This morning, my mom and dad attended the CDC National ALS Conference to deliver a speech I wrote. I had hoped to attend the conference myself and have my husband speak for me since my voice is almost completely lost. However, my ALS threw a few wrenches, a hammer, and a screwdriver in that plan. At first, the trip seemed so manageable. However, as I learn more about the process of transporting the breathing machines and my wheelchair, and the damage that could be done to them, I have become uncomfortable with the idea of travel. It just seems a bit too risky to me. If my wheelchair is disassembled, I would be up a creek without a paddle. And there would be piranhas in the creek. And a hole in the boat. Plus, my intense spasms could make for a rough and painful flight. This is the nature of my beast.
Watching my mom give the speech, I felt no bitterness or envy. Her practice with my dad showed in her fluency. She delivered my words perfectly all of the jokes landed, and she addressed the room with conversational warmth that engaged the audience and fit my message. I was thrilled, smiling like a lunatic as I watched her do what I couldn’t in exactly the way I hoped. My dad handed out my business cards at the break while my mom texted that everyone raved about my speech and promised to email me. I have already heard from the VP of Public Policy at the ALS Association! The gratitude I feel for my parents is bigger than words.
I hope to get a recording of the speech soon to share with you. Stay tuned!