Wednesday, April 30, 2008

Open Heart, Insert Prayer

Stayed up too late last night. Woke up too early this morning. Tired but wired tonight. TV wind-down then bed.

Tim may have open heart surgery tomorrow. Christina will call and leave a message when they check his clotting at 4 a.m. If the numbers are good, he'll get prepped for surgery. If not, the waiting game continues.

I sent an email to my boss saying that I want to be there for her if he goes into surgery. Christina is a spiritual sister in my heart. I feel her pain and vice versa. She holds me up when I need it....time after time. Now it's my turn.

Monday, April 28, 2008

The Good, the Bad, and the Ugly

The good: Ruby is starting to warm up to the Milton move. It helps that she's going to have her own room and it's already painted pink.

The bad: Mr. X wants me to switch the nights he picks up the kids this week and next week but won't switch with me so I can have Mother's Day with my children AND have two consecutive days out of 14 to be on my own.

The ugly: I just ate a package of blue marshmallow Peeps because I was pissed off after getting off the phone with Mr. X. And, I'm thinking about moving on to the purple package because I can hear the kids messing around in their room an hour after going to bed.

Sunday, April 27, 2008

Denial is Not a River in Egypt

I feel like I blame things on MS and get pissed off when other people don't. But then, when other people blame my MS for a pain or a behavior, I get pissed off at that, too. In short, I'm a piece of work.

I have cramping and pain in my hips, thighs, knees, forearms, and biceps. I think it started yesterday. It may have been the day before. Is it MS? I am a bit sleep deprived which can definitely exacerbate MS symptoms and even trigger a relapse. Ken asked me if I felt well rested this morning (I stayed over while the kids were at John's). It told him I NEVER feel well rested. It's true. Do other people? Do you?

When a friend at my meeting asked me how I was feeling this morning and I told her about the pain and fatigue, she said , "Maybe it's the rain." Mind you, this friend knows that I have MS.

I bit my tongue then said, "Maybe." I wanted to say, "The rain???? What the hell?! I have M.S. --Multiple Sclerosis, for cryin' out loud."

But, then...when I dropped an iced coffee on the ground on my way into work, another friend asked me if I was doing that all the time again like when I was first diagnosed. I wondered why she couldn't just cut me slack for being clumsy. Why does everything have to be a symptom of MS?

I have my next neurology appointment in about 4 weeks. There's still a part of me that thinks Dr. Pless is going to do more tests and tell me it was all a huge mistake and I don't have MS. I know that 2 MRIs of my brain, an MRI of my thoracic spine, and an MRI of my cervical spine all found lesions with a cause of MS. I know the lumbar puncture found the three bands of protein or some other such substance that is visible in many MS patients. I know that I have nerve damage on my optic nerve and can't see out of my right eye. I know that I am injecting myself with disease-modifying drugs three times each week. The insurance company is apparently convinced enough to pay for all these expensive drugs and tests. Why am I still in denial? Or rather, why am I in denial AGAIN???

I used to think acceptance was a linear process. For me, it's more like a loop-de-loop roller coaster. It's up, it's down, it's upside down, and every which way. Sometimes, I'm good with the MS, even grateful for the disease and the positive impact it's had on my self care, priorities, and writing. Almost all the time, I feel incredibly blessed to have health insurance and live in the Boston area in 2008. I can't imagine having MS in a undeveloped country or even to be uninsured in the US. Most of the time, too, I'm grateful that I don't have something fatal or untreatable. MS may suck but it doesn't kill you like some cancers can.

Sometimes, I'm really, really sad. I think about what the disease has taken from me, mostly stuff you can't see like a sense of security, physical strength, and invincibility. Sometimes, I think it's all just a nightmare or a grave medical error. Other times I am just so pissed off and I want to stamp my feet and shout, "No fair!" at the top of my lungs. The worst, though, is the fear. The unknown is absolutely terrifying.

I want to believe that scientists will find a cure. I want to believe oral medication is just around the corner. I want to be in this one day where it's easier to stay positive and grateful. But it doesn't always feel that way.

I think the denial is a protection from all the other crap. Living in ignorance feels better than living in sadness, anger, or fear. I can just put my figurative fingers in my figurative ears and sing, "Lalalalalala" at the top of my lungs and maybe that'll work." Hold on. Let me see.

Nope. When I took my fingers out of my ears and opened my eyes, I still had MS. I still HAVE MS. I also have Ruby and Zane coloring on their new oversized paper I found at Building 19. I still have a full belly from the curried chicken, rice, and green beans I made for supper. I still have a roof over my head and a bed to sleep in and my children are healthy and here with me. If I keep my fingers in my ears I can't hear them giggle and tell me they love me.

Saturday, April 26, 2008

Weird Work

Every time I click on the world map on the homepage of this blog, I see a new red dot! It's very cool to think about people in far-off lands reading this blog...either on purpose or by mistake. It's also very strange to see ads for women in lingerie who are available to keep you company on the phone. Just in case you were wondering, I do not get paid for these advertisements for phone sex at 99 cents a minute. I simply endure them in return for access to the world mapping feature. I'd prefer tacky images of scantily-clad men but nobody asked me.

