Monday, June 21, 2010

Illness & Invisibility

Myalgic encephalomyelitis (ME), sometimes inaccurately referred to as chronic fatigue syndrome (CFS), is a serious, complex and multi-systemic disease.  It is often included in the realm of invisible illnesses because, for the most part, patients don't actually look sick.

While the symptom severity of ME varies from patient to patient, the disability levels of those more seriously afflicted have been compared to patients with MS, heart failure, cancer or even late-stage AIDS. Yet, to the unobservant eye, even the sickest of patients who are wheelchair or bed-bound will still appear otherwise healthy.  At least, we appear healthier than we really are.

This, of course, can create misunderstanding, and leaves those who are perhaps less educated about the illness to erroneously assume it's not as serious as it is. The inappropriate use of and association with the name chronic fatigue syndrome further adds to this misunderstanding by belittling the illness and making it sound like we are all just a little extra sleepy. As a result, some patients can actually feel embarrassed to tell people that they have ME and will instead attempt to conceal it from others, only informing their closest friends and family members.

ME is an invisible illness in other ways as well. One of the most debilitating symptoms of this disease is what is called post exertional malaise -- a worsening of symptoms with even the most minor exertion. So, while some ME sufferers may look perfectly normal one day when engaging in some kind of activity, the strain of that activity could end up leaving the person home/bed-bound, and thus invisible, for days, weeks or even months.

In addition, it has been estimated that 25% of ME patients are fully disabled from the disease, and many of those (like myself) are homebound or completely bedridden for years on end. As such, no one sees or hears us. Often, no one beyond our immediate family and friends even knows about us.

To compound this even further, there's also the invisibility that arises from society's response to chronic illness in general. Society typically doesn't look all that well upon an illness that doesn't ultimately resolve or improve. With all of the advancements and high success rates found in modern medicine, there is little patience for an illness that has no clear answers.

There also tends to be a common-held belief within the general public that we are in control of our own health and that, with enough determination, there's nothing that can't be overcome. While this idea can be inspiring and empowering, it can also leave the sick person feeling as though they are to blame for being ill, or that somehow they are doing something wrong -- even if there are no viable treatments available to them. People generally want to hear that you are triumphing over disease, not being beaten by it. They want to hear success stories. The sick person is very keenly aware of this, and many will thus (at least to some degree) keep their suffering to themselves.

Furthermore, the sick will often keep silent on the details of their illness because they don't want to burden their loved ones, nor cause them to feel any discomfort or pain as a result of their own suffering. They want to appear strong, and they don't want to be seen as a nuisance.

Even now after having become bedbound from ME, I find I still often spend a great deal of energy trying to hide the severity of my illness from others as much as possible. I don't want people to worry or feel any discomfort. I don't want to be "that" person -- the type who is always talking about her illness, even though it has become such an all-encompassing part of my life. I want people to see me for me, not my illness. And sometimes I don't know any other way to ensure that is the case without trying to hide, as much as I can, that I'm feeling as sick as I am.

I am writing today of this latter form of invisibility because I've been thinking about it quite a bit after having recently stumbled upon a blog called Notes from Nonsuch, written by a woman named Sara who loves to garden. She also has cancer. Apparently, it's terminal.

In one particular blog entry [now removed], she writes directly and poignantly about how society in general does not deal with illness or death very well. "There is a great silence about the subject, " she says, "and a great silence imposed on the dying."

Sara goes on to describe how, as with sickness in general, it is oftentimes the dying who comfort the healthy, rather than the other way around. They tend to pretend all is fine, tell everyone not to worry, and silence their fears and complaints of bodily pain -- all this to make sure those around them suffer as little as possible. Meanwhile, this can make the patient feel as though they are ultimately dealing with their struggle largely on their own.

Sara also points out that many people will prefer to keep their support at a fairly comfortable distance. Family and friends will of course offer well-intentioned cards, flowers and teddy bears, as well as promises that they will be in their thoughts. And while this is all no doubt generous and appreciated, what many of the dying really yearn for is someone to be fully present with them. They yearn for someone to listen quietly to their story and allow them to express all the fear and pain of their experiences, and to hold their hand through the final stages of the journey.

In today's society, however, the dying are often instead sent to nursing homes and hospices, where it is not uncommon for them to end up dying alone.

Sara talks about how this also applies to some degree to the chronically ill. She writes:

Let me discuss chronic illness for a moment. As a society we don’t tolerate it very well. Our collective attention span for someone who is ill lasts about two weeks... After a while, and only a relatively short while, people grow bored with you not getting any better and just drift off. Phone calls stop. Visits stop. Emails stop. ...Eyes glaze when you say you are still not feeling well. Who needs perpetual bad news?

...The end result is, of course, that the sick simply stop telling people how bad they feel. They repress all their physical and emotional pain, because they’ve got the message loud and clear.

I am tremendously fortunate to have wonderful and loving parents, an absolutely amazing fiance, and some loyal and life-long friends who offer me support, comfort and assistance on a regular (if not daily) basis. I am greatly indebted to them for their kindness and compassion throughout these many years. But I, too, have regretfully seen many friends slowly either distance themselves or disappear entirely. While each will have their own various reasons for this (none for which I really blame them), I think much of it has to do with the general unease people feel about chronic illness. As Sara writes, "Modern attention spans for the chronically ill are horribly short, probably because chronic or terminal illness in today’s society is horribly tedious. Tedious, because we are all so uncomfortable with it."

