Garden Desire

Since moving into my house close to two years ago, I have enjoyed my garden immensely. It is small, bordered by a low-ish brick wall, and features a curving path, a raised patio, and is just altogether lovely. The people who lived here before the previous owners designed it and cared for it well. Unfortunately, their successors did not care for it quite so much.

Shortly after moving in two July's ago, the heaving and hauling began. I removed a bush of burs - I don't what plant it actually was, but it was not welcome any longer - that was two feet high. I pulled and lugged at crabgrass, dandelions and all kinds of other overgrown plants. I enjoyed the roses, and lilies, and wondered whether or not to trim the bushes down.

I spent quite a lot of that first summer in the garden, mucking around and finding all the remnants of the plastic flowers (and grapes) the former owners seemed to love so dearly. It was lovely, to put my energy into something that gave me so much. Last summer I was away for 6 weeks, but I came home to pull weeds and trim down plants. Even more lovely!

Learning to Be Me All Over Again

I just finished watching this week's Glee. Don't know if you saw it, but it was all about embracing those things we do not love about ourselves, or have caused us difficulty. It got me thinking...

I've written about grieving for my past self. I've written about rough patches, and how I'm coping. I've expressed my immense gratitude for people and things in my life that have helped through everything. But maybe it's time for me to refocus on who I can be, and who I want to be.

I know I still have at least another year or two before I can say I'm fully recovered, if that time really ever comes. So for now, I can't be the outer things I was or still want to be - but that's only a little limit, right? I still am. I still think, therefore I am. I still breathe, eat, drink, love, read, observe, play, sleep, hope, philosophize, laugh, dream and do all the really important things in life. And I write, and write and write.

Vent After a Sleepless Night

Today is shaping up to be a full-out self-pampering day.

The following paragraph is not for the easily grossed out - reader beware.

Last night was rough. My little guy was up 4 or 5 times with a cough. The problem is, that he has such a strong gag reflex that when he coughs deeply, his stomach contents have a tendency to erupt unceremoniously. Poor kid. Last night, it even came up his nose. So him waking up coughing means that I have to be up with him, holding the bucket, or wiping his mouth, and then rinsing the bucket, and holding him while he dry heaves over the toilet because there's nothing left. At one point he felt so bad, he even called his dad and stepmom for added comfort.

Here's the problem from my end: hard enough for me to sleep lately without a sick child. It's also hard for a healthy parent to sleep with a sick child. Put the two together. There's me. Right at the bull's eye of the double whammy.

About My Son, Hope and Pride

I know every mother thinks her children are special. I'm no exception. Except that everybody else seems to think so too. I am constantly flooded by validation from outer sources, so I feel less like a braggart and more of a realist. I hope this is how I seem to everyone else, but really, whatever. My kid rocks :)

Last week, I had several opportunities to see him in action in different, out of the ordinary circumstances, and what I saw - well - it moved me. Deeply. It confirmed what his teachers have always told me, and made realize just how much he's grown up in the last little while. It also made a bigger Montessorian (if that was possible), and increased my appreciation for the immense effort I, my co-parents, and my own parents make to work together on his behalf - his village is as active as can possibly be.

As a teacher myself, I know that children at home and children at school can be two entirely different people. I also know that children of split homes tend to have more emotional issues, as they have to adjust to different expectations, not only at home and school, but between homes as well. In each setting they have different roles to fulfill, and different relationships to play out.  I remember once telling the parents how wonderful their daughter was, and they were shocked, because she was so demanding and difficult at home - at school, she and her sister switched roles. Completely.

So when the teachers tell me that my son is a confident reader, for example, I take them at their word, even though he refuses to read to me at home. I don't push him to do it, because I know he does it at school. He reads chapter books - our favourite new pastime is reading together - we sit together, he reads his books, I read mine. I love it. But he never reads aloud at home, beyond cereal boxes and such things. Now, this is a child who started reading late - he was almost 7 when he really got going, and there was concern that he would not read well. 

