Matters of the Heart

So I guess I’m going to talk about this thing, which has nothing to do with disability advocacy or Schuyler, except of course it does, because those are the parts of my life that I couldn’t separate from the rest even if I wanted to, and I very much don’t.

Last March, as you might remember, I had a hospital scare that ended in me getting my own health regimen back on track. That day sucked, to be sure, and it was followed by plenty more that were also pretty awful. But it ended up for the best, I suppose. I got better and my health improved to a point where it was more solid than it’s been in years. I ended up traveling with Schuyler to extraordinary places and had equally extraordinary experiences. And to stay on top of my health, I’ve been going to the doctor regularly, because that’s what normal people do, I guess. So I hear.

Things were going well, right up until early October when my doctor detected a faint heart murmur that wasn’t there before. He wasn’t overly concerned, so I took his lead and decided not to be all that concerned, either. He referred me to a cardiologist, just to be thorough, and a few weeks later, me and my mumbling heart took a stress test. When no red lights or alarms went off and no one called me back for a few days, I assumed I got an A. Which was cool; I didn’t even study.

About a week later, my cardiologist called me out of the blue, late one evening. According to my test results, at some point in the past few months, I apparently suffered a heart attack.

A heart attack. 

As they say in the movies, I didn’t feel a thing.

I never felt any crushing chest pain or shooting agony in my arm or cold sweats or barfing or any of that. I didn’t fall to my knees, one hand clutching at my chest, the other reaching to the sky. If I noticed anything at all, I certainly don’t remember it. Maybe I thought I had gas. Perhaps I just farted and went on with my life, unaware that my shitty, shitty heart just said, “Fuck you, Rob” and silently tried to murder me.

It failed, of course. I am STRONG like BOOL.

So. This is my new reality. I am a guy who survived a heart attack and didn’t even know it. I mean, that’s worth a few badass points, right? Just a couple? I don’t know a lot yet. I have an echocardiogram in a few days, and a heart cath procedure in January, which seems like a long time to leave me at the mercy of my murderous heart, but I’m also taking that as a sign that my cardiologist doesn’t think I’m in mortal peril. So I’ve got that going for me, which is nice.

I honestly don’t know how to feel about this. On one hand, I feel absolutely fine. Or I did. Naturally, now that I know, every single little pain or twitch sets off alarms. Tightness in my chest? Doesn’t matter if I was reaching into the back seat of my car to get something. Clearly, it’s the Big One. Random aches and pains? It’s the baby Jesus taking me home. Today I felt vaguely unwell, so I once again looked up the symptoms of a silent heart attack. (Apparently mine was of this polite variety.) Just so you know, those symptoms are pretty much identical with “stuff that happens to you when you are older than forty”. I read the list and thought “wow, I’ve been having this heart attack for ten years. Wicked.”

But behind all my joking (which apparently amuses no one except me, but whatever; if I keel over dead tomorrow, I’d like my final post on social media to be both entertaining and creepily prescient), there’s an undeniable truth. I’m pretty sure I already knew this, but as it turns out, I’m mortal.

For parents of people with disabilities, that mortality feels like it comes with a heavy price. It caries fear, not just of death but of the chaos it leaves behind. That brooding fear is inevitably accompanied by guilt for abandoning someone who needs me and will likely always need me, even after she no longer has me.

And that weighs on me.

Schuyler and I have been talking about this, because I don’t believe in hiding the hard stuff from her, not one bit. She sees through my dumb jokes and cavalier attitude. She knows what could happen, and she knows she’s not ready for that world. She might actually be wrong about that, which is a thought that eases my worry a little.

But we’re not ready to be done with each other. We have adventures left to embark upon. We need more time, we have beautiful, risky ventures awaiting us. I’m not ready for that to be done.

A few days after getting that fun phone call, Schuyler and I grabbed my tiny euphonium and drove a couple of hours away to join a bunch of other low brass musicians in playing Tuba Christmas in Wichita Falls. The next day we did it again here in our own town, and we’re going to hit two more next week, including Christmas Eve in Dallas. I’m still in love with being a big dumb nerd and playing my horn with other big dumb nerds. I still want to get a tuba before I die. (I even found a used one super cheap that I love, if anyone feels like throwing their money away to grant the dying wish of a feeble old man trying desperately not to go into the light, coff coff…) I actually got paid the other day for playing the ophicleide in public for people who weren’t even being held against their will, which isn’t nothing. I’ve got shit to do.

