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.
Tom Hennessy in New York City with his girlfriend.
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 Death
- 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/
Tom Hennessy, Jr.’s Phone-in Memorial
P.A.N.D.O.R.A., Inc. – Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. in Wyoming, Michigan
Thank you for sharing this story it breaks my heart. How this disease degrades us is heart breaking. Men are providers its in their genes….caveman style. For a man to be unable to provide because their health has failed them is degrading. I think its harder for men with CFS/ME to accept the end of their working careers and life activities. Men are prideful creatures. Don’t get me wrong women are prideful also but the genetics in a man to hunt and gather is been ingrained in their DNA for thousands of years.
I know as a woman even though I can’t work anymore, no matter how heavy my body feels or how much brain fog I have to do one thing a day makes me feel useful. Like cook dinner, clean, laundry. It wipes me out to do these things but it makes me feel human and useful.
God bless Tom Hennessy, I know he is in a place that is pain free. It is so sad he couldn’t be here pain free. Life is so short. Prayers to his family.
Readyforlife
Thanks – Tom’s life was a heart breaker on so many levels. To have endured such pain for so long, for him to have lost so much and for us too. it’s just a tragedy really. This is not to say that Tom didn’t endure but the loss this disorder can cause was just encapsulated for me with Tom..
First of all..I dipctate and can’t really fix.,so.bare with me
I knew Tom well. I was the founder of the Francisco CFIDS Foundation. Shortly after Mark Iversen started the CFIDS n association. We ran a hotline with people answering for four years.
We were given money from the health department because they believed this was the kind of chronic HIV. We got Jay Levy and Phil Lee involved… Jay always thought this was an immune system disease. Then the CDC came out and and called us the “worried well”
I worked with Tom for many years , the really difficult years….not that these are much better..and the thing about Tom is he would just let things wide-open. Everything is on a scale and Tom was way out there in a really good way. He pushed relentlessly sacrificing his own health. I was on the surgeon generals committee for several years and Tom was the one who often kicked ass..saying thing others never would say, it is leaders like Tom and so many others,that worked so hard and were so sick.
Follow Tom’s leadership. Stay alive. You are strong and neuro science is moving so fast..
Thanks so much Jan.
Few people bring to my mind the tragedy that ME/CFS is more than Tom. I didn’t meet Tom until he was very ill but I don’t think we’ve had an advocate like him since then – somebody who was so fierce, so articulate, so brave and so able to just grab the moment and use it for all its worth.
Man, I wish he had stayed at least somewhat well longer!
Thank you for this moving piece honoring your friend. How blessed he was to have a friend like you who really saw and appreciated him. So many of us crave that and do not have someone that does that. What a powerful statement toward who he was and what he did. Thank you for sharing his story.
Thanks Sue…
Cort, a most moving tribute. I’m so sorry you lost your friend/brother and we all lost an advocate. It’s a crying shame.
This is so sad. Thanks for letting us know Cort and my condolences to all who knew Tom.
He stands for so many heroes who have this disease. I’m glad he was able to raise his voice for all of us, even if only for a while.
Fly high my friend
Yes he does – that’s exactly what Tom does for me- he stands for so many who have this disease – What an incredible story. What an incredible fall!
It’s mind boggling that stories like Tom’s happen year after year, and while they do, the federal government just turns its head and continues on its petty pace…
Condolences Cort. Perhaps the 30 MD’s that recently signed the letter against the NIH backstabbing could get more confrontational and more backing and send letters to more people/representatives in Tom’s Memory.
Thanks Gregory,
Tom was a puncher but he was smart and a great communicator as well. That combination doesn’t come along very often. I think we just push along as best we can until overwhelm the thinking the relegates this disorder to an afterthought in the medical world.
Cort- I did not know Tom-however I can see now what a HERO he was.
How sad that someone that had so much more to offer was so ill he could only do so much and still manage his life.
MY LIFE WAS BRIEF AMONG YOU-
I NOW GO WITH THE WIND-
BE NOT DOWN WITH SADNESS-
I’M BACK WHERE I BEGAN-
REST IN PEACE TOM WITH NO MORE PAIN.
