Training With a Disability

I’m sorry, it’s not. Each person has a baggage to bear that is unique to that person and it is up to each individual to find their own ways of working things out. I’m sure that I am not saying that each person has to be alone in dealing with his or her problems, it is rare that there is not help to be found in some format.

This article is just a story. It is our story and if you find anything in it to give you comfort, we would be very happy – otherwise, please just regard it as a story that may or may not be of interest.

This story starts in the latter half of 1995 when Helena and I sold our house in order to move into a smaller flat so that we could save money more effectively for our planned emigration to New Zealand.

Jake was two and a half years old and Sam was about 6-months old.

We had a beautiful wooden house in the outskirts of Stockholm. It had everything we wanted including our own fully equipped dojo in the cellar, complete with sauna and showers, where we often trained for ourselves or held small high grade sessions.

Helena and I were both at an elite level of fitness and we both ran a club at the local school hall in a part of Stockholm called Tallkrogen.

At that time, Helena had been graded to 2^nd Dan and I had my 3^rd Dan. I was 32 years old and Helena was 33. We both prided ourselves with the fact that we successfully kept ourselves just a bit more flexible and just a bit fitter than our best students. We trained a lot together and we also had our own, fairly gruelling, private training routines. In other words, we both pushed ourselves very hard.

We led our classes with enthusiasm and by example and we never asked our students to do anything that we could not do ourselves.

That way, we felt, we enjoyed enormous credibility with our students and other instructors that knew us – we were the genuine article. We actually earned the nickname; Mr and Mrs Budo.

It was very painful to sell our house – we could have happily lived there for the rest of our lives, watch our children grow up and grow old together. But Helena and I pined for more adventure – we felt that we were still young enough to experience more of the world and therefore selling the house was a conscious sacrifice to help us realise our dream.

It was a dream that we had had since new years day of 1992 while on holiday in New Zealand – wouldn’t it be cool to be able to live here, we asked ourselves eating breakfast there in the height of summer looking out over the paradise of the South Pacific. It was a clear and perfect day and we had fallen in love with the place.

Could we really do it? Could we just uproot ourselves, throw ourselves onto a plane and start a new life on the other side of the planet? Or were we just suffering from the sort of post holiday blues that you only get from a particularly good holiday?

In truth, we really didn’t know but we were determined to try, so we returned home and told our families, friends and students that we planned to emigrate within about 5-years.

They must have all rolled their eyes and thought yeah, yeah.

Just over three years later we had found out all that thought that we had needed to find out, we had managed to save some money but not nearly enough. The mortgage was just too great to be able put together the money we needed and we realised that if we truly were serious about our dreams then we were going to have to do something a bit more drastic.

So we sold our house and moved into a tiny, two bed-roomed flat closer to the centre of the City. It was a dirty and horrible flat, a real dive. But it was cheap and boy could we save. I worked as an Optometrist, specialising in contact lenses and Helena worked as a PA within ABB Credit in Stockholm. She was still on maternity leave with very close to full pay – one of the very many real benefits of living in Sweden at that time.

Anyway, once we had disinfected the place and put a bit of an effort into arranging things the way we wanted them, it wasn’t to bad – we really missed having our own dojo though.

It was a real “hanger-onner” as well: it just didn’t seem to go.

After a few weeks, Helena was getting more and more fatigued and I was getting more and more concerned. She was barely able to look after the kids during the day, despite the fact that she could sleep while they were at the day-care in the morning and she totally collapsed into bed in the  evenings when I came home from work.

I felt really torn every time I left home to run our club on our training nights and some nights when it was just too bad: I would have to ring one of our more senior students and arrange for one of them to take the sessions.

After three months of this; countless visits to the doctor; countless prescriptions of antibiotics; painkillers, vitamins, herbal remedies etc, we got the results of a chest x-ray.

The doctor said that they suspected Sarcoidosis, a disease where any organ, but usually the lungs (as in Helena’s case) can be afflicted with granulomous tissue growths.

Helena would have to go through a lung biopsy to confirm the diagnosis. Helena was very weak by the time the biopsy was carried out and she had to spend a couple of days in hospital to get over this simple procedure that should have seen her go home the same day.

We were both very concerned and started to become convinced that the horrible mouldy flat that we had moved in to somehow was responsible for her condition.

The doctors all said that the cause of the disease was unknown, the outcome rarely fatal (usually self-limiting) and the treatment would involve a prolonged course of very high doses of Prednisone (cortisone): the side effects of which would not be pleasant. The doctors were all unanimous in that there was absolutely no substance to our theory regarding our “rotten” flat.