I wonder what it would be like to be a phone sex worker? (If anyone has ever had this job, I would LOVE to hear about it.) I'm not applying or anything, I'm just curious. I really enjoyed the book Working, by Studs Terkel. I think I read it in high school (one of the few pieces of required reading that made it through my pot-smoking haze). The author interviews people in all kinds of jobs from an office worker to a prostitute. I love hearing about different jobs, particular ones that I have never done.

What's your weirdest job? Write me and tell me all about it or submit a comment so everyone can read it. I'll get you started.

Lazy Julie's Weird Job #1 (I have many): During my junior year in college, I was a reader for a blind attorney. This may not sound weird on the surface but this lawyer was a bit strange and I had two other jobs at the time. In addition to a full class load and reading for the attorney 3 hours per day, I also waitressed at night and worked at the school paper during the day. I'm not positive, but I think there may have been some overlap with job #4 as an intern at WBUR that later turned into a paying gig.

Needless to say (so why am I saying it??!!!), I was very busy and very tired. Sitting in a quiet office, reading boring legal cases out loud in the afternoon was my down time. Except sometimes I fell asleep. I would wake up when the attorney said, "What?" and I realized I had read something wrong or perhaps stopped reading altogether.

Another weird part of the job was that I had to read newspaper personal ads out loud to her because she was looking for a date. She did not tell her prospects in advance that she was blind. When I suggested this might be important information, she was very defensive. She said that her blindness was not a defining characteristic. My response was, "The fact that I have dark brown hair is not a defining characteristic about me but I would probably mention it as an identifying feature if I was meeting a stranger for the first time."

Weird Job #2: I was a security guard for one day, I think during my freshman or sophomore year in college. I lived in a different city that did not have the best public transportation in the world and I did not own a car at the time. The job (probably one of two or three that I had at the time to pay for college, my apartment, etc.) was working from 6:00 a.m. to 2:00 p.m. on Saturdays and Sundays, "guarding" an empty insurance company. I was issued a uniform that included a little X neck tie, a hat, and a badge. I looked like a meter maid.

On my first day of work, I went out to the bus stop at some ungodly hour in the morning where I thought I would take a bus to the downtown office building. Already waiting at the bus stop was a group of Latino workers. Yo hablo un poquito de Espanol and I managed to learn that there was no bus until 7:00 a.m. on the weekends and the men were getting picked up by a friend who would also give me a ride.

So, I arrived at work in a pickup truck full of Latino men who seemed surprised and confused by my presence, in a security guard uniform with the geeky hat, tie, and badge stuffed in my napsack. Much to my chagrin, the security guard who was training me told me that I had to be in full uniform at all times. I thought he was joking but quickly realized he wasn't smiling when I laughed and said, "Ya right!" My first and last day at this job re-energized my commitment to getting a college education that MIGHT qualify me for better jobs in the future. For 8 long hours, I sat in a tiny security office watching a monitor when workaholic insurance company employees beeped their car horns and held up their IDs to get into the garage on the weekend. We're talking MAYBE 2 cars per hour. I also had to look through a mugshot book of people who I should not let into the building, mostly the former boyfriends and husbands of domestic violence victims who worked there.

Weird Job #3: I gathered old newspapers for an elderly neighbor and tied them with string. Oh wait! That was ARTHUR!

That's enough out of me. Tell me about your weird jobs.

Friday, April 25, 2008

MS News

Every now and then I either happen upon or search for news of Multiple Sclerosis research and treatment. At the pharmacy recently, I picked up a free publication, opened it to a random page, and it was about positive results of an MS drug study. This study was good news for some MSers but not me since I don't take this particular drug. In fact, it mentioned my MS disease modifying drug by name--Rebif--and declared that this other drug, Copaxone, is better. It also talked about brain atrophy. WTF???!!!!

The funny part is, I can't seem to find the study online. Hmmm. I'm not saying the pharmaceutical companies are biased or capable of deception (he-hem, you may detect a note of sarcasm), but is it possible that the study was funded and published by the makers of Copaxone? Now don't get me wrong! I am grateful that the drug companies have created all these MS drugs and I am NOT someone who thinks they are JUST about the money. I know that there are researchers in labs who want to find new treatments and even a cure for MS. I just think, with the kind of money the drug business generates, there's always room for ethically-questionable alliances if not outright dishonesty and corruption.

But I digress.
Searching online today, I found a number of studies that are somewhat promising.

  • This one is specifically about Uhtoff's sign, which I have lots of problems with this particular symptom. They had a good description of what happens to my eyes when I get hot, tired, or have too much to look at (like in a store).
  • A new British clinical trial just started that hopes to find a way to regulate the wonky immune systems of people with MS.
  • I love the idea of an MS Vaccine which some researchers are exploring. I look forward to the day when MS becomes a disease like Polio that is rare and historic.
I need this kind of hope today. My fatigue is back big time and my right leg is achy and numb. It could just be adjusting to the new work schedule and going to bed too late all week. I'm without kids this weekend so rest is on the horizon.

