OFFICIAL AWARENESS TIES ADVOCATE
FOR 'THE SPOON LIFE'
FOR 'THE SPOON LIFE'
"I wear my spoon for Multiple Sclerosis."
Allié: Everyone who has Multiple Sclerosis has a different story to tell about when it began and how. Kyle, I'd love to hear your story. What were the symptoms that led to the prognosis, and when were you diagnosed?
Kyle: I had optic neuritis and an uncontrollable bladder for a few months leading up to May 4th, 2011 when the real onset began. I woke up that day numb and tingling all up my left side (that still persists). I had double vision, my legs felt like they each weighed 200 lbs, along with a myriad of seemingly unrelated symptoms. I woke up feeling like I had been run over by a train.
Allié: Multiple Sclerosis is a disease with an endless number of battles, from fatigue to insomnia and vision problems to balance issues. What are the three hardest fights with MS that you’ve had to face?
Kyle: Declining mobility has devastated me, the continued optic nerve damage is terrifying, and the uncontrollable bladder is probably the bane of my existence.
Allié: In every challenge we face in life, there is always a win to be found. In living with MS, what are the wins that you’ve found? Are you thankful for the challenge?
Kyle: I tell people that at times this has been a blessing in disguise in so many ways. I truly feel like I can conquer anything that is thrown my way. To paraphrase from that book, ‘The Alchemist’, I feel like the world is conspiring in my favor.
Allié: For those newly diagnosed with MS, what advice for their road ahead would you like to share?
Kyle: Keep moving. I spent a lot of time not moving, and I think that is when MS can really take hold and do damage.
Allié: Tell me about the Kyle you envision 5 years from now. Where will he be? What will he be doing?
Kyle: In sharing my MS experiences, I’ve been meeting great people all over the world. It is confirming for me that in 5 years I will be growing this community and aiming to help anyone not only dealing with MS, but autoimmune conditions at large.
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.