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BACK DOOR BOY IN A FRONT DOOR WORLD
OUTSIDE OF SOCIETY - THAT'S WHERE I WANT TO BE
GET PROACTIVE 
2nd-Sep-2006 09:32 pm
Pensive
After reading this, please repost it using the code provided below - and thank you in advance.


In early 1992, my friend Page insisted I listen to a tape of a band called Lenny from Athens, GA. She knew I would love this music and the singer, one Elissa Hadley, was a personal friend of hers. They were coming to play at The Loft here in downtown Columbus, about 3 hours south of Athens. I loved the music instantly and was mesmerized by Elissa's vocals. My friend David nailed her vocal style very eloquently in his estimation of the luminous, ethereal quality of her voice by stating that it "...sounds like a candle glowing in a dark room." I am hard pressed to identify any other singer who could match the softness of Elissa yet still be as strong. It isn't just the voice that is so phenominal, it's what she did with it that made her so extraordinary.

I met Elissa and her bandmates when they showed up to play the Loft for the first time, we sat together and got acquainted while drinking hot tea to calm her sore throat. She was completely charming and witty and enchanting on every human level possible, even seamlessly moving past all of that in undetectable ways into something quite otherworldly to me, a quality I don't find in many people. Elissa had a way about her that made her both tough and fragile at the same time. She had a softness and vulnerability that kept you wondering just how thick the exterior was, and you couldn't help yourself - you wanted something from her, she lingered with you long after she'd left the room. She had every reason in the world to be bitter and jaded in recent years, but that wasn't in her nature. She had this childlike sense of forgiveness, everything was always about being in a moment and getting caught up in it - but not so far that you lost yourself completely, just enough to be reminded that you're really living. It's really hard to imagine her holding a grudge. You couldn't resist the need she stoked in you to want to know her and be her friend. In the small handful of time I got to spend with her discussing music and what inspires us, she spoke with no authority or pretention whatsoever and made it clear that taking oneself too seriously made you boring.

And that voice, that amazing, enthralling way that she could sing which also seemed otherworldly and completely out of place on such a relatively small little auburn haired thing. She'd stand in front of a microphone and banter with the audience, but once she began to sing she completely commanded your attention. It was almost a religious experience hearing her perform live and eyeing the crowd of people around you, each staring back at her on center stage in a way that children do when viewing magician's tricks for the first time. Elissa's vocal talent was alchemy at it's finest, her intonation and technical abilities were nothing short of miraculous. To this day there isn't a single person I can compare her style to, it was singular and magnificent and with Page as the catalyst I got to experience it a few times in person and for thousands of hours on a single independently released cassette tape.

It isn't often you get to experience music that upon successive listenings makes you realize that you'll never be the same again having heard it. This ten song cassette tape signified that for me. I went to record stores in Athens and Atlanta and bought every copy available for friends I knew would appreciate it and mailed copies of it all over the place. Over the years I've lost touch with many friends I had then, and I've long since been without a copy of the Lenny tape. I have every single lyric and note from each individual instrument committed to memory, and always lamented the fact that it was only available on cassette. Now and then I'd try to track the music down of try and find Elissa to see what she was doing these days, knowing that in her I'd reconnect with her magic and the soundtrack for many of my joys and sorrows. I thought up until the end of last weekend that I was getting close to locating her, and then no sooner was I posting about it again did I get the email that she was gone. Her heartprint is left everywhere, even for me, having only spent time with her maybe on 4 or 5 occasions.

The timeline from when she began getting sick is astonishing and frightening:
  • November, 2005 - Elissa has a pap smear which turns up nothing out of the ordinary
  • February, 2006 - First cervical cancer diagnosis, begins 6 weeks of chemotherapy.
  • May, 2006 - Elissa is declared cancer free.
  • July, 2006 - After symptoms reappear, Elissa goes back into the hospital. Her cancer had metastasized and begun spreading to other organs.
  • August, 2006 - The cancer is declared inoperable, two days later she enters hospice.
  • August 27, 2006 - Elissa passes away at 1:30AM, only 8 days after entering hospice care.


