Wednesday, September 11, 2013

RIP Tom Hennessy

Dammit.

Tom Hennessy was an ME activist. Though he was desperately sick himself, he fought for over two decades to get people to take myalgic encephalomyelitis seriously, call it by the right name, and fund research for a cure.

I first encountered Tom in 2008. Ron and I had just released a recording of "Everybody Knows About Me," our ME advocacy song, and I wanted advice on how to get it out into the world. I found his site, RESCIND (no longer online), and figured he'd be a good person to contact. He loved the song. He proposed hosting it on RESCIND to raise funds, which we did. He was so passionate and enthusiastic, despite the havoc his disease had wrought on his body, despite his anger at the indifference and scorn leveled at sufferers.

The last time I talked to him was a year ago, via Facebook. I linked him to a song I'd written recently, and he expressed his frustration about not being able to do more for the cause. He'd wanted to put a huge, big-name fundraising/awareness concert together, but he got into a car wreck before plans took off. He still had hope that he could make it happen if a couple of big names did more of the heavy lifting.

Now he's gone. Died by his own hand. It's stupid for me to be surprised, as this is a common cause of death for people with ME, but he seemed like one of those people who would fight forever. Live forever.

I wish his story had a happier ending. RIP, Tom.

* * *

I wanted to close this with a link to a charitable organization that funds ME research or ME awareness. Unfortunately, I don't know where Tom would have wanted the money to go. His obituary page lists two places where memorial contributions can be sent, but one of them is the CAA, and I know for damn sure he wouldn't want you giving them the time of day. If anybody has a better idea, please contact me at susan[at]cinderbridge.com or leave a comment.

10 comments:

Jill said...

Thanks for this. I thought he had Lyme. He would not have wanted donations to go to the CAA (NAME is just a website and doubt they take donations). Would have thought some Lyme group. There are some that are very credible.

HIV-NEGATIVE AIDS? said...

Over the years, I have loved listening to Tom's testimonies "NO MAS." What a rabble rouser! Tom never swayed from taking a stand on unearthing the horrific truth called "Gulf War Syndrome." Although I never met Tom in-person, I will miss our chats in all the forums, a few phone calls, and *strategy conversations* about our shared TRUTH-SPEAKING activism. I know how much gets risked when one chooses to speak the truth, yet Tom still pressed forward. Tom is truly a hero in my mind, who gave me so much fuel and inspiration (and lots of advocacy ideas too). As I don't believe in giving money (as there is already millions being misused --- and prefer the priceless value of people's time and voice), in Tom's honor, I am going to do a postcard drop to every USA Congressman (stating exactly what I know Tom would want me to say). The ending is happy ---> it is truly the mark of a man, the legacy that Tom has left behind. w ww.cfsstraighttalk.blogspot.c o m

cinderkeys said...

The postcard idea is a good one.

Jill, do you know of any specific Lyme groups? Lyme research certainly needs a lot of love too.

HIV-NEGATIVE AIDS? said...

The only respectable, NON-government-funded research I know of with Lyme/Mycoplasma is with Dr. Garth Nicolson @ www.immed.org. He's testified to Congress 7+ times now.

Also, Kathleen D's work with OspA/Pam3Cys/Lyme Cryme.
http://www.actionlyme.org.

I keep all these links and 100's more -->

www.cfsstraighttalk.blogspot.com

{I hope it makes someone's life a whole lot easier than mine has been.}

Erica Verrillo said...

NAAME, the National Advocacy Alliance for ME, is a recently formed advocacy group that has been doing a good job of staying on top of the DHHS. Tom would have approved of them. http://naame.org/about-naame/

HIV-NEGATIVE AIDS? said...

Money is not the solution. There is already plenty of it, and it gets us no where. The solution is in people's time and voice. Just watch the award-winning documentary "HOW TO SURVIVE A PLAGUE" about how ACT-UP was born.

http://surviveaplague.com/


Something simple --->

Have everyone print-up a stack of free business cards.

Then go leaflet a parking lot. I have been doing it for years.

It's free and anonymous.

Results = priceless.

SAMPLE "DEAR CONGRESSMAN" LETTER + FREE & SIMPLE ADVOCACY IDEAS:

http://cfsstraighttalk.blogspot.com/2006/10/potential-hope-for-cfidsme-patients.html

Juliet said...

That's sad news, Susan.

I don't know about the current state of research in the US, I'm afraid - maybe the Whittemore Peterson Institute, if they're still doing ME research? - but anyone who's in the UK could give money to Invest in ME - they have a general biomedical research fund and are currently raising funds specifically for a trial of the drug rituximab.

Anonymous said...

I had no idea Tom died. Thank you for letting us know, Cinder. I'm the ME chick who used your awesome song to make the video for Phoenix Rising. I used to visit the Rescind site a lot a few years ago and it always made me feel more connected to others who are suffering like me.

Tom was a wonderful advocate for us. I am so sorry to hear he's left our world.

RIP Tom.

foggyrl

Pam Burrows said...

I just learned Tom died. I was involved w/ Tom in early 1990s. He wanted to make May 12 "National CFIDS/ME Awareness Day". The big national groups didn't want to get involved. Someone added Canadian & UK SGs & called it International. Having lived overseas, I reached out to PWCs in South Africa, Australia, Singapore, Denmark, Belgium, Germany & so many more via phone & snail-mail; we only had Compuserve, Prodigy & limited Internet Access. A yr or 2 later that would change & we'd all be interconnect. They said that the CFIDS community had the best interconnections on the web!!! Tom made us feel like we were making a difference, while we still weren't sick enough & still able to do something. Now I am legally blind & usually bedridden. No longer able to help. I know a solution won't come in time to help me.
BUT I hope some more Toms will come along to inspire the newly sick that they have to fight for discovering the causes & helpful treatments for this disease. Fighting for CFIDS/ME is like striving for peace ... every generation must take up the cause & push it further.
Tom, as Nancy Jones used to tell us in the phone w/ her thick southern drawl "I love you"

cinderkeys said...

Pam, since you're just now finding out, I'm sorry for your loss.

May 12 is why I connected with Tom. I wanted to release the aforementioned ME advocacy song on that date, and researching it brought me to RESCIND, and the guy who invited ME Awareness Day.

Still weird to think that he's not around anymore.