Tuesday, February 24, 2015

Life has a Learning Curve

This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's story is from Penny Loker from Kitchener Ontario, Canada. Penny loves knitting, reading, and her dogs. Check out her blog here: http://uniquelypenny.wordpress.com/

Come back all week for inspiring stories of people who individually may be rare,
but are creating a strong community together. 

Life Has a Learning Curve

When I was born, the doctors didn't really know what had happened and they struggled with a diagnosis, so I came away with not one but two...how lucky am I? ;) Living with a diagnosis that no one else has been born with has been a pain, but in the last few years it's been an odd blessing. I have met with others with one or the other but none that have both of my conditions.

I'm learning that being a little extra unique may not be as bad as I thought. I still struggle with acceptance from society and on the roughest of days acceptance from myself. But I know that I am who I am in part of because what I was born with. Although it's not WHO I am it has shaped the person I have become and who I continue to grow to be.

Having a rare illness means always having to be the strong one, to put one foot I front of the other a little faster than those around you. You learn quickly how to be your own advocate or how to be the advocate for your child because you have no other choice, well guess that isn't true, there is always another choice but I can't think about those. Never knowing when the next shoe will drop you learn to never take anything for granted and to live each day to the best; you learn how to love fully and completely.

Having a rare illness also means loss: you find yourself watching your peers doing things you would never be able to do, you envy who you may have been and you grieve for the life that could have been yours. It means learning that life isn't always fair and to know when you have met your limits, and how to cope with the realities that others can't imagine ever having to know about. It also means depending on people when the only thing you want is independence.

Everyday is a new day to learn something, to meet someone who may change your life. Everyday is another day to be allowed to make this world a better place, whether you were born with a rare illness or not. When you get the chance to learn about someone with a rare illness, don't pity them, don't feel sorry for them; help them, advocate with them, learn and be the person you are as a tribute to all those around you.

I am who I am, I'm flawed, I am complex, I am human!


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