Although I didn't initially know I was going to have a platform to write about my symptoms and experiences, I never gave up hope on a diagnosis or understanding my symptoms and because karma would eventually want to correct that wrong.
Now 8 years into a diagnosis and I am still learning about how my symptoms present neurologically, I'm not done with it, why I present a certain way and why I will always be tied to my neurological symptoms.
That is all others need to know. That we must allow anyone disabled to present the way they present, no matter how hard that is. Sadly, having always struggled to understand my neurological symptoms with no support, left me irritable, frustrated and angry, primarily because of other’s misunderstandings towards me.
After my initial diagnosis and now with a vast amount of research behind me, knowing I am as I am because I have Sensory Processing Disorder, has brought about a new calm. Where people like me with a disability have understanding, there may still be frustration from others, who find it difficult to accept the way we are, primarily because they fail to accept themselves.
But knowing anyone who deals with a disability, large or small takes a different kind of understanding, one which can test resilience, patience and tolerance. Being around anyone who deals with a disability, is not perhaps always a life others would have chosen for themselves, not to mention the emotional battles that potentially comes with that life.
The practical costs of anyone sharing their lives with someone disabled is huge, but when it comes to any form of disability, I’m not sure how many of us consciously think about that and how it all plays out. Unless you're working with the disabled and you're coming in with a different viewpoint, sadly there may be an element of biased unconscious reckoning.
It is only when the experiences set in, the emotions take a knock that we either cope, or we begin to struggle.
I agree dealing with anyone who lives with a disability takes tolerance, patience and understanding.
Perhaps that's the problem; there is less tolerance in the world today, regardless of whether we know someone who deals with, or we share our lives with someone who deals with a disability and that is what needs to change.
Thank you. Yes, your last paragraph sums up your response nicely. Having more tolerance around disability; couple that with patience and understanding allows us to perceive our lives around those who have to cope with a disability.
No one asks to be born with a disability, but they need to have understanding from those people around them. Sadly, society shines a light on disability every time and usually for the wrong reasons.
It isn't right that people with a disability are made to feel like they're the ones at fault, or they present in a way that makes them slightly more intense than someone without a disability.
Wow, great reminder to us who have loved ones and friends who love us for who we are and choose to stay, regardless of how 'difficult' we may be.
A while back, I was afraid my husband would leave for someone more able bodied and energetic, then I was thinking, can I blame him? But no, he has stuck around and been there, way more than I give him credit for.
I have to remember that when things get tough. He took me to my operation yesterday for the muscle biopsy, took the day off and drove for 2 hours and back to get me there.
I know some people who wouldn't do that, like some family members. Sometimes we have to stop and look at how many blessings we really have.
Thanks Bonnie. Yes, I see why you would say that, but I personally don't think we're being 'difficult. We're just being us and that for me is the point.
If we're doing something and we can help it, then yes we are being difficult; but disability puts a different slant on things.
It's up to those who care for us to see that and find an acceptance on 'us' and what we have to deal with.
Oh yes definitely. I wasn't trying to say that we're difficult, but some people and society see us as difficult.
And despite that, we have loved ones and friends who accept us and love us unconditionally and then we all know people who simply don't.
We will continue to shine through being individual and soar!
Yes, society and people do think like that sadly, but people who see us as being difficult are difficult themselves.
Remember a mirror reflection always starts with us and that is what the human condition is; unless we learn to change the way we see and perceive us and others.