Sometimes you just get tired. You just get burned out on so many things being so hard and you don’t want to do it anymore. If you can’t get from the beginning of the day to the end without catastrophe life is overwhelming and ultimately your capacity to cope is affected. Someone is a support group said it well, “Sometimes I just want to know where to stand in line to give up…”
Its not just that you struggle to solve problems. You struggle to stop struggle. You wonder why it seems that things are so much harder for you than what they seem for others.
All of us have known the deep distress of life. Most of us have known a time when life seemed like little else.
We are there now.
Linda’s seizures have went wild and we still wait for any sign they are slowing down. She has had more grand mal seizures in the last month than in the last year or maybe even two years. There have been a lot of bad falls and some bad bruises and lots of pain. She has narrowly missed serious injury several times. Because of our situation she is often alone and too often there is simply no one there to catch her.
Partial complex seizures… I don’t even know how you begin to count them. Linda says about a hundred a day and but how do you count something that moves so surely into the next one. It has just been a storm, a storm that had made everything hard and difficult.
There are no easy things for her right now. Few things happen automatically. Everything must be willed, decided and done. Life is more than living and seems something more like a chronic demand for management. There are no small things. Everything is big. When urgency is constant and things like seizures make it harder and harder to marshall the energy and concentration to cope you eventually get scared.
Everyone’s capacity for self management is limited. All of us can only do what we can do. Sometimes events reduce capacity. When demand exceeds capacity and demand just seems to stay there and never go away (or get worse) there are not many options. Some of us distract ourselves. Some of us just try to go numb. Sometimes we feel like we are drowning and panic. Linda and I have spent a lot of time talking today and both of us can identify the fear of drowning that life has left us with. And both of us know how close to panic we live.
Sometimes it is simply the best you can do. And you hope that you or the people you know or the people you care about can help you find some degree of safety. Survive. Life is more than what you cope with. Sometimes it is surviving what you can’t cope with. Above anything else survive.
Linda and I are both honest people, perhaps at times distressingly so. We are working on survival more than anything else at least right now. We are often angry, often passionate, often desperate and too often scared.
It has been a better day. Yesterday was 63 hours long or so it seemed. Thanks to all of you who stood in support.
A better day. Surviving.
Thank you again.