Thursday, April 24, 2008

Restraint of Pen and Tongue

Step 10 says "We continued to take personal inventory and when we were wrong promptly admitted it." In one of my 12-step books, I read something about "restraint of pen and tongue." In another book I learned this acronym: T.H.I.N.K. before you speak. Ask yourself "Is what I'm about to say (or in my case, write) Thoughtful, Honest, Intelligent, Necessary, and Kind?" If not, don't say it.

Why am I posting this little Step 10 workshop? I just received a LOVELY (can you sense the sarcasm) email from my ex that is mean and hurtful. There are people he knows who read this blog and report to him about it. I believe it's these same people who anonymously comment about my "bitterness" and his status as a victim.

Sometimes it gets to me. Sometimes I let it go with an exhale and a smile. Sometimes, I work really, really hard to exhale and not copy mean messages here for all the world to see. Sometimes I get nasty right back. I try not to, though, because it ALWAYS, ALWAYS, ALWAYS bites me in the ass and I get it back tenfold. It's hard because I'm pretty fricken awesome and creative at nastiness. Sometimes, I need to THINK, THINK, THINK before I respond. Sometimes, I have to work really, really hard to show restraint of pen and tongue. Today is one of those days.


What's worse? Blisters or the cure??!!

I have a pair of stupid Payless sandals that I should have thrown in the garbage when I packed summer clothes away last fall. The winter months gave me a case of stupid shoe amnesia and I wore the sandals yesterday to show off my orange-polished pedicure. I would have been fine, if I put on a pair of sneakers before I did the 1 1/2 mile walk there and back to a meeting last night.

I realized I was in trouble about 3/4 of the way to my meeting. I had a babysitter at home and a limited amount of time so turning around seemed ridiculous. I was also pissed. These sandals are not high heels. On the contrary, they are ultra flat. They are leather thong sandals with a bottom part that has no give whatsoever. It's like strapping boards to your feet and then going on a hike.

By the time the meeting was over, I knew I would be in trouble. I didn't know anyone at the meeting well enough to ask for a ride. The only familiar faces were leering men who I didn't want to be alone in a car with. It was bad enough that the meeting consisted of two incredibly boring speakers filling up an entire hour. I'm talking BORING--the kind of orators who can suck the life out of a perfectly interesting story. I will never, ever get that hour back and, in addition to the money I had to pay the babysitter, that meeting cost me the freedom of walking without wincing. Grrrr. I am giving myself major brownie points, though, for making it to the end. I rewarded myself with a Twizzler (ok...3 Twizzlers) from the snack table. The whole no sugar thing has been a big challenge as of late.

So, I walked home, calling friends along the way in the hopes that telephone chatting would distract me from the pain. It did, sort of. I also rested on a wall near teenagers hanging out on a wall across the street. It was funny and brought me back to the days in Junior High when I would walk barefoot with my torn Levis dragging on the ground, tugging my tube top up over my flat chest and washing off my blue powder eyeshadow before I got home.

But I digress.

When I arrived home and relieved the babysitter, I put my feet on the hopes that it would somehow prevent the inevitable blisters. No such luck. This morning, I woke up, put my feet on the floor and yelled. I have very large, very sensitive blisters on the balls of both feet. Have you every tried to NOT walk on the balls of your feet? These blisters are so humongous. Seriously. And I'm not just saying that like how arachnophobes I know always seem to come upon spiders as big as their hands. These blisters are the size of oranges...ok, plums, ok, kumquats. They hurt and that sucks.

It's funny. I have an easier time coping with a chronic, potentially debilitating neurological disease than with blisters. I have literally been whining about it all day.

Oh well. Live and learn. I'm going to go home, throw the evil sandals away, give Ruby and Zane a snack when John drops them off wired and hungry, get them into their jammies and bed, and then soak my feet in Epsom salts while I watch the new Grey's Anatomy and Lost.

Tuesday, April 22, 2008

Random Wishes

Peaceful vibes and sympathetic hugs to Liz, Pete, and the family of Michael who passed away last week.

Heart healthy vibes to Tim and mentally and spiritually healthy vibes to Christina.
A dry night for Zane.

A second day of fun and happiness at April vacation camp for Ruby tomorrow.

Pleasant dreams for the children in my house and the whole world.

Wishes for the knowledge that they are loved exactly as they are to Ruby and Zane.

Many new buyers and sellers for Ken who has the challenge of being a realtor in the current housing market.

Some fine lovemaking for Ken and me.

The ability to let go of the fact that my house is a mess when Ken comes over in a half hour.

Lots of bonding with his mom for Matt.

The shifts she wants and the enthusiasm to learn new things at college for Ally.

Speedy homebuilder and contractors for Laura and Chuck.

Clear lungs for my Dad.

Forgiveness for my Mom.

Peace and patience for John and Anonymous who is VERY protective of him! :-)

And acceptance for everyone else I didn't mention and the absence of guilt for me for not mentioning every fricken person I know and love.

