The word “disability” is thrown around so much today when a person is seen as being unable to function properly. If you are filing for Social Security Benefits, Disability means that you can’t work a normal 8 hour shift and you have to have to prove it with evidence that a lot of doctors are not willing to help you with. Disability in my home has several meanings. It means that one person’s entire body, inside and out aches when they go up a set of stairs and then is out of breath and exhausted for about 30 minutes afterwards. It also means what happened yesterday.
My partner has seizures. He’s not Epileptic. He had a cyst behind his eye that if it is operated on to be removed, may cause him permanent blindness or he could become brain dead. He chooses to have seizures. It is the lesser of two evils for him. Its not an easy life. He takes medication for this disability, but it does not prevent the seizures from happening. After a bad night of sleep and forgetting to take his 1 of his 2 daily doses of medication, I woke to a phone call from his boss. He had a seizure on his way to work and then another one after he was working. He was taken to the hospital. Thats how I woke up yesterday.
Having been with my partner for a few years now, I’m used to his seizures and what to do when they happen. Every time he seizes, I remember that someday it may kill him. It is a morbid thought, but it prepares me for the worst. It is never that bad. When this happens my partner becomes very quiet. When he does speak its Gibberish. Sometimes his body convulses uncontrollably, sometimes he just wants to be overly affectionate (which can be a problem if you are a female he does not know). He loses his memory for awhile and I have to ask him a series of questions to find out where he is at in coming out of the fogginess of a seizure. My normal questions are; What is MY name?, What is our son’s name?, and finally Who is the president? (the last question gets a variety of hysterical answers.) When he can answer these without hesitation with the correct answers, then I know his brain is fixing itself and he will be back to fully functional in about 10 minutes.
After that 10 minutes I ask him if he remembers having a seizure. He usually doesn’t and then I go into explaining in detail to him what happened. I do this every time for 2 reasons; 1. he has no memory of what happens during a seizure. 2. Before we were together he was never told what he did during seizures. It is a hard life loving someone whose brain randomly decides to unplug and leave his body to function on it’s own.
My partner has amazing luck though. When he has fallen during a seizure he has managed to only get small scrapes and bruises. I’ve seen him almost kill himself seizing in a bathroom and falling into a tub, barely missing the metal faucet with his head. He shows up with bruises and scrapes and doesn’t know how he got them. Before our son was born he was worried about being left alone with him in case of a seizure. When our son, Felix, was about 2 months old it happened. I’d gone to the kitchen to get a cup of coffee and a fresh bottle for the baby when I came back to the bedroom and my partner was in the middle of a seizure with Felix in his hand. I ran to his side, put the bottle and cup down and grabbed Felix. As soon as Felix was safely in my arms, my partner fell over onto the bed and began convulsing. SOMETHING in his brain told him to stay still until the baby was safe. It was the first time Felix saw his father have a seizure. It won’t be the last.
Now, yes my partner has something wrong with him that disables him from time to time. You wouldn’t know it to look at him. He looks perfectly healthy. He works in a restaurant washing dishes. He also has a college degree and has worked just about every job you can have in a kitchen. So why is this intelligent, educated, clever man a dishwasher? Because no one will give a guy with seizures a job cooking with knives. Why is he not on Social Security Disability? Because no doctor has ever been around when he has seized in public and rolled under a delivery truck.