OFFICIAL AWARENESS TIES ADVOCATE
FOR 'THE SPOON LIFE'
FOR 'THE SPOON LIFE'
"I wear my spoon for Arnold-Chiari Malformation."
Allié: So many disabilities are unseen and unheard us. For those not familiar with Arnold-Chiari Malformation, what is it? When were you diagnosed with it?
Providence: I was diagnosed with Stage 2 Chiari Malformation when I was 8 years old. I remember it taking years worth of scans and doctors appointments for us to narrow down the problem. My mom used to have me track down my headaches on an Excel sheet, so that we could give the best and most relevant information to the doctor. Arnold-Chiari Malformation is a condition where the brain tissue extends into the spinal canal. My skull is abnormally small, forcing my brain to be pulled downward into my spinal canal. This caused horrible pain throughout my youth, and continued headaches everyday of my adult life.
Allié: What is the one thing you want people to know about this condition?
Providence: If there was one thing that people should know about those that suffer with this condition is that you suffer through migraine level pain everyday. I have had a migraine every day of my life since I can remember, and I do not know life without that pain; it has become my new normal. I have limited mobility in my neck and I have tried innovative medicine after innovative medicine and nothing seems to touch the pain.
Allié: Because it’s the challenges in life that make us stronger. How have YOU become stronger as a result of this challenge in your life?
Providence: If this disease has taught me one thing, it has taught me to persevere. It has taught me that pain is a part of everyday life, but it is what we do with that pain that makes us stronger. I used to be deeply angry that this was the one piece of my life that I could not change and that affected every step of my life, but I learned to find empathy in my pain. I have learned that others go through pain everyday and that we cannot let it tear us apart, but rather bring us together. It took me away from activities that other kids my age enjoyed, and allowed me to find my passion. It taught me that it is okay to be different, and that it is okay that my brain was just too big to contain. :)
"If this disease has taught me one thing, it has taught me to persevere. It has taught me that pain is a part of everyday life, but it is what we do with that pain that makes us stronger."
HELP RAISE AWARENESS
More than a metaphor for life, this spoon is a symbol and a statement for living each day 'a spoonful at a time'. Spoons represent energy. You wake every morning with only so many 'spoons'. You can't control the number of spoons you have. You can only control how they're spent. So, how will your spoons be spent?
For those with an invisible illness, fatigue can be a major issue. If you don't have a chronic condition, the concept of severe fatigue can be difficult to understand. This is where 'the spoon theory' comes in. Here's how the story goes...
Lupus patient Christine Miserandino felt that words were insufficient to adequately communicate to able-bodied people what it is like to struggle daily with chronic illness. Instead, she used 12 spoons in a café as a metaphor for her daily energy stores and gave the spoons to her friend, taking one back every time an activity like taking a shower or getting dressed was mentioned. The message gradually got through to Christine’s friend, who was shocked by the revelations of the experiment.
The Spoon Life Necklace is designed to serve as a reminder that we only have so many 'spoons'. While you can't control the quantity of spoons you have, you can control the quality of their use. Do the best with what you have. Find comfort and confidence in putting your spoons to good use.