CAROLE
Cort
I have never met Tom but believe your tribute to him opened my eyes to the attention that can be drawn to ME/CFS if we are willing to speak out in unison instead of bickering between organizations and personalities. Our enemies are not each other but the medical system, big pharma and a government that spent more on 1 week for an Obama’s trip to Africa then all the federal funding in history on this devastating illness.
Rod
Hallelujah to that Rod. I think we should keep this in mind as we work on the present advocacy. Let’s find ways we can agree, unite and carry out action that’s effective and makes a difference. It’s the culture of denial at the NIH and CDC that’s our real enemy- that is our real target…..Thanks for the reminder.
Cort, tell us what to do, remembering most of us have no money and no energy for travel…..Write letters???? How do we change the culture of denial?????
I’ve been sick for ten years now–Tom, for how long???? There’s only so much a human being can take—we have to know someone is working for us, that there is a hope that we will be better someday.
Good Intellectual Post. You are so right.
Carole
I am so sad. Fortunately I had the privledge of being friends with T ( my nickname) his for me was B. We were introduced by Marly Silverman after hospital his accident .he was in a nursing home very close to where I live. We spent countless hours discussing our illnesses, sharing music, I would wait for Tom at hospital after he had hand surgery pick up his favorite spicy dish @ 5 spice Asian bistro. We had arguments we made up. Living in same town is painful. He was brilliant funny stubborn yet lovable .I’m overwhelmed b. His death
What a great way to describe Tom, Blair – brilliant, funny, stubborn and yet lovable :). That just so fits for me.
I know Pandora, Marly and lots of people down there helped Tom a lot.
Blair, I am so glad you were there for Tom. I am overwhelmed with sadness that Tom isn’t here to see the many who loved him and all he stood for.
This tribute is so beautifully written and honoring to Tom’s memory Cort. I extend my prayers and condolences to his family, to you and his other friends, and to the thousands of patients whose lives he touched in significant ways even without actually meeting them. Everything about this absolutely breaks my heart. May his words “NO MAS, NO MAS, NO MAS” be heard echoing around the world, as they rise to a crescendo that is impossible to ignore any longer.
Thank. It is such a heart-breaker! It breaks my heart, it really does…
Cort – Tom’s death made me remember a friend with this horrible disease that took her life and was only 37 years ago. She was a patient of Dr. Cheney’s and was doing well on shots she was getting here in Atlanta. Her husband lost his insurance and she started to relapse as they could no longer afford the shots. No one knew this as I am sure they would have helped. She took her life on Thanksgiving and this brings all of this back. What a loss . The shots were $30.00 a week. I don’t remember the medication but they are still using it it for the immune system now under a
different name.
Carole.
Same year I was diagnosed 1989… That’s along time with no help, or to be ignored!
It’s sad and it needs to change!
Cort
This is a moving tribute. Just as you feel honored to have been his brother by choice, so is his memory lucky to receive such an homage from you.
And I salute that you had the courage to say that he… did it. Let it not be a taboo. Even the hardest fighting of advocates can at one point just pull the plug. Too much suffering.
May he be remembered. You have just greatly contributed to that, and moreover, you have made many discover all he was and did.
Thanks Christian,
I really appreciate that. The deeper I delve into Tom’s death the more it breaks me up. I think he’s an emblem of what so many people go through and since I knew him personally – not as well as many but he really stuck with me – it’s just that much more evocative. The stories we hear are just incredible.
Thank you for this powerful tribute. I send my condolences to you, Cort, and all who feel his loss.
Thanks, Carol.
The man was before my time.I sense the loss for people part of this community before me.In my mind his name has a great ring to it and will think of this struggle as hennessys’. We will change the bloody name Tom. Keep this man’s inspiration as legacy alive for us Cort.
Thank you Cort for being a little vulnerable in sharing him with us, wish I had known him. Wish I could have seen the verbal punch he gave, yet holding the audience. Thats a skill of a leader. Sorry for your loss.
I have to add!
I read a copy of a speech he made on PR I think.
Reading it,
his articulation felt like a warm balm of pain relief bathing my frustration and lack of acknowledgement at the powers that be.
It felt wonderful reading it.
