A Holiday Message for ME/CFS Sufferers and Caregivers

December 24, 2018 by Llewellyn King

Image by Ron Smith

There are two holiday seasons. There is the one of joy, the one I’m lucky to celebrate. And there is the one those who suffer all year endure. It is also the one their caregivers struggle through.

At the end of the year, no matter their religion, the lonely find themselves lonelier, the confined more boxed in, and the broken more irreparable. The holidays can shine with love and they also can hurt.

Those of us who don’t have Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome, can only lend our hearts to those who do. We can seek to comfort and tell them that we know what they’re going through, but we don’t know. We can look, but we can’t know the terrible incarceration mandated by the disease: the life sentence.

A word about caregivers: The families, lovers and friends who know that these dear people, so loved, exist in a cruelly unequal world, isolated by pain and immobility. They are the people who must draw from the well of compassion over and over: today, tomorrow, next week, next month and next year, on and on. We can all be compassionate for a while, but to care for another permanently is noble, saintly and hard, hard work.

There is a glimmer (Is that too strong a word?) on the horizon as the pace of research into ME has picked up in the last several years and as has funding, much of it raised privately, has increased, though the effort is still a bit incoherent.

While there is research, there is hope. Maybe a new discovery will transmute endless misery into glowing joy. Maybe it’ll be in the biology of the disease, maybe in a compound that will hold it at bay, and maybe in a cocktail of compounds.

One of the priceless bounties of this time of year is hope. It is almost the only salve for the pain.

When I was 19 years old in Rhodesia, which is now Zimbabwe, I was working on a weekly newspaper. One night, just before Christmas, one of the African pressmen caught his hand in the press and it was crushed, mangled, three fingers gone. I had to drive him to the hospital and I grabbed the linotype operator’s Morris Minor. After having persuaded the other African workers that they couldn’t all get into a small car, five of them and the victim squeezed in and I began driving through deserted streets the few miles to the hospital.

For the life of me, I didn’t know why the four workers were insistent on weighting down the car. Then they began to sing, and I knew. The whole way they sang pain songs in Shona (they were of the Shona tribe). The songs – dirges, if you will – were an ancient analgesic to help the injured man endure the pain as he headed toward the Western world of morphine and surgery.

I hope that all who suffer this season will find the equivalent of their song to help with the pain, physical and emotional.

Yours warmly,

Llewellyn