I sit here shivering in an art/theatre studio in my town. It is an uncharacteristically cold day here in Florida. I am “working”. I know, the quotations are a strange addition to that work, but I feel like I have place that emphasis on it.
Why?
Well, I am a disabled person. I am chronically ill. I lost my job and my good insurance when my FMLA ran out due to medical issues. To say that the last two years of my life have been a roller coaster of ups and a lot of downs, would be an understatement.
It all started in 2023 with a hemorrhage in my eye. It took almost a year to get to the point of surgery. Then things started looking up. I was preparing to return to work. I was waiting for the document from my eye doctor that would clear me for going back. Instead, my employer waited until my FMLA ran out and then terminated me. Welcome to Florida, the right to work state. It was a dirty trick, but I suppose it was for the best. As I prepared for an interview for a new work from home job that paid $6 more an hour, I had a doctor’s appointment to go over some bloodwork. They did not like the numbers associated with my kidneys. I was sent to the hospital.
Life changed. I was diagnosed with end stage renal failure. My kidneys had failed, completely. I would need dialysis. Forever. I was 44 years old. Feeling in the prime of my life. I was finding happiness. Real and true friends. A place I could be creative. I was back in school with an amazing GPA, inducted into an honor society, and on the President’s List for academics. My eyes were getting better.
Then it all stopped.
Now, I am living a life that I do not recognize from before. I spend 3 times a week at a dialysis center. About 4 hours a pop, stuck in chair as they drain my body of fluid and energy and life passes me by. I am restricted to 32 ounces of fluid a day. For someone who loved drinking water with lemon all the time, it is a difficult restriction. Especially during summer. This is an illness I will never recover from. And it is not like those medical television shows where they get a new kidney transplant after the last commercial break. It is possible I may never get one. You have to be eligible. I can be denied. Be forced to place a Band-Aid on a bullet hole to just make it another day. I also have to get my eyes injected with medicine every 8-10 weeks. This meat suit is a pin cushion right now.
So, I am figuring out how to live when I am just trying to survive every day. Place on top of that the fact my insurance premium tripled. It is a struggle to figure out how to pay it each month. Trying to get on Medicaid or Medicare is a lot more complicated than it sounds. Not only due to the fact I am 45. It is also Florida, and their systems are a mess. As I write this, I still have not paid towards it for this month. Just not enough to go around.
To be 45 and disabled. On disability. It was not on my bingo card for my life at this point. And I will talk more about being on disability in future ramblings. It is not the superior problem solver people think it is. For someone who cannot work a conventional job (for me, “working” is doing odds and ends to make a little extra money) and cannot make more than a certain amount, it is not enough to survive on. The system is not built for disabled and chronically ill people to thrive. It really is not built for them to survive either. Unfortunately, in this society where accessibility is not a priority to most, it does not surprise me.
I am still trying to live though. Doing these bits and bobs of side jobs when I am not too sick to do so. Getting back into school. Doing new things like directing a children’s musical. Carving out a life for yourself from the lump of clay that is disability and chronic illness is a difficult task. I am a tough bitch, though. I cannot seem to NOT survive.
The garden will be in bloom again. I just have to keep watering it.
