An earlier version of this said Linda had a lobotomy. She did not. My keyboard auto corrects. She had a lobectomy which is a brain surgery typically used to control seizures. The error was mine. I did a very poor job of proof reading. Please forgive me.
This is the most difficult post.
I really am not sure how to start. I am honestly not even sure I want to start.
I write in grief and sadness. I write in anger. I write in prayer. Most of all I write in hope.
For a long time life has been hard for Linda and I. I have talked about some of the challenges we have faced on this blog. Others I have talked about on Facebook. Some have never been talked about and remain between. me and her.
Life has gotten a lot harder for both of us in recent weeks and months.
We have tried to be honest about what we have talked about and we what we have not been ready to talk about we haven’t.
We are the most ordinary of people and our story is no more worthwhile or important than anyone else. It is certainly no more difficult than that faced by many.
Our hope has been to say trying matters. Our hope has been to say hard times, even when we have no answer, need not define us. Our hope has been to say life is frequently hard and there is nothing shameful in the things that make life hard. Our hope has been to say it is okay to ask for help. Our hope has been to say we matter no less at our worse than we do at our best.
Today was doctor day for Linda. There have been multiple problems for her in the last few weeks and today was a day to get closure . We hoped ….
One doctor talked about seizures and traumatic brain injury. Every day it seems is hard for Linda now. Seizures are much more frequent. Cognitively everything that should be automatic requires work. She has to think to think. Sometimes even that doesn’t work.
Attention, memory, language…..just general making sense are often problems. One doctor has said she has the first signs of dementia. There are still many good days but bad days are beginning to seem way too normal. The problems are beginning to impact daily living more and more.
He referred her to Emory in Atlanta. He thinks she needs more than she will get here in terms of help. We have started a go fund me page to make Emory realistic. Visit it at the top of this page. Help if you can. Please pass it on.
The other doctor talked about hearing. 50% is gone in both ears. He says it is progressive. Hearing aids will buy some time but that is all. I don’t think he has a time frame. He will know more next time she comes back.
He thinks a major part of the hearing loss was the vagus nerve stimulator implanted for seizure control many years ago. The incisions were close to some major hearing nerves and he thinks that may have been the villain.
The two surgeries – the vagal nerve stimulator and the lobectomy- seem without question major players in this tragedy. Beware of doctors who tell you they have it all figured out and there is nothing to worry about.
A major rule of doctoring. Doctors who fall in love with some preferred technique or treatment are not honest about the risks of that procedure to people they treat.
We don’t know where all this is going. At least for tonight in a strange way I am glad. I am filled to the busting.
There is a lot more to say. I am just too tired to say or even think more.
Thanks. You matter. The support of the people who read this blog has made a difference. You really matter.