I too didn’t know the man, but just by the tribute that you gave him Cort and the expressions of others —I can tell he was a very special man. It sounds like he learned a lot in his life, experienced a lot, and despite his illness taught others a lot. You asked what kind of a person says certain things – that now you look back on and it touches you and pulls at your heart strings —the kind of person that says those things are the kind that have had near death experiences and realize how fleeting and temporary life really is. The kind of person who knows that today may be the day that you take your last breath. The kind of person that realizes that we don’t take any day or any one forgranted. He must have loved you, Cort, he considered you a chosen brother. (OH, now I’m making myself cry.)
I’ve tried to be that sort of person myself. I ALWAYS try to say what needs to be said that day, in that moment. Cause tomorrow – either because of my own misfortune or the person whom I love and care for —I might not can say it tomorrow. This is a lesson to not take any of our days forgranted. Don’t let anyone who impacts our lives go to sleep without our telling them how much they mean to us, how much they impact our lives, and how much we appreciate them. And for goodness sake, don’t let the day end or the sun set with anger in our hearts.
You said some lovely things about this dear friend of yours. And I’m sure to the people whom he touched he’s said and felt some lovely things for all of you. He is no longer in his pain. He sleeps in peace. His sorrow and pain is passed.
Thinking of you all in your time of grief. And feeling your emotions.
Issie
Thanks Issie,
Tom seemed to me to be a real ‘grab the world by the throat kind of guy’ – a live life int the moment kind of guy – until he couldn’t really grab it all. It’s such a shame to see that kind of guy, in particular, so laid low.
I wept, and I wept some more yesterday as I read here that Tom Hennessy had passed away. I am weeping now for him, his family, friends. His story is the story of so many…..so much loss, so much suffering, so much frustration, so many battles. I did not know him personally. I knew him only through his own posts, and posts about him in print and on the net over the last 20 years. He was and will remain a champion, OUR champion. The world is lesser for heaven’s gain.
how did he die?
Tom took his life.
Oy I’m so sorry to hear that. It sounded like he lived in constant physical pain. That is beyond tough to endure forever.
~~~~~<~~@
I just had to write in Cort and add my condolensces to this ever growing tower of sadness that is rising up over and around the internet and across the country at the news of Toms passing. This is indeed a very very difficult day. More than a day, this is a moment, a moment of universal anguish and heartache which groans out from our entire community and which sadly it still seems, the world will barely hear. Toms death has cast a cold shudder through all of us.
What is bothering me so much about Toms death, and I profess that I did not know Tom, is that he represents for me yet ‘another’ one of us who had to die under such horrific and tragic circumstances without the sympathy of the general public. From all the reading that Ive done about Tom over these past couple of weeks, including finding a breathtakingly courageous and brilliant speech on audio he gave at CFS/ME conference two years ago, it is clear that this was a very special guy. A person who in the end is ‘supposed’ to emerge victorious and vanquish his adverseries. And yet he died, likely in a Nursing Home, surely surrounded by friends and family, but not seen or known by the community at large, as a noble and dignified long suffering CFS sufferer, which in the end is what we all are. This is what is bothering me so much about Toms death. Too many of us are suffering with little support, from friends and family, from the local community, from the medical community and from society at large. Too many of us DIE alone, disregarded, disrespected, barely noticed, suffering in silence, suffering in loneliness, while we rot away staring out windows, just hoping someone will call, hoping someone will visit, and the phone never rings, and the knock never comes.
Tell someone you have cancer and you are often swarmed by well wishers, and fundraisers, and strangers on the street handing out pink ribbons. Tell someone you have CFS and well………..we all know how THAT goes. Theres a special place for those who have suffered for so long and so courageously, and by that I am describing all of us. Well, I should say, there better damn well be a special place.
I don’t care so much that I have to suffer. What I care so much about is that I have to suffer in such loneliness, with such disregard and disrespect, with so many questioning eyes and dismissive voices around me. Toms death reminds me of this, of just how much and for how long we suffer, and for many of us, what a terribly lonely journey it is. This is a sad and difficult moment. I am reminded of the lines in Yeats’ Poem “The Second Coming”……….
“Turning and turning in the widening gyre. The falcon cannot hear the falconer; Things fall apart; the centre cannot hold; Mere anarchy is loosed upon the world”.
