Love Song for my Former Self

An old Shakira song came up on my ipod today, and it made me think not of the men I usually think of when I hear love songs, but of my old self. The one I've been grieving. You know, the one with energy to spare, chasing the wind.

El cielo esta cansado ya de ver la lluvia caer

Y cada dia que pasa es uno mas parecido ayer

No encuentro forma alguna de olvidarte porque

Seguir amandote es inevitable.

The sky is tired of watching the rain fall

And every day goes by much the same as yesterday

I can't find any way of forgetting you because

To keep on loving you is inevitable. 
(The translations in this post are literal translations, not her English version, which is linked below, because the words are different enough that I don't know that I would've felt the same way)

Acceptance

Acceptance is not lying down.
Acceptance is not giving up.
Acceptance is not about trying
To do this thing, that thing
Or no thing; nothing at all.
No, it's a rising up
To meet reality.
As it is.
No cushions no bubbles
No blankies no cuddles
No crap... Just Real.
This is it. That is all.
Nothing less nothing more
Than this time this place
This feeling this space
The air that I breathe
That came 'round the world
And into my lungs to fill...
To fill and then dissipate
Ebbs and flows
Never still
Never the same
Just constant.
Ebbing and flowing Air
Sand, Fire, Water
Through the space the place
Where it hits hard
The big emotions
Love Anger Hate
Face it, see it, hail it.
Acceptance follows
With peace and consent
A big yes, calm and content
Yes.
Welcome. Be here. Be now.
Accept.

Pearl Jam's Just Breathe

Again, with the songs. This time, the one that won't go away is Just Breathe, from Pearl Jam's Backspacer - one of the best albums I've ever heard. This is the song Vedder said is the closest he's come to writing a love song. And yet, it's more about the quality a of life than it is about romantic love itself.

Although the song is overtly about dying and romantic love, there are lines that resonate really really strongly, even though my illness is thankfully not life-threatening and I have no significant other.  The song has been twirling more in head recently, as I've been reflecting about how lucky I am to have people to lean on and how much we all share the basic stories, pain and joy that is living (related posts: On the Village, Here's to Good Friends, Everybody's Got a Story, Gracias a la Vida, Celebrating the Bestest of my Best Friends).

I'm a lucky man to count on both hands the ones I love

I'm even luckier than the man in the song, because it would take both my hands and feet, and those of a few other people as well. I've got an amazing network of fantastic people with whom I share unconditional love. It wasn't always so, and it took me a long time to realize that my own actions and attitudes played a big part in my isolation, and are what now draw good people to me. When I started to really examine how I related to other people, patterns emerged, that I worked hard to change on my end. The people I related to had no choice but to allow the relationship to evolve or to dissipate. I am grateful that so many grew with me and allowed me to grow closer to them. And this is a great segue to the next verse:

Clebrating the Bestest of my Best Friends

Last night, I had the gift of celebrating two birthdays (among many actually - there are a lot of March babies in the group of friends that gathered - but it's the two closest to me I specifically I want to write about). I was serenaded by one of the birthday girls during the karaoke part of the evening. She sang me "Cool Rider" from Grease 2, the ultimate in cheesy badness. The other is even more adamant than I about not singing in public.

Today I am happy, filled with memories from a night I wasn't sure I'd be able to have. I did as close to nothing as I possibly could yesterday, planning and preparing for the evening. I was sure I would only last two hours at the most, and that I'd be fully crashed out today. Once again, I am happy to be proven wrong.

Thanks to the thoughtfulness and presence of the two birthday girls, I was able to  handle more than I thought. Gentle hugs, excellent conversation and copious amounts of laughter made it easy for me to stay out past my bedtime. And although it took a very very long time for my sympathetic system to process every experience and disengage so I could actually get some sleep, I feel way less bad than I though I would today.

