Tuesday, May 26, 2009

Welcome Newcomers

For my new visitors and followers, I'm thinking it must be really confusing to just JUMP into my journey with MS. I mean, this woman has MS but she's going on about dead dads, politics, whining about lesions....?WTF? Where is the context? Where is the humor? What's it all about and, in the words of Admiral Stockdale , "Why am I here?" (Remember him? Ross Perot's running mate? I absolutely loved the late, great Phil Hartman's impersonation of him running alongside the car with Ross Perot driving. Or was it the other way around...?)

But, I digress.

If you are newly diagnosed with Multiple Sclerosis or know someone who is, welcome! This is the best club you never, ever wanted to join. I wish you peace and strength as you navigate the world of this chronic, live-changing illness.

And, once you settle in and get comfortable, I'd also like to invite you to be open to the blessings of MS. To paraphrase Michael J. Fox from Always Looking Up: The Adventures of an Incurable Optimist: For everything that MS has taken from me, it has given me an even greater gift. Swear to God. If you are sick, scared, in pain, or all of the above, you are probably questioning my sanity and/or sobriety. You wouldn't be the first. I kid you not, though, that I thank theUniverse for giving me Multiple Sclerosis. That doesn't stop me from whining about it sometimes nor is it intended to discourage whining on your part. Whining is part of my journey, too, and it helps me get to the place of recognizing the up-side.

Don't get me wrong. I want to find a cure for MS. I want better treatment that does not involve horrendous side effects, self-injecting medication, and regular infusions. I want to support scientists who are using stem cells and other technology to reverse nerve damage and give people back full use of their bodies, minds, and spirits. I want our children and children's children to not get pulled into a private room and hear those frightening words, "You have MS."

But I do have MS and that cure is not here yet. Lemons are all around me and I can either pucker up or get some sugar and make me some lemonade. I've chosen the latter and that's what this blog is all about...most of the time, anyway.

Since I was diagnosed, a lot has changed in my life and it's not all bad. Although my vision has diminished to the point that I no longer drive, I now reach out for help and rides and rarely go to meetings alone anymore, which has improved my social life and decreased isolation considerably. I'm also taking public transportationever where which is much better for my pocketbook and the environment. I never figured out a way to read and drive at the same time but I'm getting lots of reading done on the T.

I have less energy than I used to, which means that I have to choose carefully before deciding to do something. I make a point not to waste energy on silly/unimportant things (most of the time). I prioritize in a way that I have never been able to do and I spend my energy on the things that are truly important and meaningful to me. I take better care of myself and don't burn the candle at both ends like I used to do. I now view rest and relaxation as completely valid and worthwhile activities.

Stress does terrible things to people with MS. Since stress does terrible but more invisible things to everyone else, I'm benefiting all over the place by doing conscious acts to reduce stress in my life (yoga, meditation, work/life balance, etc.). If I didn't have the visible MS stuff to remind me (fatigue, numbness, more vision issues, pain, etc.), I would probably have just as many excuses as everyone else about why I can't reduce stress in my life. Now, though, if I decide I'm immune to stress, it knocks me on my arse and reminds me who's boss.

Heat is not good for MS. Most people with this wonderful disease, including me, notice an increase in symptoms in the hot weather. I used to love to lay out on the beach for hours at a time. In recent years, I've worn sunscreen, but still, some of thoseUVA/UVB rays have, no doubt, gotten through. Now, I limit the amount of time I spend in the sun and often choose shady spots to hang out in order to reduce symptoms. Who knows--I may even be staving off skin cancer at the same time.

When you have a disease like MS that can affect literally any part of you that's connected to the central nervous system (in other words, ALL OF YOU), it's hard to know what's MS and what's just normal aging or clumsiness or whatever. Although I am the first to point out thesuckiness of that fact, I'm also aware that I am way more attuned to my body and mind than I ever was before.

Before MS, I always wanted to write beyond the copy I crafted for my job. I was a writer who wasn't writing. Now I write. MS has been my catalyst, my inspiration, my muse, if you will. Even after they find a cure and people view MS like we now see polio, I will be grateful that I had it. I will be grateful to MS for giving me these gifts. I'm not sure, but I don't think I could have received them any other way.

If you are new here, I hope you will come back. There are some helpful facts about MS in the right margin and sprinkled throughout my posts. You can also visit the National MS Society site. for information and resources about Multiple Sclerosis. This blog is filled with my opinions, my voice, my feelings. You are more than welcome to share yours here via the comments feature or even start your own blog if you have a lot to say. Or maybe you want to write a poem or paint a masterpiece, or do a photo essay. Whatever you do, find your voice and when MS tries to shut it up, tell it to screw.


  1. This is such a fantastic and positive summary! I'm just over a month into my official diagnosis, and yours was one of the first blogs I found as I navigated through the tests and doctor's appointments. I love it--and agree with so many of the silver linings you have called attention to. Thank you.

  2. That Dwennimmen and welcome! You are the best kind of MS patient you can be if you are only a month in and researching yourself. I think that when you have a chronic illness, learning to educate and advocate for yourself is key to living and coping. You are well on your way.