John Brown, New Zealand

Home: Christchurch, New Zealand
Age: 68
Diagnosis: May 1966
Occupation: Journalist

It was late May, in one of the world’s most southern cities, that my life changed forever. The time was 4:30 pm. The day was cold, damp and foreboding when I left the consulting rooms of New Zealand’s leading neurologist, with the information bombshell from the professor, “you have Multiple Sclerosis, Mr Brown.”

This diagnosis came after a week in hospital where in pre-MRI/Cat Scan days I had had a huge needle inserted in my spine which clinched the MS diagnosis. I stumbled out into the crowd of people – brisk people - forging their way to warm comforting homes. There was no comfort for me then. The professor’s diagnosis may have been clinched by his hospital tests, but he provided me with precious little information on how to cope.

As I made my depressing way towards a bus stop, I bumped into a Dutch church Minister I’d interviewed earlier that day for the newspaper where I was a journalist. “What’s up John? You look rather sad.” He asked with a special sort of understanding and wisdom that older people summon when speaking with those much younger. I was only 28. The year was 1966.

The Dutch Minister was Pieter de Bres. Pieter’s kind enquiry almost brought me to tears. And, as the saying goes, “God works in mysterious ways”, for as I retold the trauma surrounding my MS diagnosis, I was enveloped in a comforting blanket of true understanding from Pieter, who had a welcome understanding of the crippling affliction from his homeland, Holland, where public knowledge of MS was widespread.

Certainly in those far off days, 40 years ago, the average New Zealander had never heard of MS. Pieter took me home to his wife and family and the personal quest to understand and live with MS began. The de Bres family had relatives in Holland with MS. Little did I know it then, that within ten years, I would be the New Zealand delegate at the World Multiple Sclerosis Annual Conference in the homeland of the de Bres family.

That conference in Amsterdam was just one of many colourful and exciting canvases that I created through travels to more than 14 different countries worldwide. And to recall now in 2006, that it all started with that diagnosis of MS so very long ago.
My return to work the next day with my MS diagnosis swirling round and round in my brain, was eased somewhat as I shared the personal grief and fear with friends and work mates at my newspaper, New Zealand’s oldest – “The Otago Daily Times”.

When I took promotion three years later to work for “The Press” newspaper, in Christchurch, my country’s second largest city, I found out that two young woman journalists on “The Otago Daily Times”, had, on learning of my MS diagnosis, gone to the Editor of the newspaper, offering to do my typing should my hands become affected by MS. When I learnt of that offer on the night of my farewell party, I did cry – tears of trust and thanks, tears of human love and affection. Fortunately my arms remain OK, though I have a Voice Recognition Programme on my computer which I use when my hands do become inoperable, which is usually two or three times a week.

My move from Dunedin to Christchurch also brought me closer to my parents who now had to witness their once-fit son, coming to terms with having to use a walking stick to get around.
In Christchurch I became deeply committed to getting a better deal for physically disabled people. I wrote a great deal for “The Press” on disability issues and I was the first person with MS to become a member of the local MS Society. In the 1970’s in New Zealand, people with physical disabilities were patronized, isolated and sidelined. They were expected to be grateful. They had little political impact. There were few who had the courage, or the means, of promoting the human rights, and responsibilities of physically disabled members of the community.

It was just too easy for politicians, local body officers and the news media to consign disabled people to what they termed, the “disabled community”. In my fight – and believe me it is still a continuing battle – I attest that there is no such thing as the “disabled community”, a term which of course, conveniently for officialdom, further marginalizes huge numbers of people. We disabled people are part of the community. We must be resolute in keeping this philosophy alive and well. There is little to be gained by bleating about not getting a fair deal. We have to forge our role in the wider community.

How many of us, bound to our wheelchairs, have winced with anger, frustration and embarrassment, when well meaning able-bodied people, usher you towards other wheelchair users at social functions, as if our wheelchairs make us all one. We are, let’s face it, all individuals with all the colours of humanity. We have the right to expect calm, polite recognition of our individuality. Sadly there are still many instances of the “does he take sugar in his coffee” syndrome.

In 1976 while a journalist with “The Press” newspaper in Christchurch, I was awarded a Winston Churchill Memorial Trust Travelling Scholarship – the first awarded to a disabled person in New Zealand. My employers topped off this award of three months overseas travel and study with a huge boost of six months leave with full pay. This singular honour meant that I had nine months overseas. During this time I forged friendships - many of which continue still thanks to regular e-mail contacts.
My memories of these people are wide and diverse. There’s no space here to relate them all. One alone will suffice, for it is a credit to the power and worth of human communication.

It was May 1976. I had just checked in at the Sonesta Hotel in Amsterdam. The World MS conference was due to start at the adjoining conference centre, the Olde Kirche, linked to the hotel by a tunnel underneath the Single Canal. I headed for the lift in my wheelchair. Another MSer, a lady, was being pushed towards the lift by her helper. My good manners kicked in and I wheeled backwards allowing the two ladies to go first. When I alighted from the lift into the hotel’s reception room, I pushed myself over and joined the two “lift” ladies. Thus started a friendship which still endures.

The two gracious, dynamic ladies were Resch Rosenfeld and Gillian Cooper from Zimbabwe (it was called Rhodesia then). They, like me, were their country’s only delegates to the Amsterdam World MS Conference. We three were almost inseparable for the duration of the conference and our meeting sealed a unique friendship which in 1979 brought me to Zimbabwe/Rhodesia, after my attendance as New Zealand delegate at the World MS Conference in Vienna. But as the saying goes “that’s another story”.

There are so many, so very many, stories… and multiple sclerosis has been, and continues to be, the key which opened so many joyous, fulfilling human relationships for me. There is nothing in the world so full of trust and warmth as the welcoming smile of a true friend. That spark ignites such rich memories. Memories are forever, friendship is eternal.

John Brown, Christchurch, New Zealand.
Cheers. L’chaim (To life)