Updated: May 22
Thursday night, April 27th, I gave a speech at a fundraising event for Waypoint Adventure, an organization that runs adventure programs for the Disabled. I know: for those who have heard my voice recently, you are probably thinking, "Wait-- they asked you to speak?!" I mean, I thought the same thing, since I can't understand myself half the time. My new voice slurs every word. Full sentences often come out as nothing but varied and garbled, connected sounds, especially if I am fatigued, which is usually the case. The energy required for me to speak is exhausting.
After giving it some thought, and actually communicating via voice with Waypoint, they gave me the green light if I so chose. I decided to go for it. But I had other concerns. My disease has hyper-sensitized my body's reflexes and reaction to adrenaline; how would my body react? How would my arms and legs react, to say nothing of my voice?! And it would be difficult to rehearse how my "new" body would respond that night-- with a full audience and in the spotlight...
I was asked to speak about why making adventures accessible to everyone is important. Within a day or two of making the commitment, I had written my speech. I knew the message I wanted to convey, so it quickly became a matter of managing my delivery. Mostly, my fear was letting people down, including myself. About a week before the event, I gave it a run-through...
Well. I couldn't even get through the opening without breaking down in tears. I had some work to do.
To conserve my voice, I arrived shortly before 8:00, my scheduled time to speak. And I made sure I had plenty of support; my entourage consisted of family and several close friends from various stages of my life. When we pulled in, my entourage magically appeared to walk me in. (They walked. I drove my new portable electric wheelchair from CCALS!) We made our way up to the gymnasium at The Cotting School, a remarkable school for children with special needs.
A few minutes later, my good friend, Kevin Clark, introduced me, and I moved the joystick on my wheelchair to take center stage.
Thank you, Waypoint Adventure, for giving me this opportunity to be heard, the opportunity to "rise up" as my dear friend, Harry Clark, used to say. And thank you to all those, near and far, who were with me that night-- in person or in spirit: you give me the courage to show up, whether I feel like it or not-- that quiet beauty, the unseen magic that you all give to me. Every day. I am forever grateful.
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