Part 2 of this is HERE.
Earlier this year, my wife and I went to Yosemite. Since I have a National Parks Pass for people with disabilities (THEY'RE FREE IF YOU KNOW ANYONE WITH A PERMANENT DISABILITY - NOT JUST A BROKEN LEG FOR THE TIME BEING), they gave me a tag for my car. This was so we could park in the designated handicap spots.
In my article for Health Union (see here for many other conditions and stories of those who live through them - they're much more than just Parkinson's), I wrote:
Nevertheless, in a world where the wheelchair is the symbol that many people think of regarding disabilities, what about invisible disabilities? For me, this is everything that bradykinesia does to slow people, like me, with Parkinson's down. This is also exhaustion, mental overload, medication side effects, and cognitive issues. For a friend of mine with ulcerative colitis, this is the need to always be around a bathroom and lots of exhaustion. For many of us with disabilities, apathy and depression are the permanent unwanted guest. For as good as we might look, we have our issues.
Just because you see us having a good time doesn't mean we're any less "diagnosed."
Additionally, my boots keep my claw toes in check, but without them, it hurts to walk distances. This is why I don't wear sneakers. Nevertheless, with boots AND poles, I can balance on rocks. Yes, I'm actually more comfortable walking a rock field in boots than from my car to my job.
But even when we're still ourselves (in my case Dan), we're still battling our conditions to stay us.
"Sometimes you win. Sometimes you lose. Sometimes it rains (Bull Durham)."
The point is that there are outliers who run marathons and kick butt. Sure, we can be the outliers. Most likely, we will do our thing and just be. However, we'll always have the monkey on our back to fight with. On those days, we'll get our GRRR on.
Whether you see it or not.
So in the end, I'm Dan, but I'm Dan with an evil sidekick who constantly taunts me.
For that, I have a condition that always affects me. It may not be the condition someone else thinks of being "truly" disabled. It may have come on later than another condition. Nevertheless, it's something that affects me now, and it will affect me more later.
Whether other people understand that or not, it's true. That said, whether I think I always can let me be a person first, I need to keep being Dan, regardless.
Letting Parkinson's have me is letting me turn into a pod person, and that's not happening... no matter what symptom I'm stuck with.
In a world filled with so many wonderful things to see and do (this is the Faroe Islands), anything less would be anathema, especially when I control the equation.