The Parts of ME: Introduction & History: How did we get here?

It takes a long time for me to integrate new information.

And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.

Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.

But first, I need to take this chance to say:

Thank you for supporting us in our fundraising, but I no longer stand behind MEAdvocacy.org. If you’ve been following the new Facebook page you’ll notice I mentioned having some surprising news, and this was it. Then, after watching their two-minute video on a local news station which (1) failed to mention “myalgic encephalomyelitis” even once, and (2) made those diagnosed with severe “CFS” appear as if their main disability is fatigue, I had confirmation that I wanted out. I feel they’ve missed multiple opportunities to spread proper knowledge of M.E. as promised. I also disagree with them removing the commenting option on their blog without telling our members where we could go to further communicate with each other. They also archived their original donation page to hide all mention of M.E. and their goals unless you click to specifically see the archived post, which I have a problem with. I had been very hopeful based on their objectives in the beginning, and despite the organization claiming nothing has changed, myself and many others feel deceived and have zero faith in MEAdvocacy.org’s ability to use our money for those original purposes. It’s difficult to imagine a scenario in which this would suddenly turn around. However, I do not regret donating and neither should you–at the time, we thought it was the right decision, and we raised thousands for what we believed in: Look what we can do! I only wish I was in a position to start a group, myself. As for Brooke–who is doing extremely poorly at the moment, I’m sorry to say–you can read her 4-tweet-long public statement here, here, here, then here.

All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.


The Parts of M.E. (Upcoming posts)
  1. Introduction & History: How did we get here?
  2. What if it were you?
  3. Does “Post Exertional Malaise (PEM)” exist in other diseases?
  4. The IOM Committee Speaks Out
  5. The Problem with M.E.-only Advocacy, and How SEID May Help
  6. Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
  7. The ICC or CCC as an M.E. definition: Are we promoting bad science?
  8. Why do we advocate?
Some of these might be combined or further segregated as I go along. Using everything I’ve sporadically written over the past month, I’ll compile and post these hopefully, potentially once a week, starting now.

Let’s begin by clearing something up: How did we get here? The confusion between M.E. and similar states has always been a point of controversy. Today’s over-inclusion involves M.E. vs Any other disease with chronic fatigue; pre-CFS the over-inclusion was of M.E. vs. Any other disease with chronic post-viral fatigue. These illnesses have also always been thought by many to be purely psychological in origin…along with 95% of all other ailments, because that’s just what people did back then. (Hysterical wandering uterus, anyone?)

But why hasn’t M.E. moved forward with all the others, especially after decades of documented outbreaks and with so much research proving it’s an acquired disease of non-mental origin? The major denial of M.E. in both the US and UK has stemmed from people with too much power failing to examine a single patient.

McEvedy and Beard–both psychiatrists*–wrote their deplorable 1970 re-analysis of the 1955 Royal Free epidemic without doing a physical examination on a single patient, basing their feedback on data which they decided could just as easily have been hysteria…not out of some moral obligation to scrutinize data, but because *McEvedy was a psychiatry student who needed an easy paper to write for his PhD.* Professor Hooper writes of this:

“McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records. This was a source of great distress to Melvin Ramsay who carried out the first meticulous study of the Royal Free outbreak. The outcome of McEvedy’s work has been described by one of the ME/CFS charities as “the psychiatric fallacy”.” (1)

Dr. Hyde writes of his personal visit with McEvedy in 1988:

“Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked.

His reply was devastating.

