Graham was borne to Judith Johns in Chester (an ancient originally Roman city in NW England) on Sept 13th 1969. In October 1970, we moved to South Oxfordshire, where apart from a break when we moved to Switzerland, we have lived ever since. His younger brother, Gareth was borne in Reading in April 1973. We moved to Switzerland in January 1974 (DŸbendorf, Canton ZŸrich). He attended kindergarten in DŸbendorf and learned to be bilingual in English and Schweitzer Deutsch. At an early age, he became very interested in wildlife (particularly birds) and geography. He could name most birds he saw and place any major town on a world map before he was six. We returned to England in 1976, when he attended the local primary school in the village of Woodcote. By now, he was a year behind the other children in the primary school (primary school starts, in England, at age five). However, he quickly caught up, and transferred to secondary school a year early. (Langtree School, also in Woodcote).
During primary school, he started developing stomach pains. He was also growing very slowly. After investigation in the local hospital, he was diagnosed with Cystic Fibrosis, and the stomach pains were the result of damaged pancreas function that made it impossible to digest food. We were advised that he might live to age 18 or so, but that advances were being made. To overcome the digestive problem, he had to drink a foul-smelling suspension of pancreatic enzyme with each meal. He felt better with this medicine which he was able to take with him even to cub camps.
He did well at secondary school, particularly in English, Maths and the sciences. Early on (when only 11 or 12), he produced good quality project work. We felt that his essay on the "Piltdown Man" fraud was a small masterpiece, reseached from encyclopaedias and articles in the "New Scientist". He was keen to participate in sport despite his small stature and not very robust physique. He represented the school in cross-country running and played football for local youth teams when he could. He left Woodcote with good "O" levels (the standard UK examinations which complete compulsory education and qualify, amongst other things to study for "Advanced Level" examinations).
He had his first "Sinclair Spectrum" Computer early in his secondary school career. As well as playing games and programming in "Basic", he taught himself to program in Z80 Assembler Code.
His quiet sense of humour and sense of the ridiculous was now well established.
By this stage, he had read about Cystic Fibrosis, and knew how dangerous it could be. He knew that he would not live to grow old, but said that 35 might be enough to achieve something in life.
His O-level results qualified him to study for A-levels, which he did at the Henley College (in Henley-on-Thames). He studied two-year courses in Mathematics, Economics and Computer Science. He intended to study for a degree that would qualify him to work in financial software (or go straight into a bank as a trainee). The college was very keen on rowing and recognized his small stature as making him an ideal candidate for a cox in one of their rowing teams. Throughout the cold winters, he trained with the rowing teams on the Thames at Henley. He had good success as cox to one of the girls’ rowing crews. It was an impressive sight watching one small male urging on a crew of big, strong females. It also appealed to his sense of the ridiculous.
He found time to work part-time at a local supermarket, where he claimed the position of king of the toilet roll. (He responsibilities included that part of the stock).
During this period, his health deteriorated further. His pancreas deteriorated further so that he became an insulin-dependent diabetic, and he also developed lung problems. The local hospital in Reading had no staff with specialist skills in CF, so his condition was just allowed to deteriorate without treatment, despite regular attendance.
Despite his poor health, and breaks as an in-patient in hospital, he did well in his A-level examinations. He was accepted at interview by one of the major UK banks, and prepared to start work in September. However, they asked for a medical report and then delayed and delayed. In the end, he was rejected (clearly on medical grounds). By this stage, he was too late to apply for any of the university degree courses that he would have liked. He gained very late entry onto a BSc in Physical Sciences and Computing at South Bank University. The move to study in London was a blessing in that our General Practitioner recommended transferring him to a specialist CF doctor at the Brompton Hospital. He met Dr Ron Knight, who has cared for him every since.
The long travelling from Oxfordshire, his marginal health, and the necessity to do extra study in Physical Sciences that he had omitted at A-level, made the degree course very hard for him. At the end of one year, he had done well at Mathematics and Computing, but decided that it was not practicable to continue with the course.
After a short period of temporary work, he gained a place in the Computing and IT support group of the Bank of Ireland Mortgage Centre in Reading. Initially, he worked as an operator doing shift work, but was eventually promoted to IT support. He became expert at operating the large UNIX machines. He also taught himself "Cobol" and was able to enhance and maintain the ageing Cobol programs. (Even then, very few new programs were written in Cobol). In due course, he transferred to PC support, where his expertise on PC’s and their peripherals was well recognized. He worked both as a staff member and as a contractor. Despite his illness, his attendance record was exemplary. On more than one occasion, he went a whole year with no sick leave at all. (He timed his hospital appointments, so that they did not interrupt). His sense of humour and the ridiculous were well known at the bank. He particularly enjoyed the first series of "Star Trek". In that series, whenever the "Enterprise" was buffeted, the actors all rocked around in their chairs to simulate buffeting. Bank of Ireland IT staff were soon rocking too and fro in their chairs, and whizzing them across the room, as the bank was attacked by alien spacecraft. In all he spent over 12 years with the bank. The Bank of Ireland equal opportunities policy has been second to none. There has been no discrimination on the basis of disability (or any other cause). Indeed, they have been very supportive. When his health deteriorated to the point at which he could not work full time, they switched him to part-time about 3 years ago. He had to give up work about 18 months ago, but they still kept paying him on the basis that he would be welcome back after a lung transplant. He developed close friendships with many of the Bank’s staff. His boss (Les Crowe) and colleagues visited him both at home and in hospital.
