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HomemistoryLeft in the Dark The Story of Laura

Left in the Dark The Story of Laura

The story of Laura Lawson – a promising artist from the United States who was diagnosed with the incurable genetic disorder retinitis pigmentosa – is an ‘epic fail’ for the eye care profession. Seeking help for poor peripheral vision she was ‘left in the dark, both figuratively and literally’ by ignorant and indifferent eye health practitioners. But it doesn’t happen here… right?

Laura Lawson was about to start art school, when she learned that her eyes had been “programmed to start dying at a certain time and at a certain rate” since the day she was born.

Laura has retinitis pigmentosa, a rare genetic disorder that will ultimately rob her of her sight completely. There is no cure. There is no treatment. In her case, there was also no warning, as there was no family history of the disease.

Devastating news for anyone… perhaps more so for an artist, whose passion; whose raison d’être is to interpret the way she sees the world through a paint brush and the lens of a camera.

Of course, the very first thing I did was exactly what she told me not to do… Wikipedia told me I was going blind

Laura’s journey though diagnosis, and her acceptance of her “new normal” is revealed in her recently published ebook, Believing is Seeing, a powerful portrait of overcoming grief and finding a new vision for life; one that is not based on sight. It is an intimate and honest account – and damning of the eye health profession, betraying a lack of knowledge and of empathy.

What’s even more alarming is that it is not a one-off aberration – and cannot be brushed aside as something that ‘could only happen in the US’.

Vision Australia said the lack of information, empathy and support provided to Laura in her journey to diagnosis was “very common”.

“We (Vision Australia) should be part of the continuum of care. Patients need to be referred earlier to us as part of the first diagnosis of (degenerative eye) disease,” Vision Australia spokeswoman, Marion Rivers said.

“Many (eye health professionals) don’t know about us, don’t know we exist anymore or think ‘my client isn’t blind enough’ to refer to Vision Australia,” Mrs. Rivers said.

Don’t Google It

Laura had worn glasses and contact lenses for years. She’d even worked as an optical assistant and had helped an optometrist open her high-end practice.

“I worked for her for almost a year prior to my diagnosis. She practised her ‘state-of-the-art’ tests on me, using all kinds of fancy equipment, including retinal imaging. In looking at many high quality photos of my retina, she never once picked up on the clumped pigment deposits,” Laura told mivision.

“She essentially gave me dozens of partial eye exams, none of which actually located a very real medical problem that I was completely clueless to.”

When Laura first became aware of her poor peripheral vision at the age of 22, it was somewhat of a joke among her friends. There’d be laughter at her inability to see an object until it was directly in front of her.

“I viewed it as a quirk, a superficial flaw on the same level as having crooked teeth or a lot of freckles… certainly nothing to be worried about. I’m astounded at my own ignorance.”

Convinced by her father that it could be indicative of something serious, Laura visited an optometrist who told her she had the “worst peripheral vision of any young person I’ve ever seen”.

“She tried to hide it, but I caught the alarm written all over her face…”

She told Laura she suspected retinitis pigmentosa, and warned her “not to Google it”.

“She was very hesitant to say anything definitive, which of course is understandable. But for her to not provide me with any information about RP at all, and specifically instruct me not to look it up on the internet, is completely unfathomable.

“Of course, the very first thing I did was exactly what she told me not to do… Wikipedia told me I was going blind.”

Laura said she was far more frustrated by the ophthalmologist she saw the following week.

“He literally answered NONE of my questions, just referred me to (another specialist ophthalmologist, Dr. Jacque Duncan), who I had to wait four months to meet! All he said was that my pigment was clumping – I thought pigment had to do with colour, so I thought he meant the colour of my iris was clumping.

“It was very confusing and he seemed irritated when I asked him to clarify, which he didn’t do… providing crucial information as to what the disease is would have been so helpful. It seems common sense, but it wasn’t. Ninety-nine per cent of what I know about my own eye disease I have learned from the internet.”

But the inability of the eye health profession to empathise with Laura didn’t stop there. While Dr. Duncan was “friendly and exponentially knowledgeable”, the confirmation of the diagnosis took some time and was eventually delivered in a rather abrupt phone call.

