Andrew's December 2006 Journal

Early December
They put me on new pain medication which makes me drowsy for most of the day. It's kind of a choice between the pain in my left arm, or being awake. At least I can now transfer onto the bed myself, and I sleep between therapy sessions. Apart from the continual drowsiness, life is ok at the moment. My arms are getting pretty strong, and I am wheeling myself up and down Anzio Road, which is very steep - cars struggle. I can almost smell the rubber burning as I inch down slowly. We zig-zag up which makes it less of a gradient to climb, but a whole lot longer! My arms, while far from huge, are now bigger than they have ever been.
I now have a release date: 20th December and am going home every weekend as kind of test runs. I am getting more independent, but it is different at home. I am a bit worried, but I am sure I will be fine - I don't have a choice really - I have to make this work.
Thursday 7th December
Great news - we got a call from the Argus wanting to chat to me. Apparently summonses have been issued to the boys who did this to me, and they wanted my comment. I had heard all sorts of rumours that they had been planning to go overseas. I tried not to let it worry me, but I am feeling so much better now that I know that something is happening. It's not about revenge, it's about taking responsibility for your actions, and ensuring that this doesn't happen again - not at the hands of these boys at least.
Tuesday 19th December
I'm going to the first court appearance today. It's been a long haul, but finally the wheels of justice are turning. My mom and Clive came to fetch me, and we went through to Wynberg Court. I continue to be absolutely overwhelmed by the support of the press - they were out in full force, as well as the support of my friends, both new and old, my work colleagues and my family. I almost feel like I'm back at the Theatre, except instead of running the restaurant, I am playing a leading role in a farce. There were even some supporters with placards like "Posh School Education - Gutter Morals" lining the pavement.
There were a few delays because the Defense Attorney left some papers at home, and the court room had to be cleared because the boys had to be charged together, and the one is only 17. Only one person could stay with me, and I chose Nicholas, as we had been in this together from the beginning. I know that he has suffered too. Besides having sustained severe bruising around the kidneys from being kicked while on the ground, he also can't bear to see me like this. This boy turns 18 on Friday 22nd, and can therefore appear in court as per normal on the next court date - 8 February 2007.
It was interesting seeing the accused, and I was absolutely blown away by their plea of self defense. It was also interesting that one boy changed his lawyer at the eleventh hour and resubmitted a statement. Hmmmmmmmmm!
We saw Michael Enslin at Cavendish after the court appearance. Obviously being charged for attempted murder is not a big deal. I wonder if these boys have done this sort of thing before. I went back to my mom's house, slept most of the afternoon, and then returned to the hospital after supper.
Wednesday 20th December
I am going home today.
I am excited, as I want to start living my life again, but do have some concerns about managing. I might be sitting in a chair for the rest of my life, but at least I'm not worrying about being someone's unwilling girlfriend in jail. I've had offers from a few strangers, including a member of the Americans Gang, who want to "sort the boys out" for me. Personally, I have faith in the Justice System and would like it to run its course. I don't believe in violence now, and never have. It's amazing - these are worlds that I have never been aware of (other than in the movies), until now.
21st - 29th December
My first day at home was bad. My brother, Nicholas and Janelle were here to help me, but I kept getting dizzy and passing out. I think it may have been the stress of coming back home, as it seems now to have sorted itself out. It is a bit scary and dangerous though, as it can happen at any time - in the shower or during a transfer. Thanks to that little setback, I got saddled with a carer - supposedly for a week, but she only came for one day. I don't think that there was enough for her to do and she got bored.
I also managed to tip my wheelchair over backwards and hit my head on the wall, when trying to make a quick getaway when the washing machine pipe burst and started flooding the laundry. What a first day! There was some good news however, later that evening, I was able to lift my right lower leg about 30 degrees and hold it up for a few seconds.
I am proud to say that since that time, I have been pretty independent - I can get in and out of bed on my own (a feat in its own right as I don't have a headboard or sides, and there is nothing to hold onto when I transfer.). I can shower on my own - the shower is over the bath, and I transfer into the bath chair and shower while sitting. I can dress and undress on my own, but I do struggle to pull my trousers up. I have to go onto the bed and flip onto my stomach to get them up. Putting on my shoes takes a really long time. It's so strange; I've been doing all these things for myself since I was in preschool. Now 20 years on - it's something that I have to relearn again. It's times like this that I feel so angry. It's not like I was driving drunk, or doing an extreme sport where I could pre-determine and accept the risks - I went to the shop to get a pie! How dangerous can that be!
I've spent a lot of time using the electro-therapy on my legs. This tires me out and I have been sleeping quite a lot too.
