Monday, April 25, 2016

Standing on the Shoulders of Activists Who Came Before Me

A couple of weekends ago (and I really cannot believe it's taken me this long to post about it, except I also sorta can, because -- well, life), I was in Chicago for HealtheVoices16, a conference I'm proud to have advised on over the past few months. I got to help shape a weekend in which nearly 100 of us gathered to talk about our online communities across a number of health conditions -- HIV/AIDS, diabetes, mental health, cancer, Crohn's/colitis, and rheumatoid arthritis, to name a few. We talked, but we didn't just talk -- we made deeply rooted connections, the theme of this year's conference.

One example: AnnMarie Otis of Stupid Dumb Breast Cancer was there, and it was our first time meeting in person even though we've been in touch on social media and even over the phone for years. Yes, she is as tiny and fierce and passionate in person as she is in her online presence. We hugged and cried a little. We talked about our mutual love of Birkenstocks and our Sunday Italian family dinner traditions. We practiced yoga together. I'm the one in the crazy pants.

On Saturday night, AnnMarie was at my dinner table. We sat next to an HIV activist, Aaron Laxton, who is as brilliant as they come. I could listen to that man talk all day about viral loads, clinical trials, and the work that still needs to be done in bridging the gap between the 'haves' and 'have-nots' in this country (not to mention the world at large).

I implore you to click on the links to Aaron's story. He talked to me about prognoses for those infected with HIV; it's pretty good so long as the person receives treatment. AnnMarie and I marveled at how far the metastatic breast cancer community still has to go. "We are in the freaking dark ages," she said to me at one point. To which Aaron responded, "I am standing on the shoulders of the activists who came before me. Let me help your community."

And then I started crying. Again.


As part of my conference duties, I had the honor of introducing a session speaker, Trevis Gleason. Trevis lives with multiple sclerosis (a word, I learned, that is very hard for me to say when speaking in front of a group). He's also a former chef from Seattle who now spends part of his time in Ireland. After blogging about MS for some time, Trevis wrote a memoir I can't wait to read, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. His talk to our group was about taking our advocacy efforts offline, something I've been trying to do more of over the last year.

I've got a conversation scheduled with my agent this week about whether my book has garnered any interest from publishers (WHY DOES THIS PROCESS TAKE SO LONG). Aaron (the guy in the photo above) is going to teach us in the MBC community some advocacy tricks. I am participating in a Twitter chat about metastatic breast cancer with the Tigerlily Foundation in early May...which is suddenly next week. And I am waiting to hear about an advisory role with the Young Survival Coalition.

I am inspired, and can't wait to see what lies ahead.

But first, camping with Quinn's preschool this weekend. Because -- well, life.

** Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.**

Thursday, April 7, 2016

In Which I Turn a Bath Mat Into a Magic Carpet

Are tantrums at this age normal? (I mean five, not thirty-seven, by the way. I'll get to my own tantrums in a bit.)

I don't know what I was thinking, but I didn't expect this. (How many times have I uttered that statement in the last five years???) I assumed this behavior would dissipate after age three, and be totally gone by now. I thought we'd turned some magic corner (those exist, right?), a corner that led to a million questions a day and incessant curiosity, but a corner nonetheless. I mean, he can brush and sometimes even floss his own teeth, for goodness' sakes. I was prepared for the occasional whininess after too little sleep or crankiness caused by low blood sugar. I mean, isn't that what the Snickers commercials are all about? But full on tantrums? Those weren't on my radar.

Then again, what do I know about five year olds?

After a bedtime-routine battle of epic proportions the other night -- including a showdown over the need to pee before bed and a scene that would have been hilarious if there hadn't been so much defiant yelling involved as he HELD ON TO A BATH MAT TO AVOID BEING LIFTED ONTO THE TOILET (well played, sir). Anyway, after this, once I'd gotten him settled in bed or so I thought, talked to him about behavior that's acceptable and behavior that is unequivocally not, Quinn came out, found me in the kitchen, and told me in a small voice that he didn't think I even liked him anymore.

That sound you may have heard?

That was my heart shattering in a million pieces. I'm still looking for a few of the shards on my kitchen floor.

Oh, my boy. My heart. My world. I am so, so sorry for letting you ever feel that insecurity, that doubt.  Look at you; you are perfect.

In that moment the other night, I scooped Quinn up, held him in my arms even though I can tell I'm getting close to a time when I won't so easily be able to manage that feat. I assume my heart will fall apart again when I can't pick him up anymore -- or worse, when he doesn't want me to. I told him that even when he misbehaves, even when we don't like his actions, we will always like him. Always love him more than anything.

I reminded him that sometimes he doesn't like the things I say or decisions I make but he still loves me. (I checked).

And then I thought, of course, of my own mom. How I must've done these types of things to her well into high school and -- oh, yeah -- right up through last weekend when I threw a fit over something she shared with my brother that I wasn't quite ready for him to hear. At worse a minor infraction, in the grand scheme of things. More likely, a misunderstanding. But oh how I yelled. Of course, Quinn heard that fit of mine, asked questions about it, probably formed connections in his developing brain that maybe it's okay to yell at people you love when you're upset.

It's not okay. But it happens. Hey, Mom? I'm sorry.

This week, I'm re-reading No Drama Discipline: The Whole-Brain Way to Calm the Chaos and Nurture Your Child's Developing Mind. A book that tells me to take heart: "The fact is that none of us are perfect, especially when it comes time to deal with our kids' behavior. Sometimes we handle ourselves well and feel proud of how loving, understanding, and patient we remain. At other times, we lower ourselves to our kids' level and resort to the childishness that upset us in the first place. . . .

So here's hope: those not-so-great parenting moments are not necessarily such bad things for our kids to have to go through. In fact, they're actually incredibly valuable.

Why? Because our messy, human, parental responses give kids opportunities to deal with difficult situations and therefore develop new skills. They have to learn to control themselves even though their parent isn't doing such a great job of controlling herself. Then they get to see you model how to apologize and make things right. They experience that when there is conflict and argument, there can be repair, and things can become good again. This helps them feel safe and not so afraid in future relationships; they learn to trust, and even expect, that calm and connection will follow conflict."

I'm highlighting just about every word in this book right now. Yes, some of these outbursts might have to do with us carrying a heavier than normal load of uncertainty lately. Thanks for checking in on me; mostly, we are okay, just regaining our equilibrium as a family and focusing on that calm and connection.