Of all people, I thought, not Tom Hennessy. Tom was such a fighter. It was true he had the most painful case of ME/CFS I ever encountered. A couple of years ago, ironically on his way to see a doctor, he’d fallen asleep and slammed into the back of an 18-wheeler, severely injuring himself. I don’t how he’d kept going after that, but he’d been dealing with horrific pain for decades.
Finally it got to be too much, and he took his life.
One of his last emails to me started off, “Hey Cort, LONG time no speak! how are you doing, my brother by choice.”
“My brother by choice.” Who says stuff like that? It makes me want to cry.
I met Tom some years back at the HHV6 Symposium of Viruses in ME/CFS in Maryland. He was alternately alarming and charming; alarming some people as he buttonholed them on issues–sometimes a bit obsessively–but absolutely charming when he let those issues drop.
As I drove him back home, he starting popping Fentanyl, “the strongest pain drug possible” he told me, as I watched the sweat starting to trickle down his face as the pain hit. He’d been at the Symposium for most of the day–probably the longest time he’d been out in years.
When I think of Tom, though, I don’t think of his death, but of what he got robbed of in his life. I felt Tom had a touch of genius. He was a born leader. A former salesman, he could enroll you with a word. A former executive, he was an organizer with vision. A former PR man, he knew what the press wanted. Package all this together in someone who’s utterly fearless and you’ve got a formidable force.
He went right for the jugular–not just in his advocacy but in his thinking. He tried unsuccessfully to get the advocates for other CFS-like illnesses such as fibromyalgia and Gulf War Illness to work together. (They took International Day and left the rest of the community alone.) He was on Larry King Live several times and other media outlets many times.
As a former PR man he immediately recognized what a terrible cost the name would bring. His “train analogy” of ME/CFS (one of the tracks such as immune system, genes, nervous system) breaking, sending the train off the tracks, was simple and brilliant.
I explained to that audience back in April 1989, that IF they didn’t change the name that very day, and nip this problem in the bud, it would cause a mess for decades, and it has.
If Tom had been healthier, I think he would have created an Act-Up-like advocacy organization that would have become the perfect foil to the CFIDS Association. They needed him to rock the boat, and he needed them to be the ultimate dealmakers.
If he had been just thirty percent better I think he could have changed the history of chronic fatigue syndrome.
That Tom I’ve been describing was mostly gone, though, by the time I got to know him. He was simply too sick, too racked with pain, too injured to really use his talents any more. He was yet another example–a glaring one–of the tragic loss of talent and skill this disorder is too often associated with.
I think of Mary Dimmock’s son who was trekking across Asia by himself pre-CFS (who does that?) and is now mostly confined to his house. I think of Mike Munoz with his grand vision for ME/CFS who is just barely hanging on. I think of Bob Miller, as vigorous and bold a person as I’ve ever met, who spends much of his time in bed. It makes me want to cry.
Tom had so much, he was so gifted, and yet much of it disappeared. That loss is what I think of most when I think of Tom now.
Here are Tom’s own words describing what he was doing before he got sick:
Sales and advertising was my job for two decades. I did a national campaign for Subaru that inspired their “official car of the US ski team” that ran for 17 years. I did a program for Marriott Hotels that used a Gold Gambits card to use for discounted rooms and upgrades for frequent guests that is still running 25 years later. I was working on a program for BMW to upgrade their customer service when I got sick. I had seen how the Japanese work up close and personal while living in Japan from 1968 to 1972. My BMW friends laughed at me but the Japanese ate BMW’s and Mercedes lunch for the next 15 years.
I was a BMW sales manager in Marin County, California, just over the Golden Gate Bridge. I was making 6 figures and I had a new BMW company car and I was planning to start a computerized database for people to buy and sell cars, boats, motor home and motorcycles–sort of like a dating service for yuppies involving anything with a motor. I had possible investment bankers, several hundred clients–life was great!
But then ME/CFS hit in classic style; a depleted system almost completely folding under one last insult and almost everything changed. To think it all probably came down to eating some raw oysters. (He’d had a bad experience with oysters before.)
Except… I had constant sore throats, chronic mono, and I just didn’t feel well. I couldn’t get restful sleep. Then one day, a fellow salesman offered to pay off a loan to me, by taking me out to dinner. We drank a bunch of margaritas and ate ceviche and raw oysters. I went home to sleep it off – the next morning I couldn’t move. I felt like I had been given a Rodney King style beating the night before.
