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Mike's Diary > Thoughts from a Wheelchair

Part I > Part II > Part III > Part IV

Part I

This "adventure" has gradually taken on a different feel.

In the very beginning it really seemed like a great idea in which one would have a lot of fun, visit many new places and it wasn't that complicated. Yes we would try to inspire people on the way but even that statement felt a little arrogant and self-righteous. At the first meeting at the RNIB with Miles, Jon and Robin it struck me that this was a big deal and would be much greater than I had expected. I still hadn't realised the enormity of what I was letting myself into.

When we did finally start I was still thinking it was going to be an uncomplicated and fun adventure for us with possible benefit to others who would see our example of getting on with life despite our disabilities. The reception we received on our arrival at The National Spinal Injuries Centre, Stoke Mandeville took me totally by surprise. After all I had been there as an out-patient there just a few days before and it is a home from home for me. There was a wonderful turn out including the Chairman, Chief Executive, staff, patients and many many friends from Buckinghamshire and Oxfordshire. What did amaze me was the applause as we arrived and the enthusiasm for what we were doing. We had basically achieved little, other than getting to The NSIC in a rather unusual way by flying from London and being collected by a patients transport minibus. It was then that I started to realise the impact we could have on people whilst at the same time wondering why.

In Bangkok I had never seen so many camera lenses pointing at us and pursuing us through the streets. It was an insight into how celebrities must feel but then get used to it. I'm not sure I ever will. There have been other times like this and one of the most moving was the public's fantastic reception in Carlow when I felt confused by the attention being paid to me. I don't feel it is justified and I find it hard to see what I have done to deserve it. I am uncomfortable when people say I am brave or am amazing about how I cope; after all I am merely living my life as are they. Despite this, it has become apparent that our "message" of living life to the full has been well accepted and the reactions we have had have been wonderful. When somebody says we have changed their attitude to life it is a very emotional experience and something I will never forget. This is what the adventure is really all about.

Luggage has had to be minimal, bearing the space and weight issue in mind; it had been a difficult decision as to whether or not to take a small fold up narrow wheelchair known as a Seat case. On day one I was proved right to have taken it as without it the bathroom would have been impossible to enter.

Hotel bath / shower rooms have been a particular challenge and after 2 months of travelling and staying in innumerable hotels I have found only two which were equipped for me to have a shower independently. The Oberoi in Mumbai and The E & O in Penang were both superb but the latter lacked an emergency call facility and the shower seat could be more substantial and padded. The Seat case has continued to be an invaluable piece of equipment and has allowed me to have showers on it in 3 other hotels albeit with someone to propel me on it. One of the most frequent difficulties is using the basin which, more often than not, has a front that prevents getting closer than arms length because either the chair front or one's knees are against it.

Our arrival at our hotel in Bangkok was before check out time, which meant my adapted room was not ready. I was offered a temporary alternative one which turned out to have an inaccessible loo and bathroom. I therefore went up to Jon's room to wash and change only to get stuck in the bathroom door with my front wheels just down a step and my back wheels stuck fast in the narrow doorway. There was no way that I could extricate myself so Jon had to come to the rescue. After a considerable lack of sleep, some unexpected bad news from home, the flight and a need to freshen up quickly before our start of "ways" in Bangkok, this seemed like the last straw and resulted in a few tears. It is just this sort of moment when the natural tendency is to blame one's disability for the misery when, in fact, that is not the real problem but merely a small part of the equation. In fairness to the hotel, the adapted room had an accessible shower with the use of my Seatcase.

It is a great shame that hotels do not ask for advice from someone like myself who is the user rather than relying on an able-bodied designer who thinks they know what I need. If facilities suit a non-ambulant wheelchair user, they will work for the vast majority of disabled people. The Tourist Board in Bangkok wants to attract more disabled people to visit Thailand having recognised that the combined spending power of this sector of the market is enormous. It would be in the interests of the tourist industry to improve the facilities. I would certainly like to advise hotels about the issues especially as I am aware that many disabled people do not go on holidays for fear of access difficulties. Perhaps an "Around the World in 80 Ways Approved" hotel rating might encourage everyone.

Having said that about hotel facilities, it is not impossible to manage if one is determined and it would be a real shame to stay at home rather than to travel.