Imagine please then, my shock when my nephew, who's 3 years younger, showed my son a book about looking for the afikoman, and my son offered to read it for him! He proceeded not only read fluently, but with beautiful inflection and expression, and I was blown away. A bigger shock came at the second Seder, when I casually asked him if he wanted to read a portion of the haggadah, and he just did. I fully expected a shake of the head, but he just jumped right in, nice and loud, and confident, and again with the expression and inflection. Wow! And this is at the very formal table with adults he had never met. Wow.

A Surprising and Productive Day

This is Easter Weekend. My son is at his dad's. Has been since Thursday. Won't be back until tomorrow. My parents are taking a well-deserved long weekend for themselves somewhere not too far from the city (I honestly don't even know where). The two Jewish friends I count on for days like these are away for Pesach. Most of my non-Jewish friends are family-holiday-busy. So I figured I would have a very quiet, kind of lonely weekend punctuated by brief visits with my sister and her brood.

On a whim, I e-mailed a friend whose family is out of town, but figuring that either she'd be there, or they'd be here. Well my lucky day! Riley was free! I suggested coffee. I never bargained for what I got... but then I rarely do when she's involved...

She took into account my limited capabilities (the air pressure was really low yesterday morning, and my head was spinning when I woke up) and planned an outing to a place with underground parking and elevators (yay, elevators!). She also thought to make sure we could eat, which is good, because I had not considered the time of day, and was actually rather hungry. Yes, she is a good friend, and that's why I keep her.

At lunch, I mentioned having to pick up some supplements, and she mentioned a nearby store. And off we went for a walk. It was longer than my usual walks, but so lovely, to be walking somewhere other than my block, and on a sunny, warm, beautiful day (the air pressure eased up a bit throughout the day). It's a very lively area of town where she lives, and it was really nice to be around so many people for a change, and feel the energy of the city coming out of hibernation.

The Most Evil Word in the English Langauge

Lately it's been coming up a lot - and I've been trying really hard to purge it, but it keeps coming back.

SHOULD

It's the most distancing, most unachieveable, most depressing, most negative and most tenacious concept there is. If I could draw horns and a tail on it, just to further my point, I would.

Recent conversations have really brought my attention to how I use it. I should be happy. I should lose weight. I should clean my car. I should, I should, I should. It's so vague, and judgmental. And the other day, I almost kicked myself for using it with my son. It's the last of the patterns I want to pass on to him. The worst though, is when I think "I should be well by now," because it simply is not true, but saying it that way makes me think badly of myself and my situation.

Think about it - every time we use the word should we remove ourselves from our current reality. We refuse ownership of the situation, and place someone else's - the elusive "they" that say so much - values where ours rightly belong. Here's an example from my drive today - this is truly a conversation that really did happen in my head:

Happily Worn Out

I did it! I made it through both Seders. Ok, they were super-express seders. And I did take a while for myself after dinner on each night. And today I am beyond exhausted. But it was totally worth it.

This year we had a truly Montessori-style seder. No kidding. My mom and sister set it all up. They set two beautiful child-size tables in the living room, and the adults sat around the children on the floor, couches and chairs. The children led the blessings, and totally hi-jacked the telling of the story of the exodus - it was hilarious. All I got was that Pharaoh changed his mind, and that there were horses (I'm not even sure if my nephew was referring to him changing his mind after the plagues, or after letting them go). All seven of them, ranging in age from almost 2 to 13, were all on their best behaviour, and absolutely charming. They then ate their dinner while the adults who are not attached to younger children went to our own beautifully set table. The afikoman hunt was never-ending, as they begged for it to be hid over and over.

Anticipatory Nervousness

Tonight is the first Passover Seder and I have to say that I am a bit nervous. There will be 23 people, 7 of them children, gathered in my parent's home. These nights get loud, are very social, and really involved.

I haven't been in this kind of situation since my relapse, and I'm worried about what to tell people, about the noise level, and about having to possibly disappear for periods of time. The sensory input will be very very high, and that is still one of my bigger triggers.

The good thing is that I have recourses. It is my parent's home, so there are bedrooms where I can take my laptop and close the door to the noise and motion. My car is here, so at the worst case, I can always go home. But I'm embarrassed about the possibility of having to do that.