And I have a remarkable young lady to do those things with, and more. I have someone I need to walk down the aisle one day. I have unborn grandchildren to meet. I have glorious risks to take and a rowdy, rough life to live. I’m not loving being faced with the tangible suggestion that I could run out of time far earlier than I’d planned. My father died from a crap heart at fifty-one, the same age I am now. I’m not a big fan of repeating history.

If I am out of time, perhaps this is how I’d like to be remembered, in a photo taken last weekend by Schuyler, my biggest fan and the engine that runs my faulty but doggedly determined old heart. Just a dork with a really dumb hat and a tiny euphonium. I could do much worse.

Lily Pads

Okay, so let’s get this out of the way first. I was wrong. I was very, very wrong.

A few years ago, I wrote a blog piece about something I saw online, a photo of a group of speech language professionals seated around a table, communicating with each other using AAC devices. To my reactionary eye, the photo was troubling. It felt like just one more exercise for able-bodied people to “get” what it must be like to have a speech disorder like Schuyler’s. It looked bad to me in part because I was seeing it linked on the Facebook page of an AAC company, which felt unseemly to me. Worse to my eyes was the fact that they seemed to be having a lot of fun. My indignation raced out ahead of my brain.

I posted a blog entry with my observations about what I perceived to be an ill-conceived stunt, and it lasted maybe half an hour online before my editor contacted me. She was getting pushback from the therapists in the photo, she said, and while she was willing to leave the post up, she wanted to give me the opportunity to choose its ultimate fate. I did what I should have done before tapping out a single word; I reconsidered my snotty position. And then I removed the post.

Last week, Schuyler and I joined those same speech professionals, including Lindsey Paden, original developer of what came to be known as the Chatterbox Challenge, and we participated in an identical session.

And it was fantastic.

Turns out the Chatterbox Challenge, which you can read more about here, isn’t about sympathy, and it’s not about being inspired or showing off the technology to the world or raising awareness or anything else like that. The object of this immersive language exercise is simply to promote familiarity with the language system and the strengths and inherent challenges involved in communication with AAC. The goal is nothing more or less than to become better at prompting and modeling AAC systems to our kids and our clients. (None of this was a secret back when I wrote my ill-advised blog post, of course.)

As a participant, I learned a great deal. I saw how in order to keep up with the flow of conversation, quick steps and approximations were often necessary, (Someone asked me how our trip from Texas had been, and I ended up answering “We had a good flying,”, because those were the words at my fingertips and it told the story just fine.) I understood in a more visceral way how the delay in producing conversation via AAC can silence a user, and how increasing the speed of speech production was vital, much more so than accuracy. We learned stuff, and God forgive me, we even had a little fun, too.

So there you have it. I was wrong all those years ago, and to anyone who read that original post or who felt criticized by it at the time, I am officially apologizing, both for being so wrong about you, and for being kind of a dick about it.

Glad we got that out of the way. Moving on.

Bridgeway Academy's Samantha Lyle, Lindsey Paden and some hobo who wandered in.

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In looking back over the past few months, or even really the last year or so, it feels like we’ve been in this truly transformative period, in Schuyler’s life and also in my own. High school graduation, the PMG conference, Australia, and then her internship, all of these things have rolled out for her like a production line of change. Schuyler has never been much for routine, but still. It’s been a lot, and it has left her feeling a little swept off her feet. Not in a bad way, but still.

After the ISAAC conference in Australia, we were invited by Lindsey to come to her workplace, Bridgeway Academy in Ohio where she serves as Director of Therapy Services, in order to share our story and our observations with that community. For Schuyler, and for me as well, this also presented the opportunity to get to know people who were already becoming important in our lives. When we left, it was with our scope of family greatly expanded. That’s not a small thing, not for either of us.

Bridgeway Academy’s stated mission is to inspire the potential and celebrate the ability of every child. That sounds lofty, but when we visited, we got to watch how that works up close. It really is extraordinary to see talented, compassionate people in their element, and to watch the results of that good work bloom in front of you. By the time we presented last Thursday, I wanted very much to impress these people. I hope we managed to do that, maybe just a little.

As for Schuyler, she represented herself with poise and style, and once again I couldn’t be more proud of her. She’s becoming a good self-advocate, and she’s getting a better idea of what she wants that to look like in the future. Not just for herself, really, but for those like herself “with little monsters of their own,” as she said in her presentation. I could see her working someplace like Bridgeway one day. I can imagine that very easily.

