Friday, April 30, 2010

Friday Fun

It's Friday night and I'm thinking about fun. I need fun in my life. If I get too bored I get very, very cranky.

"If you obey all the rules, you miss all the fun." ~Katherine Hepburn

I try to find fun in my everyday life...even when I'm not breaking the rules. The kids and I dance in the kitchen sometimes while we clean up after dinner. We occasionally stomp in puddles and almost always blow dandelion seeds on our walks home from school. I help liven up every work conference call with funny stories and I'm kind of known for my infectious (and loud) laugh in meetings. I joke around with my friends in person and we send each other hilarious and rude videos on Facebook. (If only I had the nerve to post some of the best ones here....! If you like offensive, risque humor, go to and you'll get your fill). I also watch some pretty entertaining TV shows and read really great books to myself and to the kids.

I'm headed into a kid weekend. And it's broke weekend, too. I'm not writing that to inspire pity. I know that we'll find free, fun things to do. We'll probably go on a bike ride, there's church on Sunday (which is actually way more fun than it sounds since I go to a pretty cool church), we'll probably go to the library, and I might do some gardening.We may also do some artwork outside in the yard and I'm guessing we'll  watch a movie and have microwave popcorn tomorrow night.

I mean no disrespect to my children, but sometimes I need grownup fun too. Not the kind that needs to be delivered in a plain brown wrapper or won't make it through internet security filters, but the kind that is for me alone...or me with other grownups. Maybe it's because I'm a single parent and so much of my free time is spent with kids or centered around the little freeloaders that keep me from going out clubbing every night. I jest...mostly.

I don't want to go clubbing every night but sometimes I need loud, live music...or dancing...or noisy crowds...or new places to explore...or seeing a cool performance...or hearing a funny/smart/thoughtful reading...or seeing a movie that's not animated in the actual movie theatre...or meeting new people...or learning something new. no particular order here's a random list of things I think are fun and want to do...or do again...or do more often. This list is by no means exhaustive or complete. It's just a beginning...
  • Dancing to live music or a really good Top 40 D.J. Do they still have clubs that play techno?
  • Hiking
  • Dance Lessons (Salsa or African dance maybe?)
  • Practicing my Spanish
  • Going to a drum circle 
  • Cross country skiing
  • Taking a train to New York City for the weekend
  • Getting more stamps in my passport
  • Seeing a Counting Crows concert from the front row
  • Writing in an outdoor cafe while I sip really good coffee
  • Going on a date
  • Trying a new restaurant with a friend (or the aforementioned date).
  • Seeing a side-splitting movie or comedy show and laughing until I snort and almost (but not quite) pee my pants.
  • Re-learning how to read music and taking flute lessons.
  • Going on a long bike ride with beautiful scenery and low sloping hills.
  • Power walking near the beach with great music in my earbuds.
  • Perusing a museum or art gallery.
  • Riding on the back of a motorcycle with my arms around the driver's waist.
  • Reading on the beach.
  • Skydiving again. 
     What's on your fun list?

                        "It is a happy talent to know how to play." ~Ralph Waldo Emerson

    Monday, April 26, 2010

    Humble Pie is Hard to Swallow but Very Nutritious

    I am one of five contributors to the HowIFightMS blog. I was thrilled to learn that the site was nominated for a Webby award in the Online Film and Video Reality category. If you'd like to vote for us, go here.

    And then I saw the beautifully produced submission video. OMG!

    Let me just say, that I believe that each of us has our own personal Higher it stands to reason, I guess, that mine would have a really twisted sense of humor...kind of like mine. The video essay they chose to use for my clip? It was one line from one video I  recorded about how some people with MS have incontinence issues and my idea for Depends Thongs. For the record, I do NOT have bladder control issues but it's a pretty funny idea for an essay, right? The line they included was the first line I spoke where I was trying to sound  like a June Allison Depends commercial. Out of context, it sounds like I'm confessing  that I, too, have bladder control problems.

    I think the timing of this video submission is hysterically humbling. Two short days ago, I was feeling diseased and defective for having MS and wrote about it here in yesterday's post. Then today, I find out there is a very public perception that I regularly and involuntarily pee my pants. The Universe is a riot sometimes. But you know what? It kind of made me  feel better! It was so insanely absurd that I had to laugh. I am who I am and part of me--the central nervous system part--has Multiple Sclerosis. And all of me chooses to find the humor in that fact. If that is unattractive to others, oh well.