I have hardly gotten out of bed again for the past twenty years. The crippling, burning, searing nerve pain is still my worst symptom but with the exception of raccoon eyes (very black deep circles in my eye sockets) and totally atrophied muscles, I don’t look quite as sick as I claim to be.
Tom’s career as an advocate began way back in 1989 when he gave a speech before 600 people at the first International Meeting on ME/CFS in San Francisco. Tom was almost prescient in his grasp of how widespread this disorder was, stating that almost 1,000,000 people in the US had it, and that 5 to 6 million people were “one viral, bacterial, or physical insult away from complete and crushing disability.”
Tom was bold like no one else I’ve met. At one point he called ME/CFS patients the niggers of the medical world because of the second-class treatment they’d received. At one point they called the meeting’s security guards in when Tom got too confrontational.
Tom explained his first speech at the San Francisco meeting:
“I gave an “in your face” speech saying that we are SICK, often deathly ill and we are NOT fatigued!” I said, “if you do NOTHING else today, then lock the doors, get together and knock heads and come up with an ACCURATE definition and CHANGE THE GOD DAMN NAME!” This got a HUGE response, and all the major media ended up interviewing myself and Melinda Paras, a gay, Latino woman who gave an equally moving and riproaring speech.”
Tom knew how to push buttons and generate buzz better than anyone I’ve ever met. He was a natural–we’ve never seen his like since. Of one of his Larry King appearances he said:
That show got pretty heated when I claimed that “many of our brave veterans are returning with very similar symptoms as all these ‘alleged whiney white women’ who can NOT handle stress!” I went on to say, that “If these highly educated, mostly male, stunningly victorious soldiers who only fought for four days, could come down with this terrible illness, then maybe the NIH and the CDC will be forced to stop telling lies about it.”
I got TONS of mail from all over the world.
But then in 1994 he relapsed badly, and that was really it for our most gifted advocate ever. The website and the organization RESCIND survived but mostly in name only. He was in incredible pain, taking Fentanyl patches almost daily at times, and finally resorting to morphine. As always he described the pain in his own evocative way: “The doctors told me that I was taking MORE pain medicine than a dying cancer patient who’s tumors were crushing his very bones”.
Tom was one of the most aggressive advocates I’ve ever me but it wasn’t personal. At one point he told compared me and other advocates to “lobsters sitting in a pot of lukewarm water” that was slowly coming to a boil. It was framed in such an evocative way that you just had to smile. It meant nothing regarding our friendship.
Tom would show up from time to time with his long emails of unpunctuated, run-on sentences with capitalized phrases which were both difficult and oddly thrilling to read. The genius, the pain and the loss that was Tom Hennessey was embodied in each one of them.
I feel honored to have been Tom’s “brother by choice.”
- Tom’s Obituary at the Funeral Home – Leave a Comment
- From the Newswire – ME/CFS Patients Mourn Death of Advocate
- The Legacy of Thomas Hennessy Jr – Tribute to an Advocate
- In Memorium – Gabby
- Prohealth Tribute
- In Memorium – Mass CFIDS Association
Interviews and Blogs
- Cort Johnson’s Phoenix Rising 2008 interview (unnattributed) – Fierce Advocacy
- Tom On ME/ ME/CFS or Not
- To Suffering Add Anger
http://bocanewsnow.com/2013/09/19/chronic-fatigue-activist-dies-in-boca-raton/, A one-hour phone memorial to Tom will take place tomorrow (Sept 29th, 4 p.m. EDT, 3 p.m. CDT, 2 p.m. MDT, 1 p.m. PDT). The memorial is being hosted by P.A.N.D.O.R.A. Members of PANDORA supported Tom after his car accident a couple of years ago.
“We are inviting everyone to join us in a memorial honoring the father of International May 12 Awareness Day for NEIDs, Thomas Hennessy, Jr., a fearless and dedicated advocate for decades.
The call in number is 559-726-1300, access meeting code 915440.
Those outside the U.S. may dial in through their computer through the Internet using the Flashphone here: https://
Join the event and find out more about it here.
PANDORA Org will hold a global phone-in memorial service on September 29 at 4:00 p.m. EDT. Chapo-Kroger said details are available on the organization’s Facebook page:https://www.facebook.com/
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.