“As a writer, I hate to admit this,” I said in my speech last week, “but our biggest moments usually defy description. The relationships and experiences we make in the course of our lives define the paths we take into the future.

“We’re all just little frogs trying to cross the swamp,” I continued, “and there are alligators and snakes waiting to gobble us up, to be sure. But there are also lily pads. We search for the ones that will support and sustain us, and that’s how we find our way.”

In recent months, we’ve found some crucial lily pads, and our lives have been enriched beyond measure as a result.

Uncharted: An Exploration of AAC, Advocacy and Agency

October 11, 2018
6:00pm
Uncharted: An Exploration of AAC, Advocacy and Agency
Featured speaker, with Schuyler Hudson
Bridgeway Academy
2500 Medary Ave, Columbus, Ohio 43202

Please RSVP to Janelle Maur at jmaur@bridgewayohio.org to let us know if you will be attending. $5/person and $20 per family maximum. CASH ONLY at the the door. 

Bridgeway Academy welcomes Robert Rummel-Hudson and his 18-year-old daughter Schuyler for a presentation and discussion about advocacy and agency for users of AAC (Augmentative and Alternative Communication).

Robert Rummel-Hudson is an author and advocate based in Plano, Texas.

His 2008 memoir, Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin’s Press), tells the story of raising a little girl with a disability and learning to become the father she needs.

Robert is joined by his daughter Schuyler, a recent high school graduate who uses AAC and participates in Project SEARCH, an employment internship with Baylor Scott & White Hospital in Plano, Texas. In July, she participated in a leadership workshop for AAC users at the ISAAC Conference in Australia. 

For the past several years, Schuyler has joined her father in his presentations, giving her own perspective as a young adult with a disability discovering her own path to agency and independence. Together they examine Schuyler’s journey through public school, implementation of her AAC technology, finding their authentic family, and the larger issues surrounding employment opportunity, social integration and building a truly inclusive society.

https://us.macmillan.com/books/9780312538804

The Few Things

There’s a lot I could tell you about Schuyler’s trip to Gold Coast, Australia for the 2018 International Society for Augmentative and Alternative Communication (ISAAC) Conference, where she took part in the Dare to LEAD workshop for selected participants who use AAC technology to communicate. There are a great many stories to tell about our trip.

I could tell you about the sense of adventure that accompanied a trip to the other side of the planet, or about Schuyler’s joy in discovering all the differences both tiny and significant between the US and Australia.

I could tell you all about how she finally got to meet my friend Lindsey Paden, and how in an instant, Schuyler didn’t just have a new friend, but family. I could tell you all about how Lindsey sketched Schuyler’s mantra “No more hiding” in lovely script on her arm, and copied a symbolic speech bubble onto my finger, and how the next afternoon, we celebrated Schuyler’s workshop by having both these sketches made permanent by a very cool Maori tattoo artist.

I could describe the conference sessions we attended and the talented professionals we met.  I could tell you my own feelings of renewed advocacy and my own continued commitment, already fired up, to helping build an inclusive, meaningful and authentic advocacy movement.

I could even tell you about Schuyler’s first legal drink (18 in Australia).

There’s a lot I could tell you about our week in Australia. But there’s one thing I can’t tell you very much about at all.

I can’t tell you about Schuyler’s leadership workshop itself. I wasn’t there.

It wasn’t for me. I didn’t have a place at that table, one where AAC users were discussing ways in which to advocate for themselves in the world. And Schuyler, my darling little baby girl who has inconceivably transformed into a young adult, didn’t need me there. She was able to handle herself entirely, and contribute and participate, without my help. I watched her improvise her way through an introductory speech she didn’t realize she needed to give, and then they broke for lunch. And I was gently shooed away.

Which is absolutely how it should be.

Schuyler’s advocacy has been growing over the past few years, although in a sense I suppose it would be impossible to really mark its beginning. She’s always been the most qualified person to tell her story. But this trip changed things for her. Suddenly it wasn’t me pushing her gently from the nest. There were other hands waiting to catch her when she took flight. A week after finding her Polymicrogyria family, she found her larger community, too.

She was ready.