After having conducted countless Internet searches about Sarcoidosis and its treatment, Prednisone we decided to decline the treatment. The side effects seemed too great and there were absolutely no guarantees that the drug would have any effect at all, let alone provide a cure.

My parents, who were temporarily back in London from Saudi Arabia, both had medical backgrounds and were frantically trying to dig up as much information as they could and sent over many different kinds of medicine that might help Helena feel better.

It was a very rare disease and almost nothing was known about it. We still believed our theory about the flat, however far-fetched it seems today, and we were getting desperate. Everyone that visited us at our flat seemed to need to take a couple of days off work afterwards, suffering from a cold or the flu.

One day Helena rang me at work and said just two words before hanging up – “Come home!”

I left my patient, ripped on my clothes as fast as I could and jumped onto my bike. It was a cold and snowy early spring day with temperatures down to 0°C when I cycled at top speed the 12-km home. It was still faster than taking the underground.

I found Helena lying on the floor, with the kids crying (dirty nappies) and Helena was simply just too exhausted to move.

It was April, we were due to fly off to New Zealand in the end of November and things were not looking good at all. Helena was deteriorating before my eyes and I was becoming very unsure about whether she was going to survive at all. She looked like a skeleton (only 43kgs in weight) and in my heart, I was actually starting to prepare myself for life as a single parent.

It was then that I decided to take matters into my own hands. I hastily packed as much as I could fit into a couple of suitcases, carried Helena and the kids into the car, scraped the snow off the windscreen and headed off for our country cottage (a little summer cottage shared between Helena, her mother and her brother). I was determined to get my family out of the flat that was eating us up alive.

It was a 90-minute drive and I was aware that we might not have any running water as the pipes may still have been frozen in the ground.

I stopped off to get our supplies, phoned my job to say that I would not be in for a while, maybe a long while, and continued on our way.

It was cold when we arrived but I smelled the fresh air of the forest and looked down upon the lake. This is a healing place I thought to myself, as I lit a fire in the fireplace. I put Helena to bed and played with the kids, trying to figure out in my head what the hell was going to happen. How would this story end?

The next day, much to her protest, I took Helena out for a walk. She could only manage about 10-steps at a time. We both held on to Sam’s push chair and Jake was running around us happy as could be and in complete blissful ignorance about what was going on.

We really felt like fugitives – a very odd feeling. I was willing Helena to start getting better with each and every step. We walked every day, and just a little longer each day.

The weeks went by and Helena did start to improve, little by little (very little at first). Helena’s mother came down to help look after the kids when I commuted up to take the Karate Club and I started feeling confident enough to start looking for another flat.

After six weeks, Helena was well enough to look after the kids on her own and I returned to work, commuting an hour each way from the country cottage.

I put many adverts in the papers in the hope that I would find someone interested in swapping our flat for theirs. There was bound to be someone wanting to swap a flat that was more expensive to one that was as cheap as ours. One day, I hit the jackpot.

We really needed to move back to the city – we couldn’t live at the cottage forever, it was too impractical and expensive to commute.  I held my breath as this family inspected our flat.

My conscience said that I should warn them – our flat was a killer, but no, we were too desperate!

I had seen the flat that they wanted to swap with ours the previous day and it was paradise. It was modern, clean and was much bigger. I didn’t care if the rent was almost double.

Yes, I could see some of the old Helena return – but minus the energy!

A month later, Helena wanted to try to return to work. She knew that it would be tough on her but she enjoyed the feeling of regaining some normality. As a PA, she was mostly writing documents on the computer and it really wasn’t that physical – OK, we would give it a shot.

She managed! In fact, she managed so well that she decided to go on to full time. This allowed me to quit my job and pack up all our belongings for New Zealand. It was going to happen after all!

We had decided that we were going to bring all our belongings with us and had arranged to have all of it shipped by container ship. We had calculated that it would be a lot cheaper for us to bring it all than start out again and buy all new (or second hand) stuff. But it meant that I would have to disassemble all the furniture and pack it really well if it was all to survive the long voyage. It took me two months to pack.

We waved goodbye to our furniture as it left by truck for the long drive to the container terminal in London where it would be repacked and shipped. The only thing I just couldn’t get in the truck was my old bike. I pulled it out and gave it to Fredrick who had been helping us pack. He had been our top student for nearly 7-years and I think that it was only then it dawned on him that we were actually leaving.

The journey itself took 36 hours and during that time, I started to allow myself to look forward.

During the past two years, Helena’s illness had forced us to think in the present and it was only when I was relaxed and happy on the plane (about 5-hours out from Auckland) that I started to look forward.

