100 Posts on Disability, Caregiving, and Courage (and Why We Fear Public Speaking More than Death)

I stare down at the small pile before me: an outline of my talk (8 pages long), 2 books to read from, and 1 cough drop, just in case things get desperate. This is it, I think. There’s no going back now. I’m standing in front of a small audience at St. Francis of Assisi church, about to give a talk entitled, “Not A Burden, but a Privilege:  Ministry Alongside People with Special Needs.” And boy oh boy, am I nervous.

I try not to think about the camera filming me, or the raw ache in my throat that had begun just hours before (which, as it turned out, signaled the start of a wicked cold). Instead, I look at the people seated in the audience. Their faces are expectant, and the few familiar ones smile at me. I take a deep breath and start to speak.

At first, I battle the sinking feeling that I’m failing, that I have nothing to say, that I’m making a fool of myself. Whenever I speak in public, this doubt is always with me. It’s with me whenever I put my heart on the line, whenever I share the stories that matter most to me. (It’s with me now, in a milder form, writing this post.)

And it makes sense; if there is a God of love, a power from which creativity and healing come, there is also a force (both without and within), that resists this power. Resistance is real, and if you feel a sickening sense of self-doubt, it probably means that you’re trying to do something important, something that will make a difference in the life of another person.

Resistance hates it when you take courage, when you do things that help you to grow and change and become the person you were meant to be. It wants you to stay as you are, to stay afraid. And so it will lie to you, very convincingly, telling you that you have nothing to offer, that nobody wants what you have to give.

And so it is with me as I begin to speak, and I know that the only way out is through. I cling to the knowledge that the fear will pass, that it doesn’t define me … and moreover, that it can’t stop me unless I let it. (And, for all my innate shyness, I am very stubborn.)

***

At the start of my talk, I rely on my outline, but soon I’m able to speak extemporaneously. First, I talk about Willie, how being his sister informs everything I know about inclusion. I tell the story of Snow White and the Seven Dwarves, how Willie gave me a window into his mind and heart by casting me as Snow White. Next comes the reality of his behavioral challenges, the struggles we never would have chosen. Tears come to my eyes as I tell them about my brother with autism, my greatest teacher in the art of acceptance.

Photo credit: Brian Taylor

From there I speak about L’Arche, and how the people there have taught me more about God and true faith than anyone else. I tell the story of the time my friend Pedro* and I went to church together, and how, in the midst of the isolation we felt, a woman we didn’t know brought God near to us. I talk about my friend Miguel*, and how his peaceful presence has given me respite. I mention my friend Katy* and how she took care of me when I was sick while on routine, stroking my hair and offering comfort. I share the lessons that my friend Gene taught me in his life and in his death: how to be present, how to hold on and when to let go.

Unscripted, I mention the fact that I’d applied (and been accepted with a full scholarship) to Princeton Seminary. I tell them that I decided not to go, in part because I was afraid that, after L’Arche, any seminary would be something of a letdown. The room fills with laughter, and I am shocked at my own subversive truth, but it feels so good to tell it like it is.

At some point, the audience starts feeling like a group of kindred spirits. Their eyes soften; some wipe away tears. The ache in my throat disappears, albeit temporarily. Time moves differently — when I glance up at the clock, I’m sure it must have frozen because really, how can I have been speaking for over an hour?

And with that, I realize: this talk is the 100th post. I’m living it. This speech is the culmination of a year and a half’s worth of love and writing. I’m not unprepared after all.

***

After the delight of signing copies of Love’s Subversive Stance and meeting the wonderful members of the audience, I step into the restroom for a moment alone. As I’m washing my hands, I glance up at the mirror. Something in my reflection is different – what?

Maybe it’s just the dim light, but I think: I look … more mature. I look more like my mother. I look more like the woman whose courage inspires me every day. I look more like myself, the woman I want to be.

And at the end of the day, at the end of 100 posts … what more could I ask for?

***

How have you faced down resistance in your life? Tell me in the comments!

