Our first Oscars

Last night I got to share one of my passions with another of my passions. And it was a lovely shock.

I never expected to get past 5 minutes of the red carpet. Instead, my little big man surprised me by:
a) not allowing me to change channels - apparently ABC has more wide shots than E! and so that's better,
b) making predictions - and good ones, too,
c) by expressing a desire to see The King's Speech so long as I can assure him there are no scary bits, and
d) by forcing himself - quite literally, he was doing the forced blink and eye roll to keep his eyes from shutting against his will - to stay awake until the very last moment of the ceremony.

My Undergrad degree is in Film and Sociology. Media analysis has been a passion of mine since high school. I get a total kick out of deconstruction, and let's face it, I don't so much watch movies as read them. I can't help it. It's what I do. The meaning and rhythm jump out at me. The skill levels of the various people involved are evident, and I often pick up on details that most others miss (like the oranges in Godfather). I am trained to see, hear and feel movies. And I've always loved hating the Oscars.

On Getting a Cane

I wondered at first if it would be more embarrassing to walk with a cane, or to walk like my 91 year old grandmother (you should see us together - it's a hoot!).

I have found that when I go out with my cane, people are way more likely to open a door for me, or let me pass first. It's kinda nice. They don't know why I use it, or anything about me, but they can see that I am not as physically able as they are.

When it comes down to it, my cane makes my invisible illness visible.

On How What Started as a Bad Day Ended Pretty Well

Today, when I woke up, I could not move. When I'm really fatigued, it feels like my wrists are full of lead. Today, it was my whole body. I've been sore, too. Just a general soreness that radiates around my limbs. It hurt to swallow, and my head hurt from the congestion. I barely hugged my boy this morning.

It picked up a little bit with breakfast - my sister made me matzah ball soup - and then I just lay around feeling miserable. My tea got cold because I forgot to drink it. There are more tissues in the house than snowflakes outside. It was a whiny, miserable start to the day.

Until I left the house. I went to pick up my Mom to go to my Doctor's appointment, and lo and behold, as I pull up to the school, one of my students is walking towards the parking lot. It turns out that today, there was a visitor coming in to give advice on what used to be my class. Had I not had this miserable cold, I would have been there to discuss the concept with her. So my day picked up hugely when I got to say hi to my student, the new teacher and the visitor.

And then it got even better. My Doctor has received the report from the specialist at the clinic I visited last month. The 15 blood tests came back normal, with only one indicator that had been there previously. But the best news is that the report says that my prognosis is excellent for a full recovery! My doctor also noted that through everything I've been going through I am in remarkably good spirits. No depression anywhere near me, thank-you very much. Just hope and determination!

Now I am listening to my son as he tests out my new bath-stool. How could my day possibly get better now?

On the Village

It takes a village... to raise a child, yes, but also to make sure he's not totally messed up by his mom's illness.

One of the many ironies of my situation is that while I feel very unfairly treated by my body and the universe (at times), I am inversely feeling extremely fortunate in having the support of so many amazingly generous people.

Right now, apart from my health, mine and my family's main concern is for my son. He misses his 'old' mom, and is sad and upset when I can't do things like play video games (because I get dizzy) or wrestle (too weak) or read to him at night (takes too many marbles - see previous post).

Enter Village.

A normal day: My sister and mom take my son to school and back. I spend my day carefully monitoring my energy levels so I can save up enough to spend on him in the evening. We have wonderful conversations, I make dinner, sometimes he helps, we watch TV, we play... perfectly normal and lovely evenings. Mornings are wonderful now that he's older. A friend recently noted out how happy I must be about the emphasis I placed on his independence in the early years. She is so right. Usually, we do well on our own.

On days like today when I can barely move, It's almost as normal and perfect because I call on the Village Elders: Mom and Dad. Their house is a second home to us. They play with him. They make me tea. They make sure he has company and play time, and I have the rest and quiet that I need. They feed us, and drive us around. And all the while, I can still spend time with my not-at-all-baby. I also have an open invitation to my sister's home, but with her three young ones, it's not as restful. Fun, and entertaining, but not so restful. Still, nothing makes my smile goofier than those three munchkins... but I digress.

The weekends I spend with my son are precious, and I use all my energy to be with him. We dine with my family, we have playdates, and we hang out. The weekends he spends with Dad and Stepmom are respites for me - time to really heal. Dad and Stepmom are an important part of my son's Village. When I haven't been able to drive, they have gone (way) out of their way to get him home. His Dad has even driven into the city to take him sledding on 'my' weekends, which makes me so happy, because I can't do that this year. And last night, Stepmom was kind enough to send along a home-made dinner.