He said, ‘It was an easy PhD, why not’.” (2)

While over in the US, it is well-known that the CDC did the exact same thing: In response to several 1980s M.E. outbreaks, CDC investigators looked only at patient charts–NOT actual patients–and returned to their offices to make jokes about our presumed “hysteria.” It wasn’t until the doctors attempting to manage these outbreaks took over $200,000 of their own money to pay for MRIs, that they found their patients had brain lesions indistinguishable from those found in people with AIDS; because these findings were not seen in ALL patients, they were not taken seriously, despite being consistent with myalgic encephalomyelitis. In 1988, the CDC christened the continuing outbreaks as a new illness–chronic fatigue syndrome (CFS)–effectively because three M.E. experts left the committee early due to a lack of patient information and the remaining committee’s preoccupation with Epstein-Barr Syndrome. (2)

From the criteria that developed to study CFS (which was only intended “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause” because physicians did not take the illness seriously), we have helped cultivate an old mess that still exists today: Thousands of people diagnosed with everything under the sun, whose illness is being called myalgic encephalomyelitis. This includes thousands who don’t meet even a single criterion for what was actually M.E. before the invention of CFS or the watered down post-CFS model of ME that exists in many countries today.

As you can see, this is the reason some diagnosed with CFS do have M.E., and the reason much research does still apply to M.E. even if the titles “CFS” or “ME/CFS” are used. The trick lies in checking the methodology: If patients were selected using the ICC or CCC (especially in addition to another criteria), there’s an excellent chance the results could apply to classic ME. If they were selected to meet certain additional M.E.-like criteria, such as a post-viral onset, even better. But if patients only had to meet one CFS criteria (or something equally nonsensical, such as the UK’s “NICE guidelines for CFS/ME”), proceed with caution, because this may mean the only thing the participants had in common was “a fatiguing illness.”

“Even if the truth is buried for centuries, it will eventually come out and thrive.” (Burmese Proverb)

To be continued…

a rainbow at night

(P.S. – I thought I should finally publish a Facebook page so I can be engaged with the wonderful groups and people there, and also share things that are both too long for my twitter and too short for blog posts. Watch it for updates of new posts, things relevant to ‪‎Myalgic Encephalomyelitis‬ and related diseases, ‪Lyme Disease‬ and related content, ‪Buddhism‬ and ‪spirituality‬ (theists and non-theists welcome), ‪Mindfulness‬ and other meditations, ‪‎coping‬, ‪advocacy, and more. You CAN post to the page, but things will be moderated–checked by me for inappropriate content before they go public–to keep it a safe place: Differing opinions are NOT seen as confrontational, just don’t talk down to others. :) Thank you for your “Like”!)

Explaining to Those with “ME/CFS” That They Cannot Have Both

Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):

  1. They’re just trying to cause a problem where there isn’t one.
  2. They’re “those advocacy-type people” who “make a big deal out of everything.”
  3. They just want it to sound more serious, when it’s actually the same illness.
  4. It really doesn’t matter what people call it; they just want their disease to be “special.”

Yes, I *legitimately used to think these things.*

Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how?

I recently witnessed this beautiful exchange of words that took place across several days, about what all too often happens when people try to educate others on this matter. Brooke and her friends have graciously allowed me to post their conversation on why people resist this truth so fervently, as a guide for all of our understanding.

(She would post it on her own blog, but now lacks the cognitive flexibility to organize and edit as I’ve been blessed to accomplish here over the past week. I’ve edited the quotations only to clarify the intended meaning and combat the effects of cognitive disability.)

“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Arthur Schopenhauer, German philosopher


Renee Roszkowski: “Just got called ‘disrespectful’ for trying to educate on the fact that M.E. and CFS are not the same thing and the term ME/CFS is not really a good term.”

Brooke: “I’m sorry to hear that. Unfortunately, it’s not too uncommon for (some) people diagnosed with CFS to get upset when people try to explain the difference. I can understand: They go so long not knowing what’s wrong with them, being judged, told it’s all in their heads, etc, and then a doctor finally gives them a diagnosis frequently linked together with a very real, fairly well-understood, officially recognized neurological disorder, so they want to cling to that. Being told they may not have M.E. (and most likely don’t), puts them back in the position of, “Well, then what’s wrong with me?” And that’s difficult to accept.

