Diagnosed with larynx cancer, Carolyn Price (gohomelaker) lost her ability to speak. But with a penchant for writing and a nose for news, she became one of the most active citizen journalists on DigitalJournal.com. This is her story.
It’s unusual to have a conversation with someone in complete silence. Carolyn Price is quite possibly one of the most wonderfully opinionated people I’ve ever met, but she can’t speak. After a long bout with cancer, she had her larynx removed and now has no voice to air those opinions. She punctuates her sentences with cunning smiles, a quick wave of her pen in the air, and a slap on her knee as she laughs.
Sitting in Yonge-Dundas Square in downtown Toronto, 48-year-old Price stares into the fish-tank-blue sky, then scribbles fiercely on the pad of paper she carries with her to “talk” to people. She goes through 25 pads of paper a month.
“Just because you can’t speak, [people assume] you can’t hear, so somehow you are stupid,” she writes to me, nodding her head to confirm I understand before returning to her notepad. “There’s a movie where a guy yells ‘I am not a monster.’ Well. I am not disabled.”
The “handicap” moniker is not something she embraces, and she fidgets in frustration when I use it. She admits it’s her new reality, but she still sees herself as the same person.
Her new reality is a difficult one for a speaking person like myself to grasp at first. With my laptop in hand, I type questions and Price replies in her notebook. Initially, it feels silly for me to remain silent despite the fact that I am able to speak. But in the interest of trying to see things from a different perspective, I keep to my plan and stay mum.
“Sympathy is something that should be given to those who are truly disadvantaged or have been through something that is truly tragic,” says Carolyn Price. – Photo by Chris Hogg
Price doesn’t need a physical voice to be charming. She is hilarious, incredibly blunt, and animated. She laughs hysterically while we talk, but nothing comes out; she uses hand gestures and facial expressions for clarity; and she mouths words as though she were talking and I could hear her. Strangely, I could.
But as soon as you express any sympathy or feeling of being sorry for her, she’ll look you right in the eyes and tell you to get over it.
“To me, sympathy is something that should be given to those who are truly disadvantaged or have been through something that is truly tragic,” she tells me. “I am neither of those — I just have cancer. Sure, it is a life threatening disease and I need all the medical help I can get, but I do not need sympathy nor do I need help.”
It doesn’t take long to realize Price is no bullshitter. Anyone else in her position would be totally devastated, but Price is incredibly strong. She’s genuinely happy.
“I can walk and cook and clean and drive myself wherever,” she writes to me. “I can make informed decisions about my investments and can do most of my banking and bill-paying jobs with relative ease.”
Price has been a member of Digital Journal’s citizen journalist community since November 2006. With no experience in citizen media, she sought out Digital Journal to “get her voice back,” and in doing so has become one of the most respected members on the site.
Dealing With Cancer
Price’s life came to a halt on March 1, 2005. After a few weeks of dealing with a sore throat and swollen glands, she went to see a specialist in Toronto.
Price recalls Dr. Irish entering the room wearing scrubs and “those silly duck shoes,” before examining her. After one look at her throat, Irish looked at Price and told her she had cancer.
In May 2005, Carolyn Price underwent six hours of surgery after doctors learned she had cancer. – Photo by Chris Hogg
“When someone tells you [that] you have cancer, at first it is like getting hit in the head with a baseball bat,” she admits. “It stuns and silences you to the point where you seem to live all alone with your thoughts, almost within your own bubble of nothingness. Then the emotions hit you — the oh my God, I am going to die stuff. That was the worst period for me.”
A lump at the base of her tongue had spread across her throat, causing her lymph nodes to swell. Irish offered to perform a biopsy on the spot to confirm his suspicions. “I went for the right-there-and-then option,” she writes to me, “[which was] quite possibly the most misguided idea of my life.”
Doctors performed the biopsy that sparked intense bleeding, then gave her 10 minutes to recuperate so they could do it again. “Less than 45 minutes earlier, I was seeing a specialist because I had swollen glands,” she writes. “Then there I was having a biopsy on a cancerous growth taken by the chief of oncology surgery for the University Health Network.” Doctors then confirmed their suspicions — Price knew her life would never be the same.
She was faced with the decision to go through radiation or surgery. On her doctors’ advice, she decided to have surgeons remove her lymph glands, muscles, jugular and any other veins or tissue they felt necessary, then blast her tumour with radiation.
In May 2005, she underwent six hours of surgery and then took a month to recuperate. When first diagnosed, Price says her prospects were less than 50 per cent survival from the radiation and about 20 to 30 per cent of surviving the surgery to remove the base of the tongue. “I didn’t really think too much of what would happen in the future, mostly it was about making it through the operation.”
But before she could recover fully, Price’s doctor dropped another bombshell: they discovered more cancer, this time on her larynx. In November 2006 she underwent a partial laryngectomy to remove her larynx and half of her vocal fold, and a trachea tube was inserted to help her breathe and eat.