    Sunday, April 25, 2010

    MS Reminder

    Sometimes, I can almost forget that I have MS, especially when I'm feeling great. I have optic nerve damage and other vision issues, but I have no other symptoms in my daily life. Every day, when I inject myself with Copaxone, I get a mini reminder. Since I give myself the shot just before bed, it's kind of a fleeting awareness and I usually forget all about it by morning. And, unlike when I was first diagnosed, MS is not my first waking thought...thank God.

    Of course, I remember when I write in this blog or for I remember when I read someone else's MS blog. I remember when I read that an MS Facebook friend isn't feeling well. But during those times, the realization is sort of like, "Oh ya. I have MS." It's not bad. It just is. I think that's because I truly believe that I am not going to die of MS, die disabled, or even die with MS. I believe there is going to be a cure in my lifetime. So, ya, I have MS like how someone has diabetes or asthma. It's there and I have to manage it, but it doesn't define me. Most of the time, I feel like I am incredibly fortunate.

    The yucky reminders are the ones that come when someone finds out I have MS and they seem to see me differently.  When it's a man I find attractive, it kind of sucks. Especially if I felt strong, sexy, and intelligent in their eyes before. All of a sudden, the person mentions my MS without me mentioning it first (I am kind of all over the place on social networks, etc. so I shouldn't really be surprised) and BOOM. Suddenly, I see myself how they see me...or how I fear that they see me. I feel defective and damaged and just not good enough. It sucks.

    Some guys don't like feminists. I am one so they may not like me. But that feels different. I don't really want to hang out with someone who doesn't respect my core beliefs. It's not really a rejection when you don't care for the person very much in the first place.

    Some guys may just not find me physically attractive.Maybe they like blonds or skinny women. I'm brunette and, while I'm not fat, I'm not skinny either. I suppose if I wanted to kill myself in the gym and cut my calories in half, I might be able to get skinny and I could certainly dye my hair, but I don't want to. Most days, I like the way I look and feel in my body. So that's different, too. I don't find every person attractive and I get that not everyone is going to find me attractive.  Some people like Fettucine Alfredo, some people like Linguine Marinara. One isn't bad and the other good. It's just a matter of taste.

    But my MS is different. It just is. No matter what I eat, wear, or think, it will not go away. And, even though I mean it when I say that it's a blessing in my life, it isn't exactly something that I sought out or put on my Christmas list. I've worked pretty hard to shift my perspective to see it as a blessing and I work pretty hard to keep it from shifting back.

    Today, I am working overtime. I understand that MS is the kind of thing  that brings up lots of misconceptions for people. They hear MS and maybe they think of the one person they know with the disease who is in a wheelchair. No matter what I do or say, some people will view me as sick, disabled, or just different. And, if you don't really know the person very well and they don't voice these thoughts, you just see the reflection of yourself in their eyes and there really isn't space to say anything at all. And that sucks.

    Maybe I'm wrong. Maybe it's not the MS. Maybe I'm using MS as a cop out because I don't want to accept that the person I like doesn't like me back...or least not in the way I want him to. He doesn't LIKE me, like me, as my daughter says. Maybe I'm Vegetarian Lo Mein and he prefers General Gaos Chicken. Maybe he doesn't think I'm funny or find my laugh annoying. Maybe my legs are too heavy or he's the kind of boy who doesn't make passes at girls who wear glasses. But you know what? Because I have MS, the doubt is there. And it sucks.

    And, because I'm me, I sometimes turn that kind of crap inward. All day today, I've been asking my higher power to help me not beat up on myself, woulda/shoulda/coulda myself and to let go of my unrequited crush and point that energy in a positive direction. I'm doing the things that make me feel good about me: church, music, friends, reading, and writing. I need to trust the Universe that I will be taken care of no matter what and that the right people will be put in my life at the right time for the right reasons. I also have to remember that it's a good thing that every good looking guy doesn't want me because I'd be exhausted! 

    I have a friend who often reminds me that I am perfectly worthy. It's just all my fears and misconceptions that make me think I'm not. In the words of Stuart Smalley, my favorite unlicensed therapist, I'm good enough, I'm smart enough. And, Gosh Darnit...people like me.

