Oct 11 2012

Survivor Spotlight – Bill Irwin

Willy’s Story
by SCTA Volunteer Joanne Glosser Jaeger

Cher and Bill on vacation at Wanaka, New Zealand last summer


Vital Stats: 45, married to Cheryl for 24 years. 3 boys (Tom 20, Sam 18, and Ben 14). Tom is currently on exchange at Purdue University. He is studying Mechanical Engineering and got the chance to do one semester at Purdue. Sam has just started a Commerce degree at Lincoln University here in NZ, while Ben has 3 more years of High School to go.

Location: New Zealand. We live in Methven, New Zealand. It is a little rural service town with a twist, as it is the closest town to one of the country’s biggest ski fields so during the winter it comes alive with an influx of tourists and seasonal ski field workers. As far as NZ goes, it is physically a small country of two main islands (the ‘North’ and ‘South’ Islands!) with a population of 4 million. You can never be more than 70 miles from the sea, yet we have mountains up to 12,000 ft running down the centre of the South island. These ‘Southern Alps” divide the island into a wet, rainforest West Coast and a drier, flatter East Coast. There is a lot of dairy, cattle and sheep farming which has become very efficient due to our distance from world markets and zero subsidies. Horticulture provides a lot of exports also (kiwifruit, apples, wine) as well as niche technology companies. The climate is moderate, where we are we get frosts in the winter but the temperature is always above freezing during the day. In mid summer it gets to around 70 – 85 F.

About Photography: At 45 years of age I have come full circle and returned to my childhood passion of photography. At age 10 I was playing with developer and fixer in a makeshift darkroom, using my mother’s old roll film camera. I have always had an interest in computing as well as photography, so the upsurge of digital imaging was a great time to re-enter photography. In a desire to enjoy my work, I have self-imposed limits. My main interest is landscape photography.

Owner of www.billirwin.co.nz  Bill Irwin shows some of his prints on exhibit

I had been planning to advertise but have found I am getting as much work as I want now. I like to balance my time so that I can carry on my own photography, create my own prints, and print for others. I do not want to turn in to a full time print bureau, but I do enjoy the personal interaction with customers and helping them create the best possible print from their images. The feedback is very rewarding. My business plan is constantly being fine tuned with the aim of keeping true to doing what I like to do, while ensuring that I am actually generating income out of it.

I really enjoy the mix of creativity (the actual photography ) with the technical (the computing side of things). I also love my working arrangements, being self employed, planning each day as it comes. With the custom printing, I get a lot of enjoyment out of interacting with people , finding out what they want, and in a lot of cases producing a print the exceeds their expectations.

My lovely wife and family:

Our family last Christmas (back: Tom, Ben, Sam; front Cher & Bill

25 years ago I was an exchange student at Oregon State. I spent all of 1980 in Corvallis, OR and loved it. A friend and I bought a 1968 Pontiac Executive ‘land yacht’ and toured as much of the States as we could during breaks, until our car died three weeks before we were due to come home. It picked Mazatlan in Mexico as the spot to have fatal engine trouble, but we found a ready buyer for it (I like to think it has been reborn as a pimped-out low rider down there) and took the train back up to Oregon Toward the end of 1980, I met Cheryl who was at Linfield College in McMinville, OR. She visited NZ the following year, and the year after that we were married. We returned to my family farm here, as my parents were ready for retirement. It was a 600 acre ‘mixed’ farm. We grew a variety of seed crops (ryegrass, fescue, clover, lentils, peas, wheat, and barley) as well as raising up to 1000 lambs each year. We had borrowed a lot of money to pay out my parents, when the bad patch of the 80’s hit. Product prices were at all time lows, interest rates high, inflation rampant, and to top it of had one of the worst droughts ever in 1988. During 1985 to 1990 our three boys were born. These were character building days. Many of our neighbours went broke and walked off their farms – I guess similar things happened in the US (remember Willie Nelson’s FarmAid?!)

We managed to hang in there, and in the early 90’s could see that we were getting ahead.

Then the tumor struck: It was at this stage I started to have regular trips to medical personnel to figure out why I had on-and-off cramping, numbness and tingling in my left arm. I forget all the people and diagnoses I had, but they included a chiropodist thinking I had one leg shorter than the other and prescribing insoles! I had nerve conductions tests to see if I had a pinched nerve. A physio worked me over for months, but with no lasting results. Eventually I was sent for an MRI in 1994 and a large mass was obvious in my cervical spine area.