“… I was boarding a bus… Dr. Duncan’s advice? ‘Wear sunglasses outside.’ That was it. She urged me to return to her office in a few years…”

Laura said Dr. Duncan later apologised for the way she handled the official diagnosis.

“One doesn’t usually think of optometrists and ophthalmologists needing bedside manner, but I very much think learning some compassion and empathy for patients with debilitating eye conditions like mine would go a long way. I feel very strongly about this. The doctor-to-patient relationship is of the utmost importance. Trust must be built. There is no one in my life that quite understands RP like my doctor so, of course, as a human being, I am looking for a little empathy from her.

“She is very professional and businesslike, and she truly has devoted her life to finding a cure. Perhaps I am expecting too much. Because RP is such a huge part of my life, I want to connect with others who ‘get’ it. She is an amazing researcher, but she did choose to make RP the central focus of her study. I didn’t choose this. I didn’t ask for it. I very much resented the eye health care industry in general during that time, but I didn’t let my righteous anger morph into bitterness. I moved on. I had to.”

Laura said many eye health professionals don’t feel comfortable talking to their patients about the “emotional and mental implications that come along with transitioning to a new normal like mine”.

“That’s not necessarily a problem in and of itself, but they need to be armed with proper and helpful resources for each specific patient. Having a bit of empathy and personality – just being there and allowing them to cry for a moment – would work wonders.”

The New Normal

Laura describes the working through of her grief and her metamorphosis to a “new normal” as “the most painful and simultaneously the most beautiful thing I have ever undergone”.

“Yes, there were moments where I danced in the sunshine, hopeful clouds whirling around me, but there were a great deal more where I locked myself in my bedroom, terrified to face my life, but also unwilling to give up.”

Relying heavily on a strong Christian faith, in true Gen Y style, Laura also literally built a global support network via social media – opening a twitter account (@retpigmentosa), starting a blog (lauralawsonart.com/blog), creating an active Facebook profile, and writing numerous magazine articles.

But while she “found community”, and some healing, through relationships developed on the internet, she “felt more alone than ever”.

“I put too much focus on… the role of RP advocate, and didn’t even know how to tell my best friends I was hurting,” Laura said.

“Art became such a deep reminder of RP that I shied away from it for a long time. To process the disease through creating art seems obvious, but was something I felt was too painful to approach.

“Retinitis pigmentosa had sucked all joy out of pursuing a career in art in a matter of mere months… I couldn’t help but think that if only I hadn’t been so passionate about art, this diagnosis would not have cut so deeply,” Laura recalls.

For Laura, one of the things that helped her find her way back was photography, and specifically Instagram, where she has become one of the most popular identities amassing almost 150,000 ‘followers’ (@lauralawson).

“Slowly but surely, I worked up the courage to call myself an artist again… RP was no longer a reasonable excuse to not pursue my dreams. I have always been an artist and I always will be. Even if I do go completely blind, I am still going to paint.”

New Calling

“I’d like to say my disease doesn’t define me, but let’s just acknowledge the elephant in the room. It does,” Laura writes.

Laura believes that by documenting her own pain and journey to healing, she will help others – not just those struggling with blindness, but with grief or loss of any kind.

She’s also passionate about helping eye care professionals to understand what it is like to be in the patient’s chair.

“I’m not sure what kind of resources there are, if any, in helping eye health professionals inform themselves on the emotional aspects of what they’re doing and how it affects their patients… that’s partly why I wrote my book.

“I want eye doctors to read it and think about what it’s like to be on the other side. To remember why they (hopefully) went into the profession in the first place: to help people.

“For some doctors, money becomes their primary objective and motivator. For others, the science seems to take precedence over the person. There is so much more to me than this disease and my eyes that battle it.”

Treat the Man, Not the Disease

Rolf Geerlings sighs as aspects of Laura Lawson’s experience are relayed to him, agreeing that it is all too close to home.

Thirteen years ago, Rolf – a pastry chef who specialised in making intricate wedding cakes – went to the optometrist because he thought he needed glasses, taking his partner along with him to help choose his frames.

His consultation was brief, and within 15 minutes he was standing outside the optometrist’s outlet, emotionally shattered and wondering what on earth had just happened.

“I still remember that her exact words were: ‘Oh dear’.”

The optometrist told Rolf he had a serious problem, but that she wasn’t qualified to make a diagnosis.