Earth Day Thoughts

Did you know that widening the margin default on printed documents from 1 inch to ¾ inch will save MANY, MANY trees? Check it out. I heard about this go green initiative on WBUR this morning. It was a great story about a bunch of 4th graders who visited the Massachusetts State House to lobby the Governor to widen the margins on all official state documents.

Did you know that ceiling fans consume as little energy as a 60-watt bulb-which is about 98% less energy than most central air conditioners use? And ceiling fans can save energy in the winter as well as the summer. The secret: running their motors in reverse (there should be a switch on your fan). This pushes warm air caught near the ceiling down to where you can feel it.

Did you know that the average bathroom faucet flows at a rate of two gallons per minute? Turning off the tap while brushing your teeth in the morning and at bedtime can save up to 8 gallons of water per day, which equals 240 gallons a month!

Did you know Americans throw away 44 million newspapers everyday? That’s the same as dumping 500,000 trees into landfills each week.

Did you know that recycling aluminum saves 95% of the energy used to make the material from scratch? That means you can make 20 cans out of recycled material with the same amount of energy it takes to make one can out of new material. Energy savings in 1993 alone were enough to light a city the size of Pittsburgh for six years.

Did you know that glass never wears out? It can be recycled forever. We save over a ton of resources for every ton of glass recycled -- 1,330 pounds of sand, 433 pounds of soda ash, 433 pounds of limestone, and 151 pounds of feldspar.

Did you know that we could keep 200 million pounds of plastic out of landfills every year if every American household recycled just one out of every ten HDPE bottles they used?

Did you know that Americans throw away 25,000,000,000 Styrofoam cups every year, enough to circle the earth 436 times.

Did you that the average American will throw away 600 times her/his adult weight in garbage during her/his lifetime.. If you add it up, this means that a 150-lb. adult will leave a legacy of 90,000 lbs of trash for her/his children.

Earth Day is almost over. So...maybe tomorrow, we can use tupperware instead of ziploc baggies for our children's lunches; reuse a plastic shopping bag as a trash can liner; remember to rinse out the empty milk container and put it in the recycling bin; carpool, take public transportation, or ride a bike to work (or to lunch, if you go out with a group); drink water or coffee or whatever you're drinking out of a reusable cup (rather than one made from paper or styrofoam); turn the lights off when we leave a room; read documents and emails on your screen instead of printing then reading; widen our margins if we simply must print; and plant a tree if you have the time...maybe you can just hug one if you're too busy for gardening.

Happy Day, Earth!

Monday, April 21, 2008

Lovin' Pandora

A colleague at my new job turned me on to Pandora Radio and I love it! You can create a customized "station" by putting in the name of a song or an artist and the music will be dissected and grouped with other music that has similar qualities.

New Apartment...?

I think I found a new apartment in Milton. I haven't signed the lease yet but the landlord and I have a verbal agreement. There are three bedrooms (2 upstairs and 1 down), one bathroom (2 would be better but it's bigger than mine now), a front porch, a back porch, a yard for the kids to play in, a washer/dryer in the kitchen (I will not miss leaving the apartment to go to the laundry room and paying $1.25 per wash and another $1.25 per dryer load), hardwood floors, a dining room, etc, etc. The funny part is that it's only one street away from where we lived when Ruby was born.

Ruby and Zane came with me to look at the place which is not usually ideal. (Imagine saying, "No you won't sleep in that bed;" "Please don't touch those toys--they're not ours;" "Mommy's talking, please don't interrupt;" etc, etc. as you walk through a space.) The funny thing is that Ruby, who has not been keen on moving, was very excited to see her future PINK bedroom, the yard, and the place in general.

I'm aware that I once wrote about a Volvo KGB sedan that never came to be which is why this is only tentative good news. Keep your fingers crossed.

Sunday, April 20, 2008

Caffeine and MS

Is it possible I didn't drink enough coffee???!!! According to a new study I just read, caffeine may guard against animals. Ah well. If only I had been as an orangutan or a pigeon and stopped at DD a few more times a day, I might not have MS.

Thursday, April 17, 2008

A Somewhat Poetic Welcome

Welcome, readers, far and near
I love to see who found me here
My disease is worldwide--that's for sure
At least until we find a cure.
You hail from Canada, the States, and the UK
the Middle East, South America, and maybe Bombay
New Zealand and Hawaii are on the list
The cluster map I can't resist
I know you don't all have MS.
You could be anyone at all, I guess
Friend, neighbor, or my grandma
Who knows? Maybe an ex-in-law.
Is your name Neal, Regina or Steph?
Maybe it's Matthew, Andrew, or Jeff?
I bet there's a Liz, Peter, or Paul
A Dorothy, George, Edith or Saul
Whoever you are, why ever you've come
I've decided that I will not succumb
To the fear of what you think of me
I do believe I've found the key
Life is not a pass/fail test
It's take what you like and leave the rest.

Blog on.

Tuesday, April 15, 2008

Let Go!

I know how much I can afford to pay for rent. So, why did I look at a house that is WAY out of my range tonight? Did I REALLY think I wouldn't like it and I would suddenly say, "Oh yay! I must want a smaller, cheaper house to live in!" But, no. I loved it.

