But I have realized over the years that it is not that the disease is invisible, it’s that the disease cloaks us in a shroud of invisibility as we fall through the cracks and disappear from the minds and lives of those around us. How else to explain the disemboweling of the lives of so many of us? How else could it be that a family member could watch a PWC go through a cytokine storm with a raging temperature and inability to lift his or her head, and decide that the PWC was just mad at them and didn’t want to talk? How else to explain having to be assisted to the bathroom while head bobbling and drooling, and not have anyone ask if you needed medical assistance?
And how else to explain the silent underbelly of the beast – the uncounted, untold number of PWCs who slip right through the cracks into the Neverwhere of abject poverty and even homelessness, as a final insult to a life shattered by a body snatcher named CFS?
It happened to me, and I was amazed at how easily it can happen.
I don’t tell this story to garner sympathy, only to illustrate a point. It seemed that one minute I was well employed and a homeowner with two cars, and the next minute I was living in hell. Over time as I became more disabled with illness, I lost my job, my home, my cars, and my way. I found myself eventually living in a car that belonged to a man I did not like, with a hungry dog, shoes donated by the church, and sixty dollars worth of precious food stamps. At a time when I could barely lift my head I was being asked to fight for my rights to Social Security Disability and did not have the brainpower to do so. I went without income for five years while my case was denied as my medical records were not well padded due to inability to pay for a doctor.
I was lucky. In the end, someone from my past who still cared about me found me and brought me home. All I had to my name at that point was my birth certificate, the clothes on my back, and those damned church shoes. And the hungry dog. But what about those who are never rescued, the ones who Neverwhere claims for keeps? How many of us die on the streets, and get chalked up to “just another homeless drunk down on his luck” status?
This is where advocacy in the trenches comes in, and this is my acknowledgement and thanks to those who work tirelessly and without thanks at the very core of CFS Neverwhere.
While politics raged on, while the CDC tried to psychologize us, while the NIH denied us funds, while medical findings caused and then dashed hope, while big advocacy groups jockeyed for position, while bloggers blogged and reporters reported, (and some of these things were important and necessary), handfuls of PWCs who had seen Neverwhere and managed to escape turned their advocacy efforts to reaching back into the horrid place to pull PWCS out one by one. These silent trench warriors, many of whom only recovered part of their lives and still live on very limited means themselves, sent food to the hungry. They offered their own small apartments or trailers as places of refuge for the homeless. They sent money to needy PWCs for medicine, in turn doing without themselves as the money cut into their grocery budgets.
And they still do.
To those trench warriors, (and I won’t name you. I know you wouldn’t want that.) I salute you. I salute you with everything that I am. You are the very meaning of advocacy. You are what human compassion is all about.
For everyone, no matter what advocacy role you have adopted, I salute you as well. Whether you blog about the science, write articles about the politics, or work at fundraising, you are playing an important part in the overall picture. Maybe, just maybe, if we keep those trench warriors in mind while we are doing our own individual parts in the overall picture, we can flavor our advocacy with the kind of compassion and human spirit that will help make a difference. Let’s remember those who have fallen through the cracks, and be a part of that arm that extends into Neverwhere to rescue those who need it most.
CFS Untied
A wonderful moving post. Thank you for your courage and inspiration.
Hi Khaly, Congratulations on this new blog!
We here, in Spain, are constantly in the trenches of CFS/ME: fighting press, fighting for medical services, supporting Spanish XMRV research, educating, trying to get CFSers to develop their critical thinking, etc, etc. Its day after day in the trenches with no letting up.
So we will keep in touch with your blog and share our adventures in….Nowhere, Spain.
All the best,
Clara Valverde
Liga SFC
http://www.ligasfc.org
Thank you. Your story starts much like mine, with a home and a car. After ME/cfs struck and we lost everything, my two children and I were actually turned away from the homeless shelters because we were too sick to stay there. We wound up lucky—found a place we could afford, got help getting a vehicle, got a lawyer who took the disability case on contingency—but the knowledge of how easily it could have gone the other way is so frightening, and our existence is still so marginal, with terribly inadequate medical care in the remote region where we wound up.
I too tell my story not for sympathy but to enlist people to take action. We need healthy people to fight for us, and for those worse off than us, because even those of us who have secure homes and family support, are too sick to do all of the advocacy work that’s needed. Somehow, Neverwhere has to scream out its presence to the world above.
Thank you for your responses!