My moods have also been up and down. It's a combination of not being able to do really simple things, and also impatience to start walking. I just know that I'm going to walk one day and I want it to happen now. I also kind of feel caught in the middle of everybody's good intentions. I know that everyone is just worried about me and concerned for my welfare, and I don't want them to disappear, I just sometimes feel that I need time on my own to try and put this stuff together and work out the best way to handle this different way of life. I'm a little more grumpy than usual, because the pain in my left hand has come back with a vengeance. Pain is tiring, which is probably another reason why I am sleeping.
I was completely sheltered in the hospital, and at home I am constantly made aware of what I can't do - drive my car, get into my house on my own, go to work, get around work (up and down the stairs) on my own. I have been spending quite a bit of time at the Theatre. It's wonderful to chat to everyone, but my neck gets really sore looking up at people to talk to them. I'm sure they don't realize the strain.
I went in the pool at my mom's house on Christmas Day and was able to move my leg almost freely in the water. Still nothing in the left leg, but the right was like that to start with and I will not give up hope.
Kelly has been bringing me information on therapies with promising results. I will put some of these into practice and hopefully the results will be as good as the research shown on the web.
We got the most interesting call from Anthony Netto, a South African, now based in Germany. He was a professional golfer who was hit by a car and has been paralyzed for a while. He has developed an outdoor wheelchair called a paragolfer which allows you much more mobility and independence. He had been out to deliver it to Vic Perrett in Britannia Bay (near St Helena Bay) and put us in contact. On Wednesday, we drove out there to see this device and meet Vic and June Perrett and their daughter Suzy. It was really fantastic and I could certainly recommend it to anyone wanting more outdoor mobility. While I would love one, it's very expensive and I wouldn't be able to get it in my house - the doorways are too narrow. I was however able to stand in it for the first time in two weeks. (See gallery). I was very dizzy at first, and then tried again successfully half an hour later. I hate those dizzy spells - your hearing goes, the world becomes a haze, and then it seems like in the movies where everything is in slow motion and if people are talking, you can't hear them, you just see their mouths move. It's amazing how quickly your body deteriorates.
I've had two sessions of Cranio-Sacral therapy at home. I just know that it's helping my body to recover. It feels like acupuncture without the needles and I can feel the energy moving around my body.
I've been going into work everyday. I haven't really been doing much, just getting my body acclimatized to the working hours. I need to get my day upside down again - as it was before.
Well - off to work now. New Year's Eve is coming up and we have lots to do at the Restaurant. Janelle's been doing a fantastic job keeping the Restaurant running while I've been in hospital. All the staff there are really pulling together and making sure that everything runs smoothly. This is a great weight off my shoulders as I don't need to stress.

Week 30th Dec - 5th Jan 2007

The challenges and limitations of my new life are starting to sink in.
I don't want to moan, I mean, there are lots of people that are far worse off than me, but it's the very simple things that are the most frustrating - putting on my pants in the morning, for example is exhausting, takes forever, and ensures that I start every morning late. It's such a ridiculous thing, but just try to do it without stomach or leg muscles. Then when I am finally starting to get my legs into the pants, my legs go into spasm and won't bend. The final straw is trying to get the last bit up and around my waist. There are usually people around the house that would help me, but it's really something that one should be doing for yourself once you are past preschool. I could employ someone to help me, but once my pants are up, there's not much else to do... other than those dreaded white anti-thrombosis stockings and shoes of course. Oh - happy days... It is times like these that I curse those boys and what they have done to me and my life.
Although I can make myself something to eat or drink, I have to consume it next to where I made it, as I can't carry it anywhere. I think we'll have to invent something to take this frustration away. I'm not even going to talk about toilet issues - other than to say, that once you are in a wheelchair, you kind of have to plan your life around this.
New Year's Eve was spent at the Theatre. It was nice being surrounded by familiar faces and was the latest night I had in a long time - I got home at around 3:30. I always feel a bit left out though because the bar is high and I'm low down. I'm not really in the conversation because I am at a different level physically.
Not surprisingly, I overslept on New Year's Day and missed my tablet times. This wreaks havoc with my moods and I really felt miserable. We went through to Milnerton to visit friends later, but I came home early with a fever and headache and went straight to bed. I really didn't feel well at all. Often, after an episode of fever and pain, I find that I have regained some movement that I didn't have before, so while I don't welcome these fevers, the hope of some additional movement makes them at least bearable.
On Tuesday morning, I had physio. I have been really bad with my stretching exercises over the festive season, and was scolded for that. If I don't do these exercises, and keep myself fit, my tendons will shrink, and I will lose my ability to have a full range of movement. This will cause even more problems than I currently have. The good news is that the physio seems to think that I am getting some movement back in my left thigh - the fever was worth it.
I also had my first session of Hydro Therapy later. It was good, but was very different from what I had expected. I wanted to be in the water to strengthen my body. Trudy said that she needed to get a feel of what I was capable of, and I spent quite a lot of the time floating above the water, rather than actually moving below it.
