Tomorrow will be the anniversary of Linda’s brain surgery at Vanderbilt Hospital.
Before the surgery a good day for Linda was 10-15 grand mal seizures and there was a lot of not very good days. Life, it seemed was getting ready to have seizures, having seizures or getting over having seizures. The ceiling between enough meds and too many was razor thin and even those rare days of no seizures were normally defined by medication side effects that rarely took a day off. At times it seemed life more in name than in fact.
I still remember the day that changed everything. I got a call at work from Linda telling me she was hurt and asking me to come home. When I got home I found her on the bed covered up with blankets. When I pulled the blankets back she was coated in blood. She had a seizure at the top of a flight of stairs and fell all the way down. She hit her face on the banister and literally broke her face. For a while she looked like I had beat her half to death with a bat.
The neurologist said no medication was going to help. The only option he said was brain surgery. The option was to risk dying from seizures that just wouldn’t stop or to risk brain damage and be unable to take care of herself.
They removed her hippocampus and amygdala and told her the recovery should be uneventful and that the seizures would stop. They lied.
She had headaches medication wouldn’t touch. For almost 18 months we were in the Vanderbilt E. R. almost every night. Linda found out quickly she had a host of cognitive issues and problems that she had never had before. One doctor finally told her she had suffered a traumatic brain injury and that life would be different….. very different.
The seizures came back with a vengeance after a couple of years. 4 years after the surgery she was back in Vanderbilt Hospital with uncontrollable seizures. One medicine started to work and slowly she started to build a life that was more than seizures.
It looked like former Governor Phil Bredesen was going to take away her insurance in his “reform” of Tenn Care. We became involved in a big way in health care reform. Linda kept her insurance…. Thousands didn’t. Some died…. Including some we knew.
They had a long sit in in Governor Bredesen’s office. It never had a chance to change anything. I asked one friend who was involved why. “Someone needed to say we are people too and this is wrong.”
A couple of years ago we found out that if Linda stayed with me, because Tennessee did not expand Medicaid, she would lose her Tenn Care and possibly die. The story has been told multiple times on this blog and I will not tell it again right now but am sure you can find the details if you look.
On December 26 2013 after 34 years of marriage we separated. And since then we have been part of the fight to Insure Tennessee.
We have learned about loss and grief. We have learned about loneliness. We know misery and pain. We live 25 miles apart and count our days on the basis of whether or not we can see each other or not.
We have learned about rage and a state that believes we cost too much or are part of a plot to infiltrate Obamacare into the state. We have learned from a state that tries to tell us not caring is a civic virtue and that a plan to help that would not cost anything costs too much.
Medical issues for Linda are worse…. a lot worse. Seizures are becoming every day and life for Linda alone is dangerous. Doctors say she needs a caregiver. The government says it can’t be me.
We don’t know what to do. Insure Tennessee is at best an uphill battle and I don’t know the battle can be won before things are irretrievably out of control for us. We will see.
If I have had an honor in my life that honor has been Linda Drain. She has remained kind and caring. She remains courageous in the face of terror. I remain forever blessed to have met her, to know her and to love her. I once told her I would love her forever and ever and 4 more days. I can’t imagine a fourth day.
It has been 15 years. It feels like yesterday. Please keep us in your prayers.