Dear Universe, I’m listening…

Accosted at Costco

Last night, after a day of feeling terribad, I managed to drag myself out of the house and go to Costco with Adam and Henry to pick up some needed supplies and eat cheap pizza.

For the first time in years, an older, overweight, white gentleman looked at me with anger in his eyes, and said, as we were walking to the store, “WOW! Which one of you is handicapped?”

I didn’t miss a beat. Rather than being rude, I locked eyes with him and said, “Me!  Epilepsy and multiple sclerosis. Thanks!” And under my breath, I muttered, “You fuckin’ asshole.” Part of me wanted to answer, “None of your fuckin’ business, douchebag!” but honesty meant that he had the opportunity to understand both that he’s wrong for asking, and that I am not ashamed of my disability.

I spent at least the next 30 minutes trying to figure out why I was so furious, and why I couldn’t calm down. Was it because someone thought that they should be policing my body? Was it because I didn’t look disabled enough for someone to show basic compassion? Nah. I’m actually proud that I’ve done enough exercise to be able to walk well. But I finally figured it out…

I was pissed because every time a stranger calls me out over my parking space, what they’re really doing is publicly impugning my honor and my husband’s honor, since he’s the one who drives.  They’re suggesting, loudly, that we are liars — that I’m not really disabled, and that I don’t deserve the space.  And dear LORD, I wish that were the case.

Yesterday, I was actually feeling so badly that I almost didn’t go to the store. I hadn’t bathed in a couple of days (I don’t shower when I’m feeling shitty for fear of falling, and I need Adam at home with me in case of that.), so I put on extra deodorant and a baseball hat to cover my greasy hair. I was wearing pajama leggings and one of Adam’s old t-shirts with no bra — because yesterday, bras hurt too much to wear.  My arms were stinging, my legs were heavy, and I’d been battling stomach issues since I woke up.  But, apparently, I didn’t look disabled. I just looked like a slob. (Ha! Both can be true.) I dared to go to the store anyway, because I know how important it is to get up and move, even if it’s just a little bit of walking… and I had to get the fuck out of my house. Stir-crazy is no good. I don’t regret it.



Yesterday also happened to be Yom Kippur — the holiest holy day of the year for Jewish people. So, technically, I shouldn’t have been going to the store at sundown anyway… but my faith is anything but traditional.

Before getting in the car, I told Adam that I felt like the self-flagellation practice of the holiday didn’t make a lot of sense for me anyway. I could tell you (or G-d), without blinking an eye, everything that I think is wrong with me, and apologize for it any day of the week — but I have a lot harder time finding the things about me that I should celebrate and thank the Almighty for. If I need to atone for anything, my strong suspicion is that I need to atone for not recognizing or using my gifts to their utmost.

The whole point of Rosh Hashanah and Yom Kippur, and the Days of Awe in between, at least as far as I have groked, is to take stock of where you are in life, get right with yourself and everyone else, and start a new lap around the sun with a better attitude about life and renewed determination to be the best version of “you” you can be.

So, I didn’t just take the stranger’s provocation just at face value. I also felt a nudge from the Universe, reminding me to write here.

I actually started this blog after the first time someone accosted me for parking in an handicapped space. That was back when I could still drive.  I like to joke that I’m just in it for the parking because it’s a better attitude to have towards my disability than to sit, mired in self-pity.  Gratitude wins every time. So, here’s my prayer of thanks, patterned off of memories of temple services long-since attended.

If I must be disabled by seizure disorder and MS,

  • At least it makes parking easier.
  • At least it means I get SSDI and guaranteed medical insurance.
  • At least it means that I get to spend time with my son instead of having to send him to daycare while my labor generates wealth for others.
  • At least it means that I get the chance to individually tutor my son so that he can learn at his own pace.
  • At least it means that I get the chance to explore a side of femininity I would otherwise have entirely ignored due to internalized misogyny, and attempt to be a good housewife.
  • At least it gives me the time to check in on the people I love and offer them support.
  • At least it gives me the opportunity to participate in online support communities and help strangers who are suffering, on a daily basis.
  • At least it consistently helps me grow with regard to empathy and determination.
  • At least it challenges me to find ways of being that honor my past and build possibility for the future.
  • At least it helps the people who care about me grow in their understanding of our shared humanity.
  • At least it gives me the chance to write and be creative, and in doing so, to honor this experience and connect with others.