I want everyone in the world to listen to her music (Breathlanes/Lenny/Nectar) and appreciate what a tremendous loss to all of us this is. I want Elissa's life and talent to mean as much to everyone as it did to me, and I want everyone who loves anyone to go through the resources listed below and start getting proactive with their own health and the health of others. Demand that all of the women in your life get regular OB/GYN exams to not only include pap smears but HPV tests as well. Talk to your doctors about HPV and cervical cancer, there are many types of HPV and while some put women at a higher risk for the development for future cervical cancer, the test can detemine your own level of risk. Men can carry HPV and transfer it to their female sexual partners without knowing THEY are infected as well. Also, QUIT SMOKING - women who smoke have a 50% higher chance of getting cervical cancer than women who don't smoke.


This post is made in love and honor of Elissa Hadley and the wonder and magic she brought in her short time on earth; Mr. & Mrs. Hadley and all of their family, friends, and loved ones; Monica, her husband, and their beautiful babies; Newt and his family; Page for introducing me to Elissa, Lenny, and for growing up with me; David, for everything he's becoming to me; Tom, for his thoughtfulness; Tracy, for reaching out to me; Jimmy/Arcadia, for also understanding it perfectly; Erin, for the effort to get me in touch with people I needed to talk to; the former members of Lenny and all musicians, actors, and friends who were ever graced by Elissa; and to the giant hole in the world that has been created in the wake of this horrible and tragic loss.

You are deeply loved and missed, Elissa.



Thank you for everything in life that you complimented for me. I will never be the same, and I will always feed the ghost.





Copy & paste this code to link to this post in your own journal:




Here's what will appear on your LiveJournal/blog/website:

Someone you love may be dying as you read this, much sooner than you think or are ready to deal with.
They could be silently suffering RIGHT NOW and not even know it.

It doesn't have to be that way.

DO something - make a difference - declare your love.
Don't wait until there's no choice, do it while you have one.

There is no excuse.

Celebrate Elissa's life and musical legacy. Save someone YOU love.

[click here for more]


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Comments 
3rd-Sep-2006 01:56 am (UTC)
Thanks for this, Jude.

Many people don't realize how HPV is a silent killer. And, how prevalent its presence is in men who cross-infect their female sexual partners.

Guys who notice an occasional "bump" or "skin tag" on their penis must have it checked out by a doctor. It's much easier to treat a man than a woman who has the infection, and in guys, the infection is not painful, so it often goes overlooked.

What you're stressing here about the unknowns of life is very similar to Stephen Levine's One Year to Live, a Buddhist practice about preparing yourself for the end of your life while you can still have some input. It also allows you to prepare for the loss of those you love also. It's a very powerful spiritual process I've been working through over the last 8 or so months and I recommend it for anyone of any faith.

It's never too late to remember yours and others mortality.
3rd-Sep-2006 01:39 pm (UTC)
Thanks, C - I really appreciate it - I'll add that book to my list!
4th-Sep-2006 06:04 pm (UTC)
"and in guys, the infection is not painful, so it often goes overlooked."

That's the only comment on the entire thread I disagee with. When mine goes into active status, painful would be a relief to the discomfort that actually sets in. SOMETIMES it can go with no discomfort and no visible signs, but just as often is is extremely painful and very visible. Let's not forget both sides of the coin, eh? ;)
3rd-Sep-2006 01:59 am (UTC)
That is a good thing you are doing by telling her story.
3rd-Sep-2006 01:40 pm (UTC)
If only it were enough.
3rd-Sep-2006 02:13 am (UTC)
It's funny, when I was a kid I used to rag my mother to get an exam as often as possible, guilt her into it, in fact. Now that I've been without insurance for six years, I haven't had a checkup in at least that long. I guess I need to remedy that ...