Strength through Weakness

Not being medically or scientifically trained in any way, I don't know the statistics. But I would bet that if a proper health census were taken, we would find that there are more ill people than healthy ones. And I don't mean ill in the sense that I'm ill - I mean all kinds of things - diabetes, cancer, heart murmurs, strokes, depression, crohns, celiac, cholesterol... there are so many ways that our bodies can and do malfunction.

So why so much stigma around illness, especially invisible illness? And when you think about it, aren't most illnesses, ailments and diseases, including all the ones named above, invisible?

Sociologically and anthropologically speaking the stigma makes sense. Illness is weakness, and not too long ago, we would have slowed down our tribes and/or threatened the safety of the group. I get it. But not so much nowadays. I think the fear that surrounds illness, much like wisdom teeth, is no longer useful and as such needs to change. This post is not an academic argument - I don't have the energy for that ... more of a venting of the frustration I feel at knowing why this is so and that it is slowly changing, but not fast enough for my liking. It's also an attempt to help the change along. Nudge. Nudge. Nudge. Any changes yet?

Up Down Up Down

Another day, another song. Blue October's Jump Rope.

The first time I heard this song, I cried. Seriously. Let me put it in context. I'd been in Cincinnati for about a week, getting started on a 6 week training course - the longest I have EVER been away from my child. There was an instant connection with several of my colleagues, and the group had really started to gel. Being a Montessori training, there was certainly an openness to the experience, and more than a little bit of the touchy-feely to go around.

The previous night, my son had called me, because he was taking his first trip overseas. 7 years old, and on his way to beautiful Scotland with his Dad and Stepmom. Needless to say, I was a bit off kilter, emotionally speaking; as I walked into class that morning, it was with the all-too-present awareness that my baby was somewhere over the ocean, on his way to a great adventure. The butterflies in my stomach didn't stop flapping until he called again later that day, safely landed on the other side of the world.

Why I'm Blah About Good News

I went to see a specialist at "The" clinic yesterday. It went well. My mom came with me, so her questions could be answered and because, generally speaking, two brains are actually better than one, especially when one is not processing things quickly. Good thing, too, because my brain was not agile enough to make the connections hers did, and when I started feeling down, she was able to tell me that all we got was good news, which is why I'm writing this now - to try to turn myself around.

The doctor was kind, remembered me, and basically said I am doing everything right. There's a couple more supplements I could be taking, but things are going as well as can possibly be expected. We are on track with her prognosis for a full recovery. Good news, right? So why do I feel so blah about it?

For starters, I was tired by the time I got there, because they neglected to tell me they'd moved within the hospital to another building so between the stress (minor) of getting there, and the longer walk than expected, I was toast. I even snapped at the nurse when she was less than kind. Ooops. Not really. She deserved it. All of that automatically put me in a bad frame of mind, which I was able to stabilize somewhat when I was with the doc.

She said stuff about cortisol and haemoglobin, and thyroid hormones. She answered all my Mom's questions, most of them before they were even asked. She was cautiously encouraging, as all docs are with things like this. Bottom line: the prognosis is still good - by avoiding a major crash I could come out of this fully. My energy levels are fairly stable. Emotionally I'm great. But I left there feeling extremely fatigued, which affects my mood, but it was more than that; I felt dejected.

Uncommon Commonality

I recognize that through my illness I have grown as a person, and I have learned a great deal - about myself, life, the value of health (oh how I treasure the good moments) and the common elements in all our lives, as well as the differences.

The other day, a woman with whom I spent some time last summer at a Montessori middle school wrote me that someone close to her is dealing with chronic pain and illness. An old friend confided that she has been dealing with chronic pain for years. Another is in the process of being diagnosed with Fibro. I can't count the number of people I know on anti-depressants or anxiety medication. Every day, I read on blogs and forums the stories of people who are in similar situations. And it makes me realize how common it is to be unwell (although the stigma remains) how valuable we all are, and how fragile.

Rough Patch

I know that I'm supposed to have them, but it doesn't make them any easier. At times this past week, when I'm on my own (pretending he's beside me, all alone... ok, not really, just can't help myself) I've been feeling really rather blah.