No one has yet complained of me smelling but maybe they are just too polite!

Part II

Speaking in public has become something of a lottery. We are often introduced by Robin who, as adventure leader and originator of the idea, explains what it is all about and then gives the background of one of us and off we go. We do not always know of the order of speaking in advance so any possible combination is on the cards. The problem of this is that we don't know for sure who will say what so whilst thinking of content when someone else is speaking can be a nightmare if they then say what you were just planning to use! We all have our own way and style of stating our message and we all do so without notes and rehearsal with each other. We all have our favourite stories and quotes but each of us tends to change the content depending on mood, type of audience and what has already been said by the previous speakers. Afterwards I tend to remember all the things I was going to say, but forgot, even though I found myself talking about other relevant aspects! The advantage to this method is that we keep fresh and spontaneous rather than just repeating the same speech time after time. It is so satisfying to receive genuine applause and enthusiastic feedback. This is when we really feel we are making a difference to people's attitude to life. There are times when we are tired and have already spoken at least once that day but, when we get up there, the adrenalin and belief in what we are saying takes over and we give an impressive performance. I hasten to say that we are not putting on a "performance" but speaking from our hearts.

I had heard that Miles is very good which, as he is a professional motivational speaker is not surprising. What I had not appreciated was just how good he is. Caroline is natural, accomplished and speaks from the heart with passion. She has a wonderful way of reacting to circumstances.

I feel that I am the weak link in the speaking team which is odd because I have usually enjoyed speaking and have had an ability to do so by "winging it" with little or no preparation. All was going well until one evening at a fairly small and informal dinner in South Africa. I started to speak with no worries but within a couple of minutes I seemed to get a panic attack and became breathless with an instantly dry mouth and had to stop. Robin saved the situation and Caroline took over in her own inimitable way. I still have no idea what caused this but it undermined my confidence. There is no consistency to this and on most occasions I am fine but on the morning of our big charity dinner in Singapore I woke feeling that I simply could not do it. It was most peculiar and there was no particular reason for feeling like this. I was very down, worried and confused; everything seemed awful. Caroline picked this up and was very helpful, reassuring and sympathetic. I hoped that a busy day would take my mind off the fear. It did to some extent but I saw everything in a rather negative light.

Caroline arranged to sit next to me at dinner and we talked about things totally unrelated to the adventure. My mood lifted until it was the team's turn to perform. Again I felt unable to get up on stage to speak and Caroline, at the last minute, arranged to talk before me, allowing me more time to relax and to speak last. She brilliantly told our audience that everyone has a bad day and that I had been having one and really didn't feel up to speaking but would do so on the basis that as a team we all rose to a challenge. She was right of course and I found myself on the stage relaxed and able to talk as well as ever. My confidence was restored and the following day addressing 650 people in a lecture theatre was easy and enjoyable. This was thanks to true team support which has grown so strong between us.

We have had innumerable speaking engagements ranging from audiences of 4000 down to 20. There has been a huge variation in the types of audience and therefore styles and themes of our speeches. It is hard to say which has been the most notable but listening to and talking to a fairly small number of young people in Hong Kong about dealing with adversity was a very humbling and moving experience. Caroline worked her magic by getting 4000 students to do a Mexican wave in the convention hall so she could see where they were!

This aspect of our adventure has really proved so worthwhile and has made all the difference in showing why we are doing this. We like to think it has made a difference to many people but would be interested if those who have heard us could email their impressions and thoughts to this website.

Part III

The "ways" have been exciting, amusing, satisfying, bizarre and some have been frightening. Each of us has our own favourite and has enjoyed some more than others. What we have all become sure of is that they have turned out to be a vehicle which has given us the opportunity to meet and speak to hundreds of people and to spread our message of "living life to the full".

One of the most exciting "ways" for me was being pulled at high speed by a husky dog. The acceleration was staggering and would put most sports cars to shame. Thankfully I was only on 1 dog power as the GT version with 2 dogs could have been rather too exhilarating!

Amusing was being driven through San Francisco in a Volkswagen van converted into a "submarine" complete with periscope, sound effects and water jets for squirting passers by.

