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Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!

A valuable lesson I learned at the DMV about my invisible BFF

A valuable lesson I learned at the DMV about my invisible BFF

I had an epiphany the day my driver's license got revoked months and months ago. The day itself was pretty rough, but what it finally solidified in my head was, well, not worth it but it was a good lesson. One that I'm happy to share, even though the incident at the DMV was traumatic. (I wonder how many times that's been said...)

Here's a detailed look at the day it went down:

...because it's important for me to show you what a day really looks like.

I woke up at 8:30, took pills, l laid down until mom came in (because, well, nausea and hangover-without-the-alcohol-type-feels), took a shower, and got out and rested on my bed for 30-ish minutes. She brought me avocado toast, and then I spent time trying on clothes (and two swimsuits) from last week that I had to buy at the store and try on at home (I went through half of my haul over the weekend but had more to go). If you're reading this and thinking, "dang! that's super tiring!" it was. I was pushing spoons for the rest of my day for sure.

Then, I took another break consisting of laying on my bed looking at something or other on my phone. After that, I made lunch (likely microwaved something which is a win because very rarely do I even have the energy/good feels for that) and took another break, this time sitting on the couch, listening to Johnny Flynn on Pandora, and staring out the window.

After a few crows flew by and fooled me because I thought they might be eagles, it was errands time! My mom was taking me today so she put on my socks, tied my shoes, and we rollator'd to the parking garage. I saw a neighbor, and mom later told me that they have a traumatic brain injury (TBI).

"Hmm", I said to my original roomie. "I like the sound of brain injury as an elevator-pitch. You know when people ask me what surgery I'm recovering from or something" (which was very likely to happen) *So technically because there was no physical impact it's not traumatic--but let me tell you that it's hella traumatic!! 

I digress...

My mom agreed that we finally found an elevator pitch that was perfect (if they wanted to know more, we could educate them on the specific brain stuff I'm going through) and we went to the (first) DMV. In the parking lot, mom reapplied my lipstick which got all over my teeth and face. I couldn't resist making a joke and said, "who's the one with an unsteady hand here!?"

We laugh, then embark, not quick or easy btw, and get all the way inside and...whoops, no licensing here. There's one at the mall a few miles away.

Great!...not.

So after turning around, schlepping back to the car, and smelling some peppermint oil because I was nauseous and tired AF, I was ready again to do this thang! But my spoons were quickly being used up, and I was determined to get this shit over with.

After ironically looking for parking (is it ok to use 'ironically' here? IDC, I'm doin' it), and crying at how many disability accessible spots were open--yet we couldn't park in because we didn't have the damn placard yet--we rollator'd in.

After the usual bright lights and loudspeaker caused me to cower and plug my ears like a late 90's version of myself watching Scream, our number was called at the furthest window. As I struggled to walk on pace with my mom, I immediately had to sit down on my chariot (aka rollator, info here) while the clerk glanced at the paperwork. At this point I was pretty bummed because I was officially unable to drive, and I felt that though the placard we applied for was temporary, it brought up in my mind this oh shit, this-is-actually-a-big-thing! type feeling. 

So mom & I are at the DMV counter and...

DMV clerk: loudly and in front of colleagues & people waiting, "Uh-oh, what did you do?" (like I had gotten in a ski accident or something?)

Me: **exqueeze me??** I thought, then said this out loud: "uh..."

Mom (flustered), interjected: "She has a brain tumor."

DMV clerk: (Again, so loudly) "oh, those are sad. My nephew has one."

Mom and me: Oh, sorry... (which is sad & totally legit but: commence eye roll)

Like...what? How was that ok?

First of all, the paperwork from my doctor tells you all you (don't) need to know. FYI it says that I have multiple CCMs, and am recovering from a stroke. So, I guess you could say it's sad. Or like maybe, if you wanted to just like read it to yourself and not comment? Yeah, that'd be great. 

Did I mention there were people being helped on either side of me? Not to mention the people waiting in the chairs behind me. I cant imagine what they were thinking. I mean, I was shocked at first. Really? Then pissed. Then sad. 

It didn't help that I was all out of spoons either because I had such a busy day.

I held back tears on our trek back to the car, which for a cognitively impaired person is really hard to do & walk at the same time. I turned drunk and slurry and just wanted to be home. Once we were in the car the floodgates opened. My sadness tears had turned into frustrated tears. 

Mostly I was frustrated at myself for not educating her on CCM or at least telling her to look at the gd paperwork. (I just had a conversation with mom about calling my BFF a brain injury, but she was just as taken aback--if not more--than I was at the time in the DMV, so 'brain tumor' was fine...although technically it's 6 lesions and 2 hemorrhages...facts are important world!)

But that day helped me.

It was really really hard, but I get it now. From getting upset for months of people telling me I looked better (I'd assume they meant better as in 'back to the usual Erin, must've not really been sick at all'), saying: "you don't look sick!", to strangers asking me 'what surgery are you recovering from?' (...an inoperable one, thanks for making me jealous of brain surgery!)

My take-away:

  • I truly think that people just don't know what to say.

For someone who has a life changing invisible illness/disability, it's a difficult thing to come to terms with. Because for me at that point talking about it equaled so many tears. It was so loaded to talk about. But then what do you say? It's complicated right?

  • Use an elevator pitch

Thankfully now my caregivers and I know to use the brain injury pitch when someone asks, then if they want to know more tell them about my brain diseases (learn more here) & how surgery isn't an option, so please don't ask.

  • Let me be the one to offer up information.

If I don't feel like talking about it, don't push it. I get super slow and grasp for words when I'm stressed out. It'd be amazing if you picked up on that, changed the subject, or told a joke! I love jokes. Just be aware that how someone looks doesn't tell their story.

A helpful tool

So my OT recommended getting business cards made with a quick description of my invisible BFF (my brain injury, aka rare brain diseases) because parents of kids with autism started doing it, others have followed, and it's really quick and helpful to hand out as needed. I'm proud to say that after getting this suggestion all the way back last year I finally ordered them with and I'm hoping to see a decrease in comments that I. Just. Can't. You know?

 Screenshot of the back of my business card. Made in  Canva , 

Screenshot of the back of my business card. Made in Canva

I know a lot more about my invisible BFF now and I'm really hoping to avoid a shut down like I had that day. I am a teacher after all, and educating people is my jam, and it's a damn good thing that I have this blog. Have you read my Why Invisible BFF or About Me yet? You can read why this whole writing things down thang, is actually really healing and empowering.

If you want to start a blog, visit my resources page. I also have a blog board on Pinterest you can check out!

If this resonated with you, leave a comment below. I'd love to hear from you!

xoxo

Ps: new to my website? Start Here.

Pps:  Need support & upliftment from other fun invisible & chronic illness/disability peeps who get it? join our closed invisible/chronic illness FB group here 

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