Dear John McCain;
Once again, you feel the weight of a shocking diagnosis as you, once again, face your mortality and, once again, enter into patient-hood, and all that comes with it. It is different for everyone, and every time. Responding to a disease where the body has mistakenly turned against itself can make you feel betrayed by what you took for granted, namely, that your body would always work in your best interest. You feel ambushed. You are changed. Who will you decide to be now?
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| John McCain after surgery for glioblastoma |
You are saddled with a new project; your old self is left behind, as “becoming” is once again your mission. It has taken a long time to be yourself, and suddenly it is not enough, there’s more to be done.
While you might think the goal is to quietly slide back into the land of the well there are frightful decisions to be made. Nothing happens without emotion, and the emotions here are especially potent. We are members of the only species that can imagine the future. While imagining your response to, and hoped-for escape from, this disease many decisions have to be made. These decisions require constant monitoring of information with clear perception. This information is fluid and it needs an open mind that can adapt quickly when things change.
Sometimes the choice of what to do next is difficult because what we know is simply not enough. But we have to decide and when we finally do we can move forward and we usually find that we cope better.
As we try to imagine the future it may be more helpful to actually see the future. How? By hearing from people who have already been there. As you are thinking about treatment for your glioblastoma you may look to those who have made decisions already and use them as surrogates. For example, this procedure worked, that did not, this medicine was easy to tolerate, that was not. Such information is exceedingly useful to avoid going down the wrong path.
But, and this is key, since you are a member of the U.S. Senate looking yet again to repeal the Affordable Care Act, at the same time as you are deciding for yourself you are also making decisions for all of us. Fateful decisions about the shape of healthcare for all Americans.
You see, the question before you, that is, how to ensure that all have access to timely and affordable medical care, has been settled by nearly every other industrialized country on Earth, and the decision has been to provide universal coverage from cradle to grave.
There was repeated resistance to the Social Security Act that was finally passed by Congress in 1935 and the bills for Medicare and Medicaid that were eventually signed into law in 1965. If we could have polled the people of the future then about these programs we would have seen that they prevented much anxiety and human suffering.
The diagnosis of an aggressive glioblastoma used to mean a certain and relatively quick death but there has been progress recently and there are now more than 80 experimental therapies being studied. These are costly, but you are fortunate to have good insurance and connections and I know they will be offered to you and that you will be able to afford them. The term “clinical equipoise” means that there is uncertainty in the expert medical community about whether a treatment will be beneficial, as is unfortunately so with the newest targeted treatments for your brain tumor. The term “equipoise” by itself means living in balance, as one must learn to do when facing the uncertainty of serious illness.
Perhaps I’m a dreamer, but maybe in this state of mindful balance you will see clearly into the future and be able to tell your colleagues what it was like when everybody had what they needed.
Sincerely,
Anita Cherry
Published in the "York Daily Record" 10/08/17
(John McCain's treatment was stopped and he died peacefully on 8/25/18.)
Published in the "York Daily Record" 10/08/17
(John McCain's treatment was stopped and he died peacefully on 8/25/18.)
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