August 2017


Trigger Warning: guns, violence, death. Grief.

I am astonished at how aimless I remain, Dana.

I’ve been waking up even earlier than my usual 5 in the morning, often at even 3:30. I get my coffee, my laptop, candles lit. Meditate.

I get online, ready and raring to work, and then… I lose focus.

I see your leg and how it was ripped open in half, gouged by the bullets and then by surgery. I think of the gunshots on TV and how being shot is never really shown, you don’t ever see what it really looks like, when your beloved brother is on a fucking hospital bed, pumped with air and compressors and his leg is literally ripped open, as is his chest, and you still think he’s going to make it and you celebrate every fucking little thing, like his rectum surgery.

This time last year, I was about to leave Redding because I was SO SURE you were going to make it, and because Mikey wouldn’t come and stay with me at the hospital because he “was working” and it was harvest and he was “busy.” All of this is in quotes now because who the fuck knows.

I was positive you were going to make it, Dana. I was positive you would wake up, and that it would be on Saturday, and that I’d miss being there when you woke up, but it would be ok, I’d be there for the rest of your time in ICU and would help with your rehabilitation and everything else.

I am so angry, Dana.

I am so sad. 

I’m so angry.

And I can’t stop seeing your leg in my mind’s eye and I know I need to pivot and think about something else, but it’s so, so hard when I’m full of this anger and sorrow.

If I had known then that you wouldn’t make it, I would never have left the hospital, left Redding. I would never have left because I would need to know that I had done everything I possibly could to help keep you tethered to this world.

If I had known you wouldn’t make it, I would have begged Mikey come and take care of the kids in the hotel so that I focus on you, 100%.

kids knees sitting in a circle, holding hands

I would have held your hand as long as I could have.

a man's hand on the bed, with iv lines and bandages attached

Your hardworking, warm, big hands.

Hands that have held mine for as long as I’ve been alive.

two children hold hands while facing the seaI would have grabbed on, and held.

I would have played every song that I thought might make you smile through your coma. I would have blasted our cheesy favorites and Hot Blooded and everything in between, disapproving hospital nurses be damned.

I would have joined Mom in sitting up all night with you in the hospital.

If I had known you wouldn’t make it, I wouldn’t have made those jokes about your feet or the leg compressors, trying to make your kids less scared of what was going on with you. I would have cried and made sure that we all stayed with you, one of us, for every second of every day that we possibly could.

Hail Mary, full of Grace, the Lord is with Thee

Trust in the beauty and purpose of the universe is something I’ve always believed and worked hard at aligning myself with, you know that Dana.

Even as I sit here and type this out, I remember so many times in this very room where you’d sit next to me and we’d talk about this stuff.

I’ve never been angry with God for taking you – but maybe I’m angry with you for going.

Blessed art thou amongst women, and blessed is the fruit of thy womb, Jesus.

Maybe I am really angry with you for going.

Maybe I am really angry at some choices you made along the road of your life.

Angry at the trajectories that lined up.

Angry that they resulted in your leaving.

Holy Mary, mother of God, pray for us sinners. Now, until the day of our death, amen.

If I had known you weren’t going to make it, I would have done more, been better.

I would have been perfect.

I would have arranged the world and restructured the universe to have had things been different.

I would not have lied and told you that it would be okay – that you could go if you really wanted or needed to, that we would be all right.

Because I don’t know how I’ll ever be really all right again in a world that has shifted so hard for me.

I really miss you, Dana.

With the definition of “tolerate” being to “allow the existence, occurrence, or practice of (something that one does not necessarily like or agree with) without interference,” I need this year to be about not tolerating things anymore.

This is why 8 months ago, I wrote that my focus-word for 2017 would be “intolerant.”

This has been a solid focus for me. Not an easy one (but seriously, when did I ever do easy?!), but solid in that it’s propelling me to startling new directions.

With what just happened with Medi-caid and and now with the racial riots, I think “intolerant” remains a focus that speaks to me.

Put more positively though, “intolerance” feels more like “change”.

Like Angela Davis said, “I am no longer accepting the things I cannot change, I am changing the things I cannot accept.”

I’m going to say: this sounds really strong, fierce, noble. It looks great in a quote and fantastic here in this blog post. In real life, on social media or interacting with others, it doesn’t usually feel fierce or noble to me.

It feels scary. It feels tiring. It feels  difficult. It feels like it takes consistency (something I’m not good at), vigilance, courage. It takes thought. It takes action.

It takes time.

It takes attention to detail, care about consequences, planning, foresight.

It’s takes showing up. It takes people thinking you are a bitch because you pick at things or ask questions, and the discomfort of that experience.

With relation to disability, I experience daily discrimination and lack of access. This world is not made for us deaf. I also enjoy tremendous privilege based on my white skin, light eyes and hair, and the fact that I can “pass” as non-disabled. People think I’m training my service dog, not that my service dog is actually working, serving me.

With as frustrated as I can be in living in an inaccessible society for me (and for my daughter who has Down syndrome), I still struggle with internalized ableism. That is, I think my own access is not important enough to do something, to speak up, to be intolerant about.

These two aspects: internalized ableism and an awareness of racial privilege, couple together and breed all kinds of flavors of low self-esteem which in turn affect how I live my life, how I express my intolerance for the things I do not want to accept, how I consciously move towards changing the things that I find unacceptable.

So many times I’ve found myself left out of something by dint of deafness. On a personal level, I shrug, feel sad. When I transfer that experience to others in my deaf community, I am galvinized into action, as that’s the easiest way for me for me to gain the courage to stand up to something that should not be tolerated. It’s easier to stand up for others than it is to stand up for myself.

Is that noble? No.

Is that honorable, a great selfless expression of how to live? No.

Why? Because I’m a mom; I am raising three little kids who are constantly looking at me and learning how to navigate the world. They are learning by my actions.

What I’ve learned to do at this point is to start off with the easier route, use that as my jumping-off point. Use the injustice of something happening to another (even if it’s a shared experience) to get myself to act. Then make it personal when and if I can and if it is relevant.

This post isn’t an answer or a how-to. It’s a conversation that I hope you will join in honing our change-advocacy skills, in really thinking about why this is important, the challenges we face (particularly in the parent and disability communities) in expressing our intolerance of things we cannot accept, and ways to work through those challenges.



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She’s hard on clothes.

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Big-Wheelin' with Moxie

and monkey-playing

hanging out

goofing around

and even the rare moment of quiet reflection

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