Sunday Night

One of my children who chooses to remain nameless wants me to write about what we are doing right now. We are sitting on the couch in our jammies (jam jams as my MS community friends from the UK call them) watching Dragon Tales on the PBS Kids Good Night Show. We ate a lovely and kid-friendly pasta dinner when the Ruby and Zane came home from a weekend with John and then baked sugar cookies. While we waited for them to cool, I gave the kids baths and then we got to work with the frosting and sprinkles. It's still early so I told them they could have a half hour of TV before we read and they go to bed.

I love Sunday nights when the kids come back from their dad's house. I get a "meekend" (my friend Nancy's phrase--you can also have a "mevening"), get some things done, go to lots of meetings, see Ken and friends, and then they come back just as I start to really miss them. So, every other Sunday night, all three of us are in this very good place--I'm psyched to have them home, they are happy to see me, we eat an early dinner, and have lots of time for snuggling, playing, reading, and whatever before bedtime.

It's hard to hang on to that feeling as the week progresses. I start feeling rushed to get work done for the next day, get lunches packed, clothes picked out, etc, etc, etc. I wonder how I can hang on to the every other Sunday night feeling?

Off to read to Ruby and Zane and put them to bed. More later.

We read Take a Mouse to the Movies, Ruby's Beauty Shop, and When I Get Bigger. Ruby reads one story to Zane now and it's so cute to see them laying in her bed, giggling together. Not so cute when it's an hour later and they are still giggling. I ended up putting Ruby in my bed after an hour of giggling, yelling, getting out of bed, etc.

Talked to my dad today. He asked about the MS and I started simultaneously looking forward to and worrying about Christmas. I know when I see my dad and my sister at Christmastime (the first time since diagnosis), they will be preparing themselves for me to look different. Everyone does. Or seems to, anyway. And, even though they search and search, they can't find anything visibly wrong with me so they assume I'm fine. "You look good!" they say, which under normal circumstances, is great to hear. Who doesn't want to look good? It's just that when people who haven't seen me since I was diagnosed say it, it's like they're saying, "You look good so you must be fine. Phew. No need to worry about you anymore. Thank goodness!" Then, when I bring up the Ms, or even worse, complain about it, it lands like a lead balloon. Splat. Thud. What??? "But you look fine!" their somewhat confused and annoyed expression seems to say. "What the heck are you talking about? Boy, way to milk the MS, Julie!" Or maybe that's just want the voice in my head is saying...?

I do look pretty good today (if I do say so myself, seconded by the dirty old man at my meeting this morning). I weigh more than I would like (which may beg the question of why I ate a triple serving of leftover Thanksgiving sweet potatoes for lunch), but worrying about that seems a bit silly these days. More importantly, I feel pretty good. Even on my worst day, I know how fortunate I am to have MS in 2007 in Boston instead of 10 years ago or living in someplace like Celebration, Florida where I had the pleasure of being treated (and mistreated) after an injury over the summer.

All of what I just wrote is very true and very real...and MS is scary and there are changes I'm still getting used to. I have limited vision that I pretty much accept but is still an adjustment (when someone walks into my lack of peripheral vision, for instance, I get startled when I turn my head and notice them); I have many new fears about the future (when I move into a single family home, should I make it a 1-story ranch, just in case?); various random aches, pains and weird body sensations that get worse if I'm tired, and then there's the whole limited energy thing--the finite number of "spoons" I get on a given day and trying (and failing) to continue my habit of going a trillion miles per hour until I crash.

At my meeting this morning, I heard a guy say (and he was kind of hot so I paid attention) that he believes everything happens in his life--good and bad--for a reason. I don't always know the reason (or if there even IS a reason all the time) but I know that I learn and grow from everything. And, in my case, the crappy stuff brings more growth than the good stuff. Maybe we're all built that way, I'm not sure. When I almost lost Zane, that was a horribly stressful time in my life but I got a lot closer to my higher power and I saw some truths in my relationship that I didn't want to see before. When my marriage ended, I learned that I was way more capable and responsible than I ever thought before and that I could (and am) caring for my children and myself on my own. When I hit bottom with my drinking and drugging more than two decades ago, I was given a whole new life that was so much better than I every imagined was possible. I know that I will thank the Universe for MS. I do already because of how it's inspired me to write this book. I do already because it is forcing me to care for myself. But I hate it, too. Ahhh. Acceptance is such a bi&%$ of a journey, huh? So many zigs, zags, deadends, and U-turns. Maybe there's a shortcut I just haven't found yet?

My personal trials have also taught me the value of unmerited suffering. As my sufferings mounted I soon realized that there were two ways that I could respond to my situation: either to react with bitterness or seek to transform the suffering into a creative force. I decided to follow the latter course. Recognizing the necessity for suffering I have tried to make of it virtue. If only to save myself from bitterness, I have attempted to see my personal ordeals as an opportunity to transform myself and heal the people involved in the tragic situation, which now obtains. I have lived these last few years with the conviction that unearned suffering is redemptive.
- Martin Luther King, Jr.


You never find yourself until you face the truth.

- Pearl Bailey

Knowing what you can not do is more important than
knowing what you can do. In fact, that's good taste.

- Lucille Ball

If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome.

- Charlotte Bronte

I like living. I have sometimes been wildly, despairingly,
acutely miserable, racked with sorrow, but through it all I still know quite
certainly that just to be alive is a grand thing.

- Agatha Christie

The secret of health for both mind and body is not to mourn
for the past, not to worry about the future, or not to anticipate troubles, but
to live in the present moment wisely and earnestly.

- Buddha