Sunday, January 31, 2010


I read a lot of inspirational stuff, and...I honestly try to inhabit each moment in my day fully, peacefully and with an abundance of gratitude, but this week I've been stuck.  

I feel trapped by my body; trapped by my cells; trapped by my environment; trapped...period.  It's hard to breathe when you feel this way.    I feel so trapped that I don't even have anything insightful to write about feeling trapped.

I know what I want, and it isn't THIS.

I want to be well.
I want to wake up every morning knowing it's gonna be ok.
I want to never have to call an ambulance ever again.
I want to be able to go out with ffamily/friends and not have to worry about someone's perfume or a piece of dust potentially hurting/killing me.
I want to drive a car.
I want to be able to take myself out for breakfast on a Sunday morning.
I want to never feel those all over 'body migraines'.  Pain sucks.
I want to sleep peacefully, without pain, anxiety or restlessness.
I want to never feel like a bear or 10 tonne boulder is sitting on my chest.
I want to be itchy free.
I want to be full of abundant energy.
I want my tongue never to know what tingling or swelling is.
I want to go a whole week without vomitting and gut pain.
I want my children to have their Mother back, in ALL capacities.
I want my husband to have his Wife back.
I want never to need this kind of cocktail of drugs just to keep me out of hospital.
I want white skin that never blotches or flushes.
I want to travel.
I want to take a bus, train or plane without fear of anaphylaxis.
I want to deal with paperwork that has nothing to do with ME and this failing body.
I want to be able to breathe all day, every day, without restriction.
I want to feel useful.

And the biggest 'want' that ALL people with Mast Cell Disease or Systemic Mastocytosis want...I want the old 'me' back, or some of it.  And I want to stop wanting that because it can't be healthy, productive or useful.

I want to stop resenting people with 'normal' lives. It's the simple things that you miss when you lose them...

I want to stop explaining myself to people.  Explaining Masto is exhausting.  My God, there are soooooo many other beautiful things to talk about and think about.

And, finally, I want to be free.  

Stuck is a lonesome place to be.  And in the middle of nowhere, with no driver's license and nowhere to go (and invites that you can't go to because they are high risk & your body isn't co operating)...well, it's hard to see the beauty in that, despite my best efforts.

See...stuck.  The roller coaster of Masto...up, down, up, down, up, down....

Sunday, January 17, 2010

home-grown Hero

Last night, my daughter was quite sick.  A tummy flu bug that's hitting all the neighbourhood little people. This afforded me night watch nursing duties and the opportunity to snuggle with my barfing babe.  During one of the interludes when she wasn't wretching into a bowl or a large saucepan, or screaming with gut pain, she gently turned to me, held my head and out of the blue, said:

"Mom, you're like Rick Hansen."

"I am?" I replied, quizzicly (and wondering if I should check her temperature one more time...which had been normal, despite all the tummy trouble.)

"Yah," she replied, "DID you know that Rick Hansen lost the use of both of his legs in an accident?"  I nodded. "Yah, well, he did.  He woke up to find he couldn't use his legs and his doctors told him he'd be no use to anyone ever again because he couldn't use his legs! And you know what he did?  He didn't believe them, he said "NO!" and he got right up and got in his wheelchair and he started wheeling across the country.  When his doctors told him he wouldn't walk or doing anything ever again, you know what he did?  He said, "No, I'm gonna carry on!!!" and that's how you're like Rick Hansen, Mom, because when your doctors told you that you had Sys, Systam, oh, Systemic Masotosis, no Systemic, you know what I mean, you got right up and said, "NO, I'm gonna carry on!!!: You didn't sit down and cry and feel sorry for yourself and think it was all over.  Nor did Rick.  And you do, you keep trying to do 'normal' stuff that other people do even when you can't, but you try, and you try to make life as normal as you can.  So, I think you're just like Rick Hansen because you both were told by doctors that you can't live your lives the way you want to and both of you said "NO! I AM going to live my life the way I want to."  So Mom, you're like a Masto Hero just like Rick Hansen is a parapalegic Hero.  Your my Mommy Hero!!!"  And she squeezed me like she was loving me to the moon and back times infinity to googleplexes and back.

I was speechless.