It was a single family home that was probably 4 times the size of my current place, had two full baths, 4 bedrooms, a washer/dryer on the main floor, a fenced in yard, tons of storage, etc, etc, etc. And, when the realtor said, "And the price doesn't scare you...?" why didn't I say, "Well, actually, it is a bit out of my range. Is the owner at all flexible on the price?" But, no. I suddenly become Paris Hilton.

"No, no," I said. "It's fine."

Fine????? The whole point of this move is to improve my financial situation and the children's lives by moving to a neighborhood, getting them separate bedrooms, being closer to work, living near church in a good school district, living on public transportation, etc, etc, etc. Would renting myself into bankruptcy improve our lives?????

I came to this realization rather quickly...on my drive home from the expensive house. And, when I got home, I checked Craigslist and saw another house in Milton that IS in my price range, is closer to public transportation, sounds like it's just as big as the one I saw today, and a for-rent-by-owner rather than through a realtor. I called and gave the owner my name and number. She will call me to schedule a time--hopefully over the weekend.

This is a good lesson for me. I didn't sign a lease but I did tell the realtor that I was interested and wanted her to ask the landlord some questions. And, now, because of my impulsive and people-pleasing behavior, I have to send a very embarrassing email saying that, "Yes, in fact, it is too expensive and I'm going to wait until I find the right house in my price range."
I have got to trust the Universe more. I let stuff go (like where I'm gonna live, how I should respond to certain situations, etc.) and try to believe and trust that if I do the work I'm supposed to do (research, etc.), I will be led where I'm supposed to go as long as I listen to my gut and pay attention to the answers around me. Then, I get scared and start taking it all back and thinking I need to make everything happen the way I want it MY time. I forget that I always, always, always end up ok.
This morning, I heard someone on NPR tell the following story...more or less--I'm paraphrasing. It may have been the Pope or the Cardinal of New York--it was some Catholic priestly type.)

A guy falls off a cliff and, on the way down the side of the mountain, he's able to grab onto a branch. He hangs there, terrified that he will fall to his death. He starts calling out for help: "Is anybody up there?"

In response, he hears a booming, Charlton-Hedson-type voice answer: "Let go of the branch," says the voice.

The man pauses and then yells again: "Is there anyone else up there?"
My Higher Power is not a male deity with the voice of an actor turned second-amendment spokesman, but I got a lot out of this story anyway. When I'm fearful, it's hard for me to trust...the Universe and myself. Who knows? Perhaps this guy would have let go and landed on a big cushy mattress that was laying on the ledge under his branch, just inches away from his dangling feet.

I am not hanging off the side of a mountain. I am just trying to choose a place to live. I don't think I have gotten through everything I have had to experience in my life to be dropped on my head while apartment hunting.

Morning Grief

I treated myself to a large iced coffee with extra skim milk and no sugar on the way to work this morning. I only took a couple sips because I wanted to prolong the pleasure during my morning at work. (After all, America runs on Dunkin.) I pulled into the parking lot at work, early and feeling psyched about my day. Then, while I was balancing bags and locking the KGB wagon, it happened. The cup slipped through my fingers.

Genocide is tragedy. War is horrific. Poverty is miserable. But, spilled iced coffee is very, very sad.

Saturday, April 12, 2008

Breastfeeding is Not a Crime

I received this forward from a friend and, since I agree with the message, I thought I would pass it on.

Dear Friend,

Just a couple of months ago, a mother was kicked out of a museum in New York for breastfeeding, a perfectly legal act in that state. Mothers continue to suffer discrimination and humiliation form breastfeeding, even though doctors recommend breastfeeding for all infants. Clearly we need Congress to pass the Breastfeeding Promotion Act now--before more mothers are stigmatized and humiliated for breastfeeding.

But this Act is currently stalled in Congress, and isn't going to move forward without increased citizen pressure. You can supply that pressure.

TO CONTACT YOUR CONGRESSPERSON NOW. And, if you support a woman's right to feed her baby in public, send this link to others who may want to take action to get the Breastfeeding Promotion Act moving forward.

MomsRising members have successfully raised awareness about the need to protect the rights of breastfeeding mothers in the past and can do it again. Last year, MomsRising members and other activists changed Delta Airlines corporate policies when a mother was kicked off a flight for breastfeeding.

Here's the lowdown on the Act before Congress: Sponsored by Representative Carolyn Maloney, the Breastfeeding Promotion Ac (H.R. 2236) would amend the 1964 Civil Rights Act to protect breastfeeding by new mothers by providing tax credits to employers who provide a place to breastfeed and/or provide breast pumps. This makes it a lot easier for women who want to give their babies breastmilk and keep their jobs. As you may know, 82% of American women become mothers by the time they are forty-four years old, so this issue
is critically important to a large portion of our nation.

Boston to Bagdad

In college, I had the good fortune of getting an internship at WBUR--Boston's NPR station. I wasn't a public radio listener before this job. In fact, I couldn't remember the name of the station when I told one of my campus newspaper colleagues about my interview.

