Dis/ability, Part One

And frankly, even if it is, you don't get the right to judge.

WHEW. What a stinking week this has been. First of all, maintaining multiple blogs isn't easy. While my other gig is mostly promotional work, I like to think it's just as important, because I'm helping grow my community AND raise awareness for some pretty rare diseases in the process. If you're curious what I get up to in my "downtime", check out the link HERE.

I shared the image above because it's one of my favorite Unchargeables designs (I own it on the most comfortable shirt ever and I rock it a LOT), and because it's also been on my mind pretty heavily over the course of the past week. Disability in general, that is - both my invisible challenges and my husband's visible ones.

It's been upwards of 100 degrees here in Abu Dhabi lately, at the start of May. It's ridiculously hot, and we've also had our fair share of sandstorms thrown in lately. Today, for instance, I can't currently see past the stadium outside our windows. The rest of the world simply doesn't exist.

Sandstorms don't typically make me that miserable, besides aggravating sinuses and allergies. The pressure changes and the wind are worse on Jon. For me, it's the heat. Heat causes my nerves, which are already experiencing difficulty thanks to damaged myelin, to transmit signals even less effectively. This slows my mobility, cognitive processes, and for some reason, gives me awful stomach cramps. I'm not sure of the mechanism behind the last one but it's definitely a fun new problem.

I recently completed my neuropsychological examination, a test designed to gauge where I'm at mentally, cognitively, and psychologically - more invisible factors of MS than the physical symptoms most doctors treat. I came out of it extremely well, even better than my therapist predicted I would do on some parts, and didn't really rack up any new diagnoses. We already knew I had depressive and anxiety disorders, both of which were probably in place long before the MS moved in, but both of which are complicated by a brain that's a little slow. I have problems with verbal working memory (if you tell me something I'm gonna have to ask you to repeat it several times most likely) and short term memory storage (rote memorization is NOT my friend). I also have cognitive difficulties when it comes to planning and a few other executive brain functions.

Long story short, I'll be attending Occupational Therapy when I come back from my summer visit to help suss some of this out, as well as build strength in my right hand/arm which does have some measurable weakness. I'm gonna have to train myself to be slightly more reliant on my left hand for things, which will be another fun challenge.

All of this is invisible disability. It doesn't get seen by the average person, and neither do my migraines or my neuropathic pain, both of which are thankfully well managed at the moment. That being said, on the outside, I look like a relatively healthy 29 year old woman, which means that any time I need/ask for disability help, it usually elicits at the least questioning looks and at the most, outright verbal prejudice/disbelief. It makes me super nervous for my upcoming travel, but fingers crossed that will go smoothly.

I thought having an invisible disability was hard enough to navigate, and then Darling Spork started having mobility issues. He's now on crutches 95% of the time, and on really bad days, he's in a chair.

You wanna talk about challenging? Try being disabled in a country that *technically* has accessibility, but in practice, is absolutely absurdly inaccessible. That is a whole other rant, however, and in the interest of keeping things in reasonable bite-sized posts, will be addressed in part two.