Sunday, January 10, 2010

Looking Through the Other Side of the Window

It's now been about 15 months since I was officially diagnosed with MS.  I still remember the feelings that seemed to engulf my very being that fateful day- the fear, the sadness, the anger.  I also remember scrounging the internet to gather every piece of information I could find on this disease to the point it became almost obsessive.  I was desperate to understand what was happening to my body, and even more desperate to understand what this diagnosis meant for my future.
I still stay on top of the latest news and research on MS, but as for the disease itself I know longer feel compelled to read the same information twenty times over.  Now, I've taken the knowledge I've gained along the way and I try to educate others on this greatly misunderstood and underestimated disease.  In many ways, that's what this blog has even become.  As I've mentioned before, I've played the online game "Second Life" for quite some time now.  In Second Life, I belong to a Multiple Sclerosis support group, and I'm quite honest with those I meet in the virtual world about having the disease in real life.  I often tell people the reason I'm so open about having MS, and happy to answer questions, is because with an estimated half million Americans living with this disease, there's a good chance at some point in our lives we'll all have someone we know develop it.  If my openness about MS helps even one other person to understand it, and potentially make someone's struggle living with the disease a little less scary, then it's worth it.

Well... it seems my own words rang true about the likelihood of people knowing someone with MS during their lives.  A couple days ago, a friend of mine from Second Life was also diagnosed with MS.  It's very different being on the other side of the window, looking in on someone newly diagnosed versus being the one struggling with it.  I must say though, it's not easy.  In some ways, it's actually just as hard.  I think anyone can talk about having MS, or write a blog about what life with it is like.  It's entirely different talking someone you consider a friend, and trying to find the gentlest way possible to answer their questions and give them information without adding to their fear.  My heart just broke as I spoke to him.  I wouldn't wish this disease on my worst enemy, let alone a friend.  I wanted so badly to just make him feel better, tell him everything is going to be fine, but I knew doing so would only be a grave injustice to him.  He deserved to know the facts and the truth about life with MS, so I just tried pass my knowledge onto him as gently as I knew how.

Which actually leads me to my latest 'gripe' about the medical professionals and how they handle patients newly diagnosed with MS.  It seriously floored me how little information his doctor gave him.  He was essentially diagnosed, told he'd go on injections, and not to worry about it.  Like he'd just been diagnosed with a common cold!  How in this day and age, with all the information at our fingertips, can a doctor be so uneducated?  It really made me angry, because not only does it put the patients at a great disadvantage it can actually cause them a lot more undo stress when they struggle through trying to understand what's happening to them on their own.  Needless to say, I advised my friend he may want to seriously consider shopping for a doctor better educated on MS.  It's like I say all the time- you as the patient are the employer.  You have every right to expect and demand the best and most knowledgeable care available.  If your doctor, your employee, can't deliver what you need and expect?  Fire them and find a better one.

To my friend newly diagnosed (yes I gave him this link), know I'm here for you if you need me.  To everyone else reading this- I'll reinstate a challenge I've put out there before: Educate yourself on Multiple Sclerosis, and spread that knowledge to at least one other person around you.  You never know the difference you could make in someone's life by doing so.

Be well all :)



  1. Hey there, it's Alexandra from SL. R gave me this link, I hope you don't mind. I have to admit, since talking with you the other night, I've been refreshing your blog daily to see if you had any thoughts on the conversation with him and us that night.

    Thank you for being so kind and helpful, it means alot to both of us. I can empathize with what he's going through to a certain extent, and can lend him advice and my own voice of experience in regards to my battle with Lupus... but I know it's not the same as actually having another MS survivor to talk to. So again, thank you so much for being there for him.

    You're a gifted writer and the experiences you share here are educational in so many ways... not only intellectually, but emotionally as well. Thank you for sharing this part of yourself in an open forum like this. I'd like to continue to follow your writings here, if that's okay?

    Be well, and I hope to talk with you in SL soon. :)

    ~Billie (aka Alexandra C.)

  2. Hi Alexandra :)

    I'm glad I could help you both, though honestly, I don't feel like I did nearly enough. It's hard, you know? Especially since his MS may prove to be totally different than mine. It's like I told him last night, he will find his own 'new normal' in the weeks to come. In the meantime, all he can really do is wait and see what his body does next. Which by the way, I know from my own experience just plain sucks.

    He's VERY lucky to have you, Alex. Lupus and MS have a lot of similar symptoms, and both are chronic and incurable, so while it's horrible you have to struggle with Lupus, R will greatly benefit off your life experiences. I'm sure you'll actually both end up being a wonderful support system for each other.

    Thanks for the kind words :) You and R are both more than welcome to follow my ramblings here, and contact me be it via this blog or in SL whenever you like. :)

    ...maybe we'll go get kicked from another sim for telling a chic crying on voice to get a life. LOL! (that was just epic! *laughs hard*)

    Take care and talk to you soon!