Something has been ‘loosed’ by Toms death. A loud cry of anguish, a universal sigh of despair.
But I know this, were all a bunch of very courageous people. Noble and dignified in our suffering, all the more noble as we suffer in loneliness. I salute Tom, a clearly incredible man, but I salute all of us. We are all special and we have all suffered equally terrible losses.
It is the one solace for me. I know in the end that I am not alone. I know that I am a part of a noble community of sufferers and that, even if I don’t ‘know’ all of you, I am bonded with you forever.
Mark
so beautifully put Mark and so so true.
We are bonded though we don’t know each other.
One giant sick population all over the world.
Sadness in the US but also accross the oceans …
over here in Europe we are equally sad.
That goes to show what an impact Tom had on people … he was a man that left an immediate impression once you shared a conversation with him – even if it was only over the internet.
We are the “niggers of medicine” as Tom put it boldly, bluntly.
I call it “the parias of medicine” …
If the illness that we have will one day be recognized as the terrible disease that it really is, the name “Hennesey’s disease” would be a lovely option.
To honour Tom and all those that fought till they could not tollerate the pain and isolation any longer.
My heart is aching having read this..i too am a CFS and Fibromyalgia sufferer but i thank God i only have a mild form of both illnesses..i have improved a lot over the past year but everything you have said is so true..had to fight on a personal and professional level..lost my salary,fought my Salary Protection(joke)lost my case,i appealed and took my case to the highest level and unfortunately lost again but at least the State “believed me and my own doctor” and i do get a disability allowance.
Unfortunately too my marriage has suffered and because i did not have a very supportive husband(too wrapped up in his own life and problems and brought severe stress to our marriage)my marriage is over now..so much for “better or worse/sickness and in health”(another blog i know!)
Anyway i do feel a bit better physically but am now so lonely and my only son who is only 20yrs.old and of whom i am so proud(not my husbands son)has been living on the other side of the world past 17mths.in Perth,Oz…he was home for 3wks.in July/Aug.though but so hard to say “bye”to him again,esp.being here on my own…
I think your post is prob.the best i have ever read and i do wish you the very best..where do u live?I live in Ireland…how long have you suffered from CFS?Hope to hear from u another time,take care
Cort- Sad, Sad, Sad. I don’t think anyone realizes how many people with this Disease take their own lives. One way or the other. It is devastating.
Thank you wonderful tribute.
Carole
What a heart-breaking story. I’m sitting here all choked up, feeling the pain. Thank you for writing it down and sharing it with me.
TY Cort for the wonderful eulogy. So many knew Tom. He connected with so many people and he will be dearly missed. Knowing how much he suffered, I am glad he is no longer in pain. I have learned more about my friend and the stories that many are sharing.
As a good friend, Dr. John Whiteside has said to me, “Great scientists and teachers outlive their mortal lives.”
Tom certainly was a teacher. Rest in Peace.
Thank you for that story. I had never heard of him and after reading I feel I like I knew him. I am in awe of the pain he had to overcome to continue his advocacy. Beautifully told story of a very incredible person..
Thank you Cort for this insightful and beautiful tribute to a man I did not know but who did so much for the community. I wish the CAA would be would be more of an advocacy organization and do some PR on people who actually die from this disease to highlight how serious it is. The National CFIDS Association has a nice memorial list, including those such as Tom who died by suicide at: http://www.ncf-net.org/memorial.htm
My guess is that the number of deaths by suicide for ME/CFS (and FM,GWS and MCS) is much higher than other severe diseases but since the death certificate rarely if ever lists ME/CFS as a cause (to my knowledge) there is no way to keep track of this statistic.
Hi Cort I hadn’t seen your article before or even knew that you knew Thomas. I’m still in deep grief over our loss and he was also someone I called my brother and friend. I know your aware of me and my support group as well my 365 day a year Awareness Event on FB.