I'm tired of TV. Can't find shows to suit my moods. Games are annoying because either I'm foggy and keep losing, get tired fast, or spend too many of my good moments on them. I'm lonely, but I don't want to be with people. I'm tired of being tired. And I just want to whine and feel sorry for myself. Or sleep sleep and sleep some more.

Then I think about it, and no, I don't really want to sleep, because that won't help me reach my goal of getting better. And neither will self-pity. So nix the whining, and get up off the couch at regular intervals.

Un-Lazy Day

I did nothing productive today. And yet, I did do plenty, for me. I managed to empty and refill the dishwasher, go to the library and make myself a proper dinner. I even got a bit of knitting in - then I realized I goofed, and am in the process of undoing a couple of rows. Bah.

A lovely friend of mine wheeled me around Ikea earlier this week, and we picked up a couple of things to make my life easier. One is a folding bar stool. Which I have yet to fold. It sits quite happily in the middle of my kitchen, ready to accomodate my bottom at any given moment. It's wonderful!

I can now actually do some light meal preparation. The double whammy of standing for an extended period of time and moving my arms was just too much. But now, I can sit while I sautee, or spread jam, or even - gasp - scrub the tougher dishes in the sink. It seems like a small thing, but in my world, it's huge. My kitchen is back under control. You can call off the haz-mat team.

Adaptability

My therapist told me recently that I am highly adaptable.
It got me thinking.

Since high school, I've written and talked more than enough about how having been a Montessori child has been a benefit to my life, in terms of my academic skills, my love of learning, and the deep respect I hold for myself and others. But this gives it a whole new spin.

Dealing with sickness the way it has hit me these last couple of years - the ups and downs, the loss of faith and ability, the depth of grief and the slow climb to acceptance, and of course the daily struggle to not only function but live in a way that makes me feel my life worth living - has forced me to change the way I do things, and the way I think about things. There's the challenge, and I'll quote Dr. Montessori: "adapt, or die."

Granted, she was talking from an "evolution of the species" perspective, but it still applies. Boy does it apply. If I didn't adapt my lifestyle, I'd drive myself into the ground, and quite possibly push my body until it really did stop functioning - like that November day that I literally slid down the wall and couldn't get back up, only maybe even worse. If I didn't adapt my way of thinking, I'd be a very angry and depressed person right now, possibly even suicidal, which given a choice, is not how I want to be.

No Regrets

I'm having a rough day. I can barely move. I want to sleep all day. I overdid it yesterday, and today I'm paying the price.

The song that's running through my head today, keeping me sane, and reminding me that guilt is a useless emotion is Robbie William's No Regrets.

No regrets they don't work
No regrets they only hurt
Sing me a love song
Drop me a line
Suppose it's just a point of view
But they tell me I'm doing fine

It's funny, because when I saw my doctor last week, she told me to remember that setbacks are a normal part of this illness, and not to get down about them. Today has been a huge setback.

Do I regret it? No. What I did yesterday was totally worth it. I saw a good friend who's going through a rough time. Met some interesting people through her. Was enjoying myself so much, that I lost track of time, and only realized how long I'd been out when it was already too long. Is that a bad thing? I don't think so. I think it's a good sign, actually. I think by not focusing on my condition, and behaving like a healthy person would under the circumstance, I forgot for a little while just how sick I really am. There was a moment in time that I could be healthy. It felt great.

Mamasick and Me

Today I have the honour of being a guest blogger at mamasick.com; an established and popular blog run by Emily, who I met through some shared conversations at a wonderful forum for the chronically and invisibly ill.

It's been an interesting process, writing for someone else's site. When I write for here, I don't really think - I just go. The words flow, because I only write when they come to me. Emily's offer to guest-blog came after I made a comment on one of her posts. She asked me to elaborate on the idea that, anthropologically speaking, it makes perfect sense that we stare at people in wheelchairs.

Expounding on anthropological factors and evolutionary theories is certainly not new to me. But writing about them on a personal level, that is approachable and un-serious is a whole new experience. I actually found it quite difficult. Emily was supportive, and helped edit out the more academically leaning sections. But really, wow, what an interesting experience.

Now, go to mamasick.com to read what I wrote!