    Sunday, April 11, 2010

    A Spectacular Sunday

    Here are the highlights of my amazing day today:
    • Jesus This and Jesus That. It was Union Sunday today. Once a year, my Unitarian Universalist, minister, my fellow congregants and I cross the green to go to the Congregational Church that split with our church a couple hundred years ago. They were very nice people but it confirmed for me that I the only possible organized religion I could be a part of is one without a unilateral creed.
    • Sunshine Day. The weather was glorious today. I spent the afternoon hanging out in the yard with the kids, my neighbor, and their new puppy.
    • Bombay Bonding.  I went out for Indian food with Diane the Librarian and two of her friends before the show tonight. We ate garlic non, lamb curry, rice, a tandori seafood dish, a yummy spicy vegaetarian dish and more. Best of all though, we played a new (to me) word game that I will be playing again soon, I hope. I love being with smart women who appreciate my not-so-hidden inner geek.
    • Freaky Motha Fucka. I saw David Sedaris read at Symphony Hall tonight. He told a wet-your-pants funny story that featured a man at an airport wearing a T-shirt with that lovely tagline. I was able to meet him after the reading and have him sign my book with that same memorable phrase. Best of all, though, was when I called my babysitter Ashley from the line and then asked Mr. Sedaris to say hello to her. Here's the conversation:
      •  Me - My babysitter loves you but couldn't come see you tonight since she had to watch my children. Will you say hello to her?
      • David - I won't hold the phone...
      • Me - That's ok. Her name is Ashley. (I hold the phone up to him as he is signing my book.)
      • David - Ashley? Is that the one you told me about who has a drug problem.
      • Me - No, this is the one who is a crack whore on the weekends.
      • David - Oh. She's the one who gives $3 blow jobs...?
      • Me - Yes, that's the one.
      • David - Great and you let her watch your children.
    Unlike my meeting with Anne Lamott earlier this week, I think this interaction was at least memorable.  

      Saturday, April 10, 2010

      Blind Fear

      My vision is blurry today. Actually, I think it's been getting blurrier all week. I have a pretty new glasses prescription so I don't think it's that. And my glasses are clean--or should be since I've polished them with the special cloth multiple times a day this week.

      Because Optic Neuritis with vision loss was my presenting MS symptom (and is still the most troublesome and consistent evidence of the disease in my life), I'm guessing the blurriness is my MS reminding me of its presence.  I'm feeling fine otherwise so I wouldn't think it's a relapse. Still, I will call the neurologist on Monday if it isn't getting any better. Perhaps it's the fact that I stayed up kind of late this week or all the sugar I ate on Easter after being sugar free for several weeks. It would be so much easier to blame my diet...or myself--than to live with the insecurity of an unpredictable illness.

      Blindness scares me. I had a blind grandmother who lost her sight because of a disease that now has a cure--Van something or other. Anyway, my Dad told me that she lost her vision so gradually that she , was, at first, unaware when she went totally blind. When I was a child, she sent my parents letters that she typed on her typewriter. Sometimes her hands were on the wrong keys and I used to like to look at a keyboard and try to decipher what she meant to write.

      When I was in college, I worked for about a year as a reader for a blind attorney. It was the least favorite of three jobs that I had at that time. She was a very, very angry woman. In public, she walked with a cane with a red tip. She told me that when people would approach her at crosswalks and take her arm to help her across the street, she would hit them with her cane and tell them that she learned to cross the street in Kindergarten. She made me read her personal ads from The Phoenix and met several men without telling them ahead of time that she was blind. She said that she didn't see it as a defining characteristic. Apparently the men did. More than one man left the meeting spot when the only woman he saw sitting alone was a blind woman.

      I saw a blind woman at a meeting earlier this week and I avoided her (which is actually pretty easy to do). When she went into the bathroom, I didn't follow her in even though I had to go, because I didn't want to talk to her.  Irrational, I know, but fear often is.  When I was first diagnosed, my minister told me that a woman at church also had MS. She's in a wheelchair.  It took me over a year to introduce myself to her although I saw her most Sundays. I know paralysis isn't contagious but I didn't want to think about MS taking away my ability to walk.

      I don't want to think about MS taking anything from me. I like being the funny one with MS. I like being the one who says that MS is a gift and really mean it. I like being able to see.