It's a shame she had to die that young and so violently by her own body turning against her, basically.
3rd-Sep-2006 01:41 pm (UTC)
This is partly why I made this post, because I cannot stand the idea of the grief generated by this sort of thing when in many cases it can be prevented.
3rd-Sep-2006 02:28 am (UTC)
Sometimes a post leaves you at a loss for words and tonight is one of those rare moments. The music is just incredible from an incredible person. Y'all are in my prayers.
3rd-Sep-2006 01:42 pm (UTC)
Thank you for reading & reposting, and I'm glad you are enjoying the music. Also, hello from across the river - I'm just down the road from you in Columbus.
3rd-Sep-2006 04:00 am (UTC)
Jude,

Again, I am so sorry for your loss and the loss of the world of Elissa's talented voice and beautiful soul.

I've been preaching these same words for 16 years now since my Grandmother died in my arms 16 years ago of cancer. Over the years I lost one family member after another to cancer including my Mom in 1997.

We need more info out there and more funding. Do you realise how much could be done to save lives with Bush's war chest? More lives than that war is supposedly saving. The real terror in this world that anyone can hear is the doctor saying "you have cancer". Especially since there are so many preventative tests that can and should be done for both sexes that could save lives.

I tried to use my time, money and sewing talents to both raise funds and raise awareness about cancer, but most people do not want to get involved until it hits them or someone they love. Not including you on this, I know you have been helping out before Elissa. But even people close to me have watched as my family have struggled with this disease and it's devasting effects on our family, and did nothing to speak up until it hit them or someone they loved.

You know we went through our life savings, a second mortgage, and had to file bankrupcy this year all because of the costs of medical care. I went looking to our government for help since Larry's $30,000 a year income before taxes was not enough to live on when we were putting out $9,000+ out of pocket a year for medical expenses. We did not get help from our government despite my wring to everyone all the way to the White House, and it's not just Republicans because I wrote to John Kerry, and I got an automated reply back asking *me* for money for his campaign.

I wrote to my congressman several times and got no help yet his wife was diagnosed this summer and I can guarantee you she is getting the best care available and they aren't having to sell off everything they have and going out and begging strangers for help, so she can afford to get necessary care to survive her cancer. Yet, I doubt it will move him to vote for more money for research or medical care for people needing financial help.

We need for the government to pay for everyone to have preventive tests for cancer and for anyone who has been diagnosed with cancer. It would not only save lives but be more cost effective in the long run especially since most cancers can be treated and save lives if caught early.

Thanks taking Elissa's struggles and death from cancer as a way to voice what needs to be said. I wish more people would become moved and get involved.

Hugs, Christina
3rd-Sep-2006 01:45 pm (UTC)
THIS is part of why my blog has turned into what it has turned into, because people just don't know or choose not to listen.

I agree with you on all of your points, and socialization of healthcare would definitely be a proactive step towards saving lives and resources.

You know me, if I have no flag to wave I take off my shirt, tie it to a stick, and wave that.

I love you, honey.
3rd-Sep-2006 11:11 am (UTC)
I have several strains of HPV, including one that causes cancer, though it has not caused cancer for me fortunately. I was diagnosed because it caused symptoms. Many times, it does not.

Today, ob/gyns are routinely testing for HPV during annual pap smears. This is a good thing as they didnt' used to. Here's the bad part. If you do not have HPV, and are monogamous, then they recommend pap smears every 3 years (if you're under a certain age). If you have an HPV strain that causes cancer they recommend pap smears every 6 mos.

Here's my objection. It takes two to be monogamous, and you can only be certain about yourself. HPV is both highly contageous through sexual (specificaly gential to oral, anal or vaginal contact) and extremely common in the population. If you've had sex with anyone who's had sex, you're considered exposed.

The every three year pap smear should only apply to women who are completely celibate during that three year period. Otherwise, I see that policy promotion as causing more deaths.

I'm glad they're screening routinely for HPV, it's a necessity. But it shouldn't be used to exclude risk in any patient who's sexually active. And women need to know that if their ob/gyn doesn't routinely screen for it to ask for the screening to be done every time they have a pap smear. If thei ob/gyn doesn't believe it necessary, then they should immediately switch to a new doctor.
3rd-Sep-2006 01:47 pm (UTC)
Thank you for offering this, it's just one more stage of the kind of awareness I want brought to people's attention. I agree that the 3 year pap as a routine is very ineffective, especially in people with higher risk factors and/or exposure to HPV, there's an awful lot to fall through the cracks there.
4th-Sep-2006 08:18 am (UTC)
Yes.