Satisfying for me was the scuba diving in The Red Sea. This was my first open water dive after the training in a Nottingham swimming pool. Jim Corbally is a brilliant instructor who had instilled confidence in me and, faced with rolling off the back of the dive boat into the sea for the first time, I felt relaxed and sure that it would be fine. Indeed it was and a truly great week of diving followed. The satisfaction of doing it as any able bodied person would was tremendous. I had a great feeling of freedom in terms of weightlessness and movement.

Bizarre was riding through the streets of Edinburgh on 3rd September in a Santa sleigh. We were collected from Crammond Kirk by a huge wheeled sleigh, pulled by Landrover, and followed our police motorcycle escort into the city centre and back to our hotel. This took place at about 11 pm complete with blaring carols and a very jolly Father Christmas. We passed many bemused pedestrians and the faces of those waiting at bus stops were a picture. There were probably a lot of confused and disappointed children in Edinburgh that night and the following morning!

We had wanted this adventure to be a challenge but, although expecting to be apprehensive, I had not anticipated being genuinely frightened in attempting some of the "ways". Not having the use of any abdominal / tummy muscles proved to be a problem which gave me some terrifying moments. The first time this happened was when I rode a camel in South Africa. Getting on the beast was not bad as I was duly lifted on by Jon. The difficulty was that it was lying down to make this possible and there was little to hold on to other than a couple of very small handles on the saddle. A camel has an alarming way of getting up which involves lurching backwards then forwards at an acute angle. Fortunately Jon held me from behind but even so it seemed like a very long way to fall. Having survived the "launch", the strange gait of it walking was equally designed to make me feel very unsteady and my mouth went instantly dry with anxiety. After a sort time I was asked by the lead camel driver if I wanted to go further or to stop. There was hardly even a split second before I volunteered to stop! The worry then was the camel's method of lying down but there was no choice but to grit one's teeth and go for it. I survived the whole experience but may not rush to do it again!

If I had thought the camel was frightening, riding on the back of a Harley-Davidson into Cape Town was absolutely terrifying. This time it should have been less of a worry because there was a low backrest and sides to hold me. This is fine in theory and I told myself I would be safe; However because these supports were below where I can feel, my brain was saying "you may think you are safe but I'm not getting the message of these supports and you are therefore going to fall off!" This had the effect that I felt totally insecure despite having my arms locked round the unfortunate driver's neck and shoulders. This may sound illogical but those with a fairly high spinal cord injury will understand. About half way along the highway into Cape Town I felt an almost irresistible urge to stop and get off into one of the following cars. Again I had a parched mouth and was almost hyperventilating but I also had a determination to complete this method of transport. Somehow this determination overcame the terror and we made it to the Mayor's office car park as planned. It took sometime to be able to speak other than pleading for water! The sense of achievement in conquering one's fear of the camel and the bike was second to none and therefore well worth the agony.

Another aspect of the "ways" has been my feeling of inadequacy when being unable to take a full part in something. This was particularly true when kayaking both in Singapore and Hong Kong. Here the problem also related to balance and abdominal muscles. Using a paddle with both hands proved almost impossible without falling over and I was therefore unable to play my part in propelling the two seater kayak and having to leave the work to my unfortunate partner. This was made worse as we were being filmed as well as having many spectators who would just imagine that I was just being lazy.

There have been many times when it has been apparent that I am thought to be in a wheelchair just because of my lack of legs. This is not surprising but, if I point out my paralysis, the usual reply is an embarrassed "Oh, but you don't look paralysed!" Perhaps I should wear a label! Mind you, few people understand the effects of a spinal cord injury other than the fact that you can't walk. Before "joining the club" I was equally ignorant of the other effects of this injury and it is difficult to explain the problems without seeming to be whingeing. It's not exactly dinner party conversation to point out that you are doubly incontinent, have skin vulnerability, loss of sexual function, potential blood clotting problems as well as a lack of sensation, movement and balance. There are a number of other difficulties depending on the level of the injury but one thing is certain; being unable to walk is not great but, compared to some of the other difficulties, it is an inconvenience.