During the interview, Bob Oakes, who was the news director at that time, asked me what I knew about WBUR. Because I had two jobs, an assistant news editor position at the college newspaper, a full class load, and apparently I was missing a clue, I didn't do any research. So, there were two possible responses to Bob's question: 1. Lie badly or 2. Tell the truth. I chose the latter and told him that I knew almost nothing but that my friends were very impressed with the fact that I had an interview. Apparently, it was the right answer. Bob told me that his background was in commercial broadcasting and he knew very little before he came to WBUR. Score one for the truth!

I remember he pointed to a pile of resumes that was about 6 inches tall and he asked me why he should hire me. I've often thought my theatre background has not been a waste when I'm in job interview situations. In a tone that conveyed confidence I didn't have, I told him that my maturity, creativity, writing skills, and ability to learn quickly would make me a great asset (or something to that affect.)

Well, apparently it worked. I got the gig and ended up keeping the internship for two semesters and then moved on to paid work at the station. Interns at WBUR are basically junior reporters. We were sent to cover State House hearings, attend rallies and ribbon cuttings, and basically do all the interviews and reporting for news events that either didn't rate coverage by a regular reporter or when they were too busy. Most of the time, I took the train to some event, recorded sound, came back to the station, logged the tape, physically cut the tape (this was the old days), and wrote a lead in and out for the sound byte. It was called a cut and script.

I don't recall all the details of my first day but I know that the very nice Morning Edition newscaster Lisa Mullins, asked me my name (she thanked all the interns on the air), and that the producer, J.J. Sutherland, was gathering sound for the local All Things Considered newscast. He sent me to cover some story and to come back and write a cut and script. I did what I was asked and about 3 hours later, I proudly handed him 2 1/2 pages of copy. He smiled and kindly explained that the entire local newscast wasn't that long. Thankfully, J.J. was a great editor and taught me a lot about writing quickly, clearly, and concisely.

So, why this trip down memory lane? Lately, I've heard several reports about the Iraq war from the NPR reporter on the scene in Bagdad. You guessed it: J.J. Sutherland.

Sometimes, I wonder what would have happened if I stayed in news. I left because I was tired of getting up at 2:55 in the morning and I wanted silly things like a living wage and health insurance. I'm glad I have those things today and I'm glad I'm not in a war zone, but...

I sometimes wish I could get the rush back that I felt when I had to run into the studio with a headline or when a major news event happened in Boston and I got to file a story on NPR. (I was personally horrified when John Salvi shot up the Planned Parenthood clinics to protest a women's right to choose, but it was one of the most exciting days I ever had at work.) Maybe it's time to book another sky-diving adventure or take up competitive barefoot waterskiing.

Friday, April 11, 2008

P.M.S. (Post Multiple Sclerosis, that is)

I divide my life into befores and afters. Before and after sobriety. Before and after children. And now, before and after MS.

I mentioned to Liz recently that a particular night out with Ken happened before I was diagnosed. We got dressed up and went out to dinner at Nancy and Said's restaurant (Alia in Winthrop--it's awesome!) and then we met Theresa at Vincent's in Randolph to go dancing. While I always have fun dancing at Vincent's, I get the feeling that it's filled with all the people who used to roam Landsdowne Street with big hair in the late me. They grew up, moved to the burbs, got divorced, and now go to Marshall's on Saturday mornings to get a new outfit to wear out to Vincent's when their kids are with the other parent. Theresa and I went to the same Marshall's apparently, because we both showed up wearing the same exact dress. And, we're not talking about a nondescript little black number. This was a lime green psychedelic print dress. Theresa said we looked like bridesmaids and went home. I was disappointed and so was Ken. He was looking forward to dancing with two beautiful women dressed in identical outfits. Sort of a Gordon Knight and the Pips scenario.

But I digress.

I remember the timing of this night because I remembered how "light" I felt. When I think back to Pre-MS, I remember a carefree feeling that isn't here anymore. That's not to say I'm never happy or serene. I'm just weighed down slightly. It's like the knowledge of MS is always there and it's substantial...notable.

I'm still in the acceptance process so maybe those sensations will pass. Or maybe not. I can't return to a time that I felt invincible when I know I'm not. I'm also not sure I want to return to Pre-MS Julie. Don't get me wrong: I want a cure, really, really bad. I just don't want to lose all that I've gained with the awareness of MS and my vulnerability.

There was a naivete that's gone now. With it went a lot of fear and caution, too. I wanted to be be a creative nonfiction writer but I wasn't writing (besides work which doesn't go very deep). I wanted to move but I was still living in the same town. I wanted to be a woman who took care of myself but I often put others' needs before my own. PMS Julie is not exactly fearless (and according to anonymous blog readers, I'm also kind of whiny, overly-serious, and negative, too) but I am authentic. I am who I am. I feel what I feel. I am living my life fully right now, instead of looking back and trying to figure it all out. I am willing to risk sharing emotions that I know will pass. I'm not processing in private and then impressing everyone with my growth. I'm trying to grow in real time so I can make connections with others who are also working through it all--people with and without MS.

