....and then it was May.

 It's been a while, I know.

I'm taking an unofficial hiatus from writing to sort out my priorities.

Between, work, school and home life, volunteering, and choosing a grad school or a second degree program, writing has taken a semi permanent position on the back burner.

I've realized a few things over these past few months and have drafted up some soon to be stellar posts and will share as soon as things slow down.

In the mean time, we are gearing up for the 2013 Halifax MS Walk and Team Gracie's Mum is in fine form to do well in our fundraising efforts! This year our team is an eclectic mix of family, work friends, former students and current students. I am honored to be leading this amazing team and my heart is warmed at the fact that they are all in it for me and my cause.

This past weekend was Mother's Day and I was spoiled as usual (in the form of a brand new boogie board) but was under the weather with a laryngitis inducing wicked cold so I slept most of the raining Sunday away.

Thankfully all that sleeping brought back my voice in time for an interview with Global Halifax, yes the TV station, promoting MS Awareness month, this blog and Team Gracie's Mum.

If you are in the Halifax area tune in tomorrow at 6, 7 or 8am to watch me and Grace or find us on the website after the broadcast is uploaded.

In the meantime, love each other and the beautiful sunny days ahead!



©2011-2013 Gracie's Mum: A Story Of A Mum With MS

Resilience

The inspiration is in the music. Press Play.

Instead of participating in some sort of self sabotaging, set up for failure like a New Year resolution, I prefer to set up a theme for each new year, a tradition I started as we went from 2010 to 2011.

For instance, easily, 2010 can be filed under Recovery; 2011 under Rebirth; 2012, proudly under, Redemption. I’ve decided to file 2013 under Resilience. That’s what 2013 will be.  Review the definition with me:

re·sil·ience  n.

1. The ability to recover quickly from illness, change, or misfortune; buoyancy.

2. The property of a material that enables it to resume its original shape or position after being bent, stretched, or compressed; elasticity.

Point number one – no brainer.

With regard to point number 2, yeah, I’d say I’ve been bent, stretched and/or compressed over the past 3 years. And although I’m back to ‘normal’, you know, whatever the hell that means, I’m in a better place than I was 3, 4, 5 even 6 years ago.  

Physically I’m improving every day.

I’m walking longer, faster, even running from time to time although, not long distances. Yet.

I’ve lost 60lbs since being diagnosed with the first of several bogus ailments in 2008. Diagnoses that required a litany of metabolism altering drugs which ultimately lead to a disgusting reconfiguration of my body. The a fore mentioned significant weight loss after no longer needing to take a lot of medications, is obviously helping me physically as well as with my self esteem.  

I’m cognitively able to handle more, like longer sessions at the computer and I’m able to problem solve on the fly in class, and over all I’m less fatigued after a 4 hour lecture than I was this time last year.  

My priorities are simplified after I agreed to, albeit stubbornly, give in to the advice of my doctors and Steve.

I’m almost at a point where I don’t think of myself as having MS and therefore, ‘I can’t do that...”. 

Almost. Read on.

MS has become as much a part of me as my brown eyes or being a vegetarian.  I’ve accepted it as it being integral to my existence.  But, much like my drunken sailor’s temper, it can get in the way of achieving positive goals. 

I live with fear.   Every day, all day, I’m afraid that one day my life will be over. That in the great equation I have set forth for myself I will no longer be able to adapt. That I’ll be left with only one option, to give up.

The fear is almost always in the background and only sometimes can it be seen on my surface. In fact my discretion regarding my illness was validated on the last day of work before leaving for the winter break when two colleagues remarked that they’ve never seen me have a bad day and that I hide it well.

Two things: I don’t know if ‘hiding’ is the word I’d choose, and I have bad days but I turn the swear filter up high at work and explode in explicit status updates on Facebook. I felt like saying, “trust me ladies, I have bad days.” But instead I let their interpretation of me sink in.

It’s one thing to have someone condescendingly point out, that I ‘don’t look sick’ but another thing entirely to say that I hide my illness well. Again, ‘hiding’ isn’t the word I’d choose to describe the situation because I like to think of myself as an open book, what you see is what you get. I say what I mean, I don’t beat around the bush, I’m brash, I swear (a lot), I’m sarcastic and have been given copious amounts of grief because of my sarcasm and how it is potentially damaging to some. <Eyes rolling>

So, to describe my handling of everyday circumstances as hiding a truth bothers me. I know that these truly lovely ladies meant absolutely nothing malicious when they noted their interpretation and in the most simplistic of terms meant that it didn’t appear that there was anything wrong with me.  And they’d be right. There isn’t anything wrong with me. I just have MS. There is something wrong with MS, but not with me.