I am sick of this chair and have been really angry and difficult the last few days. I sometimes lash out at people close to me in pure frustration. It's not them, it's just the situation.
We found some really amazing research that had been done on the good effects of "walking" on a treadmill. Basically, I would have to be suspended from a hoist in a harness, and two people have to move my feet physically on a very slow treadmill. The price of equipment from overseas is prohibitive, but we are working on our own homegrown solution to try and get this going. So far, we have purchased a hoist. This has already made my life easier as Clive (my stepfather) made a bar which we attach to the hoist. I can then use it to help me get in and out of bed. I have been subjected to all sorts of harnesses, mountain climbing and parachute, so far, to test which is the most appropriate. My poor mother was suspended in her garage to see if a sailing harness would work - a mother's work is never done it seems. I can't wait to start. If anybody else out there has any ideas or has tried this themselves, please drop me a line on andrew@andrewmerryweather.co.za.
We are still in the process of sourcing the correct treadmill, but we should have that sorted out soon. Being silly season, a lot of companies are still closed, and typically, the treadmill I require needs a larger walking surface and slower speed than the average home-use treadmill. Hopefully I'll have good news about this in next week's journal.
I have been able to stand in the mountain climbing harness, which I was able to do with ease - no dizziness this time. According to the research, I should see some results after 12 sessions and with any luck will at least be able to stand, if not walk with two sticks, after 3 months. Apparently, your body re-learns the walking movement and your nerves find new pathways. I am really amazed that there are no post-rehabilitation gyms here with this sort of equipment. - I want to start soon!
Another piece of equipment that we have found is the FES (Functional Electrical Stimulation) bike. Basically, you attach electrodes to your legs, and these electrical pulses then allow you to cycle the "bike". This apparently strengthens your legs and "re-awakens" nerve paths. They say that it can also reverse the effects of osteoporosis. Although there are no distributors locally, we have been talking to the manufacturers in the States. (What did we ever do without email?) They say that this bike can even be connected to the Internet, so that they can monitor the results and give advice where necessary - all this for the tidy sum of around R150 000. We have asked them whether any other bikes have been shipped to South Africa already and whether there have been any other queries from Cape Town. Anyway, financially this is out of the question at the moment - I guess I'll have to re-awaken my Fund Raising Team and see what they can come up with.
I have slowly been going back to work. Once again, it's bitter-sweet. It's great being back, although it's really only for a few hours a day, but it's a bit of a challenge as we don't have a lift yet, and I have to be carried up and down the stairs in the chair. It just feels so undignified and makes me feel quite helpless - which I am determined not to be.
I am responsible for the Restaurant, which is on the first floor, as well as the Bar and the Coffee Bar, which are on the Ground Floor, so I used to go up and down a lot. I can't get into the kitchen, although a ramp has been installed - there just isn't enough room to allow for sufficient gradient so that I can get up and down. My office is also really small - and now with the chair, I hardly get in there, and keep bashing things. Aaaaaaaaaaaaaaaarrrrrrrrghhhhhhhhhhh!
Pieter has really been very supportive and invited me to his house to chat about life's obstacles. Everyone knows Pieter as a very successful business man and to experience this 'soft' side of him has being a privilege. He seems more outraged and upset about this whole ordeal then me. I feel sorry for the boys and their families who attacked me, because once Pieter has set his mind to something it always happens! And he is determined to have justice for me.
I am still relying on others for transport. Although we have found out that it is possible to convert my car from manual to semi-automatic, I just haven't been able to get myself onto that yet. (From what we have found out so far, the total cost of conversion is around R25 000, but can only be done in Pretoria.) I suppose I still feel that I'm going to wake up one morning and realize that this was just a bad dream, and get out of bed and walk. Getting the car converted, like buying a wheelchair (I'm still in a borrowed one), it confirms my paralysis. I'm going to have to at least decide on a chair soon - while I hate it, I certainly couldn't do without one. Just to confirm my relationship with my chair, it tipped and turfed me out when going down my driveway today. Luckily, my mom, Kelly and Jason were there to help me. I didn't hurt myself, and according to them, the whole thing was quite graceful. However it looked, I'd rather it didn't happen.
My mom went to the pharmacy today to get my tablets and medical supplies for the month. This cost R2000.00 - It's very expensive being in my condition.
Before you think that I have turned into a person that does nothing but moan, I want to say that I still feel positive that I will walk again one day and am determined to do whatever it takes. I guess venting in my journal means I don't have to go into therapy - and then I can save the funds for the rehabilitation equipment that I need so badly - thanks for listening! I also hope that we can take what we are learning about the benefits of post-rehabilitation exercise and try and persuade someone to set up a gym with the appropriate equipment to keep people like me fit and healthy and functional. At least then some good will have come out of this nightmare.

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