It’s hard for those diagnosed with CFS to accept that they *don’t* actually have a diagnosed illness, yet; that all they have is a diagnosis that says doctors don’t know what their diagnosis is; that it’s not a single, treatable illness able to be researched like so many have been led to believe (despite it having never been intended for CFS to be seen that way ¹). Finding out that they need to go back to pushing doctors to do whatever tests are necessary to find their *true* diagnosis can be extremely disheartening. But as you know, people (mis)diagnosed with CFS claiming they have M.E. doesn’t help them any more than someone with bronchitis claiming they have lung cancer would be helped. It only hurts both groups.

It’s just difficult to help people get past the initial frustration or fear-induced reaction of disbelief, and help them move on to the idea of, “Hey, if I don’t actually have M.E., there’s a decent chance whatever I *do* have has at least some level of treatment available–maybe even a cure.” It’s difficult to go back to pushing for answers, but it is oh-so-worth-it for those who finally find them, and find some level of relief from their symptoms!

The more people spread the truth, the more it helps all of us.”

Renee: “I can totally understand, having been diagnosed with CFS, but actually having Chronic Epstein-Barr Virus, endometriosis, probable POTS (not yet diagnosed but I meet the diagnostic criteria), and potentially having a thyroid disorder, ALL of which have fatigue as a major symptom. I totally understand.”

Brooke: “Yeah, a lot of people diagnosed with CFS also have other diagnoses, which is kind of crazy if those other diagnoses can explain their fatigue, because a requirement for a CFS diagnosis is that your fatigue is not explained by any other illness ² (again differing from M.E., which, like any other neurological illness, you can have even if you also have other conditions causing similar symptoms). Why do doctors diagnose people with CFS if their symptoms are explained by other (testable) conditions? Not only is that medically incorrect/[completely against the criteria for diagnosis], it just doesn’t make sense to me. Diagnosing these individuals with CFS [when other conditions explain their symptoms] then saying it’s the same as M.E., is like doctors issuing a statement that everybody with a condition that causes any form of fatigue will now also be diagnosed with cancer.

Jennifer Phillips: “What people mean is too often not what actually gets heard. ‘CFS is not a real diagnosis’ can all too easily get heard as ‘CFS is not a real disease and you’re making up how sick you are.’ 

You need to approach it like this:

“You probably know that CFS captures a lot of different diseases that doctors just don’t know how to diagnose, right? People with CFS are sick, but not all in the same way. But M.E. has a distinct diagnosis and known cause. So if you’ve been diagnosed with CFS, you may or may not have M.E., depending on if the doctors have done these diagnostic tests or not. If you don’t have neurological problems, you probably do not have ME. This does not mean you are not sick, but that the knowledge about M.E. likely can’t help you and chances are your doctors need to keep figuring out what your CFS really is from.

Brooke: “That’s generally how I approach it when explaining to people who don’t already know all this stuff. I’m a bit more blunt (or rather, I just don’t take the time/energy to be extra careful in wording) with people who I know already get it and have the same views, but I agree, when educating you do have to be careful not to come across as saying the person is not sick. Most people diagnosed with CFS have heard that too much in their lives, and will be quick to get defensive–I know, because at one point I, too, was (mis)diagnosed with CFS. The vast majority of people with CFS don’t have M.E., so in a way I ‘lucked out’ once I had the CFS diagnosis, in that it wasn’t too hard to find the accurate diagnosis from there (with the proper tests to correctly diagnose it). But I do think most people with CFS have at least one physical illness of some kind. Even for those whose illness is psychiatric (for example, one study found over 30% of individuals with Major Depression are misdiagnosed with CFS ³), that’s nothing to look down on. There are often very real chemical/physical causes behind mental illness, too. They simply need to find the truth, whatever their true diagnosis is, so they can look for appropriate treatments.

Renee: “I told them that I have CFS and a friend with ME, so I don’t think I sounded dismissive.”