      I know that blindness is a very remote possibility but it scares me all the same. Because optimism and the ability to make lemonade out of lemons is now my default, I know I would eventually get to a good place with it, but it would be a difficult path.

      I really like being able to see.

      I like seeing my children wave and mouth "Hi, Mommy" as they recognize me in the audience of a performance at school. I already can't see that if I don't get there early enough to get a seat in one of the front rows.

      I like noticing a handsome man smiling at me from across the room. I've noticed that he has to be pretty close for me to be sure he's smiling at me...or even that he's a man.

      I like reading the menu all by myself on the wall at Starbucks and not asking my friend to read it for me as I did tonight and then resisting the urge to tell the barrista that I am not illiterate.

      I like recognizing my friends in a crowd. I like seeing the restroom sign when I get to the area where a store clerk assures me that it's located. I like reading books. I like watching television and movies and plays.

      When I can't see something or someone very well, it scares me. A lot. Sometimes I get pretty bitchy about it. Like when the after-school counselors at the kids' school gestures that the kids are "over there" and I'm not sure where "there" is as I desperately try to remember what color shirts they wore to school that day so I can pick them out of the visual mess before me. That's what happened when I picked them up yesterday. I ended up screaming at them both for not being where they were supposed to be and all ready to go home. I later apologized and explained that I was scared and shouldn't have taken it out on them.

      I think being blind would require a trust level I just don't have. It would also require that I ask people for help way more often than I already do--and I already do it way more often than I used to.

      But the fact is, I am not blind today. I have MS. I have blurry vision and I am OK. And tomorrow, if it's blurrier, I will still be OK. The rub is remembering that.

      Thursday, April 08, 2010

      Inspired by Anne Lamott

      My friend Diane sent me an announcement last week about a reading at the Coolidge Corner Theatre with Anne Lamott, my absolute favorite author. She is my hero and my a writer, a woman, a mother, and a spiritual person. I used to say that her book, Bird by Bird: Some Instructions on Writing and Life, is what made me be a writer but I now realize that it inspired me to release the writer that was in there all along.

      When I was diagnosed with MS and started writing this book, my goal was (and still is) to create something raw, truthful, authentic, and funny. I would love to write the living with MS equivalent to lher book, Operating Instructions: A Journal of My Son's First Year. I buy the book for all my friends that have babies. It's filled with wisdom and humor and, most importantly of all, it validates the dark, ugly real stuff that we think we aren't supposed to feel as mothers. Usually my friends send me perfunctory thank-you notes while they are still pregnant, but then call me in a few months to really thank me.

      When I called Brookline Booksmith to inquire about tickets to tonight's reading, I was told that they were all sold out. The person I spoke with suggested that I arrive early to wait for possible stand-by seats. I was also told that she would be signing books at the bookstore across from the theatre right after the reading. I resigned myself to the fact that I may not be able to hear the reading but that I would get to buy her new novel, Imperfect Birds, and have her sign it.

      So, I went on faith. I was the first person in the stand-by line but it wasn't long before I was joined by another woman who had driven all the way down from Vermont in the hopes of getting a ticket. A couple minutes later, an employee of the bookstore come up and just handed us tickets!  They were general admission tickets so I figured I would need to sit near the back. I was still ok with that since I was so grateful just to be in the theatre. The doors open and in we went. Because I was alone, I found a single seat in the second row. I was absolutely giddy waiting for her to come out and read.

      She did not disappoint. She told stories, read from the first chapter of the new book which is wonderful so far, and answered questions. I asked a question. A pretty dumb one, actually about how being a grandmother was different for her from being a mother (DUH!), but I'm ok with that, too. Earlier in the day, I mentioned to my friend Christina that I wanted to think of something really witty to say to impress Anne Lamott. Christina had the perfect answer.  "Don't worry about it. It's not like there's anything  you can say that will make her be your best friend." Kind of put it in perspective.

      After the reading, I went across the street to Brookline Booksmith, bought the book, and waited in line for her to sign it. When I got up to the table where she sad, I did not ask her how she felt about her "aunties" these days (that would have been a good question); I did not tell her that she inspired me or that she was my hero, mentor, etc. I told her that I enjoyed the reading and couldn't wait to start the book on my train ride home. And I did. And I'm ok with that, too.

      Thanks, Anne, for inspiring me to embrace my imperfect self. And I know that if you really knew me, you'd love being my friend.