The something that is wrong with MS is that it has the ability to elevate my fear levels to those that are sometimes paralyzing.  The fear prevents me from doing things. Like talking to new people, other moms at Grace’s school or in other social situations because I’m afraid they can hear the MS in my voice. It amplifies fears I’ve had my entire life, like driving across the bridge I have to drive across every single awful morning because I worry that during that 2 min time span I’ll have an attack, lose control of my car and plunge into the Halifax harbor.  You don’t even want to know what goes through my mind when I have to drive in the rain. I don’t drive at night anymore. I can’t drive at night anymore. I won’t drive at night anymore.

But all of those relatively simplistic day to day fear’s aside; I worry most about the future.

When I start thinking about the future, I can’t picture myself. I try and when I do, it’s awful. I’m in a wheelchair. I’m hooked up to a breathing tube. I am no longer able to care for myself. I worry that it will happen instantaneously without a warning. One day fine, next day not. It’s happened before. I have ample reason to be this afraid.

The fears that I carry around weigh a ton. I’m sure it’s a major contributing factor to my fatigue, my sarcasm and obviously, to my sailor mouth.

But, as I said earlier, I am for the most part, back to normal now. You know, whatever the hell that means.

I guess, it means, I don’t look sick. I don’t walk with a brace, a cane or a limp anymore. I have overcome. I have recovered. I have been reborn. I have redeemed.

Resilience - the property of a material that enables it to resume its original shape or position after being bent, stretched, or compressed; elasticity

2013: the year of resilience. It’s the year I will resume my original shape after being bent, contorted, and compressed from the fear of having to give up or of dying too soon. 

This might be the most challenging year yet. I’ve learned how to walk again. I’ve learned how to adapt. I am not so sure about my ability to persevere, to beat the odds.

My hope is that 2013 is luckier than it sounds and kinder than its predecessors.

My hope is that my fear will not overcome my power to continue to kick the ass of this miserable disease.

My hope is that my vulnerability will never become my most dominant trait.

My hope is that I continue to change the face of this disease to one that doesn’t have to look sick to be not well.

My hope is to, one day, in the future,  be able to dance at Grace’s wedding.

My hope is for a cure.

Much love, happy New Year!

©2011-2013 Gracie's Mum: A Story Of A Mum With MS

Something

The inspiration is in the music. Press play.

I completed a long overdue task yesterday. I cleaned out the home office. When we moved in last year, I just unpacked boxes from a desperately needing to be cleaned out home office at our other house.  I organized the mess of 4 years of teaching and studying into its rightful spots here, but only in the sense that the mess was put away. Unorganized, chaos.

I hate throwing stuff in this room away. It’s where I prepare my lesson plans. It’s where I study. It’s where I write. And more than once yesterday, I found notes from former students and former instructors. Thank you letters. Encouraging letters.  And I got to thinking.

I realized I was someone to someone. That I am someone’s something.

It’s a powerful emotion when you realize that you are somebody’s something. Think about it. To someone, somewhere, you mean something.  Take me for instance. I’m someone’s mum. Someone’s wife, daughter, sister, cousin, friend. I’m someone’s co-worker, employee.  I’m someone’s teacher. I’m someone’s student.

To someone, somewhere, my life, my story has had an impact. And not just from the MS angle. Not just through this blog but every day.

And realizing this has shaped a new path. A new direction. A reason to try harder. To love more. To forgive more. To never forget. To learn more. To fight harder. To know when to stop and move on. To know  where and when to begin again.

This last year was, for the most part MS wise, pretty tame compared to other years. And I took advantage of that, I got out, I did stuff, and I planned for the future. I put MS in its place. But like any enemy you respect their strength and you don’t do anything to offend beyond the point of no return.

I became more involved with the MS Society this year. I helped form a support group for families living with the disease. We meet once a month via teleconference and the concept of the group as well as the context is being well received.  It’s teaching me a lot about the people who fight this disease every day. We are all different, and being somebody’s something, we go on in spite of the disease no matter how much it knocks us down.

But my life isn’t only about MS. And as a family we made a very important decision.   

Mum’s going to go back to school to earn another degree. 

I have found my niche in the world. I am a teacher. And I am good at it. Because I love it and I believe in the power of education. I will be pursuing a degree in education with a focus on adult education.

I have the full support of the lovely souls with whom I share my home, and I have the thumbs up from my dad, whose opinion often means more than anyone else's.  And I have their support because they know that their somebody can and will do good things for someone else’s somebody.  

I am nervous. I’ll be honest, I’m nervous that one day I’ll wake up and a great big lesion will be covering the area of my brain that makes me smart and I’ll have to forgo this opportunity.  And fear can be paralyzing.

But just because something can be something, doesn’t mean it is.

Unless you are somebody’s something.

Who are you to someone? Think about it.

Love each other. Have an awesome day.

©2011-2012 Gracie's Mum: A Story Of A Mum With MS