Brooke:One of the issues I see all too often is that many CFS patients actually *don’t know* that CFS includes people with lots of different illnesses. They’ve actually been told by their doctors and others that CFS is one single illness (“otherwise, why/how would anyone research it?”) and that “it” is synonymous with ME. They think that as long as you have unexplained fatigue lasting six months or longer, you have ME. Getting people to understand that (1) there is no single “it” when it comes to CFS, (2) that ME is something *entirely* different (most M.E. patients don’t even list “feeling fatigued” as a major symptom; our fatigue is at a cellular level and can contribute to the transient paralysis many of us experience), and (3) that *every* diagnosis of CFS is a misdiagnosis [because CFS is not a single disease but a diagnosis given when you have unexplained fatigue, nowadays particularly when you have unexplained fatigue with a post-exertional crash] – that can be a real challenge.”

Jennifer: “Which is why I phrase that point up front, as something they either know or don’t know, *not* something open to debate or telling them what to believe. Like you said, that confusion is why you want to educate people.”

Richard Heckart: “A closed mind is worse than an empty one. That’s my new saying from now on. Pass it on.”


To additionally put this in perspective for you:

It’d be like if the government suddenly stopped diagnosing Multiple Sclerosis and started calling all new cases “Weak Leg Syndrome,” deciding that the primary symptom of this new syndrome is weak legs. Eventually it gets dubbed “MS/Weak Leg Syndrome.” And now they’re saying that all you have to do to help weak leg syndrome is exercise because some people got better that way; they think other people simply have weak legs because they’re too depressed to move. Oh, and because MS = Weak Leg Syndrome now, no one ever gets diagnosed with actual MS anymore, so people with actual MS never get the correct life-saving treatment, therefore everyone who actually has Multiple Sclerosis, dies. Sounds crazy, right? Can you see this actually happening with any other well-known disease like this? Not at all. But that’s what happened to us.

So I hope people understand we are not just trying to nag you, or get validation for “our special disease” while leaving out everyone else. This isn’t a club anyone wants to be in. We recognize completely that everyone is suffering because of this international confusion, and because you can’t reliably study anything that isn’t clearly defined, no matter how many times they rename it or move around the same criteria, CFS still won’t be its own disease. There was no need to create CFIDS/CFS/SEID when the illness occurring in the 1980s epidemics already had diagnostic criteria, already had a known cause, and already had a name: Myalgic Encephalomyelitis. But instead of continuing to use it, the government created something entirely different, and all government-funded research on people with classic M.E. abruptly stopped. If you get diagnosed with CFS but don’t meet the diagnosis for the original illness (M.E.), it means you have something else that your doctors haven’t yet identified, ranging from the potentially treatable to the potentially fatal. So please continue to educate yourselves, *and* your doctors, because they are not omnipotent gods incapable of mistakes. There are also things you can do to slow down the progression of M.E., if you do indeed have it.

I have a friend in the UK who’s been diagnosed with “ME/CFS” for several years and she hasn’t even been given an MRI–yet she’s in a wheelchair, getting worse, and shows several defining symptoms of MS… Or maybe she just has Weak Leg Syndrome and needs to walk it off…

a rainbow at night


Resources for M.E. and CFS

Note: Because of thirty years of confusion, some information labeled under CFS may be relevant to M.E., since some researchers use additional characteristics and biomarkers to select for different subsets of patients, for example, selecting the most severely affected (which through no coincidence, tend to be those with M.E., often due to years of being told to exercise when this leads to disease progression and premature death).

(1) Holmes, G. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 387-387. “We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies, and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.
(2) The IOM recommended on Tuesday, February 10, 2015, that this requirement be lifted, but please bear in mind this has not yet been implemented by the CDC or become customary for doctors; diagnoses of CFS are still and have always been made on the basis of unexplained fatigue, whereby any other diagnosis is supposed to disqualify you from having CFS, because CFS is a diagnosis of exclusion, i.e., not a specific illness but a category people are put in when doctors cannot explain your fatigue and other symptoms, even if your symptom of fatigue is post-exertional fatigue.
(3) Jason et al. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. (2008). Journal of Disability Policy Studies, 20(2), 93-100. Almost 2 of every 5 people diagnosed with Major Depression meet all the criteria for CFS, too. “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.”

