I shared in the Intro thread that six years ago I developed focal point seizure disorder as a result of battling leiomyosarcoma (uterine cancer). The diagnosis changed and rearranged my life in ways I couldn’t even imagine. Before I got sick I was a stay at home mom to a child who had been born at 25 weeks. Yes, that too was a moment that changed my life. I had to sell everything I had, stop working, close my accounts and showed they hit zero before I shut them down. All so my sick daughters (yes, identical twins. One didn’t survive) could receive the Medicaid and SSI benefits they needed to survive.
I didn’t have time to think about it or grieve. My surviving daughter needed 100% of my attention and energy if she was gonna survive. Today, I’m proud she’s a driving, working, rising senior in high school being scouted by University of Maryland Eastern Shore’s Sequential Arts Program. She made it. It took all my energy to get her there. I paid the price for that in 2019 when I suddenly fell ill. My abdomen swole to a ridiculous size quickly and my weight suddenly rocketed to 216 pounds.
it wasn’t just weight gain. I was in a lot of pain just to breathe. I was constantly dizzy and had the vertigo so bad I couldn’t actually lay down. I woke up one morning and my right hand closed into a tight fist that was flopped over to the left. Now I’m without my dominant hand. I’ll tell you what the view of the medical community was. Fat, Black female with neurological issues should stop drinking sugary drinks and eating bad foods. You’re a diabetic. Just lose weight. That’s what they literally said until the day I finally collapsed.
I was taken to the ER and an ultrasound was finally done on my abdomen. The scans didn’t look like human anatomy. 50 pounds of cancerous fibroids built up in my uterus faster than a pregnancy. My actual abdominal organs had all been shoved into my rib cavity under my left lung. Each breath I took just crushed them against my invaded uterus. I was finally diagnosed with “malignancy of the soft tissue (leiomyosarcoma).”
Unfortunately cancer causes bone and nerve degradation and I was no exception. Scans revealed I was actually about a millimeter away from completely severing my spinal cord. I was rushed into emergency surgery. When I awakened, my right hand finally opened, but it would never be the same. Coming that close to being a quadriplegic was have consequences. The seizures came fast. I couldn’t stand independently. My balance was gone. It took two years of working hard for me to regain what abilities I have today.
Now, I’m such a fall risk that APS won’t allow me to live independently. I must have 24 hour supervision, but I can do a lot of things on my own. My right hand is mangled, but I still crochet and cook. I did lose the ability to braid, but my daughter wears dreadlocks now. I walk with a rollated walker with seat, but if I don’t have far to go and the way is smooth I can honestly walk unassisted. My weight is back down to a healthy 155. I had to turn in my driver’s license. I’ll admit that it hurt my pride, but God forbid I have a seizure on the road and cause a serious accident. That cut me off socially because most of my friends live in more rural communities. Disability I’ve found just means I’ve got to find other ways to do things. My battle continues as long as I have breath.