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World Sight Day: Philip & Tanya's Story

Imagine living a happy normal life, and within hours you become completely blind and lose your entire memory. This is Philip and Tanya’s story to raise awareness for World Sight Day Australia. What caused Phil’s blindness? How can blindness be prevented? What research is being done to help people regain their sight? By sharing Philip and Tanya’s story, it gives not only them a chance to tell people their story so we can better understand, but it also helps asks these questions that will hopefully one day have valid solutions.

World Sight Day is an annual day of awareness to focus global attention on blindness and vision impairment. Their vision is to eliminate preventable blindness and vision loss.

“It happened on Saturday 18th April 2015, we went to our son’s birthday barbecue. The whole family was together and everything was completely normal. We ate, we drank, and had a good time. We got home later that night, watched the footy, and watched a movie. At 12.30, we went to bed and said good night. At 1:30am Phil collapsed. He was breathing funny, was foaming at mouth, and had blood coming from his nose. I immediately called for an ambulance and as soon as they got here, there was no response from Phil. They immediately started running tests, and rushed him to the Royal Adelaide Hospital. Later the next day, we found out what had happened and he had had not one, but six strokes. The doctors could not believe he was still alive. But it wasn’t until day six when he started to make a reaction… and we realised he was completely paralysed down one side. At this stage, we all thought that he could see because his sister would come and visit and he looked straight at her, same with his best mate, “Phil, Doug’s here!” and he’d look straight at him too. We had no idea…” says Tanya.

“On the tenth day, when I was organising rehab for him, the professor of the stroke ward told us that there was “no hope for this one” and that he would have to go to nursing home, never to return home. I was then asked to make a choice, and that was whether or not I wanted him to live like that and if I should turn everything off. I couldn’t deal with that pressure. Not with our wedding anniversary coming up and our kid’s birthdays. I asked for more time to think about it.”

“On the day of our wedding anniversary, the family went to see Philip in hospital. The mood was gloomy until my mum shouted, “HE’S MOVING!”. I said “Don’t be ridiculous, he’s paralized.” Then we saw his toe move. We all were practically jumping up and down and shouting “Move, move, move!” By 6pm that evening, he could bend his leg right up, and move his fingers. We told Doctor Rob, and he jokingly said that “he’ll be at the pub before we know it!” A couple of days later, the professor came in and I was excited to tell him that Philip could move to prove him wrong. He said, “You do realise he’s paralised?” We showed him, and definitely proved him wrong. Phil’s sister also said to Philip whilst in hospital, “You need to come back to us, I’ve lost my husband, I’ve got four kids, and I don’t want to lose my brother.” I believe that this happened because of the power of family, we were there every day. This has all brought us closer together.”

“Soon after, Philip started to regain feeling in his left hand side and from then things started to improve. He went to Hampstead for an operation. I heard “code blue”, which at this stage I didn’t know what this mean but it meant he stopped breathing during surgery and I think it’s been since then that he hasn’t been able to see, but it’s hard to say, even after so many tests, they’ve now come to a halt. Philip was at the Royal Adelaide Hospital for five weeks, followed by four months at Hampstead Rehabilitation Centre before he returned home. The professor was so wrong and it make us so angry that he’d continue to say that, “Philip has no hope.” Old school medicine, with old school thoughts. There is always hope, and we still hold onto it to this everyday.Over two years have passed and we now know that he has cortical blindness which was ultimately caused from the brain stem stroke. Alongside of completely losing his sight, Philip also lost his entire memory.

 

"When I regained consciousness in hospital, I didn’t know what was going on. My first thought was that we must be here visiting someone in hospital, then I realised ‘oh wait, everyone’s here to see me!’”. Says Philip.

 

Tanya continued, “Philip previously worked at Holden as a fork-lift driver and building cars in the showroom. He was stressing about Holden closing, and had just been told that they will not continue after 2018. Philip always worried, “How am I going to afford everything and support the family? Who’s going to employ me in my 50s?”. We were in a horrific car accident a couple of years before Phil had the strokes and I badly hurt my shoulders and neck which put me out of work. He had a lot of stress and his blood pressure was high, which I wasn’t aware of. On top of this, his diabetes was creeping up. I think his strokes were caused by a combination of everything maybe. The doctors did tests to find out where the blood clot came from, and they found out he had a hole in his heart. Still to this day, his doctors call him the “Mystery Man” because they still can’t find any clear evidence as to why he had these strokes. However, with the stress going on at home and with work, Philip was drinking a little more than usual, we weren’t eating as well as we could have been, and his sugar levels were too high. He then went on medication to control his diabetes and then everything was ok. He was on insulin to manage his diabetes a month after his strokes for about a year. We were really trying to be healthy, but it couldn’t help the fact that his whole life was practically gone. He doesn’t remember us getting married, he doesn’t remember our children being born. “What children?” he would ask. One day, after talking about our children, someone asked him what their names were, and all of a sudden some of his memories started to come back.”         