So of all the stories about this past week I could tell, I think I’ll simply leave you with this. We went to the other side of the world and had a transformative experience. And I had that experience not with a child, not with the little girl who has inspired so much worry and so much wonder, but rather with a confident young adult. And that is not a small thing. In a week full of the great things in my life, that fact most of all was extraordinary.

I’ll tell one last story with a photo.

Community of Souls

“I thought I was the only one.”

It was a surprising thing to hear from Schuyler. It never occurred to me to think that she really believed she was all alone with her Polymicrogyria, and on an intellectual level, I know she understood that she wasn’t literally the only person in the world with it. But it wasn’t hard to understand why she would feel that way, or why she now understood just how very untrue that feeling was.

She quietly made that statement to me as we sat at the Polymicrogyria Family Conference in Denver last weekend, listening to the keynote address by Australian writer, speaker and life coach Natalie Roberts-Mazzeo. Natalie has been writing about her daughter Chiara online for a number of years at Chiara’s Journey and Miracle Mama, and her keynote address to the conference was powerful and deeply moving. More to the point for Schuyler, however, her story of her five year-old daughter with PMG felt very, very familiar.

All the stories we heard felt familiar. And it was in that familiarity that the real value of the conference could be found.

I’ve written about PMG a great deal over the years, so I won’t go into it too much here. It’s not as rare as we believed it was back when Schuyler was diagnosed in 2003, when her doctors found fewer than a hundred confirmed cases, but it’s still rare enough that we are unlikely to even meet professionals who know about the disorder, much less another person with PMG, unless it’s at an event like this one. Schuyler’s sense of uniqueness and perhaps even isolation has grown out of having friends with their own disabilities like CP or autism that come with a community. It’s hard to be different; it’s more challenging to be different even among the different.

But this weekend, almost two hundred Polymicrogyria family members converged on Denver, including about thirty young people with PMG. And just like that, Schuyler was among her people in a way that she’d never experienced before. She was the oldest with PMG, if I’m not mistaken, and honestly, the one with the most subtle impairments. I think she noticed that. I watched her empathetic nature bloom as she played hard with the younger PMG kids. They adored her, and she loved them right back. She was everyone’s big sister, in a way that was a little bittersweet.

It was bittersweet because we always thought Schuyler would be a fantastic big sister. When we were warned that there was likely a 1-in-4 chance that another child would have PMG and that it would almost certainly manifest itself less gently if it recurred, however, we made a hard choice not to have any more kids, and we never discussed it again. That was thirteen years ago. And that was that, until the doctor who diagnosed her casually mentioned during his video presentation on the ongoing research into PMG that for kids whose PMG manifests itself like Schuyler’s, the cause isn’t genetic.

That was hard to hear. That’s all I think I want to say about that.

We gave our presentation on the last day of the conference, and while I think my part went pretty well (aside from a Marco Rubio-style dry throat moment), it was Schuyler’s presentation that landed with particular impact. It’s not hard to understand why. The word “inspiration” is problematic at best in the disability community, and I try to use it sparingly. But when families and people with PMG looked up and saw a formerly non-verbal kid like theirs sharing her experiences and her thoughts and dreams using speech technology, and when they met her and saw how well she communicates now and the promise of her future, I think they were reminded of possibilities that have been perhaps hard to believe in.

We’re not the only ones who have felt isolated and alone with Polymicrogyria. We’ve all sort of marinated in the dire predictions and the dark prognoses that come with a PMG diagnosis. We’re not the only ones who had this mouthful of syllables attached to our children and then sent out into a world that wasn’t prepared for them or for our questions and fears. There’s no promise inherent in Schuyler’s manifestation of PMG, no suggestion that her fate is going to be anyone else’s. But it’s important to remember that all the dark predictions that most PMG parents seem to get upon diagnosis were the same ones we received all those years ago. Schuyler doesn’t represent the future to anyone, but perhaps she suggests possibilities, and that’s not a small thing.

I’ve presented at many conferences and gatherings over the past decade, and they’ve all changed me, made me a smarter and more empathetic person. I’ve been profoundly fortunate to have these opportunities. But this was special. This was family. I met devoted parents, including a bunch of extraordinary fathers, and I was privileged to meet their beautiful kids. And it is my most sincere hope that the growth and the community that we all felt for one summer weekend in Denver won’t dissipate as we return to our lives, the ones we all lived before but which now seem transformed.

There’s work to do. I have no doubt at all that these families, this one newly minted large family, will get that work done.