“So I’m standing there with my shorts down, thinking ‘oh, what a relief’, and then suddenly I realise something’s wrong, but wild horses aren’t going to stop me now. All of a sudden, bang, bang, bang! I’m standing there, first time in my life, totally blind, drip in hand… and I realise I hadn’t lifted the toilet seat. I’m like ‘oh s—, there’s no way I’m stopping!’ The poor guy next door’s getting splashed – bang, bang, bang! Now, at that precise point, I probably had two options: one, burst into tears, thinking ‘life is absolutely hellish’. The other option was to burst out laughing at my own stupidity. I was lucky – I burst out laughing, apologising to the poor guy next door; the nurse is trying to get me to unlock the door behind me and I’m thinking ‘fine – but where’s the lock?’ I may have crumbled at that point, but I thought ‘if I can get through this, and not want to be dead, we’ll just wait and see’.”
Russell Macmillan was 23 years old when he completely lost his sight. Following an operation to attempt to reattach his retinas in Moorfields hospital in London, he spent 10 days “posturing” – lying face down to keep the gas bubbles behind his eyes in place, hoping the procedure had been successful. As hellish an ordeal it may sound, he laughs as he recalls that his biggest struggle at the time was not being able to smoke whenever he wanted: “The deal was, if I was a good boy and spent 50 minutes posturing, I was allowed to get up once an hour to get a fag.”
After being diagnosed with type one diabetes on his eighth birthday, Russell had to begin injecting himself with pork-based insulin four times a day. He continued to lead an active lifestyle, playing football and badminton throughout his teenage years. But less than ten years later, doctors noticed spots forming behind his eyes. A self-proclaimed “Jack-the-lad”, he admits that this was hard to accept, knowing that blindness often followed a diagnosis such as his. “After trying desperately for long enough to get it right, I had to accept that it was going to be impossible to get it spot on and to control this. So, I decided when I was at university, to live life with a crash-and-burn-type policy, shall we say? You know, ‘if I’m going to go blind, I’m going to enjoy myself.’ And I did come out with an honours degree in socialising!”
Unfortunately for Russell, the prognosis wasn’t good. Following his time in Moorfields, he was left with only 5% vision, which he says “is like looking through a drinking straw”. In his early twenties, at a time when his friends were still at university, Russell found himself unable to get a ten-year life insurance policy: “In those days, once your eyes went, it was automatically assumed that within a year, year and a half, your kidneys would go. So, my only option then was to work, and hope that it would be enough”.
What’s striking is how positively Russell, now 53, speaks about his experiences, when most other people would probably rather not remember them. For most young adults, the thought of losing their sight alone doesn’t bear thinking about. Does this come from the benefit of hindsight? “My fall-back position was always ‘if I can’t cope with it, then I’ll find a tall building, and I’ll jump’”, he says, extremely matter-of-factly. “Having that as my psychological crutch enabled me to deal with the constant to-and-froing of not knowing whether my treatment was working or not. So, when I eventually did go completely blind, it was almost a relief to know that I had some degree of certainty about what I was dealing with.” Unbelievably, Russell ended up being taken around the wards to offer support to others who were dealing with losing their sight.
The development of medical technology since the time Russell spent in Moorfields meant that he eventually moved onto taking human insulin to control his diabetes. In the meantime, he got married and, along with his wife, Yvonne, who he lives with in Newton Mearns, started up East Renfrewshire Good Causes, a charity which provides support to people in the local community.
However, as the doctors had predicted, albeit far later than anticipated, his kidneys began to fail. He was put on the transplant list with only 8% kidney function, and narrowly avoided dialysis. A year later, he received a call to say that organs were available and ready for transplant, so he made the midnight journey to Edinburgh in the back of an ambulance. But the organs turned out not to be suitable, and so Russell returned home, and returned to his place on the register. It’s not surprising that he remembers this as a particularly taxing time, and he says the psychological impact not only on himself, but on his wife, too, was huge.
33 years after his original diagnosis, Russell finally received a double transplant. He spent six weeks recovering from the operation, but it was only after this time that he realised the true significance of the procedure. He believed that receiving a pancreatic transplant meant that it would be far easier to control his diabetes, as the new organ would allow him to experience the symptoms associated with low blood sugar. “‘You won’t need hypo symptoms’, the doctor told me. ‘How no?’ was my immediate response. What I didn’t realise was that I had actually been cured of diabetes. I’d been doing injections four times a day, so to me it was just like brushing my teeth or taking a breath. I was once on the back of a Harley Davidson, and we didn’t want to be stopping, so I just got the syringe out and popped it under my jacket, while we were probably doing 70mph down the motorway.”
Russell doesn’t know much about where his organs came from, other than the fact that his donor was female. He says he’d love to get in touch with her family to thank them for the gift he was given by their relative, but the system only allows for this when people on both sides of the transplant request it. “I’ve only had these last 11 years of life thanks to the sadly deceased organ donor. What’s behind this charity I run now? Without those two organs, Good Causes wouldn’t have existed. Those two organs have given out over £600,000 worth of support within this community, helping 1,780 people. All thanks to the generosity of the donor.”
Sitting chatting to Russell, surrounded by no less than half a tonne of dog food, it’s clear just how far his support reaches. From providing every day goods such as this, to handing out toiletries to the homeless, to campaigning for better road facilities so the elderly can get about with ease, it’s not difficult to see just how much good these two organs have done. And Russell refuses to take any credit for his work: “If you want to act the hero, go and get a double transplant. Then you’ll understand who the real hero is.”
The Scottish government announced in July that they will introduce a “soft opt-out” system of organ donation. A previous attempt to introduce similar legislation failed due to a lack of consensus on some of the crucial details. The British Medical Association has announced its support for a future change in the law. Unsurprisingly, Russell is a fierce advocate of this change: “The argument being, if you would accept an organ, shouldn’t you then be happy to give?” But, he says he understands why people were previously reluctant to explicitly give consent for the future use of their organs. In fact, he admits that even after receiving his double transplant, he found it difficult to sign up to the register himself. “People don’t want to think about their own mortality, so I get that people think ‘Well, if I sign this box, does that mean I’ll snuff it tomorrow?’”
Surely, though, Russell is a testament to the good that can be done by those who allow their organs to be used by others. From the 23-year-old Jack-the-lad being taken round the wards in Moorfields eye infirmary to offer encouragement to people who, arguably, had lost less than he had, to the man tirelessly campaigning for those around him, his strength of character is admirable. For him, though, “it’s the least that I can do. You could erect a park bench in someone’s memory, or you could carry on their legacy by helping thousands of others. For me, it’s a no-brainer.”