There’s Never Been A Better Time To Have MS

So, there’s never a great time to have MS, but really, really, it’s been as great a week to have multiple sclerosis as there can be.  There’s been a ton of research that’s come out with regard to the cause(s) and mechanisms by which the disease actually works.  This gives me a ton of hope for the future.

Here are some important news stories that have dropped in the last week.


Starting Fresh

And in the spirit of being the best “me” that I can be, I’ve decided to massively decrease the amount of support that I give to Facebook by providing content. The news came out in the last week that they’ve decided to allow advertisers to lie, and that content that would get users banned will not be considered ban-worthy if it’s coming from politicians.  I think that’s outright foul. FB isn’t just facilitating defamation, they’re supporting it.

So, I’m taking my community-curating, constantly-posting-content self to MeWe.  I’d love to see you there.


And one last thing…

Apparently, it’s also World Mental Health Day.  I still suffer from depression, anxiety, and PTSD. I am have worked in therapy for years to feel better, and I am not ashamed. If you are struggling, please reach out. There are good people out there who want to help you. I’m one of them.

*cracks knuckles*

It’s been 2 months since my last post.

In part, it’s because I spend a truly absurd amount of time scrolling my Facebook timeline. I’m not sure I’m not just stimming half the time. The other half of the time, I’m 100% sure that I’m helping people — most of whom, I will never meet.

For folks who aren’t savvy about stimming — it’s a term that describes repetitive behavior (usually physical) that acts as a psychological soothing mechanism. It’s typically discussed in connection with autism, but it’s also totally common in other non-neurotypical situations. For example, fidgeting/leg-bouncing and ADHD go together like PB and J. Personally, I remember threats from teachers in high school about my near-constant unconscious tapping. (Not saying all drummers naturally stim, but…) I definitely struggled with anxiety, depression, and perfectionism during those years, so learning that I was stimming that whole time was a bit of a revelation.  I honestly don’t think I’ve ever been neurotypical, and the more time I spend in online support groups for parents of gifted children, the more likely it seems to me that stimming is just as common to folks whose minds are constantly active as it is for folks whose minds force them to shut down.

Speaking of gifted children… another part of why I haven’t been writing is because I’m busy mommying. Henry’s 4 now, and we’re in full-swing on this whole homeschooling thing. We watch a lot of educational stuff on YouTube, read a ton of books (him reading to me almost as much as I read to him), and he plays so many games.  Dragonbox Numbers goes perfectly with BBC’s Numberblocks, btw.  Writing Wizard pairs brilliantly with a Magna Doodle. Monkey Word School Adventure (or any of the Monkey Preschool series) goes very nicely with Mommy getting to wash the dishes or take a shower in peace.  Of course, New Super Mario Wii & Wario Land Shake It! are no slouches in that department either.

But, perhaps the biggest reason that I haven’t been writing is because somewhere along the lines, I got this misguided, toxic notion that this blog is nothing more than narcissism, and that writing about my life is both self-indulgent and not particularly helpful to anyone but me. That shame spiral kept me real quiet and outwardly focused.

I have repeatedly considered taking this whole blog down and saving a copy of it, just in case I felt like reading it when I’m old, like I did with my LiveJournal (which, btw, is on a laptop I used during law school that I cannot get into because I cannot, for the life of me, remember my password. Oops.), but something always makes me hesitate.

Then, this past weekend, I got the notifications that I’d paid for re-upping the domain name and yearly domain pointing on WordPress, and was contacted by a total stranger who told me that my writing about MS and the ketogenic diet had positively influenced her. I thought that was pretty cool.

So, in the spirit of not being wasteful of money, thoughts, or opportunity, I’m going to make a real effort to write and remain both hopeful and vulnerable here. Thanks in advance for your patience with me while I dust off my digital quill and try to get out of my own head.