Prompted To Reflect On My Own Disability
Last updated: July 2023
I recently happened upon a book about a disabled individual. It was an interesting read. I am a reflective person, and reading the book prompted me to think of, well.. me. My own life and my own struggles and my own perspectives living with my own disability.
My disability is ever present
I grew up with no health issues. Well, I was always slightly anemic. And then, as an adult, 37 years old.. wham! I was diagnosed with relapse remitting multiple sclerosis (RRMS). Over the years, sadly, my condition has negatively affected my fine and gross motor skills more and more and more. Additionally, there are seizures, and then the more common symptoms like numbness, tingling, fatigue, incontinence issues.
I started with a cane and am now wheelchair-bound. And there are the effects of MS such as a life of unpredictability, uncertainty, and progression. I transitioned into secondary progressive multiple sclerosis (SPMS) several years ago.
My disability is pretty much ever present in a plethora of ways. For example, I'm sedentary, I have limited use of my weakened, curled hands, and I can no longer live an independent lifestyle. I must identify ways to live and not just exist, as opposed to being free to spontaneity or being able to simply 'be.'
It affects my life in many ways
And lest I forget there are the struggles I endure with my disability. To name a few, there are:
There are activities or events that I'm graciously invited to, but I can't, won't, or am leery to attend because it's not 'disabled-invitee friendly' or 'disabled invitee conscientious.' Or the frustration of establishments or areas that provide bare minimum handicapped accessibility.
There is the internal struggle of feeling burdensome on loved ones, even if they don't want me to feel this way. Or trying to stay 'up' sharing a world with my disability amongst many that do not have one.
Feelings of frustration
My job that I loved was reluctant, if not accepting at all, in what little accommodations they allowed me or that I needed. There is also the financial system the government provides for those who can no longer work due to their disability, and their stringent limits on your financial gain.
Trying to supplement my monthly Social Security Disability income could potentially mean a reduction in my already modest income, and even risk a stop to my health insurance. (Both highly important when I am trying to live as financially independent as possible. And considering the inflated costs of prescription, assistive aids and such, insurance is a must.)
Challenging on many levels
Oh yes, being disabled requires work, thought, and savvy. I feel like trying to 'figure it out' is a constant in my life – and the answers seldom come without difficulty. It is no easy feat and challenging on many different levels. Physically and emotionally, living with a chronic disability, particularly MS for me, can definitely take its toll.
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