eSCAping Type 1

In 2019, the school I taught at reinstated March as “Inclusion Month” – a month filled with speakers and fundraisers and events to promote the acceptance, respect, and inclusion of all individuals. So, in light of this, I took a couple of days to do something a bit different in my classroom. (What? I wasn’t actively test prepping!? It’s okay, I’m no longer a teacher.)

I said to my students, “The best way to learn about something is to ask questions, right? Now, part of Inclusion Month is learning about disabilities so you can better include people who have them. And lucky for you, you all personally know someone with a disability whom you can ask questions!”

Pausing here, I had a genuine mixture of blank stares, thoughtful nods, and some audible “Yeah, my grandma has a wheelchair” whispers to friends. After my heart was done melting – because how cute is that that these teenagers don’t automatically view me as a “disabled person” – I said, “You guys… me.”

Ohhhhh.

I passed around a few stacks of Post It notes, told them to take as many as they wanted, and asked them to anonymously write down ANY questions they had for me about living with SCA. I’d read through them that night, and answer whichever ones I felt comfortable discussing next class.

Now, this post has a few objectives: 

1. Teachers, it’s okay to show students you’re human. I’m not saying you should confess your whole life story in class, but modeling your comfort and trust with them is a great way to fuel that classroom environment and foster participation. Remember, respect is a two-way street.

2. Maybe you blog readers have some similar questions? Or these students’ questions will inspire some of your own? Feel free to email me or leave a comment and I’ll respond to what I can! Keep in mind, some answers may be found in other posts, but as pop music proves – repetition doesn’t hurt.

* UPDATE 9/17/22 – Scroll to the bottom of this post to ask me a question there! Plus, some of my answers have changed, so feel free to repeat questions!

3. It’s a personal blog, & I love a good spotlight.

So, here are 10 of their actual questions (which I saved to a Powerpoint) and what I assume were my verbatim answers:

1. Did you go to a normal high school?

Yup! That is, if you consider the local public high school “normal.” My symptoms didn’t start showing til after college, so I had a pretty typical high school experience. I was on Honor Society and Student Government and all that good stuff. I even did Varsity Gymnastics and Varsity Cheerleading… which is a sport, and I have two Sectional patches I can bring in to prove it.

2. Would you ever decorate your walker?

You know, I always thought I would. But now that I actually have one, no. Using a rollator when you’re young (and I am young!) gets you a lot of attention as it is. I like to remind people, in any way I can, that I’m a real human being, so I’d rather have that attention on me, rather than my walker. Though it’s also pink, and I’m not opposed to glitter…

3. What hobbies do you have?

Reading, duh. Seriously though, I love reading. The Harry Potter series will change your life. And watching Netflix. And I’m actually in the middle of writing a novel, so that, too. Luckily, I’ve always enjoyed those things, and I can still do them despite SCA. Anything that can take me far, far away without actually leaving my couch.

4. Do you go to Physical Therapy?

I should! Actually, I used to, until about a month ago. And before that I did boxing lessons twice a week up in Buffalo, specifically designed for people with Parkinson’s disease, which is similar to SCA. But both of those had me doing things I could do at home, for free, on my own time. Except that I don’t exercise at home, for free, on my own time. I’ve even tried pilates & yoga videos, but I don’t stick to it. Exercising has been proven to help slow down or even reverse symptoms, but personally it’s when I have to deal with my symptoms the most, which then makes me feel the worst, so I avoid it, even though I know I shouldn’t…

5. Do you ever feel excluded?

By people? No. By buildings and activities? Yes. My friends and family – and even you guys – invite me to everything and include me no matter what they have to do to help make that happen. But if a building only has stairs with no elevators or ramps, and if everyone is going up to the third floor to a trampoline park or play indoor soccer or something weird, I obviously can’t be included in that. But I don’t expect to be. That’s no ones fault, you know? It’s impossible for every event to accommodate every person, regardless of disabilities. Just don’t ignore people – that’s an easy way to exclude someone without realizing it. And remember to ask questions, don’t just assume answers – get why we’re doing this?

6. Did your husband know about your disease before you got married?

I’ve known Cody since I was 8, sooo yup. We actually met (and dated!) each other in 3rd grade … and then took like a 13-year-break until he proposed to me right in our third grade classroom (awwww!). But he helped my family take care of my dad as his SCA progressed. And he’s been with me since my symptoms started, so we knew what was going on right away. And he still married me! So, he’s pretty awesome…

7. Can you have kids?

I sure can 🙂 But they have a 50/50 chance of inheriting SCA. But now scientists can genetically test embryos for certain diseases before they even start developing, and then hospitals can implant the healthy embryos! But that takes a lot of time and money. So that’s why I don’t have any kids. Yet.

8. Have you ever done drugs?

Hahaha – did one of you really expect me to be like, “So, let me tell you about this one night in college…” Obviously my answer is no! Though I am going to give you the benefit of the doubt and assume you’re asking about medical marijuana? In which case my answer is still no. But that’s because SCA is so rare that it’s not on the list of approved diseases in NYS. I’m sure I could legally get it, but it’s a whole process I haven’t had time to deal with, yet. I’m not against it – I actually think it would help some of my symptoms – I just have other priorities right now.

9. Are you going to die sooner than most people?

One crazy thing about life is that none of us know when we’ll die. But, basically, yes, SCA Type 1 does shorten lifespans. My dad died when he was 52 from this disease. It’s progressive, so I’m going to keep getting worse, we just don’t know how quickly or at how steadily of a rate that’ll happen. But one of you will grow up to be the genius that finds a cure for all diseases, so we don’t have to worry about that, right?

10. What is your biggest accomplishment?

Living with Ataxia is a pretty big daily accomplishment, I think. Or the fact that I’ve driven (well, ridden) across the entire country three separate times. Or that I won first place for Floor Exercise at a National Gymnastics competition when I was 12. Or that every single student I’ve ever taught has passed the NYS ELA Regents Exam. Really though, I’m going to publish a best-selling novel within the next five years, so my biggest accomplishment hasn’t happened yet.

 

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In light of #IAAD22, the NAF created a campaign called #AskMeAboutAtaxia –

“A great way to spread awareness is to encourage people to learn about Ataxia. The best way to help others understand something that they are unfamiliar with is to allow them to ask questions… Our goal is to get a conversation started. If you give your friends and followers the opportunity to ask questions – you never know how many people you might reach! Share what you know about Ataxia and your experiences…”

So, go ahead and ask me ANYTHING about living with Ataxia, from now until 9/26. It’s anonymous – I won’t know who asks what. And I’ll answer them all in my next new blog post!