We all have the capacity to make a difference

This pristine morning saw the sun shining brightly on the bustling commuters spilling out from Flinders Street station, seemingly not fazed by the nippy seven degrees. But it wouldn’t have mattered, had it been a gloomy weekday, because as life throbbed along outside, something poignantly powerful was unfolding inside the walls of Melbourne Convention and Exhibition Centre.

We gradually filled the foyer – DonateLife staff, medical experts, researchers, donor families, live donors, organ recipients, volunteers and more – all integral parts of the organ donation family. The pulsating energy and goodwill amongst the crowd of 250 at this particular event is a given at all DonateLife occasions.

I took a seat next to, Clem, a lawyer from Western Australia. Immediately into deep conversation before proceedings commenced, I learnt that Clem had received a kidney from his older brother seven years earlier. Was it fate that we just happened to sit next to each other? Clem was encouraged to learn that I too, like his brother was a live donor, and my kidney which I donated to my twin sister has given her life for near on 45 years.

The inaugural DonateLife community forum was indeed crammed full, promising: testimonies from donor families, all with heart-wrenching stories to tell, from recipients, forever grateful for being gifted a second chance at life, having their sight restored or being freed from a life hooked up to a dialysis machine – and many more of those, touched somehow by the miracle of transplantation.

Early in the day we heard from Oren, whose eldest son, Jack, died of meningococcal disease at 18. Oren, who became a powerful advocate for organ donation explained how Jack, as a registered donor had simplified the decision for his parents, to consent to his becoming a donor. Jack had previously made his wishes clear, never imagining that tragically those wishes would be fulfilled so imminently, and in so doing, transforming the lives of five recipients.

Oren, like the many other donor family members, some of whom had lost children, partners, siblings, or parents shared a common link – they knew at the core of their being that the one positive which had come from the most agonising time of their lives was that through their selfless gifts, other families had been spared such torture.

Twenty-one-year-old heart recipient, Luka-Angel, embracing her second chance at life as an author, dance teacher and filmmaker, hopes that sharing her inspirational story will support and make a difference to other young lives.

Jake, diagnosed at three with a genetic liver condition, became the 2000th Australian to receive a life-saving liver transplant at 13. He honours his donor’s gift through his activism in developing a supportive peer network.

The audience sat transfixed on story after story from a stream of impassioned panel members, conveying the enormity of their personal life-changing experiences.

I’ll recall always the words of my dear friend Len Hain, a double-lung recipient: “When you can’t breathe, nothing else matters.” Len, suffering from emphysema, couldn’t breathe without the aid of his oxygen tanks. That is, until the transplant 23 years ago which saved his life and allowed him to breathe freely again. Len and I met at Kew Hebrew Congregation not long after his transplant. I’d been invited to speak, together with my sister, as donor and recipient on the subject of organ donation from the personal and Jewish perspectives. Len and his wife, Nicole, a vivacious and strong Israeli who was the rock by Len’s side throughout his illness, his transplant surgery and until he sadly died recently on April 24, were in the audience, coming up afterwards to meet us and talk. As is common within the Jewish community of Melbourne, we discovered links to our past. That was the beginning of a special friendship and shared passion to increase awareness and support of organ donation.

Len and I became colleagues as volunteers for some two decades at DonateLife, Vic.

People love personal stories and Len and I made an ideal “double act” as live donor and recipient. For many years we’d talk to community groups of all ages in an effort to increase donor rates and encourage those who chose to become registered donors to make their wishes known to their loved ones, as Jack had done as a teenager.

We also, over the years, participated in several Jewish forums, joining forces with rabbis, Jewish physicians and surgeons, as well as others with lived experience of organ donation. The question would typically arise regarding halachic law in relation to burying the body intact, and comfort would be provided by the words of the Talmud, “If you save one life, you save the world.”

As a live donor I feel I’ve been blessed to have been given this opportunity in my lifetime. As humans, we all have the capacity to make a difference, and as Jews, I believe, we also have the responsibility.

Register as an organ and tissue donor at donatelife.gov.au

Janine Joseph is a Melbourne-based writer.