Creek, thank you for sharing your story. It’s so scary how easily people can fall through the cracks, especially people who are so sick and without resources. I agree, we need to bring awareness to this and try somehow to build a safety net to help catch people before they slip through, or at least try to help them back out of Neverwhere.
Clara, thank you for all you do. Being in the trenches constantly is not at all easy. It’s a lifework. Thank you for warrioring.
Wow! 2 years ago I was making 6 figures and now I have applied for welfare while my disability case is being appealed by the lawyers. I am new to the CFS world mostly because I was in denial for so long, I kept thinking I could beat this thing that was beating me as more and more slipped of my life slipped through the cracks. During all the heavy testing when they thought I might have Scleroderma, MS, Lupus, etc. I actually at one point hoped one of the tests would come up positive and I would have one of those diseases, a disease that could be tested and understood and I could take medicine for. I knew I didn’t want it to be CFS, because I knew how hard that road would be and I desperately didn’t want to be part of that group. So I fought getting involved (sorry!). Well the humbling experience of my life and livelihood being stripped away has brought acceptance. I am grateful for what I do have and am scared to death of what i still have that I could lose of myself. But for now I stay plugging away with what little energy I do have each day and embrace the things I can accomplish with much celebration and gratefulness.
I would like to help out with advocacy or something but honestly don’t know where to start. Thank you for your blog and for letting me share a bit of myself. Any ideas on what I could do to help would be much appreciated!
Warmest regards,
I hope your moving posts reminds people to take people with CFS into their homes. If for no other reason, those of us who can could pool our resources to get the physical help that we need.
Right now, I am helping out a teen (although she doesn’t have CFS, she has immune issues and so I am giving her a place to live until her mother finds a suitable place). My goal is to help someone else with CFS get off the streets or stay off the streets. I could have been there myself if not for the generosity of my mother, who gave me a rental home she owned, which was a huge chunk of her retirement planning.
Thank you.
Oh Pancho5. I did the same thing. Hoped fervently it was Lupus or MS. The first doctor that pseudodiagnosed me said, “I think you probably have CFS but I don’t believe in that. Here’s some Paxil.”
Are you on Facebook? If you are, friend me. I am Khalyal over there. By networking on FB, you can run into a lot of opportunites to help, to advocate. Please join us!
eClaire, thank you for doing what you are doing. I’d love to see us be able to network enough to set up a safety net for PWCs in need. Maybe we can. We could set up a way for those who can to donate, and maybe a network of people who can help in other ways, like counseling or even opening their homes.
But even without that, helping somebody one on one is the best advocacy there is. It all starts there.
Oh, Khaly, how our hearts break for those not so lucky as us; when I first got sick, my partner took complete care of me and now we took in my grdau with CFS since age 14….but that is family.
For others to take in and shelter someone with CFS, especially the mothers with children also sick is nothing short of saintly and I commend you who have done so.
I must make a ‘plug’ here, of course!
We at the ME/CFS Worldwide Patient Alliance (MCWPA) are a Cause on Facebook. In just seven weeks, we have raised $6500 and have 1158 Members! We are going to place Ads in the Washington Post that will get not only officials demanding answers for patients with the NeuroEndocrineImmune Diseases that Judy Mikovits is investigating, but we will get the general public informed as to the danger they are in from these illnesses. A major goal is to get social services in place to address just these concerns you have raised: places where patients can have one-stop services: medical, SSI, SSDI, housing, carers’ help in the home and support from all sides…even into Neverwhere! We will find them, and we will
be able to help them when our Campaign is begun, that is our fervent desire.
If you want a place to be a part of this campaign, please join us; patients make
all the decisions and have a say in everything. Amazing things are happening! Go to:
http://www.causes.com/causes/511536
Poncho5, how we’d love to have you!
Keep on bringing us forward, Khaly, ever marching up out of Neverwhere into the light of science and hope!
Kathryn, family or not, what you do is important and worthy. Thank you for ALL you do! We can always count on you to call our attention to what matters.
I am signing up now! As long as we have a new day to wake up we have one more day to celebrate!
Welcome aboard! And that’s a beautiful sentiment.
This is such a moving tribute to others, Khaly, and (though I’m sure you don’t know it) a moving proof of your courage and grace. My own story is a grim one, as are the stories of so many of us. So often it involves falling through every crack of the social safety net (if there really is one) toward humiliation and despair. But after reading your experience I can only bow my head in respect, and to the other posters here.
SlowDescent….what an appropriate username! Thank you for posting, and you are so right….the social net, if it does exist, seems very thin for those of us with this horrible illness.
