Another Look at Social Media and Medicine

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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March 18, 2011

I came across this article on cbc.ca and  found it really interesting. Although I do not have cancer and am not a medical patient, it illustrates what I was saying about the support social media can give you that traditional forms of communication or even email, cannot. AS the author states, social media is a great tool for preventing isolation and keeping people focused in medically challenging times which are often very emotional and confusing.  Its a good read and while it doesn't directly apply to my story, it is certainly relevant.~LH

My dad, his cancer and social media

Natasha Fatah on the healing power of online friends

On February 16, my father went into St. Michael's Hospital in Toronto for back pain and leg numbness and the doctors ended up finding a massive tumour on his spine.

They rushed him into emergency surgery. Now, a month later, he is still in hospital. He has been diagnosed with cancer and has lost control of his legs because of the damage caused by the tumour.

The regime for the next few months: getting tested, chemo, radiation and re-learning how to walk. It has been a challenging time for our family, as you might imagine. To my surprise, what is helping us through it has been the healing power of social media. You see, my father is Tarek Fatah, a controversial public figure to some people, the founder of the Muslim Canadian Congress, a secular Muslim organization that advocates for the separation of church and state.

He has been fighting militant Islam since his teen years in Pakistan.

He is also a respected author —his most recent book being The Jew is Not My Enemy: Unveiling the Myths that Fuel Muslim Anti-Semitism — and he co-hosts a news show called Friendly Fire on CFRB radio. What many people don't know about my father, though, is that he's a technical genius and something of a Facebook junkie.

The first thing he asked for when he came out of surgery was his iPhone.

He hooked into the hospital's Wi-Fi and now he is fully loaded in his hospital bed with iPhone, iPad and laptop. His world is, literally, at his fingertips.

From Karachi to Taipei

For both of us, Facebook, Twitter and our blogs have proved invaluable during this difficult time.

Author and activist Tarek Fatah in hospital in Toronto. (Natasha Fatah/CBC)

They've allowed us to tell everyone we know how he is doing everyday with simple status updates, without having to call family in Karachi, Mexico City, London, Amsterdam and so many other corners of the planet.

My cousin in Taipei and my best friend in Colombo are up-to-date with the situation in a way that they never could be without social media.

And without much effort or expense, they are able to reach out and give daily pep talks and affection.

There are literally not enough hours in the day to talk to everyone who wants to know how dad is doing, especially since he has followers, friends and foes all over the globe.

So, in the spirit of Tunis and Cairo's Tahrir Square, my father is carrying his medical battle into the online world. He takes a picture of everyone who visits with his iPhone and then posts these on his Facebook albums dedicated to cancer recovery.

Pain and strength

My father, of course, is far from being the first person to take his personal health online.

Nicole Moore, the Ontario nurse who lost an arm in a shark attack off the coast of Mexico in January, is documenting her recovery process in a blog. So is Jill Anzarut, a young Toronto mother who is fighting for access to the breast cancer drug Herceptin.

There is also the couple in Windsor, Ont., who used Facebook to try to pressure a hospital into providing a different treatment for their terminally ill baby so that he would be able to die at home.

In my father's case, I should note, social media has also been a source of much anguish for our family.

Because he is a controversial figure in the Muslim world, some in the community have issued threats to him on Twitter, even while he was undergoing life-threatening surgery.

There is a page on a Muslim website, celebrating my father's cancer as a punishment from God and calling him a bad Muslim because he supports gay marriage. But overall, social media has been a remarkably positive experience.

It has allowed us to keep people updated and, more importantly, it has boosted my father's spirits by allowing him to be connected to everyone in his life.

He continues to write and to fight both the cancer in his body and religious extremism, even while lying on hospital bed. Several friends have expressed their reservations about us putting our lives, the cancer and the daily updates "out there" online. And while I understand their concerns about our privacy, I have to tell them that the process is part of our healing.

Medical research has shown that a patient's attitude is a huge factor in how well they recover and, as long as my dad is Tweeting and Facebooking, he is connected and happy and recovering.

When my mother underwent a life-threatening health scare years ago, when I was 13, the way we dealt with the situation was much more isolating.

Then, there was no Facebook wall where people could leave messages on a regular basis and there were no tweets of love. Yes, people were around and they cared but I definitely felt isolated in a way I just don't now.

Nothing beats actual visitors to the hospital but our presence online during this difficult time has helped us cope with my father's illness and given us, as a family, much more strength. And, I never thought that a Facebook account could do that for me.
http://www.cbc.ca/news/canada/story/2011/03/16/f-vp-fatah.html