The Downside of Reconnecting

My mom is away at a conference (I'm so jealous), so the duty of driving the boys back and forth to school was reassigned for the last couple of days. Between the rest of the adults in the family, we've been taking care of it. Yesterday I took the boys to school. I bought coffee from my former students (they run a coffee business as part of the program) and sat with them for a good long chat. I saw many parents and children, and was on the receiving end of a great many hugs. It all made me very very happy. Until I got home.

I couldn't figure out for the life of me why I was in such a crap mood yesterday. I'd had a lovely morning. I wasn't exhausted. I'd seen some of my very favourite people. But even in the sunshine, or playing games... I just couldn't shake it. When I told my therapist yesterday afternoon, she connected the dots for me. I had gotten a taste of my old life, and it revived the feelings of grief and loss.

Today I went to pick up my nephew, and it was a similar experience. I'm sad right now. I'm sad because I laughed with a parent in the parking lot, and because my students were thrilled to see me and were crawling over themselves to show me things and because I love them so much and I miss them terribly all over again.

Priorities

I realized as I walked in the door this morning after taking the boys to school, that there is a silver lining in all this. Well, I'm sure there's more than one, but today I was thinking about priorities, and how our actions reflect what our real priorities are, as opposed to those we think we hold.

Having to make a decision on a daily basis between actions I can and cannot take, really has brought my priorities into very strong focus. When you can only actively tackle two or three things a day, these decisions become simpler. I realize that by tracking my choices, I can see them super clearly. And thus, my priorities are easier to adjust (plus, I have a really really good excuse not to do things that I'm not so keen on). Here is what I've noticed.

The Brain Fog Has Invaded My Dreams

Seriously. Even in my dreams, I am now unable to perform basic cognitive tasks.

I dreamt last night that Eduardo and I needed to go to a plaza, and we decided to go into Starbucks. I got out of the car, but left it running. Got back in, turned it off. Left the keys inside.... Fast forward... we're walking a loooong way home with our drinks, when I realize I don't remember having walked there. I ask him: "Did we walk to Starbucks?"

This has become a recurring theme in my dreams. I keep leaving my car in random places, only to remember when I start to get tired from the walk (because it's usually more than a 10 minute walk if I drove in the first place) or when I realize how far I am from home. Gotta love the strange logic of dreams. The funny thing is that it's never the car I have now, it's always my previous one - the red Saturn. I hope that is a good omen. Maybe all it means is that on a subconscious level I feel like I've left my old car behind? I like that idea better than it being a prescient dream, for sure!

I'm pretty sure the brain fog in my waking life won't get bad enough that I'll try to walk home from anywhere, but I wake up feeling strange after those dreams - like my reality has somehow invaded my dream.

Chaos 3, Cognition 0

I used to be one of the smartest people anybody knew. I could teach an engaging class about almost any given subject, maintain order in a classroom, and always know which of my students was surfing rather than working. Sure, I used to lose my keys, and forget things at home, but I had an awareness of my environment that allowed me to assess and control all kinds of situations. I was able to process a ton of information really quickly, which meant I was able to do it all on autopilot. Not so much anymore.

There are things, normal things, that happen to people. They didn't used to happen to me. They do now, and it's a jolting experience. The only thing keeping me sane right now is that I'm laughing at myself.

I wrote already about the trouble I had figuring out which time was the right one after Daylight Savings came into effect. Well, it seems that my mental acuity continues to lag, and I've been dealing with more and more of this kind of thing.

A couple of days ago, I locked myself out of the house. Really. Literally. Went out, tried to come back in, found I had locked the door from the inside, left my keys and my cell phone inside, along with my coat. After a few anxious moments tugging without effect at the doorknob, I finally conceded that I was an idiot, and asked my lovely neighbour to use her phone. She was nice enough to let me sit in her warm house while I waited for my Dad in shining armour to come rescue me. I can't remember ever locking myself out before (of the garage, yes, the house, no). New experience. Bright side, I got to know my neighbour a little better.

Esto De Jugar a La Vida

I'm on a roll with songs. Lately, I've found that the ideas I've been writing about here are strongly echoed in the songs that have a tendency of sticking in my head.

