Credit: Jacquelyn Martin
I continue to struggle with the crash from hell, but Joe Landson has graciously stepped up to provide a guest post. His chance encounter on the streets of Washington, DC gave him a powerful insight into our own advocacy situation.
One Sunday in early January, I mustered the energy to take my mother to the National Gallery of Art in Washington, DC, just a few blocks from the Capitol Dome. We walked past a steam grate with the usual collection of homeless men gathering warmth from it. However, one man was different, and stood out. First, he was white. Second, he was very young. Third and most oddly, he made direct eye contact with me, following my movement as I walked past holding an umbrella over my mother. The moment stuck with me, but what could I do? My first duty was to my mom.
The next morning I saw this article about him. For those of you who don’t have time to read the article, an Associated Press journalist photographed the very same man for a story about the cold snap here in the mid-Atlantic. While scanning the news, a friend of friend recognized the young man’s published photo, and alerted his parents. They in turn brought him home to upstate New York. He had disappeared from their house on New Year’s Day.
Yes, it is the same man as the one I saw. I recognized him instantly in the article photo, and the Federal Trade Commission building is directly across from the National Gallery of Art, where my mother and I went.
At first, I couldn’t help but wonder at how unlikely and lucky this rescue had been. Then I wondered if his rescue would ‘take’, if whatever compelled him to leave would be resolved, or if he would be back out on the street again in a month or three. And then after that, I wondered if he was us.
We with ME/CFS are homeless patients with an orphan illness. No medical specialty has claimed us. We have no medical authority to trust. To casual observers, we are obviously lazy whiners; to those paying attention, we are an unsolved mystery. In any case, we are waiting on a steam grate for some random investigator to publicize an image of us that will produce a shock of recognition for the awful disease we know we have.
We are waiting for our image to be recognized, because it’s hard to believe that anything we say makes any difference. I certainly get that feeling from the many meetings I have attended. Certainly nothing the homeless man said in a news interview could have mattered to the journalist, even if she wanted to help him. He was, quite literally, background for a story. But publishing his photograph possibly helped more than anything else she could have done.
It has been said before: 80 percent of success is showing up. So I’m beginning to wonder if all we can do is show up and wait – in other words, the two things we are least able to do. We desperately need help now if we are to recover anything resembling lives for ourselves. We only survive the endless waiting by NOT showing up – by skipping out on work, family duties and events, and virtually every aspect of public life.
It is very, very hard for most of us to show up and be seen: By doctors who don’t get it. By disability adjudicators who don’t believe us. By government officials with no sympathy. We meet cynical contempt everywhere, over and over again. Yet I’m becoming convinced that being seen, like formerly homeless Mr. Simmons was seen online, is the only hope for us, the only effective thing we can do. We can speak all we wish, to demand attention and more research, and we have at least partly succeeded here. However our words are powerless to influence the medical ‘facts’, as the licensed fact-makers see them. To the doctors and researchers, we can only mutely present ourselves for observation.
As frustrating as it seems, we never know when what we say or our presence may trigger a change, small or large. In fact, it already has (small). But if we aren’t persistently visible and vocal, then we make ourselves as invisible as the disease.
Joe: What a great depiction of our lives and a moving story. Thanks so much!
Well said Joe. If just showing up is 80% of our success, then being present without hiding the severity of whatsoever state we exist with needs to be present and apparent in great numbers on their doorsteps. If the remaining 20% is granted for us to be vocal, then to be “fully heard” it is going to take 5 ill PwME individuals to get 100% of just one well stated message seen and heard as a demonstration to get their attention. Perhaps one well-written public statement needs to be read in the “punitive” three minutes by five PwME. This might be an annoying demonstration that says see us, we are not invisible before you this day. We are not a figment of your job description and imagination; I am not ignorant, I am not a threat to the abuse of your HHS power or intelligence, but I can not perform like a lab monkey just because you made a strategic last minute announced date for a Public Meeting expecting me to act like I am healthy and capable to present for the allotted 3-minutes you feel is sufficient. Their denial is our demise! Your statements are very well stated as usual.
Beautifully written, Joe. Thank you for sharing
Nicely written.