But our Village is bigger than that. My grandmother cooks and bakes for us. And every time any friend writes or calls, my spirits are lifted, which goes a long way in helping me stay focused on the things that really matter. Parents at the school, and even a couple of teachers, have offered to take my son on playdates, or for dinner, just to give me a break.

And here's the thing: I don't want a break. I love being a Mom. I live for it. It is the best thing that has ever happened to me. But being sick has made it more of a challenge. And you know how I love a challenge! Best of all though, this is a challenge I can handle, thanks to the support of the Village.

On Being Home This Weekend

This weekend was supposed to be a special one. I'm supposed to be in Cincinnati right now, with a brilliant group of dedicated people learning about how to create amazing programs for adolescents in a Montessori setting.

I was not supposed to be home, nursing a normal cold which has me completely immobilized.

But I am.

I know I need to let go of the "supposed to's" but the truth is that I can't. Not yet. I want nothing more than to be at the retreat weekend right now. I wish I had never gotten sick and that I were there, enjoying the company of some of the most beautiful people I've ever met, and feeling the energy and excitement that comes from learning really cool stuff. It's hard to be here when I want to be there.

I know I did the right thing in not going, and this cold does nothing more than corroborate that fact. I can barely get up the energy to be typing this right now, and the only things moving are my fingertips. I'm even using my cane inside the house today, just so I can meet my most basic human needs (read: couch to kitchen or bathroom and back again).

The longing I feel to be there, though, it just adds to my determination to heal. It may make me sad right now, but feeling that sadness and regret makes me stronger and I know I am where I need to be. I just wish I didn't have to be here :)

On Losing My Marbles

When I first became ill 2 years ago, I came across this wonderful way of explaining what I was feeling.

You can read it here: The Spoon Theory written by Christine Miserandino

Then I found that there is a whole community that has grown out of this story. There are many of us 'spoonies' out there, and finding them has helped me a lot.

One of the things this community has helped me with is inspiration and encouragement. Another, is finding ways of still being a Mom, and a good Mom at that, while having to count my spoons, or as we refer to them in my house now, my marbles.

I've been searching for a while now for different ways of communicating with my son in regards to my illness. It's not an easy one for most adults to understand, never mind 6-8 year olds. I had told him things like: "You know there are different types of sick; coughing sick, throwing up sick, fever sick, right? Well this isn't like any of those. This is a different type of sick, that makes me very very tired all the time." It helped, but he didn't get it. So it was in communicating with members of the spoonie community that I was insipired to try and share the spoon story. It goes very well with Montessori, being so concrete, that I thought a bright kid like him would understand it. But he wasn't interested in hearing a story about spoons. Sigh. So I almost gave up. But then......... We were about to go brush our teeth, and I saw his marbles, all gathered up on the rug in his playroom, and it struck me!

On Changing Goals

I thought of my students when I decided to start this blog. They hate journaling. I wonder what they would think of this. I miss them. But I miss their thoughts more. I miss the banter and the easy way we had of being together. Mostly, though, I miss the discussions, the earnest negotiations and endless questions, the curiosity and the ideas that exploded in those rooms.

Ultimately I want to get back to Montessori and Adolescents. But that's not my current goal.

My current goal is to increase my health and energy levels. The way to do that is to be gentle with myself. To take each day, or even each hour, as it comes, and to reconnect with my body. It's like I have to get to know my physical being all over again. And that is going to take some time, I think, and lots of patience. It's so much easier to have patience for others.

So this week my goals are: to walk 8 minutes a day; to make some adaptations in my home to make life a little less strenuous; to not feel guilty about not doing anything productive; and most importantly, to make a conscious effort to listen to what my body is trying to tell me at any given time.

On Choosing This Forum

I have conversations in my head.

In them, I discover wonderful ways of communicating, of telling you exactly how I've been feeling. But when I see you, I can't say the words. They get stuck. They won't come out. I'm too tired. We're having a lovely conversation about unrelated things. I don't want to burden you. I don't know if you will react like you did when the conversation was in my head.

So the words stay in my head.

Until I write them down. And that I do. Often. But they stay in my journals, isolated and secreted away where nobody will see them. And I've decided that's not healthy, for them, or for me. 

When I first fell ill, my sister told me to do this. She said, you should write a blog. Get things out. But I wasn't ready. I was scared - I didn't know what was happening, or how long it would last, or even what it was. I hadn't come close to coming to terms with being ill. I thought (I'm sorry, bloggers!) that blogging was for people who have something to sell, some expertise to share, who are narcissistic and want the world to know they exist, or who are looking for ways to memorialize and share things (like my niece and nephew's childhoods).

Things have changed, and I think she's right. So I am taking the conversations public.

I don't know who, if anyone will read this, and that doesn't seem to matter too much right now. I just need to know that my words are going somewhere, and not staying locked up in my head and in my journals anymore. 

Fly little words, fly!