Thank you for your sharings and your readership; you have made 100 posts possible.

Also: A Wish Come Clear will be taking a 2 week hiatus.

I’ll return with a new post on Monday, June 4th, 2012 (my birthday).

If this post spoke to you, please share it with those you love.

***

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*Names have been changed.

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My Greatest Teacher in the Art of Acceptance: My Brother with Autism

This is the 99th published post here at A Wish Come Clear. With the 100th post around the corner, I’m thinking about another milestone that’s coming up soon: my younger brother Willie’s 25th birthday. (Willie has autism, as well as myriad creative gifts; he came up with the name ‘A Wish Come Clear’.)

Willie has been talking about his 25th birthday since, well, the day after his 24th. At regular intervals, he announces, “On May 10, 2012, Willie will be 25 years old!” And then, of course, we gently prompt, “I will be 25″, and he says it right back, proudly,I will be 25 years old.”

Though Willie and I have vastly different personalities (for example, at any given meal, he eats his favorite item first, and I save the best for last), and our love for (and anticipation of) birthdays is one of our shared traits. Growing up in our house, birthdays were a big deal.

My mom started a tradition of hiding my gifts the night before my birthday; she’d leave a treasure-hunt trail lined with Post-It notes. Each Post-it contained a rhyming clue to the location of the next Post-It, and the next, and then, at the end, the final note, with the cache of presents and treasures. (Royal treatment? Absolutely.) Later in the day, we’d go out to supper as a family, singing and celebrating in high spirits.

L’Arche also makes big deal out of birthdays. Each community member gets a celebration, a night of songs, gifts, and dessert. On the anniversary of each person’s time at L’Arche (i.e., their L’Arche birthday), they are anointed with water by their fellow community members. This simple ceremony is an intimate thing. It is a time for us to affirm to one another: yes, you matter. Yes, our love for you is alive.

I miss Willie more than ever as his birthday draws near. As it happens, I’ll be speaking at a local church on his special day, giving a talk entitled, “Not A Burden, But A Privilege” (You can view the event flyer here.) And it’s bittersweet to be giving this talk on Willie’s birthday; bittersweet, yet somehow, entirely fitting. If it wasn’t for Willie, I’d never have been a part of L’Arche, or discovered the amazing gifts of the people therein. My life would have been so different, and I cannot wish any of it away.

***

Since I won’t be able to celebrate with Willie, I took my time selecting a gift for him. I scrolled through the books available on Amazon, looking for one he’d enjoy. Willie loves dogs, so I picked a pocket dictionary of dog breeds. I chose the pocket edition  because he likes to carry books with him wherever he goes (another similiarity between us), and also because I knew that he might tear the book to pieces, and I didn’t want to spend too much on something that might end up shredded.

It was surreal, shopping for a present with calm acknowledgement that Willie tears up even his favorite books when he’s out of control. I was purchasing something I knew might not last, and, miraculously enough, it didn’t bother me. I was taking Willie’s meltdowns into account, and doing so was a form of acceptance.

That said, being with Willie when he has a meltdown is terrifying. I wish, hope, and pray every day that there might come a time when he’s free of their tenacious grip. But as I hit “Purchase”, I felt the truth of what I can and cannot do. I can buy a good gift for my brother, but I cannot control how long it will last in his hands. I cannot change Willie, but I can love him.

It was a moment in which the Serenity Prayer became real for me, a moment in which I was granted the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”

Yes, I will struggle to accept Willie as he is. I will feel anger and terror and grief when he melts down. But those feelings are not my only truth. They are a part of how I feel, but they are not the truest part.

And so I plan to close my talk at St. Francis this week by saying what is most true:

Happy Birthday, Willie. I love you and I’m proud of you. You’re the reason I’m here tonight.

You, before anyone else, have taught me to see through eyes of love. Thank you.

***

What’s been your greatest ‘acceptance challenge’ this week? Tell me in the comments!

If this post spoke to you, please share it with those you love.

***

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