Along with that authenticity comes the understanding that I may not always be liked or respected for my feelings and opinions and some people may even try to use them against me. You know what? I don't care! I have something to say and I want to say it even if it's not popular or understood. That is so freeing! I've spent my whole life caring (less and less the last decade or so) and MS took a big chunk away in one fell swoop. At 43, I finally realize that the whole world doesn't have to like me and I don't want to expend my energy trying anymore. Thank you MS!

Wednesday, April 09, 2008

Promises, Promises

I know I've made PROMISES before but this time I really mean it. I'm going to write about a whole bunch of stuff I've been thinking about lately...but not now. I've been thinking about Mother's Day and My Public Apology to Mothers Who Came Before Me. I've been thinking about Voting Here and in Africa. I've been thinking about Varied Work Cultures and I've been thinking about Friends Who Forbid Me From Mentioning Them or Their Stuff in This Blog. I've also been thinking about Who Knows About the MS at Work and How Will I Get From the Train Station to My Office if I Go Blind.

I'm still settling into a routine with my new job which leaves me a bit exhausted at night. Plus, although I've PROMISED not to put any of the particulars in the blog, I have a few friends with some pretty intense things going on and, cause I'm an awesome friend, I've been a bit focused/distracted by supporting them with their stuff.

One good friend has a partner who is sick and hospitalized and awaiting serious surgery; another friend has a dying friend; another friend has juicy gossip that I like listening to and living vicariously through; and then there's all the drama in my head that I make up as I'm trying to figure out my new coworkers. My writer's imagination makes me such a cheap date! I don't need anything at all to entertain myself!

Saturday, April 05, 2008

Rooms of Their Own

At the end of the school year, we are moving. We don't have a place yet, but I know where I want to live and what the space needs to have. That's a pretty good start.

I believe, within reason, if I can see it, I can do it. When I quit smoking, got off my lazy butt, and signed up for the Boston to New York AIDS Ride, I visualized myself pedaling my bike into New York City. That imagery made it possible for me to do what needed to be done to get there. When I gave birth to Ruby with no drugs, I visualized holding and nursing my beautiful baby and I got through the worst of active labor. I don't necessarily think if I visualize myself playing tambourine on stage with Counting Crows, that's likely to happen but, you never know. Lately, I've been visualizing a day when I take a pill to slow my MS and there are no more needles three times a week. If I can just get a chemist to do them same.

There are many reasons for this move. Chief among them is that Ruby and Zane need their own rooms. It's becoming increasingly impossible for me to be even a mediocre mommy with them in a shared space, particularly at bedtime. I try to stagger the bedtimes so Zane is asleep when Ruby goes in to bed but that's not always doable, particularly when it's a night that their dad picks them up and they get home late and strung out on sugar. It can take a long time to get them wound down and in their jammies and I feel like a meany saying "no" to a snack, particulary when I'm not sure when or what they ate for dinner. Often, there is way too much yelling and threatening the loss of things that make my life easier like PBS during breakfast. There are tears, I eat too much to stuff the feelings of frustration, I miss critical scenes in Lost or whatever I'm watching on TV, and I often end up having to put Ruby in my bed and then carry/walk by 5-ft. tall 8-year old back into her own bed when I finally retire for the evening. Bedtime with kids sharing a room is not fun for any of us.

Now that I have to be at work at 8:30 a.m., bedtime is very important to me, too. I need to get them in bed so I can do all the night-before activities on my list (including watching TV for an hour and doing absolutely nothing). And, if I'm really honest with myself, I have to admit I need 8 hours sleep a night to think with any clarity and not yawn in the CEO's face during meetings. And, since my children are children, they need at least 11 hours at night and I have to get them up pretty early.

In addition to the bedtime issues, they just need their own spaces. Ruby needs lot of space for her many collections of crap....I mean TREASURES. She also needs to protect her stuff from her little brother who thinks every single toy in the world should be crashed into another toy as quickly and as hard as possible. And, as she is maturing, she needs privacy. Zane, on the other hand, needs room to crash his cars and build train tracks and towers and act out scenes with his rescue heroes.

So, here's my perfect place to live:

A single family or one floor of a two family house
Hardwood floors.
3-4 bedrooms (a guest room/office would be awesome), each with their own closet
Big kitchen with dishwasher and eating space
Washer and Dryer (no coins or cards) in my space
Nice, reasonable landlord
Fenced in yard where the kids can play.
Close to the train
Place to garden or put window boxes on a porch
Off street parking for me and the occasional guest

I visualize walking Zane to bed at bedtime, letting him pick out two books, lying in his bed with him and reading the two books and then letting him read one to himself. Then, I go into Ruby's room, make sure she has finished her homework, and read a chapter from her book, leaving her to read another chapter to herself. Then, I go back to Zane's room, kiss, hug and high-five him goodnight, turn out the light, pull up his covers, and close his door until morning. After a while, I go back to Ruby and do the same, making sure to leave her with a good dream about Super Pepper (our cat) flying through the sky saving people, particularly children. Then, I pack lunches, pick out clothes, and relax for the evening. And then I go to bed and the fairies come and clean my bathroom.