This time, the one that's running through my head is one of my Dad's favourites: Esto de Jugar a la Vida, by Enrique Balleste (as I just found out - I always thought Amparo Ochoa wrote it, because hers is the only version I've ever heard). My father loves music, he loves lyrics, he loves poetry. I remember sitting so many times and listening to his music, him speaking the words to me, or reading poems together. It was because of him that I became aware of the differences between Spanish and English, in how words are used, how they can be put together. There are some things that just sound better in Spanish. This song has to be one of them.

We used to listen to the whole thing, but the chorus became our "thing." It is what we sing to each other in times of disappointment, or pain.

Esto de jugar a la vida, es algo que a veces duele.

How do you translate that? Something like: Playing this game of life is a thing that sometimes aches. It doesn't read as well. But the meaning is there. Life can be a painful game to play.

1,000 Plus Views

When I started this blog a month ago, I never expected to have so many readers. It was really a means to express myself and maintain my sanity, because I do feel cut off from the world sometimes.

Today, my stats page shows over 1,000 hits. I am awed, shocked, and very pleased. It makes me very happy to have my words mean something to others, and I am honoured that you are reading this.

Thank-you!

Gracias a la Vida

My doctor was a little bit surprised that I'm not depressed. It's a very common co-morbidity with any illness that leaves one housebound. We humans are by nature social creatures. We need the interaction with others of our kind. When that desire is gone, it's a sure sign of trouble. When ability to socialize is taken away, it tends to lead to trouble.

Several years back I realized how much there was in my life that was good. I learned how to be grateful. In practicing gratitude, it became apparent that just by being grateful, I was happier. Taking on the 'attitude of gratitude' is one way of staying positive, and acknowledging my dependence on things and people around me in a way that is not debilitating, but empowering.

When my parents turned 60 and 64, I surprised them both by singing in public (Unheard of. I just don't. I know. I should. But I don't.) - I sang my Mom's favourite song of all time - Gracias a la Vida. Thanks to Life. Today, my mom went off to school with a carefully constructed alphabet costume, which reminded us of that song:

The Joys of Bad TV

TV sucks. In such a good good way.

As you know, my life is a little complicated these days, and thanks to the people around me, I'm getting by quite well. I'm doing my best to do what I need to do in order to get better. But sometimes,  thinking about it is too much, doing anything is unhealthy, and doing nothing is impossible.

Those are the moments when what I really need is a little escape, to a land where chemistry and true love exist (and sometimes we have to wait breathlessly to see it happen), where the good guys really do win (eventually), nobody ever needs to pee (unless the plot requires a heart to heart or a gunfight in the bathroom), and everything always gets wrapped up by the end of 25 or 45 minutes. Aaah. So satisfying, when reality is so confusing, and my life refuses to wrap itself up in any way whatsoever.

I especially love watching shows filmed and based in Toronto. There's something about being able to recognize the setting that makes the shows more appealing. Because, really, lets face it, shows based in Toronto have a slight tendency towards being not quite as 'good' as those of our American cousins. But they're so much fun. Besides, knowing where the characters are connects me to them in a deeper kind of way.

The thing about Canadian TV shows though, at least the ones aimed at adults, is how incredibly unrealistic they are, even though they are influenced by the documentary style that permeates Canadian film. I also enjoy watching the same actors play guest roles in all the shows - there is only so much active talent in Toronto, I guess. Really, though, it just adds to that lively juxtaposition of reality and fantasy...

Hazardous Kitchen

The kitchen is a mess. Understatement.

The dishwasher it seems, has decided to not play nice with the new detergent. The cleanliness of the dishes inside is rather random. The cleanliness of the dishes not inside is nonexistent. The sink is full of what was once warm soapy water keeping the food from hardening on the surfaces of various items that live in the kitchen, and the piles on the counters are becoming rather precarious.