At this stage I was still running the farm by myself – no employees. Surgery was penciled in with a good neurosurgeon here in Christchurch. It did not go too well – he was hoping to remove it but after opening me up, he found a very swollen, encrusted tumour. He was wary of going too far for fear of turning me in to a quadriplegic. Quick biopsy suggested astrocytoma, and he just partially debulked it and sewed me up again. The following weeks were absolute hell, I had no idea that I would go from being so fit and healthy to having trouble even walking. I was sent off for 6 weeks of radiation treatment to try and slow tumour growth.

All during this time the farm work had to be done. Family and neighbours helped, but the necessity of work was actually a good part of helping me to recover – wallowing around in self pity was not an option. Over the next year or two I made a partial recovery but then started going downhill again. At this stage we sent MRI’s and tissue samples to the Mayo Clinic for another look – they suggested that is was a subependymoma, not astrocytoma. The good news was that this is a very slow growing benign tumour. The bad news was that I was radiated for no reason – it was a waste of time, and potentially harmful in the long term for no benefit.

With the rediagnosis, the surgeon was happy to reoperate. I was on the way to a wheelchair anyway, so there wasn’t much to lose. In 1998 I had my second surgery, where over 90% was removed. The remaining part has not changed in size so far, it is so slow growing we hope it won’t be a problem for many years. I came out of hospital walking shakily with a cane, but happy to be alive.

I have learnt a lot of patience with how slow progress is. The constant burning pain that drove me nuts for 2 or 3 years slowly subsided. I tossed away the cane after a couple of months. Most function returned except for mild paralysis on my left side. I walk with a mild limp and my left hand is not much use. I did have two tendon transfer surgeries on my left arm to give me a partial grip, which has been a help.

Life changing experience: In 2002 I decided there must be more to life than being in a physical job with a battered body. Land prices had moved to the point where we built up good equity so we decided to have a complete change of lifestyle and sold the farm. I wasn’t sure what I was going to do, but started playing with my childhood interest of photography, to turn it in to a source of income. I had also been interested in computing, so spent 2004 as a full time student, completing a Grad Dip in Applied Computing. I loved the study, and was pleased that I could keep up with all the young kids in my classes!

But at the end of the year, I decided while I enjoy working with computers I didn’t like it enough to want to spend all day programming. So I went back to the photography angle, and am very happy with the mix I have now.

Many people who have been through a big trauma think it changes them for good. I can relate to that. At 34 I was very stressed and overworked but felt bullet-proof. Now, at 45, I am a lot more relaxed and try to enjoy life more – I know life is finite and I also know the things that are important and things that aren’t. I have my body back in to useful shape, thanks to two very special people. I have a massage every month and a PT session every two weeks. I try to get to the gym 3 times a week as well. I have to drag myself there sometimes but if I miss a week or two, my body starts seizing up again. “Use it or lose it” is true.

Now and then I miss my old body. I get very tuned in to people’s reactions when they see my unsteady gait – I have been mistaken for just being a drunk more than once. Sometimes I have to push myself to get in to social situations because I don’t want to deal with the looks. But most of the time I just feel very content. I have a great wife and children, a nice small group of friends I feel comfortable with, and I’m busy working at something I enjoy. Things could be a lot worse!

Cher’s 2 cents worth:

What has amazed me through everything my husband has gone through is that I appreciate his depth of character. He has not once moaned or complained, about anything, ever. We were frightened and talked about things on many occasions but almost always, he was the strong one. I remember before the first surgery, the surgeon told him the odds were reasonably high he would wake up on a ventilator or possibly not wake up at all. It scared me. I know Bill was scared too, but he knew what he had to do to have a chance. I tried to be strong and felt full of faith and courage in my heart, but I couldn’t keep the silent tears from streaming down, so he comforted ME.

A year after the surgery, at a check-up, the surgeon asked him if he was back to work yet. We just looked at each other in amazement, as just 2 months after the surgery Bill had mastered the climb up into the combine machine so he could do our harvest and he had been working since then. I don’t think he ever considered alternative options.

We try to remember the lessons we’ve learned and continue learning from this battle. We know that it is important to make each day count and appreciate all we have. After we sold our farm and moved to a small town, Bill, in his down to earth way, set about starting a new career.

Through all of this he has always remained my best friend in the truest sense of the term, and I can hardly begin to describe how he is with our three boys, just always so “available” to us in every way that really counts.