The Internet is known for many things, but calm, thoughtful conversation of complex issues is not one of them. The distance between opinion and an insult aimed at a person is short.
That’s why, if given the chance, I would make all Internet users follow one rule: disagree without being disagreeable.
That rule, which I try to follow, once again came to mind as I read the story of Jessica Ainscough. Doctors diagnosed her with epithelioid sarcoma, a rare form of cancer. Her initial treatment was successful, but a year later, tumors returned.
At that point, doctors recommended amputating her shoulder and arm to remove the cancer. They offered different scenarios about her chances of survival following the amputation.
Ainscough ignored the recommendation. “I didn’t accept that my doctor’s ‘solution’ was the only course of action,” she wrote on her blog. “I decided that I would do everything in my power to thrive in life, in spite of the looming expiration date I’d been given.”
Her actions caught public attention. Some called her the “Wellness Warrior” because she chose to pursue homeopathic treatment; others criticized her choice.
Last month, Ainscough died, and some on the Internet did what those on the Internet are prone to do: They tactlessly shared their opinions. The nicest comment I read was that “as predicted,” Ainscough died of her untreated cancer. Another said that she was “dangerous.” Others were more brutal. Some of the words used to talk about Ainscough were uncalled for, no matter how much a person disagreed with her choices.
No matter how public we are, in the end, our path through life is a private one. Some people don’t believe in extraordinary measures. Others want every possible medical treatment. It’s not possible to know every person’s thought process and sharing such knowledge shouldn’t be required.
Defending her doesn’t mean I agree with Ainscough.
In my opinion, if you’re going to voluntarily pass up modern medicine for homeopathic alternatives, then you’re not trying to treat your disease. You’re choosing to find comfort in your final days.
There is certain courage in that choice, but that is lessened with heated discussion and debate led by those whose opinions are formed with no knowledge of the details that led to the decision. In Ainscough’s case, that’s particularly true because she proved me and all the haters wrong.
Ainscough beat the survival odds doctors gave her about how long she would live without the amputation. Despite her refusal of advanced medical treatment, she lived seven years after her initial diagnosis.
If you knew your choice was seven years of painful treatment spent fighting aggressive cancer before dying or enjoying every minute of the life you had left, which would you choose? If you say the answer is easy or simple, I question your honesty.
I mourn for Ainscough and still believe in receiving the best care available from modern medicine. But maybe her death can be a learning moment for those who choose to criticize her.
None of us has all the answers, not even those who offer hurtful opinions on the Internet.
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I have ES. It is not uncommon for ES patients to have long stretches of stability between what seems the inevitable recurrence of this disease regardless of the chosen conventional treatment path. For many, ES is a slow growing (albeit incredibly persistent and treatment-resistant cancer). It can take years before a patient’s next recurrence is detected so any claim that months or years of stability can be attributed to coffee enemas or even chemo would be a stretch. ES is so ridiculously rare that there is simply not enough sample population to even give one confidence in the efficacy of available treatments as a cure anyway. The issue some have had with the Jessica Ainscough story is that she attributed her months and years of stability to her alternative treatments. This may very well be what she believed was the case but it demonstrated a level of ignorance regarding the very nature of her disease. Her story is tragic on so many levels but in the end that was her choice to make. By doing so she may have enjoyed more quality of life than she would have had otherwise. Who knows. Unfortunately, she was – perhaps unwittingly – selling a bit of snake oil.