I think it must be time to do something. Before the groceries come. Before the people in the hazmat suits arrive to accuse me of creating a bio-hazardous environment. Of course, that means my shower will have to wait. Maybe the hazmat suits will show up after all.

Luckily (or more honestly - it's because I'm kinda smart that way), my kitchen is arranged in a very user friendly manner. Originally, I had all the daily use stuff on open shelves to provide easy access for my son, with the goal of fostering independence. Now, it turns out, it has fostered my independence!

Daylight Savings Vent

The last few days I've had really bad brain fog - mostly due to a cold. The dysphasia (impairment of the power of expression by speech, writing, or signs) is bad (if you know my writing style well, you should be able to see the difference today). Calculations are impossible. And Daylight Savings, that *$(!*#&@%()#$ change of the clocks, has made it almost impossible to think clearly in any way whatsoever.

I've noticed it in the children I've worked with - their inner clocks are off, they're tired, cranky and they get hungry at the wrong time. It takes a few days for them to adjust. Our bodies, being organic in nature (duh) don't shift ahead an hour just because the clock says so. They do shift with natural daylight changes throughout the year - ever notice how gradual those are?

Yesterday, I woke up, came downstairs, did a few things, and then filled in my pacing chart. And I thought I'd lost my mind. There was an hour and a half between the time I'd woken up and the time my computer showed. But there was no way I'd spent that long making breakfast and checking my e-mail. But, with the brain fog and all, I thought - wow I must have spent way longer than I thought. Then a friend posted the reminder on Facebook. Ah, Facebook, how did I live without you? And I slapped my forehead and said - ok that all makes sense now, and proceeded to change the clock on my computer. Backwards. The wrong way.

Everybody's Got a Story

I'm not an Amanda Marshall fan. Never have been. But the chorus to this one song of hers just moves me so deeply...

So you can see my bra underneath my shirt
Watch the wind underneath my skirt
But that ain't the picture it's just a part
Everybody's got a story that can break your heart.

See my eyes, don't see what I see.
Touch my tongue, don't know what tastes good to me.
It's the human condition that keeps up apart,
Everybody's got a story that could break your heart.

The invisibility of my illness - the constant comment "you look great" "you don't look sick" "I'd never be able to tell by looking at you" - really brings this home for me. You can't tell by looking at me how sick I really am. Not unless you really really know me, and are really really observant. If you can see the slight lilt of my head, or the stillness of my hands, or the tiny slump in my shoulders that aren't there when I'm feeling good, then - and only then - is it visible. Otherwise, you can't see it.

And I'm sure as heck not the only one

the day you realize

the day you realize your life isn't what you thought
that the sunshine doesn't last
that the rain will always come
is that the day it starts?
is that the day you start to hope
to yearn for things you never knew you had
to fill every moment with songs and scattered lines
and poems you forgot you knew
to know how love and living are melting sorrows and joys and moments.
is that the day? the day it ends? the day it starts?
---
These words came to me last night, unbidden, from goodness knows where. I thought I'd share them. I like them. They are a little bit lonely, which moments of revelation can be. They speak to that moment of clarity - that one in which pain and hope are one. The one in which the questions are the answers. In which the seeking is the goal. When these things are united, I am far more powerful.

Planning for an Unsure Tomorrow

There was an interesting thread on the forums I follow, about how people with chronic illness plan for the future. It's a tough one. Being still in the early stages of diagnosis and grief, I'm not really there yet, in terms of long-term planning.

I may set weekly and daily goals, but how could I possibly plan any further, when any little thing could possibly cause a crash?

One of the things a cyclical chronic illness like mine does to a psyche is create fear, and erode away at confidence. Confidence? Yes, the very basic confidence you have to walk down the street knowing you will be able to walk back home. The confidence that you will be able to empty the dishwasher and take a shower on the same day. Or that you will be able to attend your best friend's birthday party at the end of the month, and still be able to make it to an appointment the next day. My confidence in my body's ability has been shaken - hard.

