Sara Bareilles has long been one of my favourite
singer-songwriters, and she penned a piece a couple of years ago that has
recently been released as a single. “She Used To Be Mine” is the story of a
woman who longs for the woman she used to be, before the world changed her. While
I’m not a waitress, so much of the lyrics are almost word-for-word the lament I
would sing to the girl I was before all of the illness, all of the trials, and
all of the pain. Her words explain what this life is like better than I ever
could:
Click here to hear Sara sing this beautiful song.
It's not simple to say
That most days I don't recognise me
With these shoes and this apron
This place and its patrons
Have taken more than I gave them.
It's not easy to know
I'm not anything like I used be
Although it's true
I was never attention sweet centre
But I still remember that girl
She's imperfect, but she tries;
She is good, but she lies;
She is hard on herself,
She is broken and won't ask for help;
She is messy, but she's kind;
She is lonely, most of the time;
She is all of this mixed up
And baked in a beautiful pie -
She is gone, but she used to be mine.
And it's not what I asked for
Sometimes life just slips in through a back door
Carves out the person and makes you believe it's all true
And now I've got you
And you're not what I asked for
If I'm honest, I know I would give it all back
For a chance to start over
And rewrite an ending or two
For the girl that I knew
Would be reckless, just enough
Who’ll get hurt
But who learns how to toughen up, when she's bruised
And gets used by a man who can't love
And then she'll get stuck and be scared
Of the life that's inside her
Growing stronger each day
‘Til it finally reminds her
To fight just a little
To bring back the fire in her eyes
That's been gone, but it used to be mine
Used to be mine
She is
messy, but she's kind
She is lonely, most of the time
She is all of this, mixed up, and baked in a beautiful pie
She is gone, but she used to be mine.
Take a moment to remember the pain you felt when you rolled
your ankle, or your knees after doing a whole lot of squats at the gym, or your
feet after a long day on your feet at work. Now imagine all of those pains
together, twenty four hours a day, seven days a week. In all those joints, plus
your shoulders, elbows, wrists, hips, fingers, and toes. Imagine this is your
life now. Every. Single. Day.
Imagine you are given a credit card with a $5,000 limit.
Each step you take, costs you a dollar. A shower, $50. Getting dressed, $50.
Cooking dinner, $50. Vacuuming, $100. Each hour you stay at work, $500. Your
‘credit’ is eaten up quickly, isn’t it? This too is your life now. Every.
Single. Day.
Every day, I am in pain. Every day, I run out of credit. By
the time I get home, I am lucky to manage to cook a piece of toast for dinner.
But in a life that pretty much consists
of going to work, coming home, collapsing in bed, and doing it again the next
day – it is my work that keeps me going.
In the past 12 months my will has been tested. Multiple new
diagnoses (two autoimmune, and a couple of regular ones to keep me in touch
with the ‘real world’), twenty-odd kilos to my frame, countless bruises, thousands
of dollars in medical costs, and keeping most of this a well-guarded secret so
as not to scare, burden, or disappoint the people I love.
But today, World Arthritis Day, it’s time to come clean. To
remind the world that “young people get Arthritis too”; that it’s not just “a
few aches and pains”; and that behind the smile and the assurance that all is
well, sometimes we are crippled with pain – physical, and emotional. To
celebrate the achievements and triumphs; to hear the stories of strength and
courage of others who share our shoes.
Every kilo I have gained is not a weakness, but a sign of
strength. They’re there, because instead of giving up when my body betrays me,
I down the steroid tablets and carry on. Every bruise is a sign that instead of
staying in bed when my body was barely strong enough to stand, I tackled the
day head on (and somehow collected the doorframes and walls). Every dollar I
spend to stay as healthy as I can manage is testament to my determination to
get myself to work, and make that money so I can continue to be independent as
long as possible. I may have days when I want to give up, but it’s the
knowledge that giving up would be so incredibly out of character that keeps me
going.
So today, to all the other people who make the decision each morning to fight like hell, I urge you to draw courage from the things you’ve already faced.
I will put one foot in front of the other, and when I look in the mirror and don’t
recognise the girl who stares back, I will take a moment to remember that she
is the sum of all my experiences. She has been a passenger on the roller coaster of life, and has done her best to squeal with excitement more often than scream in fear. She is more than a medical record and list of medicine. She’s
imperfect, but she tries. Today, and on all the days ahead, that will be enough. You are enough. We are stronger than this disease.
