Manic Monday

I wake up every Monday already behind. For the past six months I have been chasing doctors, specialists, pills, and allowed many people I did not trust access to my veins, joints, and bones. I have gone from being an upright, standing, working individual to what I am today. 

But what I am today is not what they want me to be. The medical establishment in this country wants me to be a small, quiet, unassuming girl who sits quietly in her wheelchair while they decide my fate. They wanted my disability to be visible. But once it was visible, still no one saw me.

I think it’s obvious at this point that I am not willing to let that happen. I’m not willing to go along with their game. I have been feeling like a beggar on the street. Posting my GoFundMe link, creating a Facebook charity, and even taking the $20 that someone at the grocery store offered when we couldn’t buy all our food. The only "extra" money that has been spent in this house since January has been on food and pills. Of course I am grateful to my community for keeping me afloat, but that’s not the point. Somehow through all of this I still have my home, my car, and my possessions but all of the above are precarious. One extra infection or symptom that needs to be treated means less food for the week. It means we can’t even get a coffee on the way home when we’re dead tired and just want to be awake long enough to enjoy each other for a short while.

But I have two children looking deeply into me all day every day and they love what they see. So for them, I keep going…but I dream of a day when I am getting paid to sit here and write all I have to say because I am saying it for so many of us. Anyone who is disabled, over 65, or has even one injury can be left destitute because of happenstance. Most of us are one paycheck away from deciding between food or medicine. Clothes for our kids or durable medical equipment. Until we are all on a level playing field, this country is not just. There is no justice in this. And it has to stop. Thank you for reading and sharing this. You are helping me more than you know just by being here. 😊