Speaking of cleaning, someone is looking at the condo tomorrow and I have to clean. I don't have enough dishes to throw out the dirty ones (don't laugh--I did this once when I had a 1-year old and a 5-year old to take care of by myself while we were going though the divorce and having open houses to sell the marital homend). My current trouble spot is my room, not the kitchen. It's clean laundry--mostly mine, and papers. I am always tempted to just throw out the piles of papers since they are piles after all so will I really miss a particular item?

Or, I could visualize an organized home where all my papers are neatly filed and all my clothes are hung up in the closet. But Miss Spider's Sunny Patch Kids is over and we have to go buy a gift for Zane's 5-year-old friend before his birthday party this afternoon. Maybe Jake would like a pile of papers?

Friday, April 04, 2008

A Falling Out of Love Story with a Very Happy Ending

Once upon a time, there was a beautiful woman who met a handsome man. They fell in love and moved in together. After almost ten years of cohabitating happily-ish, they decided they wanted to have a baby together. Well, sort of. The woman decided and the man agreed. They got married at the town hall one weekend and a year later they had a beautiful little girl.

They both loved the little girl very much...but each other less and less. The beautiful woman was less worried about the man thinking she was beautiful and wished she could be accepted and respected just the way she was. She also realized that a handsome husband is not always the best husband.

The man and the woman didn't fall out of love on purpose and they did all kinds of stuff to try to get the love back and be kind to each other. But it was very hard. Sometimes they were not kind and they argued a lot...sometimes they even fought in front of the little girl they loved so much. The woman felt very sad about this but she remembered how much love she used to feel for the man. Then she looked at the little girl and thought about how she was born out of that love. So, she kept trying.

The woman pushed all those yucky feelings down and decided that the little girl needed a brother or sister. The man agreed and they had another baby--a beautiful little boy who arrived in the world too soon and too small. The Universe decided the little boy needed to grow and get strong because the mommy and the daddy and the little girl needed him to. And he did. The mommy and the daddy and the little girl loved the little boy very much. And, like Clifford the Big Red Dog, that love made the little boy grow big. There was a lot of smiling at things that the little boy did and things that the little girl said, but the mommy and the daddy did not smile at each other much anymore. Their love got smaller and smaller.

And, then, when the little boy was starting to walk, the mommy decided that she wanted to smile more and live with big love and that it wasn't good for the little boy and the little girl to see a sad mommy and a mad daddy all the time. And even though it made her feel really, really bad, she told the daddy that she didn't want them to live together anymore. So they broke up, the daddy moved out, and he became a single man again.

The mommy was still a mommy, though. The little boy and the little girl lived with her and she cared for them full time and had a full-time job. Then, the mommy and the daddy decided to get a divorce and, because the mommy felt so guilty about being the one to say she felt too sad to live together, she agreed to sell her house and find a new place to live with the little boy and the little girl. So, then, she had her full-time job, her full-time kids, and she had to keep the house very clean every day so people would want to buy it. It was very hard to get out of the house every day without leave chaos behind. The mommy knew that the little girl and the little boy were just being children and children are messy. Somtimes the mommy did silly things like throw dirty dishes in the garbage before an open house.

But, the mommy never, ever wished that the daddy was still there.

And, then, although there was no fairy godmother or magic wand, the mommy and the kids got happier and happier every day. The man just got madder and sadder. He loved his children very much and was happy that they were happy but he did not want the mommy to be happy. He did whatever he could do to squash her happiness even if it made the little girl and the little boy unhappy. But it didn't work! The mommy kept loving her children, growing, and living happily. She even fell in love again, and learned that she didn't have to listen when the daddy yelled at her and blamed her for stuff.

The moral of the story: Too bad blogs couldn't block ex-husbands from reading!

Wednesday, April 02, 2008

MS, Teeth, and Work

I recently learned that Dr.Teeth (not his real name) was honored by the Multiple Sclerosis Society of Massachusettes for his volunteer work in support of people with MS. This is the same neuro-opthamologist at Mass Eye and Ear who patted my hand, talked to Ken instead of to me, and told me I shouldn't read too much about MS because "all that information would be scary." I remember gritting my teeth (that were not quite as white as the doctor's) and telling him that I felt empowered, not frightened, by information. Apparently, he's either cleaned up his act since last Fall or curbed his infantalizing arrogance for the people at the MS Society.

My 3rd day at the new job was my best one yet. I feel like it's a good fi for my skills and my personality. And, I already have a nickname: Pencils. I LOVE IT! After I get into the groove a bit more, I look forward to returning to my former status as a prolific blogger about MS and life. Until then...

Tuesday, April 01, 2008

The Biggest Loser...

...the TV show, not me! I'm watching one my favorite reality shows with Bald Hot Ken right now. I also love The Amazing Race and Hell's Kitchen.

It's the end of a very long, and very good day. It was day 2 at my new job and I feel like I made a good decision to make this move. What a good feeling! I'm loving the shorter commute, too, although the 8:30 a.m. start is a challenge. So far, so good, though.