It’s not easy, it’s just Now.

The Nutcracker

“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)

When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.

If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.

I’m not completely certain of the point for me writing this… I know the things I lived, I don’t need further documentation. I don’t imagine they’d be all that interesting to anyone else, in the same way your baby photos are only important to you, and slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.

Even if I were to sit here and explain how none of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me (and that for too many years I gave to myself, as well), because “sick people” don’t live life, they wait until they’re not so sick to start enjoying themselves again, right? They wait until they’re better, don’t they…? (Not so much.)

No, people only hear what they want to hear, and until they’re ready to change, all of it only looks like “of course YOU did it, you [insert excuse here for why it’s easier for everyone else besides you].” Or some want to be spoonfed the exact steps in order to do only as much work as is absolutely necessary. To quote inspirational speaker, minister, and author Iyanla Vanzant, “You must be willing to do the work.”

And yet more than a few people said to me during a week’s worth of time, that they wished something in their life was as easy as I seem to have it………………………..

I couldn’t help but laugh.

Because nothing–absolutely nothing–has come easy for me. No one comes to acquire these traits that make life seem “easy,” because life actually WAS easy. No, they arise from hardship, and those currently living in the troughs are knee-deep in the circumstances that produce any qualities in me you claim to admire.

What one might perceive as my ease of living is actually my choice to experience it as such, not any representation of the actual work required. I’ve metaphorically crossed over mountains to get to this place from where I was, because I was not raised to be peaceful. (Please read that. Okay?)

The “of course it’s easy for you” thing is also troubling because it’s an unconscious confession of (fear) self-sabotage, the excuses you’re telling yourself for why you can’t have what someone else has. It’s giving yourself an “out” based on something external you’re unable to control or something internal you perceive yourself not to have, helping foster the belief that your situation is out of your hands, so why bother? It’s a destructive twin of “I’ll be happy when…”

You can have a radically different life without changing a single external circumstance, because the only common denominator in your entire existence, is You.

Our lives aren’t defined by only the big decisions, goals, and occurrences. However much impact they have on the rest of our days, those major game-changers are few and far between. Society tells us from the day we step outside that your life is supposed to be about getting from point A to point B, and to pass your days filling in the rest with your to-do list of how to accomplish that. But that’s incorrect. That is NOT all life has to offer, and when you finally get to all those point B’s, you’re going to realize that. So listen to all of us “hippies” who are trying to get your attention before then:

Life is made up of all the little moments you encounter between those perceived checkpoints. It’s all the smaller things you do day in, and day out, that make up the most of your life and help determine your happiness.

And I guess that’s why it doesn’t matter too much to me anymore to explain all that I’ve accomPLISHED even with the accomPLICE of disease… Because the gift of those experiences will reside within me, always. And although reaching those goals was inexplicably amazing, it’s the process of living and thinking that helped me manifest them at all, which holds the most value in the long run. And that’s the part I really want to share with this blog.

If you want things to be easier, it doesn’t start with changing your circumstances. Because you can only manipulate your circumstances to the extent that you realize what is really yours to control. And that all starts with manipulating you.

 

a rainbow at night

The Killer in the Crowd

♪ "Who is the betrayer, who's the killer in the crowd The one who creeps in corridors and doesn't make a sound." ♫

“Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

All right. Something I never considered the IVIG would do (and luckily so, or else I might not have went forward with it!) was that it would so very obviously do the one thing I’ve avoided doing at all costs for the past two years: Wake up my immune system. Because that would re-activate the bartonella like it has every time in the past since I contracted this parasitic-bacteria.

