"It would be nice to talk to the Bud we knew growing up, not the Richard guy whose wife and disease have taken the best parts of him."
So said my younger stepdaughter from my second marriage within the course of an e-mail exchange-- this among other gems of a like nature.
By wife she means my third wife, the woman I am married to now. By disease she means MS.
I hardly know what to make of this--only that it has rankled ever since. What is meant in saying that my disease has taken the best parts of me? And what would the solution be? To suddenly, by choice, simply not have the disease anymore?
But of course, to ruminate along these lines is to add complexity to something that is really quite simple. We have all been here before. What we hope to convey by way of explanation, by way of education, is seen as mere excuse. The struggle we maintain day by day to function despite the comprising process we have to live with is seen by others as a cowardly sort of convenience, a sham, a ruse, essentially a lie. It is a lie employed to gain leverage by way of sympathy so that we do not have to face the real truth.
We have learned this nearly from the start--we have learned it as one of the very first things--People do not want to hear about it. It seems to make an unfair demand upon their stores of compassion. It is something that would require a sort carefulness and charity beyond the scope of their own convenience.
Again and again I have learned the hard way to just not mention MS at all. It tries the patience of healthy people beyond all endurance. Are the effects that this disease has had upon our abilities, upon our emotions, upon our energy, upon our minds, upon our capacity to bear stress mere inventions? No, of course not. Do these people have any idea how maddening it is for them to suggest that we choose to live this way, that we enjoy these limitations? No, of course they don't. Nor do they want to.
We are painfully aware of our weaknesses, of our deficits, and so we attempt to explain in the interest of what is factual in order that continuing relationship may take account of the situation as it is and proceed accordingly.
But my friends, it is a waste of breath, ending only in an extravagant expenditure of energy that is in short supply to begin with.
Perhaps it is best after all to simply agree--Yes, you're right, my disease and my wife have taken the best parts of me. So sad.
And then change the subject.