Matthew’s ex-doctor once sat us down & told us:
“I don’t think you realize that Matthew has a debilitating, life-long, chronic illness that he will never recover from. There is every reason to expect he will become increasingly disabled. There is nothing you can do to change that. There is no cure.”
He thought we were in denial.
We were very, very deep in denial.
But we thought of it as being optimistic~.
We still thought we could find a pill that would fix him.
And that when he had a good day, it meant he was getting better.
But the doctor was also totally wrong.
Because there were things we could do.
The Stockdale Paradox
Jim Collins describes the Stockdale Paradox in his book Good to Great.
It was the strategy used by Jim Stockdale when he was a prisoner of war in Vietnam from 1965-1973.
Stockdale survived, psychologically & literally, because of two things:
- He never lost faith that he would make it; and
- He was simultaneously fully aware of the precarious nature of his situation.
As Stockdale said years later, “You must never confuse faith that you will prevail in the end–which you can never afford to lose–with the discipline to confront the most brutal facts of your current reality, whatever they might be.”
According to Stockdale, it was the optimists that didn’t make it home.
It turns out that the two principles of the Stockdale Paradox (as Collins dubbed it): faith & disciplined awareness of the facts, are exactly what have been required to overcome a serious chronic illness, too.
1. Confront the Facts
Matthew’s doctor was right: we were in denial.
In Stockdale’s words, we needed to “confront the most brutal facts of our current reality”.
We were not going to find a pill that would make Matthew’s illness go away. We needed to accept that he would suffer enormously. We all would.
And the future we had envisioned for our family was never going to happen.
We confronted and accepted those facts as Matthew’s health declined. Until finally he was in bed 18-20 hours a day & hardly able to function at all.
2. Have Faith
The doctor was also wrong: there were things we could do.
Despite accepting the facts, we made a commitment from the beginning that we would never stop trying to reverse his illness.
And we never did.
Most of the things we tried didn’t work.
Some things made him worse.
Occasionally, we found something that helped. So we kept doing that.
While continuing to try other things. Most of which didn’t work. Or made him worse.
Repeat. For years.
Having unwavering faith for years, when there is little to reinforce it, is challenging. But sometimes faith is all you have, and that is so much better than nothing.
3. Keep Confronting the Facts
But, because we had faith that we could reverse his illness, we needed to begin to find and confront other facts (no matter how outlandish they seemed or how inconvenient they were) that were going to help him to manage his autoimmune condition.
Some of those facts were not easy to integrate:
- That he needed to give up virtually all of the foods he loved (and relied on for comfort).
- That he had to take stress management very seriously.
- That his medications were causing significant harm and had to be reduced & eliminated.
- Coffee. Had to go.
- That he had an electromagnetic sensitivity. Even though most doctors don’t believe such a thing exists. And that to improve, he had to move out of the city. Necessitating two residences (because I had a job & teenagers in town), a lot of time apart, and a lot of debt.
- Caffeine. Gone altogether.
Faith & Discipline
So, through attending to facts (big & small) and making the necessary adjustments based on n=1 data, ‘faith & disciplined awareness’ gradually became ‘faith & discipline’.
Faith and discipline.
Sounds like the tenets of a spiritual path.
Unexpectedly, it has been~.