Well Thomas helped me with that when I was all alone. I know have 3 wonderful friends that are my sisters that help me out. Thomas wrote me so often saying take care of numero uno..no one else will. He knew how sick I really am and am just now on my way in the near future to have ME/CFS confirmed on top of FM and an auto-immune illness called Sjogren’s. I know I have ME/CFS and I feel myself going downhill as well and quickly. I’ve been bedridden for a couple of years. I do all my work for support and what I believe in because I lost a son as well to FM and many chronic serious pain conditions. The difference between Thomas and my son? Tom took his life, where as a pain clinic took my sons due to overdosing him. The 1st time they did it, I saved my son’s life..2nd time I wasn’t fortunate enough to do so while that day I was in bed very sick. My computer has been down however I have spent a week working on it and have heard from my co-admin that you have been in touch and I will get back to you..Will today or tomorrow be back on FB for as long as computer holds on…sisters took up collection for a new one.
I am having a hard time with this whole thing as many are. But this man who didn’t even know me and was so sick, took me under his wings and lead me in the right direction but also knew I was too sick to take it as far as he wished I could. It’s hard to handle all of this when he was so cautious with me always telling me to take care of myself. PACE over and over. Of course, he knew. I do feel myself slowing down since the ME/CFS hit. With FM I couldn’t sleep but exhausted or not I had time, lots of it to spend helping others. I will help others as they help me till it’s my day but I am slowing down. I am always tired and sleep has taken over. I get hurt hearing others say his mind was gone. I just disagree with that. His mind wasn’t gone, he was worn down. We chatted enough that I can tell you his mind wasn’t gone. We can’t allow his death to make it sound like this. He served a cause for 24 years of his life and we need to stick to reality..he was too sick and we have no real help, no cure, not enough research or funding to get to the bottom of this. I think those of us alive and suffering have to fight on his behalf and our own to show the world his mind is not what took him, his horrible pain and poor quality of life is what made him give up. This should never have happened Cort. Never.
What will it take before the CDC and other agencies realize we are all slowly dying a miserable death with the amount of pain we suffer from? Why do clusters break out and then get pushed under the rug? What is it gonna take? Like Thomas told me and so did another Dr. on Facebook, we need healthy people, a lot of healthy people to support us, fight for us and with us, and do all they can because we are just too sick to take it all on. We can’t scream loud enough or fight hard enough to get help yet someone knows much more then is being lead on and shared with the world. Something has caused humans to go from a very active life to being bedridden. Those not bedridden are likely in an early stage and may never get worse, AMEN. I was dancing 3 nights a week and going up and down 3 long flights of stairs going out of the house several times a day to what is now my life in my room with my computer. Sometimes I can get out 1 day a week and rest for days after. Sometimes I can’t. Mostly when I get out it’s to push to get to a Dr. appointment. Am I alone, no way. There are millions of us suffering and it’s as if we are just waiting to die off but how do we explain how the illnesses are hitting younger and younger children? Young toddlers? What is it gonna take? My heart breaks for Thomas and I miss him. I am so Blessed and honored to have chatted with him, have him help me as he could and how many times he said to me, good you all take it over cause I’m done with it. I never thought for a second it was literal. He said this about 1 year ago to me. Maybe a bit longer. I’ll always miss him and my son who basically died for the same type of reasons just slightly in different ways. Thank you for sharing Cort, will chat soon..Take care, hugs Eva
Tom not only was a great advocate, he was also an encourager and a wonderful friend to each one of us.He was in so much pain, but somehow managed to encourage us and keep us going
through his suffering.
A beautiful tribute to a beautiful soul. May you truly be able to Rest In Peace, Tom, and thank you for all of your hard work for such an unforgiving illness.
I knew Tom. I had newly joined the Fibromyalgia group on Facebook sometime in 2009 or 2010. He was the most welcoming, lady formative person I’ve known to this day. If I posted something, he’d respond. I then started asking him questions and picking his brain through DM’s s d our friendship blossomed. He truly was all of those things stayed in this article. HOW did I not know that he took his life?? I assumed he had passed naturally from the weight of it all on his body. Now I know. It was more than enough for his spirit to handle. He was tough so things had to get pretty bad, and it sounds like they did. I remember his stories about Rio. His pictures from there were posted as his co dr pic and profile pics which he would change out with other pics from his glory days. I was and still am so sad to have lost a great friend and mentor. He taught me so much about this illness. I learned more from him in the couple of years I knew him, than from all of the 15 years of doctors combined. Thank you for doing justice to his memory. I miss him!