Thank you. For the longest time how many women actually knew the leading cause of cervical cancer was actually caused through HPV? Is it covered in sex ed yet? Kids need to know about this as much as HIV if not more. I know we discussed HIV and then "other STDs" were mentioned but we had to go to a cliic to find out more.

My mother, married for 25 years, had to have a cone biopsy because my father passed on HPV and she had some irregular cells in her screening. Aside from the fear I had for her you can just imagine my anger that my father put my mother's life at risk by having (unprotected) sex with another woman.
4th-Sep-2006 08:44 am (UTC)
For the longest time how many women actually knew the leading cause of cervical cancer was actually caused through HPV?

I'm highly educated both on STDs and in general. I had no idea that HPV even caused cancer...until I was diagnosed. My initial outbreak was missed by my ob/gyn (skin tags just above the clitoris, but below the pubic mound, in that alcove type area). It got worse, and I ended up calling my HMO's nurse advice line. And she told me over the phone it was likely to be an STD, which was HPV. I was quite frankly, shocked. I was married and monogamous, and subconsciously considered STDs as something I no longer had to worry about.

As far as sex education...I seriously doubt it. There are groups currently against the HPV vaccine, claiming it will promote pre-martial sex. It boggles the mind how these people can justify exposing their children to cancer later in life, under the guise of religious morality. Also it completely ignores exposure due to rape.

As far as infidelity, the most common worry tends to be HIV, then herpes. I've been open about my exposure, because I believed it would help others. I had to undergo two extremely painful laser removal treatments, as well as numerous cryo procedures to remove the warts. When I was first diagosed, after the initial shock of it, I was surprised by my emotional reaction. I felt ashamed. I felt...dirty. I felt like I should walk around ringing a bell screaming, "Unclean, unclean".

It may sound overly dramatic, but truly the impact surprised me. It was horrible. I disclosed it to a very close friend (a gay male friend of mine) who said, "Welcome to the club". He had been exposed years ago. It was EXACTLY what I needed to hear. Someone who said, 'Heh, me too!' and made it no big deal. Obviously for women, as far as health concerns go, it's a big deal. But the stigma of STDs...needs to go.

Women don't talk about these things because it's...dirty. It's seen as extremely negative. It implies ... well 'whore', and it's just seen as (and treated by many as) something you simply don't tell people. What would they think!

Which is why I publically disclosed it to many people. So that if they weren't fortunate enough to have a friend like I did, then perhaps if they or someone they know does get it, they won't feel so alone, or have the 'ugh I'm a filthy slut' feeling. At least not for too long. ;)

I also spoke about it because many people are asymptomatic. Which means all women should be screened, and that men should be aware that if they carry the virus, they are putting their partner's lives at risk if they carry a strain that causes cancer.

A final note, while I had very obvious symptoms, my partner did not. He has never had any symptoms. I did become aware of infidelity, which has had obviously a serious impact on our relationship. I suspected it when I was diagnosed. He swore then that it had not occurred. Later when I found out there had been infidelity, he admitted to it, and said that at that earlier time there had been no infidelity. There was no reason for him to lie, and plenty of reasons for him to have been honest before. So I believe it. Which means that one or both of us had been carriers for years prior to my outbreak.

Also during the first laser procedure, I almost died due to complications with the anesthesia. I had an asthma attack when they tried to ring me out of anesthesia, and it took them 3 hours before they could get me breathing again on my own. An additional 'risk' of this disease.

The other treatments, cream that melts skin, cryo to freeze them off, are all painful. Laser treatment is unbelievably painful. Add in cancer risks, and pregnancy risks...and it's a very nasty STD.

