In this new age of the Internet and the ability to communicate online with others anywhere using a personal computer, many people turn to ‘cyberspace’ to find information, to find new contacts, and to ask medical questions.

Consider that ‘surfing the net’ is not strenuous at all and is available to most myeloma patients, even if they have been injured, are in the hospital, or are resting at home. There is an international aspect to it also, which gives us the unique opportunity to compare and contrast treatments and attitudes towards myeloma across national boundaries.

That’s what we readers, posters, columnists, medical advisors, and Beacon staff are all doing: sifting and sorting through the written word, searching for clues and meaning as it relates to our particular type of multiple myeloma.

Because myeloma is still relatively rare in the general population, perhaps more patients and caregivers turn to the net for help than is usual for medical problems. There is a lot of cutting-edge, new myeloma research being carried out all the time. It is nice to read about it and try to catch a glimpse of the future. The future looks rosier than the past was. In fact, where I live, even the present is better for myeloma patients than the past of only a decade ago.

A decade coincides more or less with the length of time that really effective social media has been available to the average computer literate person too. Could this be just a coincidence? Like many other questions asked about myeloma, it remains unanswered as of yet.

In my household, the types of social media in use include Facebook and interactive websites such as the Myeloma Beacon. Youth in particular seem to be immersed into the World Wide Web. My friends and I shake our heads over people getting thumb injuries from ‘texting’ and being hit by cars in pedestrian crosswalks, because they are reading messages from their cell phones, with their heads down and not looking up.

Of course, at my age, for most of my life there was no computer media, so it has all been an interesting learning experience.

I remember that when my siblings and I were children, we usually vacationed on the coastline of British Columbia. We found ourselves at various beaches over the years. As kids, we would walk all along the shore. If it were rocky, we would turn up the stones and let the incoming tide waters swirl in around them, until they were once again submerged. I see looking through all of the information on the Internet as being like that: turning up stones to see if there is something of value beneath. Reading articles, to see if it is relevant to our situation, is now possible.

Exploring online may be informative, beyond what one can learn from one’s local environment.

From online reading, I have learned about many issues and problems, treatments, and near cures for myeloma. I had no idea that so many like-minded people would also be online, searching, communicating, and trying to make sense of their new reality. These tend to be the advantages of online learning.

To every area of sunshine, there is also a shadow, and the downside of the Internet experience is also ‘out there.’ We have all heard of people who have been duped by scams, fed misinformation for other’s financial gain, or just led down the garden path somehow. So we have to be super cautious about how much we expose ourselves on the World Wide Web in order not to be harmed in any way.

I notice that many people do not use their whole names, or use a pseudonym when posting to The Myeloma Beacon. I was not fully identified as a poster on the Beacon, until I agreed to write a column. At that point, I went ‘public’ with my whole name. My reasoning was that it might help others somehow to read my column, and I couldn’t just sign off with my initial anymore. To my pleasant surprise, I haven’t noticed any bad effects from this.

In fact, writing a column has lead to me learning more computer skills as well as studying more about myeloma.

I think that what has been the best benefit for me from being involved online has been the connections I have been able to establish with other patients and caregivers.

I feel that the online community is a large, spread-out support group, which is of immense value. One of the worst things that one could do would be to become isolated with this disease.

So, all in all, using social media in regard to my experiences with multiple myeloma have been positive.

───────────────── ♦ ─────────────────

The quotation for this month is from Mahatma Gandhi (1869 - 1948), the preeminent leader of Indian nationalism in British-ruled India, who wrote "What you do may seem insignificant to you, but it is most important that you do it."