I looked at Helena and the kids asleep in their British Airways Boeing 747-400 seats and it was then that it dawned on me: We have travelled half way across the planet; we only know a couple of relations in NZ; we have no place to live; we have no jobs and only $12,000 in savings. Could we arrange all this before all our belongings arrived in six-week’s time? What the hell have we done? I was terrified!

I will now compress the next three years into a couple of paragraphs:

We did find a house to rent and we bought one a year later in the same area of Hamilton. My parents and my brother (and his family) all moved down as well.

We opened a Karate club, which was a success from the first time we opened our doors. New students and a new start.

Helena’s fitness continued to improve and her elite level of fitness returned (it took her 6-years for her to feel symptom free again – although, she can still feel the scarring in her lungs from time to time).

I failed to get my optometry qualifications recognised in NZ and had to return to University to do a degree in IT.

Jake and Sam both started school where they really thrived and developed. They learned to speak read and write English extremely quickly and we now struggle to keep the Swedish alive.

The national karate organisation in NZ became interested in us and eventually graded Helena to 3^rd Dan and me to 4^th Dan in July 1999. I became the secretary of the Central North Island Region of Karate New Zealand.

I graduated from University and got a job as a Systems Analyst at a large electricity hydro generation company in July 2000, Helena got a job as a Travel and Tourism Tutor at a local college. I continued studying part time for my Masters.

Our Karate continued to develop and our club continued to thrive and it was after I graduated from University that I started to develop a dry cough.

I couldn’t shake it off. I was convinced that it was because I was sitting under two air-conditioning ducts at work and we had the entire system serviced and analysed without result. I eventually got a new job and a new office.

The cough remained and I noticed also that my fitness started to decline. Was I getting old, is this what ageing is all about? Did I drink too much? I freely admit that I do enjoy my glass or two of wine with my evening meals.

I caught myself cheating during my warm-ups, correcting my students as they warmed up rather that leading them and pushing them through it. Sometimes I cut the warm-ups short, sometimes I let my senior students take the warm-up while I sat it out – I never sat out warm-ups before in my life! I tried to compensate by training harder, but it did no good.

My cough continued, my nose was constantly running, my fitness declined and I started getting very very tired. My work suffered, I’m sure – I just didn’t have the energy to be a self-starter. I was too fatigued to take initiative of any kind.

I went through numerous allergy tests, asthma tests and the doctors gave me nose-drops, inhalers and at one point they even diagnosed me as suffering from depression and prescribed anti-depressants. I was really dubious and said that I didn’t feel in the least bit depressed but it  was explained to me that depression could manifest itself in many ways.

I took one pill and felt so fucked up the next day that I threw them away never to take them again.

I really struggled to get through karate sessions, but the enthusiasm of our students really kept me going.

Helena turned 40 and I took her for a trip to Queenstown to celebrate. It was a great trip but I really didn’t feel too good – I revealed to Helena that I thought that there was something very seriously wrong with me.

Helena sat bolt upright. I don’t think that she had fully realised how bad I had been feeling and showed me great sympathy and caring for the rest of the trip. She assured me that we would both get to the bottom of whatever was plaguing me when we returned from our Holiday.

I made another appointment with the doctor and she sat me down. She said that she had received the results from my chest X-ray and that they suspected that I had Sarcoidosis. She continued to explain that it was a very rare disease and that they would need a lung biopsy to confirm it.

Listening to what the doctor was saying made me feel like I had been hit full force in the stomach. I could hardly speak.

When I eventually gathered myself, I told her that I knew all about the disease as my wife had been diagnosed with the same disease 7-years earlier. It was the doctor’s turn to be shocked – she said that it wasn’t possible – that was only a 1/210,000 chance of getting the disease. 

I read all the latest research only to learn that not much more had been discovered. There were various theories about a virus being the cause, or a bacteria and that the only treatment was Prednisone.

The only thing that Helena and I could think of, no matter how irrational, was “That flat has come back to haunt us!!”.

I continued to decline. I went through all the tests, the lung biopsies and respiratory tests and, eventually, the diagnosis was confirmed. As an athlete with my history, they estimated that my lung capacity should have been anything from 110% - 150% of normal but it was in fact only 51%.

I can remember at the time that part of me felt relieved. There really was an explanation to the way I was feeling. I wasn’t imagining it all, I wasn’t depressed, I wasn’t letting myself down by not training enough and I wasn’t drinking too much or getting old. I was actually seriously ill!

I decided straight away to tell everybody I knew, all friends, relations, all the people at work and, most importantly, our karate students.

