An unusual and devastating disease took my brother and best friend

The telephone doesn’t ring anymore.

It’s been two months now since my big brother and absolute best friend died. The grief of coping with this loss is abating, perhaps. Still, there are many moments of intense sadness, such as when the phone calls don’t come.

Jim Higgins was only 74. He was fit and seemingly healthy. We ran the seven-mile Falmouth Road Race together last August. He played golf regularly and rode his bike often. We walked five or six miles together almost every day.

And we talked … and talked. The subjects were anything and everything, from family, to the political news of the day, to the latest trials and tribulations of the Boston teams.

But no more. In February, Jim was diagnosed with an unusual, devastating disease. A month later he was gone. It wasn’t cancer or heart disease, the leading causes of death for males 65-84, according to the Centers for Disease Control and Prevention. His death was not related to COVID-19.

Jim had Creutzfeldt-Jakob Disease, a rare and always fatal brain disorder. CJD affects just one to two persons per million each year, according to the CJD Foundation. There are only 400-500 new cases a year. And, because CJD is difficult to diagnose, these statistics may be on the low side.

So, he sort of “won” the lottery, in a perverse, twisted kind of way. In all the best ways he was surely, as Courtney Morgan, his daughter says, “one in a million.”

About CJD

CJD occurs when normal brain protein spontaneously changes into an abnormal form called “prion” and accumulates in brain cells. The symptoms include cognitive confusion, memory loss, walking and talking difficulties, sudden jerky movements and visual disturbances. Jim had them all.

The symptoms increased rapidly. He was losing his ability to speak, an unimaginable cruelty for someone who could talk the paint off a wall. He soon needed a walker, then a wheelchair. He spent his 42nd wedding anniversary, Valentine’s Day, at Massachusetts General Hospital undergoing lots of tests. The devastating diagnosis of CJD was confirmed in late February. He passed away on March 28.

Familial CJD can be inherited. Variant CJD is related to “mad cow disease,” eating diseased meat. Sporadic CJD develops suddenly without any known risk factors. Most cases of CJD are sporadic, according to Johns Hopkins Medicine. The family is awaiting results from an autopsy. But that’s all just medical gobbledygook to me. Jim’s horrible demise was crushing on every level.

Even now to think (and write) of him in the past tense is staggering. We saw each other nearly every day, beginning with morning coffee to, in our parlance, “break it down.” And then those aforementioned phone calls to rehash and plan tomorrow.

It was indeed a special relationship I’ll always cherish.

Jim’s influence was wide. He was a well-respected executive for 40-plus years at RogersGray Insurance and served as a volunteer senior vice-president of the Cape Cod Baseball League for decades. He made a profound impact.

He was passionate and loyal, and had many close friends, including a band of brothers from the UMass-Amherst Sigma Phi Epsilon (SigEp) fraternity that went back more than 50 years.

Going Forward

So, how am I doing without my best buddy? OK, I think. Living and learning, leaning on my wife and family, one day at a time. I’m sharing more. I enjoy talking about Jim. I’m trying to get out of my comfort zone by staying in touch with friends and reconnecting with old ones. I’m still exercising, walking, jogging a little and trying to stay active.

However, I’ve read and been told that grief isn’t linear. There is no start and stop, a defined path or a finish line. There is no right or wrong way. Sometimes I feel a sense of normalcy – whatever that is – returning and then emotional waves crash back upon me unexpectedly.

I’ll hear an old song by Bob Segar or Dylan that I know was one of his favorites; or when I’m walking, alone now without him; or when I pass a place where we shared a beer … and my eyes fill with loneliness.

And, of course, when the phone doesn’t ring after a big game.

So, this is all a work in progress and maybe always will be. I’m doing my best to find strength in knowing Jim lived his life well, with few regrets. I know I’m better for being an important part of it.

Maybe the pain of his loss will subside, but the emotional scar (I view as a badge of honor) will be forever. And that’s all right. I don’t want to forget him.