Friday, February 13, 2009

A Valentine's Day Challenge

I learned about this 6-Word Valentine's Day Memoir Collection on NPR and I thought I would put it out there to all of you...with a twist.

In six words, say what you love about having Multiple Sclerosis.

Ok. I know this seems a bit nuts but, hear me out! I remember going to a body image workshop once where we all had to identify parts of our body that we hated and then say three things we liked about that particular, hated body part. It really helped and I have a much different relationship with my ass as a result of the exercise.

I also really enjoy the challenge of using limited words to express myself. As regular readers know, brevity is not my strong suit.

Here's mine:

I now give myself permission to rest.

Give it a try!

Wednesday, February 11, 2009

Video from the "I Have MS and I'm Fabulous" Group on Facebook

I found this video in a new Facebook group I joined--I have MS and I'm Fabulous.

I really want to get that MS tattoo with the Superman symbol!

A Multiple Sclerosis Haiku

I tell them the news.
Head tilt. Arm squeeze. Tearful eyes
"But you look so good!"

Monday, February 09, 2009

What the Hell is Private Pain?

I don't think I have always been an exhibitionist. I did visit a nude beach quite often one summer in college but everyone else there was naked, too, so that doesn't really count. I never streaked or flashed or had sex in a public place...not that I remember, anyway.

But that's not really the kind of exhibitionism I'm talking about. My name is Julie and I'm an emotional exhibitionist. I don't know how to feel anything intense without telling the world. Except, that it's not always appropriate. I rarely give a shit about that sort of thing but sometimes it's about other people. If my inappropriate over-sharing drags another person into the realm of over-sharing without their consent, is that fair?

But it's my blog. I have the disclaimer in a sidebar about people who know me running the risk of showing up here so, in a court of law, I'd probably be covered. But what about other people's feelings? Is is, after all, not all about me. So, I write in abstract and feel like I'm drinking near beer or decaf or I let it rip and possibly cause pain or embarrassment to people I love.

So, there's the dilemma. And how does one have a dilemma without tweeting, updating Facebook status, and blogging about it? I have real friends to, who I actually speak to on the phone and see in person. I've been talking to them often the last several days. That is no longer enough.

How do other bloggers/writers handle this problem? Do you have a separate, secret, unlinked blog to share the real dirt? Do you revert back to writing in Word or even with pen and paper? Do you just say "screw it" and put it all down for the world to see, read, and judge...even when it's not just you that will be judged? Do you create fictional characters that represent you and the other real people? Do you practice restraint of tongue and pen and simple talk out loud to those you can trust?

I feel like my writing is my release.What I express here is my authentic self. How do I put that back in the can? I don't know how.

Sunday, February 08, 2009

Facebook 25 Random Things

Facebook has this somewhat disparaged thingamajig floating around called "25 Random Things." Two well-respected journalistic forums, and The Huffington Post, have published articles in support of this widely-distributed social networking feature. I've really enjoyed reading my Facebook friend's revelations and thought I'd share my own here. Don't get too comfortable because you're next.

1. My parents did not give me a middle name at birth. I was told that girls didn't get middle names because we would get to use our maiden names WHEN we got married and took our husband's last name. At 18, I legally changed my name to include the Marie I took as a Confirmation name after my Grammy Marie passed away. I was born Julie Baker and I will always be Julie Baker.

2. The first time a boy asked me out was in the 6th grade. I had just moved to the neighborhood (either Racine, Wisconsin or Sparks, Nevada). His name was Duane Johnson and he wanted me to go to Dairy Queen for a cherry dip cone. I said no because I was nervous.

3. I am a sucker for men who write poetry and/or music, especially if it's inspired by their feelings for me.

4. I am legally blind in one eye.

5. I used to be freakishly strong (carrying my end of the sleeper sofa up a flight of stairs) but now I only possess normal physical strength. Emotionally, though. I'd like to believe I'm still freakishly strong...with the help of my peeps and my HP.

6. If Ruby was born a boy, her name was going to be Adam Monroe.

7. Zane weighed 2 lbs. 13 oz. at birth.

8. I have tattoos: One Fish, Two Fish, Red Fish, Blue Fish on my lower back.

9. In elementary school, I stayed inside for recess to participate in spelling bees--the boys against the girls--and, more often than not, I won first prize. I liked spelling but I think I liked the prize more, a Tootsie Pop.

10. Although I have my Bachelor's degree, I have never successfully completed a college-level math class. Like Barbie, I hate math. That's probably the only thing we have in common.

11. Boogers come out my nose when I cry. I'm an ugly crier.

12. I love freecycle and craigslist free stuff and I have furnished 3/4 of my house from my finds.

13. My favorite candy is Good n' Plenty.

14. I believe in a Higher Power but I don't totally understand or need to understand what he/she/it is all about. I can tell you how it makes me feel to trust and feel loved and cared for and see this source working in my life, but I can't explain it beyond that.

15. I do a really good impersonation of Edith Bunker singing the theme song for All in the Family, Those Were the Days.

16. My first paper route was at the age of 8 and it was illegal. My older brother delivered newspapers for the Hartford Courant and, when he went to Lake Tahoe to visit my grandfather for the summer, I took it over. I had to pretend I was a boy, though, since the Hartford Courant had a policy at the time that girls were not allowed to deliver papers (I think it was 1972). One day, my hair fell out of my baseball hat and a customer reported me. When the newspaper said they were going to fire me, my mother told them she would take responsibility until my brother returned. At the age 12, I was fired from my last paper route. Although I had always been conscientious before then, I started dumping my papers in the woods so I could go hang out with my friends after school. I came home one day to find my route manager sitting with my father in the living room with a pile of dirty papers at their feet.