“People who suffer from head and neck cancers, in the majority, die of starvation rather than from the cancer,” she writes. “That was a very startling revelation to me.”
Over the next five or six months, Price gained back about 20 lbs., her ability to eat progressed and she regained her ability to speak, with a tendency to have words squeak out (earning her the nickname “the squeaker” from family and friends).
But the joy of speech didn’t last long. Scar tissue formed around her larynx and hardened to the point where it couldn’t vibrate to create a “voice,” leaving her completely unable to speak.
Family Matters
With no voice, Price’s life was flipped on its head, forcing her to re-evaluate even the simplest tasks. She arranged for her doctors, investment advisors, and bankers, to communicate with her through email.
A self-proclaimed workaholic for most of her life, Price worked for a consulting firm specializing in developing warranty programs for businesses like automotive manufacturing clients. Before retiring on the advice of her doctors, she worked seven days a week.
As a very busy worker who suddenly experienced a major slow-down, she picked up hobbies like browsing the Internet, knitting and baking.
The whole ordeal took a toll on her family. Her husband Danny was forced to take care of everything for the family, and her 21-year-old son began to feel frustrated. “I’m not sure if he’s angry at me or at the return of the cancer,” she writes. “However, he’s the one who does a lot more of the taking-care-of stuff for me.”
Her mother, Marion Hall, also took the news hard, after being hopeful that Price’s first bout with radiation would curb future pain and problems.
Hall admits it was a big blow when she found her daughter had cancer for a second time and she’s still adjusting to the fact she can’t speak. She says her daughter’s bravery and strength is what puts her at ease. And after Price became gohomelaker on DigitalJournal.com, Hall wasn’t surprised — her daughter was always proud of voicing strong opinions.
Carolyn Price spends her recreation time hiking, fishing and knitting in addition to her role as a citizen journalist. – Photo by Chris Hogg
“It’s a terrible experience to argue with her,” laughs Hall. “She always knows everything and it’s hard to argue with her and win. I joke that at least she can’t talk now — it makes it easier for me to win a few rounds.”
Relationships with Price’s friends also changed. Her trach tube became distracting, with some of her friends being fascinated by it while others backed off, unable to look her in the eye.
“When people find out that you can’t speak they do another thing that is really funny,” she writes. “They start speaking very slowly, over-enunciating and using hand gestures, like you can’t speak so you probably can’t hear. And you are probably retarded as well. It can sometimes be funny and sometimes totally depressing.”
Price says things like eating can be difficult, since she must chew food to a pulp and drink lots of water in order to swallow it. “I crave food like you wouldn’t believe,” she writes. “I also have a feeding tube in my stomach otherwise I’d be dead. I ‘eat’ cans of supplemented stuff supplied by you, the taxpayer,” she writes, then bursts out in silent laughter.
How Citizen Journalism Changed Her Life
Whether focusing on China’s vitamin market, dangerous sex toys or NFL indictments, Price has penned more than 1,300 articles on Digital Journal. Unafraid of sharing her beliefs, she calls B.S. when she sees it. She brings refreshing discussion to almost every news topic, and she displays a playful optimism about even the bleakest issues.
It’s this voice and these ideas that led her to pursue citizen journalism as a venue to express herself.
“I found myself looking forward to getting on DJ,” she admits, “and seeing who had contributed what and who was commenting, where the controversies were and where the fun was.”
Price says the community is what keeps her coming back. She believes the site can be engrossingly dangerous to anyone who has an addictive personality — hours can pass without realizing you haven’t left your computer chair.
“I have, for some strange reason, developed this extreme fondness for total strangers and I have absolutely no idea why,” she writes. “It is the strangest thing and totally not something that I would even think I was capable of doing. I love the diversity of opinions, even those I totally disagree with, that are present here on DJ.”
Carolyn Price says her favourite part of being a member of DigitaJournal.com is interacting with other members in the community. – Photo by Chris Hogg
The Internet also gave Price a place to call home during her recovery process, a forum where she isn’t judged.
“With some people, it is really hard to try to communicate with them, they don’t really want to look at you and see what it is that I’ve ‘become’,” she writes.
Price says being online has been a positive experience for her because people judge her for what she “says” in the community, rather than make false assumptions about her based solely on the fact she has a tube in her neck.
“I would like people to see me as the same person I was before, yet I know that is completely impossible,” she writes. “I guess I would like people to see a woman who has had some medical problems but is trying to deal with them and wants to be treated the same as everyone else.”
Price ends our discussion in a poetic fashion, summing up her life in a few simple words.
“My voice is now my hands, so this site has provided me with a forum for communication,” she writes. “The joy of Digital Journal is that it gave me my voice back…and DJ has been my lifeline.”
Check out other citizen journalist profiles:
Sarawanan R. (aka saran81kid91) (scroll down 1/2 page)
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This article is part of our ongoing series of Citizen Journalist profiles. If you have a story to tell, contact me.