On my worst days, all I can do is lay down but I’ve often thought what would happen if I laid down in my Congressman’s office locally or DC (or any equivalent official) instead of in my bed? What if they had to step over me to get to work? What if they told me to “wait” and I said “fine but I’m waiting here until you see me in person and act”? What if I imitated Cindy Sheehan, who followed George Bush around, and “haunted” officials until they responded?
A few years ago, I read about the Igbo women of Nigeria and their early 20th century campaign to get treated fairly by the British colonizing government. The women acted nonviolently but they would gather and follow officials whom they opposed for extended periods. We’re talking about 10,000 women here following one person potentially and they would rotate depending on where the official went. Sometimes, they followed silently, other times they would sing. This is a short account on the Internet:
http://nvdatabase.swarthmore.edu/content/igbo-women-campaign-rights-womens-war-nigeria-1929
Also, your post reminds me of a book written by Bill Gates Sr., Bill Gate’s father. Senior is a prominent lawyer in Seattle and also a regular philanthropist (even before his son got mega-rich via Microsoft) so you can sort of see where Junior got his values. He now helps Gates run their Foundation. Haven’t read it yet but it’s called “Showing Up for Life.”
Thanks, Joe. Well said, as usual. If only; I would love to just be able to be there in my wheelchair, and sit and wait for action. I am sure thousands would love to be able to do that.
All the more reason why I am so grateful for those of you who do show up, who do speak on my behalf, who do make us all visible.
Too bad the media doesn’t find us as interesting as this homeless man.
So poignant. Sad. Real. Validating.
Thanks, Joe, for your eloquence.
Beautiful, Joe.
Beautifully written with great insight. Thank you, Joe, for showing up at all the meetings.
Thank you for all the lovely comments! I’m convinced showing up can mean other things besides going to the silly meetings. Just be visible in any way you can, until we get recognized…
Thank you, Joe. For some time I’ve been thinking about how people only see us when we’re well enough to be out in the world, not the preponderance of days in our pajamas or sweats, unshowered, hair unbrushed, weak voice, the effort it takes to complete sentences. If people don’t literally see the illness at work, how will they care enough to help the cause? Being part of our culture, we prefer the nice pictures of us on Facebook, holiday cards, etc., but it adds to a disconnect about what’s at work with the illness. At the same time, social life (even via things like Facebook) is also a welcome distraction from chronic illness, so I don’t necessarily want to gum up that outlet with photos of me forlornly looking into a camera or slumped over my laptop. I would do all this though if there were a way to harness our numbers for a virtual lay in or something….
Dear Joe,
You have opened a place I rarely go as tears stream down my face. It is so painful knowing of these patients suffering and not being able to do anything. You also validate how lost I have felt at times as a patient and someone trying to make a difference. My experience of living with a chronic disease has been life altering. I can’t comprehend how humans allow others to suffer so cruelly. I have heard the same tragic story about our government since I was a child. This is one of my family’s biggest reasons we became involved in advocacy efforts many years ago. Thank you Joe for showing up. Thank you Jenni for allowing Joe to guest post here. Thank you for inspiring me to keep up the good fight! Some day soon we will be seen and listened to. I believe momentum is building everyday in patients hearts and there is more research than ever before. We will get there together.
Beautiful post, Joe. Thank you for sharing with us.
Thanks for this, Joe. Good points, and well told.
The larger meaning of visibility for our cause (as eloquently depicted in Joe’s piece) aside, aka as a total tangent, I think our actual visibility is a conundrum.
It’s human nature for us to want to look our best in front of a camera for a photo or video that many people will see. Sure, some of it may be out of vanity, but it’s also because we want to be seen and treated with respect, i.e., no less human and worthy of respect as a healthy person; we can’t be blamed for not wanting to be seen with pity, fear, or even a subconscious disgust, for being scarily sick.
Maybe we do need to make people feel uncomfortable enough to help us (I mean in terms of the visible cues of looking as sick as we are), at least as far as the government is concerned. But healthy private sector people who contribute money and time to illnesses are usually compelled by fuzzier emotions that evoke sympathy and altruism and a sense of doing good rather than feelings of pity or fear. Sympathetic celebrities, or other likable and often attractive poster people are involved in the PR campaigns for fundraisers for various diseases that raise a lot of money for research. It seems like currently, we don’t remotely fit in either category (super scary or sympathetic).
