Monday, April 30, 2012

Sensory Overload

Obviously, I don't write quite as often as I used to. This is partly because the MonSter has been playing nice lately and I am rather enjoying living my life without it constantly digging its claws into me. But I would be lying if I said that was the only reason. I hate to admit it and seldom say it out loud but my eyes give me a hell of a lot of grief, all day, every day. I have adjusted and I continue to adjust to them.

You may have noticed that the culture we live in today is very much dependent on this little thing called the internet. And that we are all addicted to our smart phones and our social media and all that jazz. And while I don't spend nearly as much time on a computer as many people I know, I do like to read and send emails, see what my friends are up to (occasionally stalk people??) on facebook, check out the latest sales online, pin things on Pinterest, etc.

Between the double vision and the severe dryness, my eyes get tired very easily and when I try and do too much reading, driving, TV watching or spend too much time staring at a computer screen they get angry very quickly. It can be a total bummer, especially when I am in the middle of reading an awesome book or desperately trying to play something on the piano only to have the notes swim together on the page. I laugh when I think I actually used to work in a IT/Training Department and spent 8-10 hours a day on the computer. The thought of trying to do that now is completely insane. 

And in today's online culture, it is hard sometimes to feel like I am not missing things when I only spend a tiny fraction of my day on any sort of computer, as compared to much of the world. Then again, maybe it's not such a bad thing. It means I have to carefully pick and choose what I spend my time on. I have to prioritize my precious eye time and say no to alot of things that I would have spent time looking at in the past. And while it pisses me off sometimes, is that really such a bad thing?

An old friend of mine wrote a book recently called The Information Diet and while I am certain his target audience was not people with visual impairments, the message actually applies to us all equally. Maybe it's okay that I don't consume as much information online as a I used to. More that half of what I used to do online was "junk food" anyway. Was any of it really making me a better, smarter, well-rounded, more interesting person? Probably not.

So what if I don't graze through the amazing things on Pinterest as often as I would like? Instead I played a new song on the piano that one of my students wants to work on. No, I didn't click on that article about so-and-so and what they wore or  and I didn't read through everything on facebook, instead I drove to meet my best friend and we had a wonderful, meaningful conversation over tea.

I think like many things in life, it's about moderation. Eat what you want, just not too much of it. Have a glass of wine now and then, not the whole bottle. Spend some time on the internet, or on your smart phone, not all day, every day. More than ever, I realize the importance of taking time to 'unplug' from it all, to limit my time spent at the computer and in turn, avoid that feeling of sensory overload on my eyes and my mind. And despite occasionally feeling like I am missing out on things, in the end I hope to be a more relaxed, slightly saner version of myself. 

Monday, April 23, 2012

Another year of wearing red shoes!

WalkMS 2012 has come and gone - our team's 5th year walking for the cure in our fabulous red shoes. It was a perfect day, not too hot for us MSers but sunny and gorgeous. We had an awesome turnout and so far have raised $11,900 this year! I have a truly amazing team and such generous donors - I appreciate you all more than you know! Enjoy a few pictures from the big day! XOXO

Tuesday, April 3, 2012


No matter how many years go by and no matter how many battles under my belt, there are certain feelings that never really go away, no matter how deeply I might bury them. And it only takes a precious second for them to all come bubbling up to the surface again, as fresh and as raw as they ever were. in my case, it's usually the feelings of grief and longing for the life I dreamed I would have - the life that is so vastly different than the one I am actually living. I realize I am blessed in many, many ways. I was lucky to be born in this country, to loving parents, to have a large, amazing family and groups of friends. I was blessed with intelligence (sometimes), I am not too unfortunate-looking and I have musical gifts and talents that I get to share with people I care about.

And yet, every so often out of the corner of my eye I catch a glimpse of some life that never existed, some life that could have been a reality...if things had been different. And when this happens I cry, sometimes for days on end to the point where I am certain it will never stop. I cry for all the things I have lost and for the future which seems less bright than it used to. I cry because I am terrified of how this journey has changed me and I fear I won't like who I become if the path continues like this for years and years on end.

I mourn the loss of simpler times when among my greatest fears was having to kill a spider in the bathroom. Now I fear losing my health insurance, not being able to afford my medication and ending up paralyzed again. Well that, and the risk of a fatal brain infection from this amazing drug that I desperately need to be able to afford because it's really my only option at this point until other drugs get approved by the FDA.

I don't know many 32 year olds who have to worry about those things.

There's that old saying that if you and everyone you knew stood in a circle and threw all of your problems into the middle, you would look at everyone else's crapola and gladly take back your own problems to deal with.
Not me. No sir. I would leave all these diseases right there in that circle, take somebody else's problems and run like hell in the opposite direction.

Leave the MS for someone else to pick up. Yeah, you can have the cancer and the constant fear of it returning, too. And don't forget to take the Sjogren's on your way out - it's loads of fun in the spring when your eyes don't make tears to wash away the pollen.

I fantasize about escaping it all. I come up with creative ways to distract myself from the fear and longing and sadness. But every escape is only temporary, always far too brief and all my troubles impatiently await my return every time.

I dream of a place where there isn't any trouble.
Do you suppose there is such a place, Toto?
There must be.
Not a place you can get to by a boat or a train.
It's far, far away...behind the moon....beyond the rain...