My Renewed Fight for Disability

By Mia Maysack, PNN Columnist

There are millions of people who are figuratively standing in line, waiting to be granted benefits under Social Security Disability Insurance or SSDI. It usually begins with a person filing a disability application on their own behalf, declaring that they are unable to work, followed by the certification of medical professionals. They are the first baby steps in what can be a very long process. My application took four years before it was approved.

To get it, I represented myself in a court of law and essentially begged on my knees, pleading with detailed reasoning as to why my personal situation affects and at times strictly prohibits any version of what could be considered my working “ability,” let alone “normalcy.”

Not too long ago, I received a notice that a decision was to be made on whether or not I still live with a post-bacterial meningitis related traumatic brain injury that causes intractable and chronic mega-migraines, along with cluster headaches and nerve damage. I do, in case anybody was wondering.

But after two Social Security assigned medical reviews, it was declared that I am no longer disabled. News to me! The memo must have gotten lost because my body has yet to receive it.

Having worked since the age of 14, up until a few years ago, and only after pushing myself almost to the point of death, the disability checks I’ve been receiving consist of money I contributed to the taxpayer pot. I was grateful for it, knowing that many others have it worse in their own ways, even though the dollar amount is limited to covering a shelter over my forever hurting head.

The gift has been not to have to wrack my brain any further, figuring out where I can live. This has been a blessing, because I am then able to promote the full-time job that is self-care demanded by my ailments.

Constructing a non-mainstream path and not allowing challenges to completely dictate or entirely limit my overall quality of life does not lessen what I endure. Nor does it suggest having been cured or even improved.

It is generally understood that a governing “system” is in place to protect those of us who are not attempting to cheat or scheme to get disability. But let me tell you, our skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary and reproductive systems are continuously being violated and discriminated against by that very same “system.”  

The mourning of past lives and broken dreams is a permanent condition for me. The trauma of living and reliving what has transpired never ends. My symptoms are chronic and unpredictable, which inconveniences no one more so than it does me.

My body, my rights?  My ass.

Whether I can walk on the date of my upcoming appeal or have to crawl, I’ll fight however I can to make these points heard on behalf of everybody.           

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is also the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.