Take the homeless man in this news story: who doesn’t have the instinct to look away and refrain from really “seeing” a homeless person on their subway ride home (or refrain from taking a picture of them for that matter), even though we may do so out of respect for their privacy?
Isn’t there a likelihood that it was because this particular young man was young, white, and an unlikely homeless person that he caught the journalist’s attention and chose to photograph him for her story instead of a less sympathetic-looking homeless person? Wasn’t this the exception to the story of most homeless people, who don’t have caring families who are looking for them?
I wanted to reply to Jane’s comment about about homeless people. Her statements about this man was photographed by the journalist were striking and I don’t disagree with them but I want to dispel a possible myth about homeless people, having worked with them as a volunteer pre-CFS.
The majority of homeless people (70%) are “temporarily homeless” – usually less than a year — and most often due to unexpected crises — e.g. job loss, bankruptcy due to a medical illness, etc. Many are families and do have people who care for them but how many families have room for another family in their house or can sustain another family for several months? Oftentimes, when this group ends up in a shelter, it’s because they’ve already tried other living situations, e.g. motels, staying with friends, etc. This group has also increased with the recession.
Maybe not this man’s situation but younger homeless people are often running away from abusive family situations or, conversely, thrown out by parents because they happen to be different — for example, my high school classmate, a brilliant and popular student, was thrown out because he was gay. Fortunately, his best friend’s parents took him in and he graduated without any problems. He grew up to become a cancer researcher.
The remaining 30% are more the “chronically homeless” — what people think of when they think of the homeless. This group may have untreated/ undertreated mental illness, substance abuse issues, or personality disorders. I don’t separate them out because they deserve less help but rather that the type of help they need is often different from the other 70%.
Finally, if people don’t know this, about half of bankruptcies in the US are due to medical illness — not because someone didn’t work hard enough or was a spendthrift. Several years ago, someone wrote a column about people with CFS who were homeless because of their medical situation. Applying for and getting approved for help can take months – years.
Pride and dignity when we are out in the world–as that is what is still @ our core–and we want to look and present at our best — even if it is in those few snapshots out in the world. If we were ‘depressed’ vs. ME/CFS–we wouldn’t give a care about what we might look like. Soooo—that speaks volumes!!
But isn’t speaking up a way of being seen? Like being interviewed for media, creating much-needed attention for ME/CFS? (something often appreciated by the few researchers who are tirelessly working for us)
Re media and sharing our voices – This also depends upon if our voices are allowed to be heard.
When I first became ill and was extremely ill, I was blackballed/shunned by the (socialized) system I’m in, essentially losing all functioning legal rights regarding access to care, medicine, and even the bureaucratic process to report such negligence/abuse.
As many know, you’re turned into a non-person, non-lifeform even. Dogs literally have better access to better care (including medication and medical equipment). And welfare (as in humane treatment) for dogs is better enforced than that for sick and/or disabled humans.
In my quest for help, I contacted numerous journalists (local journalists) in the country where I was living, as well as in my native country, and I was only ignored. When others – experiencing similar treatment – implored the highest level of government for help, these ME patients were told that their numbers (in the tens of thousands) were not significant enough to warrant assistance/intervention.
Additionally, some people who posted on the recent “NPR” CFS story were censored. My own comments have been removed or censored from recent ME/CFS articles on “Liberty Voice.” The “Buzzfeed” CFS story was blocked on Facebook, once it had gained significant coverage.
Even re the IOM ME/CFS project, IOM states that when the public submits testimony for the “public” access file that individuals should not discuss personal health. I can’t see this as anything but more censorship and an abuse of our alleged freedom of speech.
Additionally – and to my understanding – the public was not allowed to present via audio and/or audio-visual means, though invited speakers were. Compare this to the most-recent IOM Gulf War text which encourages telemental health programs and virtual meetings between patients and nurses/doctors/etc. and agencies such as VA who have adopted such methods, as additionally promoted by and in contract with Verizon.
