This is a copy of a letter I am sending to Donald Trump tonight. Please share widely. Share with your legislators on all levels. It speaks to the lives of many people.
Again please share widely.
Dear President Trump :
I honestly never thought I would ever see the day that I would ask you for help, but that day is here.
My wife, Linda and I, have been married 39 years. She has been disabled since birth. She is, in very important ways, a miracle, but she is in a miracle that must be redone everyday.
If the latest plan to change medicaid that I have read about becomes a real thing she will die. She will not have a chance and will die under the most miserable and agonizing circumstances imaginable.
I am talking about the decision to allow states to apply lifetime benefits to medicaid recipients.
I don’t understand the rationale of such a plan. The net effect can only be closing care with long term and deadly diseases like cancer, heart disease, diabetes or God knows what. All these people have something that isn’t going away. If they are to live, if they are to survive they need care and not care based on a time table. These are, for the most part, ordinary people dealt a fate that for the grace of God could be mine or yours. They have families. They have kids. In a real sense many are heroes. Without insurance they will not make it. In the short run they can try to get care at emergency rooms or clinics. That will cure nothing. The only thing that will happen is that hospitals already choking on uncompensated care will soon be no longer able to breathe and the care available to everyone will suffer.
The other category of people that will suffer are the disabled. They require medical care to have any chance of an independent, successful life. They require care to have a fair chance and will need it their entire life. Without it many will end up in institutions or some other situation you would fight to prevent a member of your family suffering in.
Linda is disabled.
I would like to introduce you to her.
Linda has had severe, life altering epilepsy since birth.
If you have epilepsy there is something called status epilepticus which basically means having seizure after seizure until finally you die. If it happens and you get to the ER in time doctors can sometimes stop the seizures and save your life. I have known two people who died. In the time I have known her Linda has been in “status” 3 different times. So far we have won the race each time.
A few years ago a good day for Linda was 10-15 grand mal seizures. After a particularly bad fall down a flight of stairs that left her with a broken face (literally) doctors told her that her choice was brain surgery or likely death.
She had the surgery. For a little while seizures were gone but when they came back they came back with a vengeance. But she also walked away from the surgery with a host of disabilities that she didn’t have before. She had a new diagnosis. Traumatic brain injury.
Despite all that she lives a quality life. She is a caring person of deep integrity who enriches the lives of those around her. She lives with purpose and commitment. She is kind. She doesn’t try to be kind or try to impress others with her kindness. It is simply who she is.
Seizures are still part of life. She has disabilities that she will struggle with forever. But she is a miracle of medical care. Seizures and disabilities do not solely define her life. She can and does do things that anyone else does. I am lucky. Tennessee is lucky. This country is lucky that people like her are part of our daily lives.
Our lives have taken a bizarre turn. 5 years ago we found out that we could no longer live together and her keep the insurance that keeps her alive. Social security regulations made it impossible and since then we have found out that tens of thousands of older Americans are in the same boat.
We separated to keep her alive.
She is going through a very rough period and I am afraid. She is alone and we don’t know what to do.
Now I read of a plan to let the state of Tennessee decide she has been on medicaid long enough and take the care she depends on away from her.
Mr. President please don’t kill my wife. Do not place the lives of millions of Americans whose only crime is to be sick or disabled in jeopardy.
America can afford to care. We can.
I would like to think you would like my wife. I love her and want to see her live.
Please do not pursue this harmful policy. Please.