Disabled & Dismayed
I got diagnosed with Multiple Sclerosis in January 2018. Devastated I did not even realize that wouldn’t even be half of my battle.
I came home from a 2-month hospital stay to a new world. The only person I had left for me in the world was my mother, and she was having a battle was,t aware of yet. She was fighting Dementia and memory loss. I was now her brain, and she would become the body. We were a team like never before.
I had no insurance and was now fighting a disease without a cure. She had insurance but not the help needed. Over the next 2 years I would get disability, and they would deny everything I needed until I'm now typing this from a hospital bed in her home. I still fight to try to get the care for MS to improve, so I can be there for her and have an active life again.
I struggle to type this because of emotions and the effects MS has had on my right hand. As if fighting this wasn’t enough we now live in a world of COVID-19. Can it get any harder? Every day is a learning experience and something new to overcome. She is my hero and I feel worthless much of the time, and I am trying to repay her with kindness and care she deserves.
I am only 45 and could be in store for 30 or 40 more years of this. She is 68 and the frustration and cigarette addiction making her decline speed up. We aren't unique in this world or country. MS is growing and so is Dementia in our population. We live where healthcare isn’t guaranteed. Where it’s not a right as it should be. I worked my whole life but was denied disability for 6 years and now that I have it they deny me most everything I need to make progress.
How can I do a better job being there for her when I can’t be there for myself? So much needs to be done in this country. We live in a national fraud that can’t provide for those who built this empire. Saying Black Lives Matter does mean all lives matter so say BLM and fight for it. This post is about everything because thanks to MS your thoughts go everywhere.
I will shut up for now and write more soon. There is so much to say and more to be done. I fight for her, I fight for something bigger than myself even as I lay in this hospital bed. I will never be at peace, I will always fight for progress and that in itself is a form of turbulent peace.