Peter Jones, Carterton. PHOTO/EMILY IRELAND
Tackling a full marathon for the first time can be a huge challenge.
But imagine doing it blind.
This Sunday, Carterton’s Peter Jones will be doing just that.
He was born with the progressive and gradual eye disease retinitis pigmentosa, affecting one in 4500 people globally.
He’ll be taking on the 42km challenge over the Auckland Harbour Bridge with his daughter as his guide.
“The aim will be to finish it and survive,” Peter said.
Peter’s vision loss journey began at the age of 13 when he was diagnosed.
“I’ve known since I was 13 that there was a chance I would go fully blind.
“No expert can tell you how that is going to progress.
“Ultimately, I’m the expert of my own eye disorder and what I see.”
These days, Peter’s vision is limited a very narrow field of fogged sight in predominantly grey-scale.
He is able to identify contrast only in well-lit situations.
He demonstrated his vision impairment by moving his hand across from his peripheral to directly in front of his face.
“I can see a little bit of movement from my hand way out in my peripheral.
“Then as I move my hand closer, it is completely gone, completely gone, until I get almost front on and I see a little finger again.
“I also get some colour from way out too, but there is no colour anymore in front of me.
He said he would walk down a street and see a flash of cour in his peripheral – “it might be a bright flower”.
“I’ll turn, and it will just be a dirty white or another tone of grey.”
Peter’s older sister has the same eye disease.
Both her two children, and Peter’s daughter are unaffected.
“How it has affected me is that it has had a very profound effect on my employment over the years.”
Peter worked in dairy farming for 14 years.
He has also been a fencer, and worked at JNL, giving up fulltime work in 2015.
His wife works fulltime and supports both of them.
“When you stop work, you have more spare time and more energy.”
That’s when Peter began tandem cycling with cycling enthusiast Rod Sutherland, joining him in the local multisports biathlon.
On ya bike
Peter is a pretty keen cyclist.
Having given up his drivers licence in 2000 because of his vision loss, he used to ride his bike to work.
“What’s really nice with tandem cycling is you can get on the back and then just go flat out.
“As you lose your sight, everything slows down – everything you do is slow.
“Everything takes longer, and it’s frustrating.
“To get on the bike and not have to think about anything but pedalling as fast as you can go – I just love that – that feeling of getting some speed.”
On the other hand, running is not something he particularly “enjoys”.
“I don’t think I’m a natural runner . . . running is a bit harder.
With very limited vision, the only way Peter can run is with a cane and a guide runner who runs in front of him holding the other end of the cane.
“The cane is quite long. It gives enough space between us so that our legs never touch.
“The advantage of running directly behind a guide is that they can give you warning of little hazards and stuff like that.”
On Sunday his daughter Annie will be his guide runner.
“She hasn’t done a marathon either before and has been overseas for the past four months – I hope she has been training.”
“On the day, we can only hope for the best.”
Man’s best friend
Peter is partaking in the Auckland Marathon to raise funds for the Blind Foundation and Blind Foundation Guide Dogs.
He was on the waiting list for about a year to receive his own guide dog, Harlow, a Golden Labrador-Retriever cross.
Unfortunately, even after the rigorous training, she is a bit too “spirited” for the job, sometimes leading Peter into people’s sections.
“Sadly, Harlow isn’t going to stay with me because she hasn’t made the grade.
“We’ve done our absolute best but she has a few cheeky habits and will go out for adoption.
“I’ll miss her dearly, which means I’ll end up waiting again.
“It has been a tough decision and I’ve been thinking about it for months.
“[Guide dogs] are with you for a long time and you have to be able to trust them.
Harlow is easily distracted – “One night she took me into someone’s section – that was interesting”.
He said the greatest thing about having a guide dog is that “there is always an icebreaker.
But, other people still need to judge when the dog is in the middle of working before they greet the dog.
“You certainly don’t want to greet a guide dog when they are walking down the street with their person.
“I’ve had people wanting to pat the dog when I’m halfway across a road – one of my most anxious moments.
Despite what people might think, guide dogs aren’t trained to know when to cross a road.
“It’s up to the handler to make that judgement.
“When I cross the road, it is all about listening.”
Peter said his vision impairment was a challenge.
“But everyone has their own challenges, whether it is socioeconomic or health related, age, it just means some aspects of life you have to work harder, but you just have to make the most of it really.
“I used to play competition badminton, but I could never work out why I could never get past the C grade
“And it’s because you just don’t actually realise how much you are missing with vision loss.”
There are other challenges, like knocking over things – “when you are still using your vision as your first sense, you’ll knock things over all the time because you are still moving at a normal person’s speed”.
Peter was asked whether he thought it would have been easier to have been born blind so he never knew what he was missing out on.
“Personally, I feel very fortunate to have seen what I have seen.
“I’ve seen brilliant vistas and forms of nature.
“To compare yourself to someone who has never had that, you just can’t.
“I feel fortunate to have experienced the things that I have before my sight got to the stage it is at, and to have those memories and to know exactly how things are supposed to look like.”
A link to Peters Auckland Marathon donation page can be found here: aucklandmarathon2018.everydayhero.com/nz/pete-s-red-puppy-appeal-marathon.
- Living With is a Wairarapa Midweek series exploring the many conditions and challenges Wairarapa people are facing each day in an effort to bring about awareness and understanding. If you have a story to share, contact email@example.com.