Sunday, July 17, 2011

Reality Check... one ... two

When I was diagnosed with MS way back at the start of 1999, I don't remember if I even had a computer and I'm sure I didn't have any internet connection. The only contact I had with anyone else with MS was a lady nearly 20 years my senior who had been in the clinical trials for Copaxone and had only ever had one relapse since her diagnosis. She had been diagnosed in the late 80's. My mom knew her casually from work.

I got her number and spoke to her on the phone. She used to work at the local hospital and when I lamented that there wasn't even a local MS support group, she took that and ran with it. She organized a group that has now been going strong for over a decade.

I feel really bad that I was the catalyst yet only ever attended 2 meetings.

I was scared and depressed to meet others who were worse off than I and had progressed to Canadian crutches, walkers or wheelchairs. As nice as these people all were, I wasn't ready to put myself in the same boat with them. I was still in denial that I even had MS.

Several years went by and the only real contact I had with others who had MS was to read stories in the MS periodicals like Momentum. Again, most of the people who were profiled were those with obvious mobility issues.

Right or wrong, that scared me. I was running from my diagnosis even though I knew there was no escaping the disease.

I don't know when it happened but somewhere along the way I moved into the 21st century and got a computer and connected to the internet. I became immersed and obsessed with absorbing as much information (and misinformation) as I could from this new portal to the world.

I no longer felt isolated. It gave me hope along with all the information and provided me with the much needed contact with others suffering the same condition. Even though none of us had the answers, it was comforting to know I  was not alone.

I was a member of many different forums when I got into this clinical trial. That's when I discovered there was a real lack of documented real-life experiences with any kind of clinical trials and I was really apprehensive about diving into it. All I knew was that clinical trials are where they decide if a medicine is safe enough to give to the general public. That's scary stuff for a hypochondriac to wrap her brain around.

So this blog was born. The original goal was to document everything from a first hand patient perspective and show others what I went through so they might get an idea of what to expect and not be so scared.  "If I can do it, you can do it", was the message I was trying to convey.

During the course of writing this blog I have met many others like myself. Fellow MSers, fellow bloggers, fellow online sellers. My circles have grown large and often overlap.

Add in Facebook and Twitter and IMing and webinars and chat sessions and I am more social than I ever was prior to having a computer. And I am never bored.

But I was thinking earlier in the shower (where I get great blog post ideas only to have them run out of my ear and down the drain before I can commit them to memory long enough to make it to the keyboard) about what constitutes "friendship" and who are our "friends".

There's an awful lot of people on Facebook who have hundreds of "friends" and I'm suspicious that they might not even have a clue who these people are. They are only "friends" in order to use them as slave laborers on their virtual farms where they invest lots of real time on their imaginary crops.

But when I stop to consider those whom I would define as my real friends, I am shocked to realize most of them are people I've never met in person or even spoken with on the phone.

"In real life" (a/k/a IRL) is an expression borne from the need to differentiate between those people and situations we experience face to face and those which occur via our electronic interface with the rest of the world.

I have exactly one person who is a friend "IRL". Others, such as my partner in the web design business, I consider to be so close that I would trust them with my life.... yet I have never seen their face.

How odd is that?? You might *know* everything about me and have an image in your head of who I am, but pass me at the grocery store and we might bump carts and exchange apologies not even realizing we know the names of each others pets.

Why is it that if not IRL somehow the connection we have made with another is less worthy of consideration as an actual friendship? I am RICH in online friends, and were it possible I would want to meet each and every one of you. Of course then we'd know for certain if we could ever actually be friends. You can't hide who you really are for all that long. I choose not to hide it because it's so much easier that way.

But we are all comfortably insulated from one another here in cyber space. Sharing only what we want. I am so very thankful I have a computer and can connect to you all. I don't think I would be nearly as happy without my online friendships I have forged over the years and that's real enough for me.

Those of you old enough to relate... remember Romper Room? And the lady with the looking glass coming toward the camera saying "I see Kevin and Jenny and Becky and..."?? That's what the internet feels like to me. The strange new world of the 2 way TV.

I don't even know when it happened that news shows started asking us to join in the conversation. The world is getting smaller and smaller every day...

And all you cyber friends out there, I feel closer to you than you will ever know. Thanks for being my friend... or "friending" me or whatever. Because as far as I'm concerned, this IS real life. :)

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