Thank you so much Khaly for sharing your story, which is an inspiration to us all!
It is also good to know that we are not alone on this CFS journey in life.
Hi CosmicRainbow, thanks for posting!
Yes, sometimes all we have is each other, but sometimes it’s wonderful to have that!
Khaly – superb blog !! Wonderful analogy, absolutely accurate.
This “Neverwhere” :
This invisibility, this noticing how everyone , eventually , turns away; how they cannot bear to know how bad things are anymore.
This stripping away of everything until there is only your sanity left and you there trying to hold it together.
This incredulous, this staggering , this incomprehensible propagation of the nonsense that is “CFS”, this genocide, this cruel destruction, through defining it away, of the neurological disease ( and so many lives) : “ME”.
This living through the greatest medical scandal the planet has ever known. This trying to think what to do for my wife , this ever-searching for ideas, this digging ever-deeper for the courage and those tattered shreds of self-belief, that have not yet been stripped away by poverty, lack of status, career, opportunity, attack by fellow campaigners; in order to take one more stand, write one more blog entry – but why ?
This attending one more meeting, if I can leave Linda, this taking on a storm of prejudice and ignorance and publish a scholarly peer-reviewed article now and again.
And all the time , here in Neverwhere, you find there is no one to hear, to care, to help you.
Here in the Underground, it’s warm and musty , high up above the trains just keep on rolling. Now and again, someone whiles away a minute or two by remarking on the rats. No one bothers, though ,to look down between the cracks; why should they ?
They haven’t got the time , they want to get on with their lives , they want the trains to keep on running, they don’t know the danger that lurks beneath their feet or
have a clue, there’s people screaming, close to despair.
Welcome, Greg! I have followed your videos and posts for a long while. For anyone who is not familiar, please visit Greg’s Youtube channel at
http://www.youtube.com/user/gregcrowhurst
He has been a stunning advocate for his ill wife.
Greg, I love your comments. Dead on. You’ve exactly encapsulated what I imagine our situation to be.
I especially love “Now and again, someone whiles away a minute or two by remarking on the rats.” Perfect.
I was touched by your story and stories of others who have lost so much. I have lost my job, home, independence, and have used all of my retirement savings to live on while I fight with social security over whether or CFS is real. My biggest
fear is that I will one day be homeless and I’m here to tell you, I would never survive on the streets. I did not realize the emotional turmoil that people with chronic illness faced until I became one myself. I have been a Registered Nurse for 27 years. I’ve never been rich but I knew that I would be able to work and have food and shelter. God bless those who aren’t as fortunate as I, right now I have a home with a friend and he is fairly tolerent of the fact that I am unable to help with finances, housework, etc…I pray everyday for a cure from this devastating illness and until that time, I will keep pluggng on.
Jane, thank you so much for sharing your story. I’m afraid there are a multitude of similar ones out there. It’s scary to think about facing homelessness in any case…much more so when we are so very ill. Thank you for posting!
Pancho 5 Your suspected diagnosis would make me wonder if in fact you have Lyme disease. Many people with ME/CFS are found to have Lyme Disease and most of the really top experts in ME/CFS recognise this. However the blood tests for lyme can miss 50% of cases so it is necessary to find a Lyme Literate Medical Doctor have a look at the Guidelines on http://www.ilads.org
Most main stream doctors will only follow the IDSA guidelines and treat on a short course at low dose antibiotic if you are lucky.
It was a chance course of antibiotics which improved my symptoms that led my Doctor to suspect Lyme after being ill 4 years. Now on long term antibiotics I am nearly 100%.
There are many parrallels with these two illnesses and some Lyme patients have also tested positive for XMRV so it is a complex affair.
Thanks for posting, Joanne. This information may help some peope.
Thank you for telling your story, Khally. We have known for some time this HAD to be true. If my family, or my large extended family, did not take care of me, I would have ended up on a heating grate in Philly.
About 15 years ago, my then-specialist in Washington and I plotted to take a TV camera through a homeless shelter and diagnose people on the spot, but that fell through.
You should know that Lenny Jason (already my hero because of his published professional research) has as his major concern finding a way for PWC’s to live, whether some kind of group housing or assistance.
They used to treat patients with M.E. better in England because they had more social services for the sick and disabled, but when CFS and the British shrinks came along, it flipflopped – patients now fear being forced into mental hospitals because they “refuse to” (I.e., collapse during) participate in graded exercise therapy.
I tell people this disease population lives in a Dickensin world of abject poverty.
