John’s Story

 

John GoodwinMy name is John Goodwin and I was born in Goulburn in October, 1951.  I have a type of mito called Leber’s Hereditary Optic Neuropathy (LHON), which caused me to go blind at the age of 47.

After leaving school I had managerial jobs in accounting, taxation, mining and communications but in 1997 my eyesight began to fail.  It started as fogginess in the right eye with my left eye fine, but once the damage had been done, the LHON moved left.  I had to finish work on medical grounds in May 1998.

This wasn’t the first time I’d heard about LHON. My mother lost her eyesight in 1963 at the age of 44. The eye specialists at the time had no idea what they were dealing with.

Then my brother Allan aged 32 lost his eyesight in 1981. My brother also was given very limited information but was aware it was LHON.

My experience in the late nineties was better. There was more information available on the condition. I had long felt that I too would one day be in the same situation as Allan.  In fact, after one specialist visit he relayed to me with great gladness his ophthalmologist’s words that “if your brother John does not develop LHON by the age of 40, he never will”. This wasn’t the case.

When I was diagnosed with LHON my ophthalmologists told me that there was no medication or surgery that was available for the condition. Instead, they suggested that I start taking the anti-oxidants, CoQ10 and Vitamin E, in larger than normal dosages.

Some people expected it to have been a very confusing time for me but it wasn’t too foreign as I’d grown up with blindness in the family. When my mother had lost her sight, I read her the newspaper and helped around the house. When my brother had lost his sight, I found out more about the condition.

It was from my brother that I learned the basic information about LHON: the loss of central vision, blurred vision, the inability to see faces, and a technique where one tilts his/her head to maximise the use of the peripheral vision.

Fortunately, I was never really into sports so that didn’t change much. Socialising did become a little bit of a problem because I started realising that no matter how much legislation the government brought in, discrimination would still exist in the real world. With that, my social life came to a halt. There certainly was a period of adjustment; I was a gregarious person. I don’t know if people were afraid of catching something…?

The positive side, though, came in two parts:

Firstly, I had met a beautiful lady a few years earlier who supported me throughout my vision loss. We discussed getting married. I wouldn’t have had ill-feelings at all if my proposal was answered with a “no”, but Robyn was delighted and we married in late 1998. I was legally blind by then but it was perfect. We complement each other – she is my rock, and I am hers.

The second positive thing was that I didn’t give up and decided to turn to additional studies in lieu of working. I had enjoyed mathematics greatly at school but my passion lay dormant for many years. So I thought “why not” and decided to enrol as a mature age, disability, off-campus student at university. It’s funny being older than your lecturers…

The disability unit and student counsellors were wonderful and showed me that I was one of many studying with a disability. I used assistive technology such as Zoom Text, without which study would have been impossible, and worked to reach the same requirements as non-disability students.

I graduated with a Diploma in the Sciences, majoring in mathematics in 2006. I enrolled for a second university degree in 2014, studying a double major in mathematics and engineering.

I’m now 64 years old and have used my studies to assist maths students at both School Certificate and Higher School Certificate levels. I really enjoy this and am now looking to continue sharing my passion. I don’t want to waste it by not passing on my knowledge so I would be happy to offer online mathematics help for any students with mitochondrial disorders.

Looking forward, there are certainly some positives. One of the good feelings my brother and I share is that LHON has come to an end in our family as it’s a maternally inherited disorder. However, I’m very aware that this is not the case for everyone: mito will continue in other families, while others again may not even know it’s the reason behind their illnesses.

That’s why I’m passionate about spreading awareness and fostering GP education, especially in Goulburn and Young where my family comes from. I’ve been working with the Mito Foundation to distribute its GP education booklets locally. I’ve received positive feedback so have felt encouraged to continue.  I’m happy to do it and I’m glad I became involved. Over the years, you realise that mito disorders can be significant, especially when there’s situations where doctors (not through their own fault but perhaps a lack of mito training) don’t know enough about this disease.

Ultimately, I know from my family’s experience that knowledge comes over time. Today, we know more than when I was diagnosed. In 10 years’ time we’ll know more again. And in 20 years’ time, even more.

 

–  John Goodwin, April 2016