And one I hadn't heard much about until I had it. Though I could tell you a tremendous amount of information on HIV, herpes, and most other STDs. This was just one never really talked about. And one I didn't know the risks of. It wouldn't have changed any of my sexual behavior if I had been aware. But I would have INSISTED upon screening. I always demanded STD screening of partners prior to sex, and was myself tested regularly prior to marriage. So, that's the only thing awareness would have changed in my case.
5th-Sep-2006 01:06 am (UTC)
that's exactly how i felt when i was diagnosed. dirty... it was a horrible feeling, and my boyfriend was with me soon after i received the diagnosis and he had no idea how to help me... i was fetal, just so depressed, especially with the news that i could develop cancer at some point, if this isn't regularly treated.

the other thing is you can have it for YEARS before developing it, so married women (like yourself) could have contracted it years before meeting your spouse, and only developed it after marriage...

and for this being the most common STD out there (there's so many forms of it, and most don't cause any symptons and resolve themselves a couple months after outbreak), there's absolutely no information about it. and it really hurt me to find out that the STD i have, the one that is just as life-threatening to me as aids... is one that i was never educated about.

did you know you can get it from the guy even when he wears a condom?
5th-Sep-2006 01:10 am (UTC)
also, you can have it for YEARS before the disease actually becomes active, so even after the woman becomes monogamous, or even celibate, she can then have an outbreak where the disease stops lying dormant, and actually becomes active... so there really is no safe 3 year break in pap smears.
3rd-Sep-2006 01:35 pm (UTC)
If I can add my $0.02 to the discussion of cancer, especially cervical cancer, I'd suggest reading this article.

http://www.washingtonpost.com/wp-dyn/content/article/2005/10/30/AR2005103000747.html

A vaccination is in the works but people are gearing up to legislate against it because of "moral" issues assosciated with it.

In the suggestions you have, I'd also suggest everyone, men and women, get the vaccine. Gay men need vaccination as well (HPV is also corrolated with rectal cancer)...
3rd-Sep-2006 01:49 pm (UTC)
I love you, Jason - I just do. I'd completely forgotten that I'd blogged about this very thing before, and it couldn't be more appropriate to bring up now. By all means if you know of any other links that should be added to the resources section of this post, let me know so I can make the necessary edits.

You're the best!
3rd-Sep-2006 02:02 pm (UTC)
The wikipedia article is a great start. I'm not about to recommend JAMA or Nature Medicine (this one is great - I'd die if I were published in any of the higher up nature publications) - I don't think it's a good means to disseminate information.

Take a gander
http://en.wikipedia.org/wiki/HPV_vaccine

3rd-Sep-2006 10:54 pm (UTC)
It's not just in the works - it's actually a released product, and now available in Australia and soon to be around the work.
4th-Sep-2006 06:49 am (UTC)
fair enough - but I guess I didn't realize it'd gone further than phase IV trials in the US...
3rd-Sep-2006 02:37 pm (UTC)
Very well written. Thanks for sharing her story.
3rd-Sep-2006 04:44 pm (UTC)
Thank you for reading and linking!
3rd-Sep-2006 02:47 pm (UTC)
Men can carry HPV and transfer it to their female sexual partners without knowing THEY are infected as well.

According to my own HPV doctor, OVER 50% of gay men with HIV also have a strain of HPV.
3rd-Sep-2006 04:45 pm (UTC)
Excellent point, this illustrates the importance of viral infection being equal opportunity and falling over lines of gender, sexuality, and everything else.
3rd-Sep-2006 03:40 pm (UTC)
I have nothing much to add except my admiration for getting this information out there, I'm seeing it in a lot of journals. HPV is a topic that seems to make a lot of people nervous once they start discussing it and realizing how prevalent it is, but the invasive forms CAN be fatal. There needs to be a lot more education. Thanks for this.
3rd-Sep-2006 04:47 pm (UTC)
Thank you for the comment and for reposting!!
3rd-Sep-2006 04:52 pm (UTC)
Heartbreaking. :( I reposted!
5th-Sep-2006 10:34 pm (UTC)
Thanks, I really appreciate it. Download the music and listen to it often!
6th-Sep-2006 05:58 am (UTC)
WIll do! :)
3rd-Sep-2006 08:26 pm (UTC)
Thanks
- for keeping us mindful that LJ can be a way to get important info communicated out there.
- for always fighting the good fight and keeping us mindful of priorities.


