This weekend Linda was hurt again by a grand mal seizures. She has a bruise the size of my hand on her face and forehead. She broke her right hand. She hurts everywhere. This was the third episode of significant injury due to seizures in the last 6 months. The one before this left her with a concussion.
She was on the phone with me when it happened. She told me a grand mal seizure was coming and she had to get some lorazapam to stop it. The medicine was in another room. The phone went dead. She ran for her medication. She didn’t make it. She ended up smashing herself into a coffee table. She was alone. There was no one to ask for help.
December 26 will be the beginning of her 5th year alone. 5 years ago social security told us that her status as disabled was in danger if we lived together because I had taken early retirement (You have probably read the story, I won’t repeat here.) In Tennessee in order to qualify for medicaid you have to be labeled disabled. She would not survive without access to medical help.
Her medical condition continues to worsen. Isolation has made every thing worse and dangerous. Linda has had epilepsy since birth and 20 years ago she had brain surgery because they were out of control. The surgery left her with a host of disabilities she didn’t have before the surgery. The seizures were better for a while. No longer.
She has grand mal seizures on average every couple of days now, sometimes worse. Some days petition mal seizure activity is basically continous. Fluorescent lights trigger seizures more and more. Going even into stores can and often is a risk. Somehow she copes. Sometimes I wonder how.
We went to her neurologist today. He says medicine will never control her seizures. She is in the 2% never controlled he says. He told her that brain surgery was again the best option. It would not be the surgery she had before but some newer options. He is referring her to Vanderbilt Hospital.
On the way out of the doctors office I called an attorney to ask whether or not we had a legal legal to stand on. In light of the current medical reality how could it be not legal for us to live together? How??? I didn’t hear much that gave me reason for optimism.
Linda’s human rights have been assaulted. Because her disability made it impossible for her to work throughout her life she has been put in a situation that says the only legal option she has is to not live in a safe situation and at the mercy of seizures that are destroying the quality of her life. Disability is hard enough and millions of people cope with some form of it. The government has the obligation and we have the right to expect that they not make it a potentially life threatening situation. Governmental regulations should not destroy access to a fair chance at a quality life.
We are fighting. Trying hard to come up with ways to make it safer. We have a lot more questions than answers. Some of the answers I fear will require money we just don’t have.
It is a scary night tonight. We are apart. I have to go to work in the morning. I startle now every time the phone rings.
Support means a lot and many people have been very supportive. Thank you for that. As we look further at needs and options I am sure we will have a lot to share.