I tried to approximately recollect when particular and significant loss of function has taken place over the course of my condition.
I jotted these major milestones into a simple graphic timeline to help visually tell the story.
After completing - it was even strange for me to see it all in one image. The progression happens so slow and so I am not always aware of it.
I was thinking of video games (and how cool 8BIT is ;) and in video games you collect things, make decisions, explore, discover, gain energy, lose energy and progress through levels, and so for this post I am represented as that 8 BIT stick person ;).
Some of these stages have been truly humbling and there are times when I have learnt to just let go of myself. Through each level I progressively debilitate; I lose my physical capabilities, but also gain, too. At each stage I have gained more and more understanding, perspective, empathy, courage and that is my "heart meter".
Sometimes this experience makes me want to draw inward and I don't want to share and be open. I don't want to spend all my spare time working with ARM or spreading awareness about HIBM. I want to worry about me and me alone and have less accountability.
But, I can't help it and I can't ignore it. It is too humbling and revealing to do that. Growth is not always easy and I feel it pulling at me even when I don't want to join. It is an emotional, sometimes painful, part of my life and the struggle seeps deep inside.
Because of that, because of the constant loss, it is that that compels me to want to share, to be open, feel empathy and to push myself. I can't help but put empathy and passion into EVERYTHING I do, because I REALLY DO care that much, because it REALLY DOES hurt that much. It is the purest emotion, besides love, that I can feel.
It is love and lessons learned that drive me forward and why I do the things that I do and part of why I am who I am.
Complete one level and then there is another.
"It is something that grows over time...A feeling in the heart that becomes stronger even stronger over time. The passion will soon blossom into a righteous power and through it, you will know which way to go"
--Zelda, N64 videogame
"Time passes, people move. Like a river's flow, it never ends. A childish mind will turn to a noble ambition. Young love will become deep affection. The clear water's surface reflects growth. Now listen to the Serenade of water to reflect upon yourself."
--Zelda, N64 videogame
Videogame, Legends of Zelda, was created by Shigeru Miyamoto. Much of his work like, Zelda, Mario, Star Fox, Animal Crossing, were inspired by his exploration bouts as a child.
As a young boy, I guess he loved to explore secluded lakes, caves and hillsides in his hometown, Kyoto Japan. Apparently he came across a cave and after much hesitation he went in, with a lantern as his guide, and this exploration is what inspired the Zelda concept.
See, you never know where your passions or life experiences can/will lead you. Happy hunting.