jan, of course, had had the bed to herself for the previous 2 months, and had (shall we say) spread herself out a bit. And my semi-paralysed legs had erratic movements, the occasional jumping about, and then there was the drama of turning over… Ah well, we achieved a milestone, and though I use the single bed downstairs for a bit of a rest after exercise, there is no way I am sleeping in it at night.
Walking, as a progression from standing on your own two feet, is so important to us as human beings, but there are other firsts that can be equally important. The first time I swam in our home pool was just one of those exquisite occasions, while also being potentially a drama. I had been carefully trained at the spinal unit to get up off the floor if I fell. This initially entailed finding something to lean on (a chair, or a bed, or a step), even if you have to crawl to it. There are various ways of getting to a sitting position, most relying on the upper body strength I had fortunately retained. So to get into an armchair, you sit as close as possible to the front of it, facing away, get hands and arms into position on the seat, and then drag yourself up to sitting on the edge of the chair. Later I was shown how to use the side of a bed to assist me to get up onto it from kneeling on one leg.
So the second time I was home for a weekend (about 7 weeks from the beginning of my paralysis, we took the plunge - literally). Getting into the pool, we adapted some of what I had been trained to do. We parked a plastic garden chair about a metre away from the pool steps. In between the two we placed some padded cushions to stop damage from the aggregate concrete pool surround. From walking with my two crutches, and with Jan standing behind the chair to stabilise it, I sat, and then we put the crutches to one side. Using the seat of the garden chair, with both arms I lowered myself to the cushions, and then edged slowly to the poolside, dropping my legs into the water. After recovering from the exquisite shock of the water, I used the poolside to lower myself down the next step. Of course then, with some of my weight taken up by the water, I was able to stand, and then swim. One current project is to improve my breaststroke. Of course the problem is to be able to coordinate the legs. Initially this was almost impossible, but bit by bit we seem to be getting a bit more drive going. Its only a small pool, and it used to take me 3 strokes overall to get from one end to the other (including the kick off at the beginning). Currently it takes 6, but at least I can stay afloat.
We have found using the pool for hydrotherapy is a massive boon. I have lots of trouble with abduction (spreading) and external rotation (turning out) of both legs and feet, worse on the right. So walking sideways up down the pool has been good practice. Getting back some stances (sanchin, zenkutsu, kokutsu, and the old shikadachi (sumo) stance are all possible (at the shallow end) marking my efforts towards a return to Karate. I am currently working on turns, which seem to be getting quicker and stronger. Of course the pressure of the water on sideways movement provides resistance – which is great.
One major problem is that I can’t do breaststroke; just can’t use my legs well enough yet. My body memory is there for what I should do; my legs just don’t respond right. Well, there’s something to work on…
After the swim we reverse the process. I place a towel on the mats, and climb up the pool stairs, reversing and sitting with legs in the water. Then one leg at a time gets dried, up on the mats. Then I turn away from the chair, get as close as possible, and use my arms and shoulders to lift up to sitting on the chair. Dry off, put on joggers (aggregate can be painful when you have hypersensitive soles to your feet), retrieve crutches, stand and away we go. Latterly, I have been doing this by getting to a kneel, with one leg in a squat with the foot on the ground, and holding on to the chair (in turn held by Jan), I can stand straight up. Progress! If it all sounds a bit tedious, I can tell you that it is. You have to take charge and decide you will do it. Then you have to think through everything you want to do and the strategies you will utilise to do them. Then take it carefully, steadily, (and slowly if necessary) to get to the point where it is possible. Then practice and practice until it improves.
One ‘first’ has been very important to me. I could not wait to get back to driving, in part because it signalled some sort of autonomy, in part because of the genuine need to be able to get back to work in Brisbane. A couple of weeks after I was discharged, Jan took me out in her car on a Sunday morning – reasonably quiet on Bribie. I drove slowly toward Banksia Beach, and turned right along the front, and tried several manoeuvres like turning and parking, and then I drove home. The car is an automatic, and fairly easy to drive, but the sense of triumph at getting back behind the wheel was fabulous. My right foot (the first to be affected, and the worse one) was a bit slow to move between throttle and break, and there was some loss of the ‘feel’ of the controls through my joggers, compared to normal. But it was a start. Over the weeks I had several more trials, and as my foot sensation and power have improved I am both much more capable, but also almost back to that wonderful ‘automatic’ response so necessary in traffic. Currently I am back at work on 3 half days a week, and work from home the rest of the time. I usually drive in to work, and am dropped off at the entrance to work, with Jan parking the car. Usually after a hard or stressful or complex day I feel unable to drive home – so Jan does it. It’s been a good pattern, and I know it is likely to be several more weeks (perhaps months?) before I start to drive both ways. We shall see.
The final ‘first’ of course is Karate. When you have been doing something for 20 years, and achieved a level of skill, it comes as an immense shock to the system to find you can’t do something which is a major part of your life. I have talked elsewhere about using some bits of Karate and adapting physio exercises to make it more interesting for me and perhaps keep up old skills. About three weeks ago we tried a return. I say ‘we’ because Jan had been a member of the little class I had been teaching before it all happened, and is almost ready to grade for her blue belt. Of course when I stopped teaching, she stopped training, and has been missing the flexibility, the strength, and the confidence it provides for bodies in their 60s.
We chose an early evening class, actually a children’s class, but hey I can’t afford to be proud. My son was teaching and obviously pleased at our return. I felt both a sense of oddness at putting my Gi back on for the first time, but also a delightful familiarity. I also felt a bit odd putting my black belt on given that my standards must have slipped very badly; I couldn’t fight anyone at this point in my recovery, even if we were both on the ground! Being shown phenomenal respect, the opening of the class was held up until I had struggled down some stairs. So I stood in line, faced front, bowed in, and we began. Anchoring my feet with slightly bent knees in the one stance of Haikodachi, I managed all the blocks and punches over about 25 minutes of effortful sweatiness. When the class moved on to stances and kicks I pulled back and sat down, my legs feeling like they were filled with lead. I was cactus the next day, but boy was it worth it. Maybe we will go back this week and try again (Mmm, maybe we won’t…).