A few weeks ago\u00a0my sister, who has been tirelessly dedicating herself to planning this year’s NDF gala in November, asked me if I’d be willing to speak at it. \u00a0I\u00a0told her that of course I would. That I am always willing to\u00a0contribute in any way\u00a0she or the Board thinks would be helpful in terms of raising awareness and raising funds. \u00a0She told me she’d get back to me once they had decided on the program.<\/p>\n
<\/p>\n
This morning, as I was reading books in bed with my two boys, I spoke with her and \u00a0she told me that they had decided that they’d like me to speak. \u00a0My first response was, “Are you sure people aren’t getting sick of me?” She quickly assured me\u00a0that it was a well-thought out, group decision. Once I got over that momentary insecurity, \u00a0my next internal emotional response was actually somewhere\u00a0in the neighborhood of enthusiasm. Giving a speech about living with my disease at a fundraiser to over 500 people is such an opportunity. A gift really- to be able to reach out to that many people, to educate them about what this disease is and does. And for me to just be able to\u00a0perceive<\/em> a\u00a0sense\u00a0of control, \u00a0in such an out-of-control experience, by actually doing something that could potentially make a difference truly is exciting.<\/p>\n So I snuggled with the boys some more, texted my unofficial speech-writing partner\u00a0Gabrielle (sorry, but at some point I simply have to give credit where credit is due) and got in the shower to start my day. My morning shower is often where I do a lot of my thinking. And in this morning’s shower, I was inundated by all of the thoughts of what I might include in this year’s speech. \u00a0Should I talk about\u00a0how hard it’s been to lay down new tombstones, like\u00a0not being able to safely walk outside barefoot anymore or\u00a0having to wear sneaker’s full-time at\u00a0my office now? Should I talk about how difficult it was for me to commit to going to my 25 year 8th grade reunion which is happening next Saturday night because I was (and still am a little) terrified of what it will feel like to go back in time and mourn for my innocent, carefree 8th grade self who had no idea what was ahead of her? Should I talk about how desperately I am trying to hold onto my current reality of not using a cane when I know intellectually that using\u00a0a cane would probably be the most sensible next move?<\/p>\n And on and on the thoughts and questions went. Not with any particular emotional tone attached to them,\u00a0just\u00a0in a brainstorming-for-a-talk kind of way. And then I got out, got dressed, kissed my boys good-bye\u00a0and got in my car. \u00a0And within two minutes of starting the engine, I was assaulted by a stream of tears. I use the word “assaulted” because they took me by surprise and came on strong. I had just spent an exceptionally joyful morning with my boys. One of those mornings when\u00a0everyone’s loving each other and getting along and being silly and I feel like I’m living the dream.\u00a0\u00a0So naturally, initially I felt confused. It’s not that I tried to fight the tears necessarily, but I also didn’t think they were warranted. (Whatever the hell that\u00a0means.) I hadn’t cried in a while. In fact, I hadn’t even blogged all summer. Life has simply felt so good lately. I have been so engaged in the joy of the moments that I haven’t\u00a0felt the need nor inspiration to go beyond them.<\/p>\n But after a few minutes of essentially trying to\u00a0argue myself out of my feelings, I surrendered. And it felt a lot easier. Of course I was sad.\u00a0Of course I was sobbing from the depths of me. Of course I could only view the opportunity to give a speech from a rational, logical, intellectual\u00a0perspective\u00a0for so long before the reality of what I’m being asked to do\u00a0and why set in. It’s the same reason why, without fail, every time I’ve given a speech about HIBM, I’ve had a complete breakdown sitting in my seat 5 minutes before going on. \u00a0In those most vulnerable moments, I am not walking around the edge of the vortex looking in while being bathed in the sunlight from above, the way I do on a daily basis. \u00a0Rather, I am thrust down into it, surrounded by the\u00a0cruelty of its darkness.<\/p>\n And so this morning, I gave myself permission to\u00a0accept that truth and I allowed the feelings to do their thing, all the while taking comfort in knowing that it was a healthy discharge of emotion and that it would free up some space. And of course, that I would soon recover and return to my baseline, where the light is always coming in from at least one direction. Because it seems that somehow, at least for now, \u00a0it always is…<\/p>\n <\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" A few weeks ago\u00a0my sister, who has been tirelessly dedicating herself to planning this year’s NDF gala in November, asked me if I’d be willing to speak at it. \u00a0I\u00a0told her that of course I would. That I am always willing to\u00a0contribute in any way\u00a0she or the Board thinks would be helpful in terms of<\/p>\n