Again re public comment, out of approxiamately 1 million in the US (and 17 million people worldwide), 15 individuals (if I remember correctly) were allowed to present in person for three minutes each – and this represented “public” contribution to the process, aside from invited speakers.
And while IOM would likely counter this by saying that the public can submit info to a public access file (which to my understanding is required by law), there is a fee to access this file. Some individuals have additionally claimed that the info they sent is missing from the public access file.
And while at least one IOM webpage boasts of IOM’s Facebook, Twitter, etc. technological and social media capibilities, IOM’s so-called public access file cannot be accessed online. It’s snail-mailed on a CD. (Why don’t they just scribble it on a scroll and nail it on their front door?)
End of rant.
I’m *always* thankful for those who speak so well and who so generously give their time on behalf of the ME community – and who’ve also carved a pathway (through blogs for example) where they encourage others to share their voices. I’m just very frustrated that so many voices are silenced/censored in the larger public sphere. The sick/disabled often seem to be orphans of the social justice movement as well.
P.S. Many (all?) IOM texts/reports can be read for free online. – But not public testimony, required by law to be placed in a public access file.
To the topic of speaking out/visibility/being heard—I have just checked into my Hotmail account–haven’t been there for several days–only to find out that Microsoft has temporatily BLOCKED my Hotmail e-account due to ‘noticing some unusual activity.’ That activity is ALL to Facebook reposts and Twitter reposts — ALL re ME/CFS . . . !!!
Thank you for your article, Joe.
Thank you, Ren, for laying out the ‘two sides’ of open / public communications re ME/CFS.
@Ess
That perspective, Ess, makes me feel better about choosing a good photo over an accurate one. Thank you.
This makes me think that I’m lucky to have had a physician who years ago recognized ME/CFS, even though I’ve gone through the school of hard knocks on severe reactions to medications so that there are few I can take.
However, with the recent broken arm I went to a hospital’s urgent center near my house, and thw two doctors whom I saw looked at me like I had two heads when I said I had CFS. No recognition, no anything. When they asked why I fell, I said I didn’t feel well, that I felt exhausted and week and knew I should not have gone outside even before I left the building. Do they just not understand that someone feels awful? Haven’t they even had the flu?
Anyway, I get the feelings of being treated as if invisible.
I love the idea of public comments being scribbled on a scroll and nailed to the front door — true for the IOM, HHS, CDC, etc. Can we do this as an action? It’s clever and maybe would draw press. That is, if we had energy to go to a government building to do this.
Carollynn your comment(February 11th, 2014 at 13:16) about a virtual lay in, oh my, I best not have water in my mouth ever, when I read your posts. That image, it cracked me up. Oh I did so need to laugh, and the computer got a bath 🙂
Joe what a beautifully written and insightful story! Thought provoking. Thank You So Much!
Very well written.
Yes Joe,we sit, in the offices of yes we present ourselves, mute, waiting. I do it for my grandchildren who will have this. For the people who don’t have it yet. For the people who are gone because of it. Look, I am still here, here I am. Another unproductive appt. of who knows how many days weeks to recover. Yes, we show up. We are all heroes every single day.
Anonymous, I concur with everything you said. That IS the reality of it. I was out once not to long ago about a year ago..lol. To the pharmacy. A lady was there, outside, in a wheelchair, shoulders hunched, people walking by. She was looking everywhere but on someone’s face. I stopped, just on instinct. M.E. gives you that. We chatted for a bit, all about her 🙂 Bits of this and that. Her care giver leaving her, her dog she couldn’t wait to get home to You know she was sitting straighter, looking right at me as I said, so you need help to the bus? No, she said, they will come right here in parking lot for me. I should get in there, I said, have a beautiful day! We smiled and waved. I don’t get to do that, hardly ever. Engage someone in conversation. I forget over time that I can. But, I was just so happy that day to be “free” for (an hour, a day, two?) I wanted to pass the Happy around.
This is a very lovely place to be. Right here right now. Un-mute, free, expressing, feeling, comprehending. Lovely indeed. Carol Ann