Helena and I sat down and had a heart to heart with our entire class. We explained that in normal circumstances, we liked to lead by example and that we never asked students do anything that we couldn’t do ourselves – but things were going to have to change. They would have to get used to taking responsibility for their own fitness, as I would be leading them through much less gruelling warm-ups in future: concentrating more on karate training instead.

They would also have to get used to being led by senior students while I sat it out and only occasionally be put through a bastard of a session led by Helena.

I am glad we came clean right from the beginning – everybody was so good about it and very supportive. All sorts of people came up to me to tell me of their own illnesses and how they had gotten through them. I mean, it was all sorts of people who had recovered from all sorts of various cancers, injuries and infections: you name it! I was really touched.

But I was seriously worried about my Karate future. Was it really possible to run a club from the sidelines? Would I retain any credibility barking orders, but not doing it myself?

Would our students still want to train with me when I could no longer inspire them with my feats athleticism and suppleness? I really didn’t know and I was almost sure that I didn’t want to find out either– I actually truely wanted to give up and close down the club.

But there were three things that stopped from throwing in the towel. Firstly was Helena. She pushed me and reminded me that I had pushed her when she was ill and she would also see to it that I got through all this with my Karate intact.

Secondly was my conscience. I knew how important karate was to me. I had been training for nearly 30-years and I would have cried blood if my instructor had suddenly shut shop and pissed off.

Some of our students had been training with us for nearly 5-years at that time and I really couldn’t do that to them. It was June 2002.

Thirdly, our students were as enthusiastic as ever. I wasn’t loosing credibility and they still wanted to learn from me. I could still do the stuff after all.

30-years of knowledge doesn’t just disappear simply because you are not feeling well. I realised that all of what I had to give people was still there, I just had to be careful not to over exert myself.

I realised that most of my fears were pride related. I wanted to be the best; I did not want to be a has-been!

It is one year on now and the club is still going strong, and in many ways; stronger than ever. It is July 2003 and I have learned a lot about myself, my karate and about life in the last year.

Personally, I have much more humility and much less arrogance than before. I have much more understanding for the baggage people carry around, whether it be illness, injury or emotional problems. I have much less of an “If you are strong, you can push through it” attitude.

Even though I was in the middle of it when Helena was ill, I realise now that I really didn’t understand what she was going through at all.

She was in many ways dealing with her illness alone, even though I was always there supporting her. I remember asking myself why, with her phenomenal mental strength, she wasn’t making more effort to make herself well.

I am incredibly fortunate and lucky that I am not alone in the same way that she was: she truly does understand what I am going through as she has actually been there herself.

At work, I was always results-driven. I pushed myself hard and expected others to do the same, especially in my management positions in Sweden.

I have mellowed a lot and I realise now that the function of a workplace is not solely to drive through the wishes of the owners at any cost. It also must function to take care of the people it employs; to respect their free time and make allowances for their baggage.

I have always been a bit of a socialist politically, but now even more so – I have started to resent this dog-eat-dog, user pays society that we seem to be creating for ourselves. This kind of society blinds itself to the consequences of its actions and as human beings, we have a duty to take care of each other.

Ironically, in all this – my karate has actually improved. It is better than ever in fact. I have become far more economical with my effort and my moves have a flowing quality that they never had before.

I have consciously looked for more effective ways of doing things and have found techniques and tactics that close opponents down a lot quicker.

I have understood that knowledge lasts a lifetime, but fitness and agility are just temporary gifts.

True karate should not be as heavily as reliant of fitness and agility as it tends to be today – the elders and experts of before knew all this. This to me represents yet another failing of sport karate of today.

Probably one of the best lessons that I have learned is that there are plenty of rewarding challenges out there to focus on once your body starts to deteriorate. I have learned to appreciate my on-going academic achievements and you truly can get as big a buzz out of intellectual accomplishment as you can with the physical.

Whether it was the flat or simply a bi-product of some viral cold, or something else – we will never know. We found out recently that two more people we know from our close circle of friends in Sweden have also contracted Sarcoidosis.

It is a horrible disease, not just because of the fact that it makes breathing hard work: but also because of the debilitating fatigue that is associated with it. It sucks the spark out of life!

But then again, hey: there are many many worse things that I could have come down with – so I am lucky.

One day – I will be rid of this illness and judging by the course that the disease has taken for Helena, I probably still have about 3 – 4 years of rehabilitation left.

But I will never forget the lessons that I have learned. I am grateful and I am a better person for it.

If I was religious, which I am not: I could say that God gave me this disease for a purpose and then I could say – message received and understood.