Speaking Out On Disability

Hi! I'm GoldSashimi. I am working on a light novel series that I post here on Wattpad. I am a member of various book clubs for anime inspired works, where we read and critique each other's material and provide helpful feedback. I try to participate on a regular basis, but sometimes it's hard to do so. Why?

Although my club members don't know this, I have Multiple Sclerosis.

Multiple Sclerosis is a disease of the Central Nervous System. In simple terms, the body's immune system attacks the protective coating around nerve cells. The damage causes nerve cells, called neurons, to have difficulty communicating with one another. This can result in a variety of different issues. Weakness, fatigue, heat sensitivity, double vision, gait difficulties, memory loss; the list goes on. 

 I can personally attest to spasticity, severe fatigue, memory problems, difficulty walking, tension headaches, and sudden numbness in my extremities. MS is different for everyone. Some people with MS suffer extreme fatigue and nothing else; others seem to have seemingly a dozen problems from the disease. It is because no two cases are exactly alike that management can be difficult.

Due to the intermittent nature of the symptoms, the MS I have is called RRMS, or Relapsing Remitting Multiple Sclerosis. There are times that I have had several problems due to MS relapses (also called flare-ups, attacks, or exacerbations). There are also times when most of my symptoms are gone. Some things, like heat sensitivity, never go away. Other things, like headaches, seem to come and go at unpredictable times.

During relapses I don't feel up to doing much of anything. I can't concentrate on writing, or give thoughtful critiques to other's work. I get stressed out easily and my mood is generally quite turbulent (I have bipolar disorder as well, but that's a conversation for later). Combined with physical limitations, I can't perform any prolonged work.

I try to do as much as I can when my condition allows to make up for my time of inactivity, however finding an employer that will excuse an unlimited number of unscheduled days off due to medical complications is next to impossible - especially for someone with only a high school diploma. Because my condition keeps me from finding work, I applied for Social Security Disability Insurance. I've been denied three times.

Constant denial can be hard. I started writing (when I'm able to) to unwind. Writing is a good way to gather my thoughts in a coherent form. Creating your own world, with it's own people with their own problems, you learn a lot about yourself. The psychology of it all is very deep (maybe I'll make a post on it later If people are interested).

I try to stay physically active (that really helps to clear the mind), eat healthy (personally, I like smoothies), and stay organized. Due to my headaches and general forgetfulness, I constantly lose my thoughts; I used to lose good ideas all the time. I use programs like OneNote and Scrivner to stay organized now. These things don't work on the worst of days, but they do help me alot. Despite my best efforts, I have had several "bad days" this year. Now that I'm well, I want to highlight my struggle.

As I have a bit more energy right now, I've decided to write about my experience applying for disability insurance. In my book, titled "Able Until Proven Disabled", I not only detail my journey applying for disability, but I also talk about common misconceptions towards people with disability. While the book does go over how to apply, it isn't intended only for applicants. I believe that it is important that people also know why disability insurance matters.

Anyone who lives with a disability knows the unconscious biases people hold. Sympathy is common, but many people grow suspicious when insurance is concerned. "Are you really disabled? Just get a new job. Have you tried this yet? How about that?" We aren't lazy people and we aren't looking for free money. I can't think of a single disabled person who wouldn't rather be out and about living a productive life. We do the best we can, and some can do more than others; condescension does not help.

While outside help is always appreciated, I believe that it is important for people who live with disability to be vocal. I'm glad to be publishing "Able Until Proven Disabled"; hopefully it can change the narrative a little bit.