And that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog for the past four years, but this post from January 2012 might help a little. I realized a year later my symptoms were re-emerging, with my bloodwork also showing increasing signs. I did everything I could not to take anything immune-stimulating and DEFINITELY not any antibiotics (which are extremely immune-stimulating), and because of this, it remained somewhat latent. I know from past experience that activating my immune system in any way triggers it to attempt fighting infections wherever they exist, despite said immune system not having everything it needs to actually fight. To make it acutely aware of bartonella’s existence would be to also initiate my imminent decline. The first time this happened, I was bedbound within eight months; the next time, within just four months.

Well, all symptoms that occurred periodically since the bartonella relapsed are once again emerging VERY reliably every 5-6 days (usually 5, as is the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before it fades as quickly as it arrived; the worser “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Its reliability started five days after my first infusion in October, and has continued ever since.

Some part of me cannot believe this is happening again; the other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection. I’ll try to write more on that, soon.

The worst flares, the ones that scare me, happen right before my infusions. I get IVIG every four weeks (right now) and the effects only last three weeks… So the fourth week, my immune system has fallen back to its normal deficient state, which means I am at mercy of an infection with little to give it pause. I discussed this with my immunologist today and he upped my dose; we’ll see with my next infusion (which will take place from my own bed in a couple weeks) if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than the office, and wasn’t even sure if I should go. But two minutes after praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. I was hydrated, for one, but I also no longer felt like I was being mauled from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably, then maybe several months from now my new-and-improved immune system (thanks to literally thousands, upon thousands, upon thousands of donors) can finally overthrow this bartonella (and the other, less-rapidly-progressive bugs), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path. I regret nothing.

a rainbow at night

There’s this friend I have…

I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important and suggest they prioritize those above the rest. I’ve called and written for them so they can get any procedure possible done from home, so they won’t have to deal with the physical exhaustion of leaving the house “just” for uncomfortable treatments, or the mental burden of being surrounded by a medical establishment that has traumatized them over the years.

I’ve helped them find clothes that were of soft fabric to help with neuropathy; helped strategize their budget to find money for important purchases that make their life easier, like an overbed desk, a smartphone to stay connected to friends that only exist outside their city, and a stereo that uses bluetooth so they can listen to anything instantly using their phone as the remote. I’ve introduced them to mindfulness and stressed how important it is to take care of their inner world, almost more so than their outer body, because they can’t always control their circumstances, their disease, or natural physical changes, but they can always decide how to think about them.

I’ve helped them make extremely difficult decisions about their treatment and supported them endlessly in whatever they had to choose, trusting that only they know what’s right for them, and that no matter what, it will be the best for them and subsequently everyone around them, including me. I’ve shared with them any and all of my collective wisdom to help make their travels on this earth a little easier, hopefully none more difficult than they must be. And I’ve done all this and more because I love them and want their life to be the best possible. I’m already so proud of them, for things sometimes I wonder if they even realize.

I’m proud of them for getting out of bed whenever they have the option. I’m proud of them for not giving up on life after it turned out so drastically different from their plans. I’m proud of them for continuing to try new things whenever they have the capacity, and for acknowledging, accepting, and loving themselves whenever they DON’T have it. I’m proud of them for taking care of their body even though that can be a full-time job in itself, and they’re disabled. I’m proud of them for continuing to do the things they love, even though they had to learn to participate in new ways; I think that’s so amazing. I’m proud of them for reaching out to others even when not many reached out to them. And I’m very proud of them for letting go of the ones who never reached out to them, because I’ve seen that it left them more energy to spend on the people who truly cherish them. I’m proud of them for not settling for anything less than authenticity.

And once the time comes–because it will–for them to move forward to the next phase of their existence? Don’t be fooled by the media or even friends and family: They’re not losing any battle against disease. They’ll simply be finished here. To paraphrase Eckhart Tolle: You don’t “have” a life, you ARE life. They are Life. I am Life. You are Life Itself, and you cannot lose something that you are. And the friend I mentioned, is myself.

a rainbow at night