He continued under treatment with Dr Knight, transferring from the Brompton Hospital to Frimley Park Hospital when Dr Knight moved there. Dr Knight, incidentally, held his mortgage with the Bank of Ireland, and Graham teased him on how well paid the doctor was for treating him. Dr Knight’s treatment slowed the progress of Graham’s disease considerably, and we have much to be grateful for. The staff at Frimley Park got to know Graham well, and they had a great mutual affection.
As his health deteriorated, Graham was put on the Lung Transplant list about two years ago. Initially, he was on the St George’s list. However, shortly after joining that list, a scandal broke when it was revealed that very few of their patients survived. He was transferred to the Harefield list, which has an outstanding international reputation.
Graham was a keen computer-user at home as well as at work. He made many friends over the internet. He was, of course, eager to learn more about his condition, and knew more than many of the people treating him. As his mobility became less, he spent more and more time communicating with people around the world. Among the friends that he made, we can mention four. Mary-Lou McDowell in the USA has been particularly supportive. He met her physically only once, but treated her as a close family friend. He enjoyed hours of Anglo-US rivalry; he loved the American people (although not their government). He enjoyed trips to the USA (Poconos Mountains) where they, along with other CFers met. He became a keen member of the #knowitall quiz group and made friends with Ida Koelstra in Holland. He has always been a sponge for all kinds of useless and useful knowledge and #knowitall was an ideal environment for him. He also liked strategy games, particularly Everquest. His long friendship with Rod Gray was always appreciated; we were pleased to see Rod here, and he was also pleased to visit Rod in Scotland. Rod bought and still has Graham’s second MGB GT. Finally, we must mention Diane Garnham. Her support and humour did more for him than anyone else. Not only did they communicate by computer, mobile phone text messaging and telephone; they also exchanged hundreds of letters and presents. The letters were particularly valuable when all other communication was impossible in hospital. It is a tragedy that she was involved in a motor accident when visiting him on the day before his death; they never met. We believe, however, that her support gave him at least six months of life he would not otherwise have had.
Graham had a gift for weaving fantasy into real life. He enjoyed items like the "last word" in the New Scientist magazine that pedantically analysed the claims of manufacturers building strange pictures of what they meant. He could build up similar conversations, starting from the reasonable and extending to the ridiculous. He brought other people in. For example, his fantasy internet persona as a topless photographer was taken up by many ladies. They declared a "gra-bra" day, in which they claimed to all enjoy a one-day bra-free experience in his honour.
Outside of the internet, he enjoyed characterful cars. His first car was an ancient Hillman Imp. It was so difficult to work on that it was claimed that mechanics ran and hid whenever he approached a garage. He followed up with an MG Metro, then a real MG, namely a blue MG-B GT. This car was written off one morning taking his brother to work. A car drove fast straight out of a side-road. Fortunately, his quick reactions avoided any injury, but the Volkswagen golf that run into him was far more badly damaged. This car was probably his favourite. He got a Peugeot 307 GTi, but it was too fast and reliable to be fun. He moved on to Citroen 2CV. For those not familiar with it, you cannot slow down because it takes for ever to speed up again. He was never impressed with security. One day he felt poorly and drove it to hospital to present himself to Dr Knight. He was admitted as an in-patient and discharged two weeks later. He had forgotten to lock the car. Fortunately, trust is repaid with trust and nothing was missing. His second MG-B GT was red. It never quite matched his blue one, and his brother persuaded him that he needed a new, more powerful car. He sold his MG to Rod Gray, who drove it back to Scotland and did it up like new. Graham bought a Subaru which is still parked in our drive. He had thought that, with a successful lung transplant, he would sell it and buy back the MG. Other cars included a notoriously unreliable bright red mini. He never went for the new and reliable. He enjoyed the old and eccentric.
He was much loved by his family. He never resented his CF-free brother who reached high standards in athletics and played football regularly. On the contrary, he felt that his CF deprived his brother of some of the attention that should have been better shared between them.
His last requests, made informally the day before he died, were typical. He wanted significant sums to be donated to the CFRT and to the Frimley Park CF charity. He also wished other people to choose charities to give other significant sums to. However, he insisted, not to CF charities. He had never given to CF considering it rather selfish to do so. Instead, for many years, he made a monthly donation to poverty relief in third world countries. He felt that each pound invested there would save many more lives than a pound donated to CF.
He died on Friday 12th July 2002. His funeral will take place at St Leonard’s Church, Woodcote at 11.00 am on Tuesday 23rd July. Afterwards, there will be a short interment service at the Reading Crematorium. The arrangements are being made by the Co-operative Funeral Services, Southampton Street, Reading.
If you would like to do something in his memory, please encourage everyone you know to register as potential transplantation donors. Better road safety and improved intensive care have reduced the flow of donors to a trickle. (We should be pleased that four times as many people are surviving as 20 years ago). However, if every potential donor did donate, there would still be a big improvement. In the UK, only about half the CF patients on transplant lists survive to receive their new lungs. They are also much weaker than they should be by the time they receive their lungs. It is a bitter thought that Graham had been top of the transplant list for over a month. Even the day before he died, he was strong enough to survive the operation. The outcome for transplanted CF patients is excellent; he may well have doubled his life span.
We hope that you remember Graham with as much love as we do.
Judith and Bill Johns.