But you told the story much better than I could. Send that story to the CFSAC.
God willing, we are not at the end, nor the beginning of the end, but we are at the end of the beginning.
Thank you Mary. That would have been a wonderful project, to try to spot-diagnose people in a homeless shelter. And thanks for sharing the information about Lenny Jason. He has worked long and hard for us. Your description of a Dickensin world of abject poverty is poignant and unfortunately true.
As always, thanks for all you do!
Khaly, thank you so much for writing this. It is so easy for us to get sidetracked into the intrigues of politics involved with ME/CFS and to forget the real purpose of our work. This article brings that real purpose into clear focus.
While the big wheels grind to change the big picture, people are still suffering, and if we still have compassion–and most of us do–we are often able to do those actions which seem small to us but which can actually change the lives of sufferers.
You are such a bright light in all of this suffering and confusion, Khaly. Thank you.
Patricia Carter
http://www.mecfsforums.com
Aw, Patricia, thanks. And thanks so much for all you do!
Dear God. Here I am sitting here feeling so sick and I read this story and others’ horror stories and I don’t know what to say. I am so sorry. I don’t know how any of you survived through all of this and being so sick. YOU are the warriors of this story and I salute you.
So, to help those too sick to get up from the bed (or car) and in the same sort of God-awful situations that you all were in and many are still in we must get our voices heard and the way we intend to do this is through that 1/2 page AD in the Washington Post. At this point many of us realize that regardless of the newspaper articles on ME/CFS and the studies that are out there, the public, researchers, doctors, and policy makers still do not know or understand what really is involved in having ME/CFS or what this newly discovered Retrovirus family could mean to THEM.
Please read, join, give us your ideas/input, donate if possible, but be a part of a major media campaign to MAKE everyone more than just aware but educated on ME/CFS and this quite possibly deadly family of retroviruses.
God Bless You – and God Bless those living in hellish situations without help. We are trying quickly to get it for you – all of us. See the link below and get involved.
ME/CFS Worldwide Patient Alliance (MCWPA)
To create a patient-driven effective advertisement campaign on ME / CFS, and XMRV, particularly on patient quality of life.
http://www.causes.com/causes/511536?m=f042604e
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Thank you for this poignant post, Khaly.
Oh, I’m so glad you posted. When my old blog went down I lost your link. Thank you! Reposted it in my links section!
Very kind of you to add me to your link list, thank you! I feel for you losing your links, I would hate to lose mine, it’s taken too long to collect them all! I added this excellent post of yours to my google reader shared items, and you’ve been in my blogroll for ages.
Khaly, Brilliant and compassionate piece. as always, you have a way with words.
the way we have all been treated really is a crime against humanity. Now, we know how
people with Leprosy feel. how people with MS have felt for centuries. even how people with HIV felt in the early 1980′s before someone put together that gay men in san francisco had some very similar immune profiles as some babies born to crack addicted
inner city mothers in NYC. I don’t know if XMRV will turn out to be anything or not,
but, i sadly believe that it was more middle aged white men who were worried about their own health for possible prostate cancer than any sympathy for those of us with
GWS, FMS, CFS, ME, MCSS, or Chronic Lyme feel each and every day of our lives.
After fighting for truth and simple fairness for people with these horrible illnesses
for a quarter of a century from my parents basement, my own family kicked me out,
so i can empathize with every type of person in your story. it is cruel beyond the imagination of most people. there really is an amazing world out there, and many of us tried to help out others first and foremost, and we are paying a horrible price for it.
Keep those home fires burning. some day, there just might be day of reckoning.
and i sure hope that some of us are there to see it happen….
ciao for now… TMH
Thanks for sharing your story, Tom. Maybe someday we’ll see all of this turn around. Maybe in our lifetime….?
i’ve been holding on by a thread lately. a friend sent me your blog tonight, and reading your story gave me a lot of food for thought. for 14 yrs with this illness, i’ve been so lucky to have a wonderful partner who cares for and loves me. i would not have lasted without this care, i know it. hope can be a slim thing in this isolated world.
since losing most of my former life, i’ve put most of my energy into writing poetry and doing advocacy from my couch. i’d really like to share with you a poem i wrote and edited to completion tonight, one episode in the life of a pwc.
congratulations on this wonderful, compassionate blog that i know will both support other pwc’s and open the eyes of many people. love to you. ~laura xoxooxoxox
http://moineauenfrance.blogspot.com/2010/08/psycho-babylon.html