There was a rumor flying around the court house that Rich has only four months to live. Rich was rather circumspect about the rumor and even expressed some relief stating that he truly hoped that was the case. I punched him in the arm and told him to cut it out. We laughed.
It is interesting to be handed a diagnosis that your spouse has a fatal illness. At first we were pretty blown away. It gets easier as time goes on and the two of us even joke around about it… sometimes. When we do that in front of people, we occasionally get looks of horror. I often have people ask me how I can talk about it without falling apart.
Maybe I can talk about it because my family has always been very open, and very irreverent, about death. When I was three-years-old I asked my grandmother when she was going to “up and croak.” It became a family joke that people do not die, they up and croak. At times I will call my 85-year-old mother and tell her that I’m just doing “an up-and-croak check” to make sure she’s still kicking. She says she must be alive because she answered the phone. We laugh.
The diagnosis of Frontotemporal Degeneration (FTD) comes with a lifespan tag of two to 10 years from diagnosis. I find this number very confusing and disconcerting. Does this mean that if someone is diagnosed quickly then they die faster? Since we have been struggling with this horrific disease since at least 2008, but went through many experts before being given a diagnosis of FTD in 2013, does Rich have two to ten years from now? I think it comes down to “WHO THE HELL KNOWS.”
In all the research I have done since Rich was diagnosed with FTD (and believe me, I could write another doctoral dissertation), I could not find what exactly makes people with FTD die. The best I can piece together is that sometimes they “dwindle” away in assisted living facilities, or die of pneumonia or some other secondary infection. Their brains stop telling their bodies what to do and they eventually cannot keep on keeping on. Personally, I think that whole picture SUCKS.
Rich has bluntly stated, “I’m not riding this train to the end of the line. I will not dwindle away in some ‘facility’ (a word he says with dripping sarcasm) or be a raging idiot who does not even recognize my family.” For awhile, he was using the thought of suicide as a coping mechanism against the futility and hopelessness of this rancid disease.
Rich’s remarks about a “graceful exit” were killing me inside and creating a lot of stress within my entire being. On one hand I do support his decision to leave this life in a manner that he feels creates the dignity he deserves, but DAMN MISTER, YOU ARE TALKING ABOUT THE GUY I LOVE SO PLEASE DON’T SAY THAT!! In my business, the shrink business, we call this cognitive dissonance. This is the discomfort you feel when you hold two conflicting beliefs at the same time. In other words, it was ripping my guts out.
I finally challenged Rich to “try on a different coat.” I told him that he had been wearing the coat called, “I’m going to die how and when I want to,” and using it to feel some measure of control in a very uncontrollable situation. I asked him to try on the coat called, “I will ride this train to the end of the line and have faith that I will be taken care of in a perfect manner.” He agreed to try this out. It has helped relieve a lot of the stress.
Does Rich still have whatever options he chooses in this difficult and horrid diagnosis? Yes. For now, he does not need to decide these things. We will await a second opinion from Bruce Miller, MD, if he is accepted into the UCSF clinic. We will enjoy whatever moments we can glean from each other and our family. Will Rich die within four months? Probably not, but he would be relieved. I would be devastated.