17. I picked and "sewed" tobacco the summer I turned 15 for the Consolidated Cigar Company in Broadbrook, Connecticut.

18. The first short story I remember writing was in 6th grade and it was a fable about Rattlesnake Mountain in Nevada which I could see from my house in a nasty little suburb called Sparks.

19. The first poem I ever wrote was about a boyfriend who went to sea in the Navy and it was really, really bad. I still remember the beginning: "He's gone away for a time. I want to say it's all just fine. But, God, so long before we speak, I hear a song and start to weep." The last poem I wrote was yesterday and I think it was only slightly better.

20. My mother wouldn't let me get my ears pierced so I snuck off and did it anyway when I was 13. I hid it successfully for about a week by wearing a bandanna on my head and covering my ears.

21. I joined the U.S. Army when I was 17-years old as part of the delayed entry program. I was supposed to leave for basic training after I turned 18 to become a teletypewriter repairer. I didn't go.

22. I've had three different boyfriends named Ken. I only fell in love with one.

23. I smoked cigarettes for 20 years--from when I was 12 to when I was 32.

24. After I had my last cigarette, I signed up for the Boston to New York AIDS Ride. It was the year they did 4 days instead of 3 and it was the hardest year of all. I rode my bike 308 miles from Boston to New York through hurricane force winds and rain. After finishing the AIDS Ride, I knew that I could do anything if I set a goal and worked toward it.

25. I am filling this out now to distract me from my conflicted feelings.

Now it's your turn.

Sunday, February 01, 2009

Join Team Lazy!

I formed a team to participate in the 6-mile Boston MS Walk. I would love to have you join Team Lazy as a participant or a supporter. If you can be in Boston on April 5, visit the website and join Team Lazy. For a limited time only, anyone who signs up to join our team will get a free ride in a horse-drawn chariot with a sexy servant (of either gender) to fan you and feed you grapes as you travel through the city.

Ok. Not really. But you will have a fun day and get a purple Team Lazy t-shirt, compliments of moi. And out-of-towners who I know, like, and trust with my children can even have a pull out sofa and/or floor space to sleep on.

If you aren't up for the 6-mile walk or live too far away, I hope you will consider making a donation to the cause. My personal and Team Lazy fundraising page can be found here. No contribution is too small because every little bit helps in the fight against Multiple Sclerosis.

We are walking and asking you to donate so the MS Society can find a cure. It will be a great day when no one else has to be pulled into a private room to hear those dreaded words, "You have Multiple Sclerosis."

It's funny. They pull you out of the hall to tell you in private but just the fact that they are pulling you out of the hall kinda gives you an indication that the news is not good. If test results are negative or benign, they just tell you in the hall...right?

But I digress.

As you know, I rarely use this forum as a fundraising arm for the MS Society or any other group. This is different. This is personal. Since I was diagnosed 16 months ago, I've tried to take this disease and use it to transform my a good way. My goal has been to wring every bit of awareness and humor out of the lesions and symptoms, and the changes they've caused in my life. I can actually tell you that I'm grateful for the MS because it's brought me back to my writing and on the road to a truly authentic life. But now that I'm here, I'm kind of ready to let go of the MS so let's find a cure, shall we?

Seriously, though. I've tried to help others and increase awareness of MS so people won't do the arm squeeze, head tilt, and puppy dog eyes and make all of us with the diagnosis feel like we received a death sentence. It's been a pretty selfish pursuit. I've done it to stay positive and sane. Now it's time to give back. I hope you will help me do that.

Which do you want to hear first? The good news or the bad news?

Every now and then I have a major realization about my MS. This time it came from a very hopeful article about using our own stem cells to reverse the damage (including vision impairment) caused by MS. The part that kicked me in the butt, though, was the line where the author said that, after out 10-15 years of having relapsing and remitting MS, the disease progresses to secondary progressive. It was stated as a universal fact.

Is that true? Is it 10-15 years after the diagnosis or the onset? And, if you aren't sure when the disease came alive in you, how will you know when you're time is up? And, since this is an unpredictable disease how the heck to you prepare for it to get worse? If you build wheelchair ramps and you go blind, you are shit out of luck. How will learning Braille help if you lose all short term memory or bladder function?

When I was pregnant with Ruby, I had 40 weeks to prepare. I bought diapers, took an infant CPR class, saved up sick time for maternity leave, and decorated a nursery. I read a ton of baby books and, after she was born, I kept reading, trying to stay a month or two ahead of her latest development.

When Zane was born 12 weeks early, I obviously didn't have as much prep time, but it was ok. I had done it before. I knew how to breastfeed and change diapers, and, in the 8 weeks he was in the NICU, I had tons of time to learn from the nurses, read preemie books, etc.

How is that possible here? I've read a TON of books about MS but they all basically say the same thing. It's a crap shoot. Then, there's the conflicting information. Use disease modifying drugs. Use LDN. Reject all the drugs and just change your diet. Eat lots of protein and low fat. Fast. Rest. Exercise. Keep busy. Rest.

I've figured out how to live with the MS today. I try to digest all the advice, listen to my heart, find people I trust, and take what I like and leave the rest. I give myself 3 injections of Rebif each week; I pray and meditate; I try to keep to a low-fat, low sugar, dairy free, red meat and pork-free diet; I do yoga; I walk; I write; I try to not be my former freakishly strong macho self when it comes time to move a sleeper sofa and other physically strenuous tasks; when I'm not being a "non-compliant patient," I get my monthly Solumedrol infusions; and I try to live one day at a time.

But how do I prepare for the future? Am I being Pollyanna or Annie, to just trust that if I play "the glad game," "the sun will come out tomorrow?" Should I be DOING something?