“I’ve never been to school as far as my memory goes. I only remember things from the stories my wife and kids have told me these last couple of years. They’ll describe camping holidays we’ve been on, like desert races, hiking in the Flinders Ranges, but I can’t picture anything.” Says Philip

 

How do you get the support you need?

“A SACARE support worker comes in every morning to take care of Phil’s personal needs such as taking a shower, getting dressed, and basic exercise programs. On Wednesday’s they’ll stay a bit longer to give me the opportunity to go out and about, shopping etc and take care of Phil whilst I’m away. They help not only Phil, but the entire family. My daughter, who’s still in high school helps me tremendously too. We’ve all got a brand new life now, and we’re learning to live it.”

“We’re grateful for Brain Injury SA’s Springboard program. Not only did they help Phil with mobility and movement, they continue to help him with simple duties, like making breakfast and a cup of tea. Phil was never good in the kitchen, but he was great on the barbecue like any true Aussie man! For Phil learning to move around again as not only someone recovering from a stroke but as a blind man, there is still a lot more learning to be done, trust and self-confidence. It’s hard, but he has come so far now it’s been quite amazing to see. Some people who have suffered from strokes, have lost movement in the whole side of body. Phil’s one of the lucky ones.”

 

"Grabbing things with my left hand is difficult. I can’t sign anymore. I can’t get up and do whatever I want, whenever I want, I can only walk for about five to ten minutes.” Philip

 

“Whilst Phil luckily didn’t need to learn to talk again, he knows what he wants to say but it’s hard for him to find the word.But he always perseveres and tries to find the right word. One of his biggest issues was learning to eat again because he lost his swallowing motion.”

“I worry about what will happen to me. You never know. I would like Philip to learn to do as much as possible and SACARE support workers are great at teaching him to look after himself, like how to take a shower alone or to fill up his water.”

Philip, “Because it’s only the brain I could wake up tomorrow and have vision, but the longer it’s been the less likely of me regaining it. I still have hope. I know someone who was blind for two years, and he got his vision back.He was starting to see fuzzy colours, and then the next morning, he could see. If that professor told me I would never return home again, and never be able to walk again… let’s hope he was also wrong about not being able to see again!”

 

What else has been tough?

“Coping with not only our new life, but unexpected family issues that happen. My auntie got hit by a car, Phil’s sister got stage four lung cancer, his father died of leukaemia, and his mother is now in a nursing home. I am so tired. I long for holidays.”

 

Are you able to go on holidays?

“We still go away camping in the caravan as often as possible, but this time, I’m the driver and the one in control, I’ve had a lot to learn! It must be hard for Philip to not be able to do what he was able to. You don’t appreciate a person until they’re not able to do things.”

 

Philip says with a smirk, “The last trip we went on I was sitting in the passenger seat whilst Tanya was packing up, and this couple came up to us and asked ‘how come he’s just sitting in the car and not helping?’” He laughs, “These types of things happen all the time!”

 

“At the end of the year, we’re going on a holiday to Vietnam and Singapore, Phil’s nephew is getting married and he’s going to be the head of the family. It will be the first time flying, I just hope the whole family helps as they’ve promised to.”

“Last year I went to Thailand with my daughter without Philip. It was needed and we thankfully were able to have an SACARE support worker stay with Phil 24/7 whilst we were away.”

 

Would Phil ever need a guide dog?

“Well, we have Buddy the {adorable} 9 year old Maltese cross Papillion who won’t leave Phil’s side. But I can’t see Philip going out on his own in the street and community. Only those who are incredibly independent usually have a guide dog.” 

 

What’s one of your biggest frustrations?

“The lack of wheelchair parks. Of course, I never noticed it before, until Phil and I have needed them! Our first year when Philip returned home, it was Christmas holidays and there was nothing. So, I didn’t even both going to the shops. This one time, I went to pull into a park and a woman pulled in before me and she came out with a pram and twins. I got so angry! People just don’t think. Back in my day when I had three little kids, there was no such thing as pram parks, and I didn’t even miss them.

 

If one in five people have a disability in Australia, then shouldn’t 1/5 of car parks be for people with disability?!”

 

“Today, we take each day as it is. We have to look at “the now”, we can’t look back at old life. This is the new life now and we do what we can. Life is too short to be worrying about silly little things. Families argue and nag over pointless issues. Phil’s things. Our family is knitted together more than ever.” As told by Tanya, Phil’s incredibly loving wife.

 

(Picture description: Philip and Tanya outside their family home and caravan. Buddy the white dog is sitting on Phil's lap.)

 


To learn more about Brain Injury SA’s Springboard program click here.

To learn more about SACARE’s in-home care and support services click here.

If you and your family are going through something similar and in need of a holiday, SACARE’s houseboat is completely wheelchair accessible and can include 24-hour care. Click here for more details.

If you’d like to speak up about issues such as the lack of disabled carparks in Adelaide, take action and join the Dignity Party.

More information on World Sight Day can be found here.  

 

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