Part IV

As time marched on towards the start of Around the World in 80 Ways, it was only in the last few months that I began to consider how I would cope with the medical implications. I started to think about things such as accessible loos, the time taken to get up and be ready to start the day, the problems of hotel bathrooms and showers, long haul flights and the time changes effecting medication, skin care with pressure and knocks, checking my INR (blood clotting measurement for warfarin dosages), diet changes and potential illness such as risks like malaria which might be heightened by my lack of spleen resulting in a less than perfect immune system.

It was very fortunate that circumstances dictated that I was to have a colostomy a few months before the start of the journey. In effect this would mean that starting each day would be so much quicker and I would take no longer to get up than anybody else. It also meant that I would no longer need to transfer myself onto a loo. Both these benefits have proved to be essential as we often have very early starts and hotel loos have been frequently inaccessible.

The problem of checking my blood clotting measurement was solved by acquiring a brilliant machine to do this. This Coaguchek device meant I could measure it myself and contact the coagulation department in Oxford for the warfarin dose. This machine from Roche makes life so much easier, especially when travelling, and the software being developed will then make self dosing possible.

My biggest concern in the lead up to the start was some broken skin on my bum which steadfastly refused to heal and I became increasingly worried that it may have prevented me going. As always Dr Allison Graham, my long suffering consultant, kept her usual sense of perspective and, although she felt that it would not heal whilst going around the world, I was able to go if care was taken to look after it. If I was concerned, I should email a photograph to her for advice. Jon was concerned that sending pictures of my backside could be misinterpreted by the vice squad! As it turns out the wound has not become worse despite some pretty heavy punishment and even the ostrich did not do any further damage. Perhaps the fear of having to photograph it has made Jon into an excellent nurse for dressing it!

We all were issued with luggage bags from Rolls Royce and were each to pack everything into only one of these. I was allowed to have an extra one for my medical kit which included enough dressings for three months as well as leg bags, catheters, and 4187 pills! Fortunately Coloplast were willing to re-supply colostomy kit in Hong Kong thus making the packing much easier.

Finally the moment arrived and it was off to London the night before we were to set off. This was an unfortunate start as, when I arrived at the hotel, I found that I had a blocked catheter and was soaking wet. Instead of a gentle check in and a relaxed drink with the team, it was up to the room to change, wash and reorganise. This is the sort of moment when one is embarrassed, upset and angry with the situation. The need to wash clothes on day one was equally depressing. It also produced a continual worry that it might block again without warning. The next time it happened was the following Sunday but this time it produced a new concern. I had been badly bashed against a seat armrest at Luton Airport when boarding the flight to Belfast. The "people handlers" were unusually badly trained and one of them was not even strong enough to lift me properly. I am used to being lifted onto an aircraft but Caroline and Jon were appalled by the way one was treated like a sack of potatoes. When I transferred out of the taxi at the hotel there was a large pool of blood on the light grey seat. This was alarming and did not please the taxi driver. I went straight up to my room to check the damage and then found that the catheter had blocked and therefore I was wet which had made the blood seem much more than it was. There was some damage to my skin but not as bad as I had feared.

From then on we have not trusted airport handlers and Jon has manfully lifted me on and off all flights. Caroline has also been an accomplished lifter, often to the concern of male onlookers, and has perfected a very good "chair lift" with Jon. I should point out that normally airport staff are good at getting one on or off but with 27 flights in a fairly short time and a determination to survive the whole adventure, we have been deliberately cautious.

In fact Jon has proved his great ability as an "enabler" time after time for all of us but especially for me. He has a great instinct for knowing what is needed and what I can do for myself. This has caught me out a number of times when I have tried to be lazy and his response has been "You can do that yourself!" He has also been suitably protective and has resisted offers of help from enthusiastic "helpers" that lack knowledge. Indeed there have been times when these willing people may have landed me in the sea, river or on the floor! Good lifting has been a vital part of enabling me to get on and off some rather unusual things such as an elephant, camel, horse, ox cart, Harley-Davidson, lorry, helicopter, Blo-kart (land yacht) and steam engine as well as various boats, rickshaws, high vans, racing cars and, in fact, most of the 76 "ways" we have done so far!

The important point is that, disabled or not, one is able to achieve more, in almost everything, by working with others. In the area of disability a "carer" should not restrict a person by being over protective but should enable them to realise their dreams and potential.