“I didn’t know what it was about. I didn’t know what she could see.”

Rolf said he went to an ophthalmologist who diagnosed his eye condition, and referred him to a second specialist, to confirm the diagnosis.

Rolf said he was given a lot of information about his particular combination of eye diseases, and their progression, using “big and wonderful words” that were difficult for him to understand.

“They were absolutely fantastic at treating the disease, but they weren’t treating me as a person. I felt like a number.

“Here’s me, a big strong man, and it is the most scariest thing I’ve ever had to face. It is the most scariest thing – you don’t really understand what is going on and what is being said.

“At no stage did anyone tell me about low vision assistance programs.”

Rolf’s vision quickly deteriorated and during the next few years, he lost the ability to work.

He “sat on the couch” for a couple of years, before gathering the courage to go into Centrelink, with thoughts of perhaps finding an alternative job.

When told by Centrelink that he should just go home and ‘take it easy’ on the blind pension, Rolf had a “breakdown”. “I sat on the floor in the Centrelink office in tears. It was just too much for me.”

By chance, another Centrelink staff member, who had a brother with visual impairment, overheard the commotion and advised Rolf to call Vision Australia.

“Within half an hour, I went from utter despair to having some hope.”

Now blind, Rolf speaks affectionately of his “wonderful, amazing” seeing eye dog, Echo, and works almost full time on staff with Vision Australia as a Volunteer Coordinator.

Rolf makes a point of saying that in the past few years he has noticed a tremendous improvement in the way eye health professionals are treating the ‘whole’ patient, and in referring patients to low vision assistance services.

But for Rolf, if it wasn’t for an embarrassing emotional meltdown in a Centrelink office, and a chance encounter with a stranger, he could still be just sitting on the couch.

Early Support Available

After hearing Laura’s story, Vision Australia’s Marion Rivers is quick to confirm that the lack of empathy she encountered repeats itself all too frequently.

Mrs. Rivers, an orthoptist who is a Team Manager for Client Services in Sydney, said while some ophthalmologists were referring patients to Vision Australia at the time of diagnosis of degenerative eye disease, it wasn’t happening often enough.

“We should be seen as part of the continuum of care,” Mrs. Rivers said.

She said Laura’s diagnosis was “catastrophic” and early support would have been very important in helping her to realise that she could still live a useful and productive life.

Mrs. Rivers said while some people had questions and took up support services from day one, others just needed early information and would come back for help when they
were ready.

“We try to give a menu of thing to choose from – it is really what the client wants.”

She said it was important for patients and health care professionals to realise that Vision Australia was “not just about white canes and seeing eye dogs”, but was able to help with mainstream strategies and technologies that could make people more independent and drastically improve their quality of life.

Mrs. Rivers said there was “not enough referrals” to Vision Australia. “Optometrists probably rely on ophthalmologists to refer to us and they do, but want regular optometrists to refer patients to us as well.

She said many eye health professionals found it difficult to deliver bad news to people losing their sight, but it could be made easier if they were able to offer “that continuum of care”.

While Vision Australia has eligibility criteria, it does accept referrals for people with a diagnosis of a debilitating condition, she said.

“It is not too early to refer.”

Retinitis pigmentosa has its own volunteer support organisation in Australia – Retina Australia –
which distributes information on the disease and news on current research to its members.

Retina New South Wales spokeswoman Betty Ghent confirmed that the unhelpful attitudes of eye health professionals encountered by Laura Lawson were “common experience”.

But, in defence of eye health professionals, she said they were in the position of being “the devil if they do and the devil if they don’t”.

She said too much information at too early a stage was often even more alarming for patients than not enough. She said this was particularly true for those diagnosed with RP, as the progress of the disease was difficult to forecast.

In her own case, Mrs. Ghent said her mother was blinded by RP at the age of 40. When she herself was diagnosed she “went beserk”, thinking she would soon go blind, but still has “useful sight” 20 years later, at the age of 75.

Mrs. Ghent said there was often a “denial factor” of people with RP, saying many did not take up support services, because they didn’t want to identify as being blind or having low vision.

Vision Australia: [email protected] (AUS) 02 9739 1581

Retina Australia: www.retinaaustralia.com.au