So what to do? If you know me, you know how stubborn I am, and how I am unable to say no to a worthy challenge. Well, this is a worthy challenge indeed.

blabbiddy blah grey skies

The weather here is so Scottish it's depressing. It's been gray and rainy for a few days now, and I can't get outside for my walks. There's no sunshine. No initiative to get up and look outside. Just blah. And we're not even in Scotland. If I were, I'd be happy to be there, just to not be here, and to revisit the hallowed halls and not-so-hallowed pubs of my Uni days.

So again, I say: blabbiddy blah gray skies. Blah.

When's spring coming?

Denial and flow

Today I was in denial. I was also in flow.

Flow is that state of being in which time is lost. It happens when we do something that hits the perfect balance between ability and challenge, which we enjoy doing. It's a moment of creativity and pure engagement. It is followed by a sense of satisfaction and peacefulness.

I was there today. And I got lost in the flow, didn't realize my body was getting tired, because of the lovely feeling of engagement. I sure felt the satisfaction, but my peacefulness was marred with the harsh reality that as soon as flow ended, my brain keyed into the ache in my muscles, and the pressure in my head.

Oooops. One step backwards. Many forwards to go!

Grieving Myself

It sounds weird, doesn't it? But that's exactly what I've spent the last couple months doing. Grieving myself. Grieving me past activities and abilities, the loss of opportunities and especially the careless confidence and self-sufficiency that had been mine since Casa (that's preschool for you non-Montessori people out there).

If you are not a spoonie, you probably don't think twice about everything you do every day. I know I didn't. I never worried that I wouldn't be able to make it home if I walked further than usual. I wasn't concerned about stairs. The noise in the mall never bothered me. I didn't consider easy access when planning where to put my pots in the kitchen (actually, when I moved in, beneath the oven was easy access). Today I worry about all those things and more.

Do you remember me? Always the last one to leave the party. Always the first to suggest the party in the first place! The one running around and rolling on the floor with all the children all the time. The one who did 4 different jobs at once at the school, without a desk. The one who could command the attention of 60 students and make them in sing in 3-part harmony. The one who so enjoyed long walks on the weekends. The dancer (any excuse - really). The hand-talking opinionated arguer. The guitar player, sort of. The great believer in retail therapy. The yogini. The one who would take any excuse for a road trip, or any kind of trip, really, let's be honest.

Here's to Good Friends

Having worked for the last 5 years in a place where I had no choice but to interact with 100 children and their families, along with another friendly 20 staff members on a daily basis, I never had to worry about isolation, or feeling socially deprived.

Having been at home for two months now, interacting with family only on a daily basis has given a new appreciation for my friends (and family of course).

I'm finding now that I have to make an effort to not isolate myself. It is so easy to just sit here with my laptop, and not talk to anyone. But it is so not at all good for me. A doctor writes that being isolated with this kind of illness can lead to some serious consequences; anxiety, depression, and, when finally coming face to face with the world, panic attacks. I came close once at the dentist - had a lovely little anxiety attack when I had to wait too long in a crowded waiting room.

Today I Went to School; I learned how to be wrong (and about balance)

A critical piece of learning to handle chronic illness seems to be finding balances. Today I learned that I am able to do more than I thought. Isn't it wonderful to be wrong?

This morning, I woke up with lead running through my veins. My sympathetic nervous system took over and I started going over all the things I've already done this week in my head - yesterday I had three full outings, all before lunch - and wondering if I was crazy for planning a meeting today. But I really wanted to go, so I swallowed, tried really hard to not be too impatient with my son and nephew, and made it to school. I was meeting with the teacher who has taken over my class. But first, I had to stop and buy my coffee from my students.

Being Productive vs. Just Being

According to a leading doctor who literally wrote the book on my condition, I should aim to be not a human doing, but a human being.

Did you know that watching TV and reading actually burn calories? Not many, but still. Her point is that even watching TV and reading are activities. They are something to do. Something that engages the brain, and requires some level of energy consumption. Therefore, they are not the ideal activity for someone like me who has to be so careful with energy.