5th-Sep-2006 10:37 pm (UTC)
Hey - it's part of the reason I do this, it's my way of being able to live with all of this grief and do some good by helping opening eyes and minds elsewhere.

And besides, too many people are apathetic - I just can't be like that.
(Deleted comment)
5th-Sep-2006 10:38 pm (UTC)
Thanks, lovey - I know you'll love this music, it's truly amazing on a technical level what she could do vocally.
5th-Sep-2006 12:57 pm (UTC) - here via habibe
reposted. I have (had?) HPV-dysplasia, and I work in the women's health field. Thank you for this story and link, and I'm so sorry about your friend.
5th-Sep-2006 10:39 pm (UTC) - Re: here via habibe
I'm glad to know that this is having the effect I wanted, it gives me promise and hope for a better future for us all. Thanks for reading!
5th-Sep-2006 03:51 pm (UTC)
Thanks for this... I cam here by way of habibekindheart.

I am HPV positive... I found out at my first pap after becoming pregnant with my daugher, who was born on July 20. I was reluctant to have a colposcopy while pregnant so I'll be doing it if/when I have an abnormal test again (I'm waiting for my results right now).

Before the abnormal test, I had no idea that a virus could cause cancer. That sure opened my eyes. (And I thought I was a well-read person before that!)

I'm sorry for the loss of Elissa and I thank you for making people aware.
5th-Sep-2006 03:57 pm (UTC)
Oh and I'm reposting. :)
5th-Sep-2006 10:41 pm (UTC)
And I thank you for it!
5th-Sep-2006 10:41 pm (UTC)
Pretty astonishing isn't it? Imagining what this new vaccine is going to do in terms of prevention is just incredible to me, but I have to say it makes me a bit bitter that it came after Elissa found out she was sick. That's why I do these things, it's my way of working through that stuff in such a way that I can live with it.
(Deleted comment)
21st-Sep-2006 09:39 pm (UTC)
Anonymous
im 27 as well and im sure it won't be a problem to get the vaccine..after all it's not even a year difference...
9th-Sep-2006 12:59 am (UTC)
My god, that could be my sister, Maureen. She was diagnosed with breast cancer on May 19th of this year and died on June 3rd. The cancer had metastasized to nearly every part of her by then.
20th-Oct-2006 02:26 am (UTC)
This is a lovely tribute to a beautiful woman. I've reposted this on my journal.

Thank you so much for promoting awareness. I have HPV as well and have had cryo done to remove abnormal cells. It is an incredibly painful and I would urge other women to get the vaccine. Once you have it, it is a matter of keeping your fingers crossed and hoping it never comes back, and if it does, that it doesn't turn malignant.
26th-Oct-2006 05:50 am (UTC) - I think of Elissa everyday
Anonymous
Elissa was my sister's best friend (although she'll tell you she still is). She was like a surrogate, if not estranged, sister to me. She was so full of life and forever young in spirit - hauntingly inspiring.
I never could have imagined that she'd become our American Eva Cassidy, but perhaps I should've.

Justin
26th-Oct-2006 05:56 am (UTC) - Re: I think of Elissa everyday
Anonymous
Jesus, I feel stupid .. as if going out on a limb by comparing Elissa to Eva isn't enough - Eva is American. I must've been thinking of how Eva broke big in Europe posthumously.
Grief has a way of making your mind hazy and numb. :)

Justin
8th-Nov-2006 07:16 pm (UTC)
I posted too. Just feeling a little overwhelmed right now.
29th-Nov-2006 10:45 pm (UTC) - Elissa
Anonymous
I just found out about Elissa...I talked to her mom today. Elissa was someone who looked beyond your exterior and made you feel special in her presence...she was funny, passionate, deep, energetic, compassionate. I always felt better about who I was inside after being around her. She held no judgments, no stereotypes. Until someone gave her a reason not to like him or her, she accepted you, regardless of anything and because of your heart. She inspired, encouraged, and loved. She gained so much, and yet gave herself so much more. Whomever had the pleasure of meeting her, knowing her was so fortunate...but Elissa would say the opposite, that she was the fortunate one to have met you.

From,
A highschool friend, chorus member, student of her mom
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