Rhian's Story: Mind Over Water

Rhian's Story: Mind Over Water

It’s hard not to be exhausted at the mere thought of a 27-kilometre swim across Lake Erie, but that won’t stop Burlington, Ontario’s Rhian Short, 28, from completing her amazing 11-hour journey on August 29, 2015.

What makes Rhian’s feat even more incredible is that she’s a survivor of Intracranial Hypertension – a neurological disorder that closely mirrors the serious symptoms and effects of a brain tumour. That’s just one of the reasons why Rhian has pledged her swim in support of Brain Tumour Foundation of Canada.  

Ten years ago, Rhian began to have extreme headaches – even at times becoming bedridden – but she chalked the pain up to the stress of being a new university student. Within three years of the headaches starting, though, Rhian would lose dexterity in her right hand and struggle with ongoing flashes of light across her vision. “That’s when I knew something was really wrong,” she explains. 
 
After years of searching for an answer, dozens of neurological and physical tests, and several spinal taps, it was a 2008 trip to the optometrist that would uncover the reason for Rhian’s severely declining health. It was the swelling of Rhian’s optic nerve that caught her eye doctor’s attention. “Turns out my body was producing cerebrospinal fluid at an incredibly high rate and the volume of it was crushing parts of my brain.” 
 
For a short time, medication controlled the pressure building in Rhian’s skull, but one morning in December 2008, she woke up with her vision almost completely gone and the odd sensations in her right hand were back. Rushed for emergency treatment to a hospital in Buffalo, New York, Rhian would return to Ontario once her health stabilized and surgery could be considered to treat her intracranial pressure. “Even though I was scared for my operation,” recalls Rhian, looking back on the January 2009 surgery, “I was excited for the possibility that I would finally feel better.” 
 
Rhian (left) with her pacer, SarahA ventriculoperitoneal shunt, or VP shunt, now reaches from the back of Rhian’s head to her abdomen, with a valve to control the release of cerebrospinal fluid and manage the pressure that was damaging her brain and eyes. Fortunately, in the over five years since Rhian had the shunt inserted, she’s regained almost all of her eyesight and has turned her attention to swimming as a way to cope with the pain and vertigo that still regularly impacts her due to her neurological disorder. 
 
Reflecting on the past decade, Rhian says it took a couple of years to find herself again after her diagnosis and surgery. “My eyesight wasn’t improving at the rate I wanted,” she explains, “and if I’m honest, I was using my condition to hide from life.” One of the things Rhian says helped get her through these tough times was talking to other people who had experiences similar to hers. “They helped me find the strength when I didn’t have it and [talking] helped give me hope when my condition wasn’t under control. I understand the loss of self that can come with a diagnosis and the catharsis felt through talking about it.” 
 
Today, the 28-year-old avid swimmer is putting her talents to the test and plans to complete a 27-kilometre open water swim across Lake Erie – the first person with a VP shunt to do so. Not only will Rhian fundraise for Brain Tumour Foundation of Canada with her swim, but she wants to use the opportunity to show others with neurological disorders that they, too, can find their purpose and achieve goals to make a difference in their own lives. For Rhian, “This is swim is another step in my journey to live life fully and in spite of my illness. It no longer controls me or defines who I am.” 

Update from Rhian: August 25, 2015

"So I have some bad news and some good news. We unfortunately have to postpone the swim this year as I have been ill for the past few weeks and I no longer have medical clearance to swim. Swimming 27km is quite stressful on the body and you need to be in the best health possible in order to be safe. By the time I recover the lake will be too cold. It has taken me a couple of days to come to terms with not being able to swim this year and I am really disappointed but I think an extra year of training can only help. The good news is that we have already set a date for next year - July 23, 2016. I am already planning the training schedule for this winter.

I would like to thank everyone for their support, this has been quite a journey so far. I would also like to thank everyone that has donated. We will be continuing to fundraise through the winter and we will be planning some fun fundraising events. I am still hoping we can meet our $50,000 goal by next years swim date. I will continue to post training updates. Thank you all again".

Update from Rhian: 2016

"Surgery Round 2 - Well this years open water swimming season for me is over before it even started. Last Thursday I had to undergo another surgery. Thankfully not on my shunt but on my abdomen... So no heavy duty exercise for several months while my diaphragm heals. I would like to thank everyone's support in this event and I promise to come back stronger than ever next year."
 
Thank you Rhian, for sharing your story and for fundraising in such a unique manner for Brain Tumour Foundation of Canada. The movement to end brain tumours is stronger because of you!

 

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Story posted: July 2015


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