I think part of this discomfort is that people don't often know what they are supposed to do to help, and they don't like feeling helpless. ME also brings with it more challenges and complications in this regard than most other illnesses, as we often can't tolerate social visits anyway. It can be hard for some of us to even write or talk on the phone.  As a result, the interaction that comes from someone's well-intentioned assistance can  sometimes actually be more taxing than helpful.  Thus, in the case of ME, some people may keep a distance quite simply because they assume (correctly or incorrectly) that it's in the best interest of the patient.

And then there's the fact that people just don't know what to say after awhile. I recently read (or listened to the audio version of) the book Naked by David Sedaris. In it, he describes how illness affected his relationship with his mother after she'd been diagnosed with cancer:

I'd always been afraid of sick people, and so had my mother. It wasn’t that we feared catching their brain aneurysm or accidentally ripping out their IV.  I think it was their fortitude that frightened us. Sick people reminded us not of what we had, but of what we lacked. Everything we said sounded petty and insignificant; our complaints paled in the face of theirs, and without our complaints, there was nothing to say.  My mother and I had been fine over the telephone, but now, face to face, the rules had changed. If she were to complain, she'd risk being seen as a sick complainer, the worst kind of all. If I were to do it, I might come off sounding even more selfish than I actually was. This sudden turn of events had robbed us of our common language, leaving us to exchange the same innocuous pleasantries we'd always made fun of. I wanted to stop it and so, I think, did she. But neither of us knew how.

There's no doubt that illness is awkward. It changes the dynamics of relationships, and it reminds others of just how fragile life truly is. And perhaps that's really the core of the discomfort: the idea that our health, and thus our lives, could be turned upside down in a blink of an eye, and there may be very little we could do about it. And that leads to some uncomfortable questions: Why one person and not another? What if that happened to me? Could I handle it? Could I cope?

I've had people tell me that, were they in my shoes, they don't think they could find it in themselves to go on. But the thing is, I wouldn't have thought I could handle this either. And yet, here I am. Sick or healthy, our lives are our lives and we all do what we can to deal with the hand that was dealt to us. When illness strikes, most of us find out we are a lot stronger than we ever realized.

I think the important thing to remember when someone falls ill is that they are the same person they always were. Their bodies may have declined, but they themselves remain essentially the same. In the end, the only difference between a healthy person and a sick person is that one just happened to be a bit less fortunate than the other.

Ultimately, I believe what the sick really want is merely to be recognized. We don't want to be known for being sick, but we want to be acknowledged that we are indeed fighting the fight, and we are not alone.

We want some way to be visible again.

"The Sick Child" by Edvard Munch

Tuesday, June 8, 2010

Determined Spirits

In this month's Life Skills Magazine, there is a special "bumper" edition which is devoted and dedicated to all those determined spirits who suffer from ME/CFS/CFIDS.

I feel incredibly honored to have been invited to participate in this wonderful opportunity to help raise awareness. My submission is called Recognition and Reflection. It is a 2001 journal entry written shortly after I first became home/bedbound and unable to speak more than a few words above a whisper. I had hoped to write something brand new for the purpose of the magazine, but regretfully I was too sick at the time, so I had to go with something already written.

In the magazine, you will also find some fabulous contributions from:

Dominique of 4 Walls and a View
Sue of Learning To Live With CFS
Jolene of Graceful Agony
Renee of My Autumn Years and Renee's Reflections
Shelli of A * Musings and Living the CFS Life

This is my first magazine publication, so I'm pretty excited about it, and feel privileged to be included with such wonderful writers and some fellow blogging friends I've long admired.

If you'd like to see the magazine and any of the above articles, you can go to Life Skills Magazine and subscribe. It's free!

Well done to all involved! And much gratitude and thanks to Dominique who invited me to participate, and Ayo (the magazine's founder and editor) who accepted my contribution. It's been such an honor!

 Edit: Links have been removed as the magazine has been discontinued. 

Thursday, June 3, 2010

As Time Goes By

Although I've had a lot on my mind to write and share, my health has regretfully been too poor for me to really do so. This being the case, I thought I'd instead show you a glimpse into the little world that exists outside my window.  There is a mesquite tree in the small courtyard by my room, and it is quite the hot spot for little desert dwellers. My dad put some feeders on a few of the tree's branches and it is amazing the amount of birds that flock to them. Woodpeckers, cardinals, hummingbirds, mourning doves, quails, cactus wrens and lots of other birds I would have no clue how to label. I even once saw a beautiful, large hawk perched on one of the mesquite's branches, keeping guard and watching for prey.  I also get an amazing amount of bunnies, squirrels and other critters who come to visit me on a regular basis. So, although there's rarely much activity going on inside, there's a lot going on outside.

A bunny finds a home in my courtyard

...and has already made friends with her neighbors

A squirrel steals food from the bird feeder

A quail makes an extra special effort to say hello

Two mourning doves and a finch in a mesquite tree
(isn't that how the song goes?)

A finch hogs the hummingbird feeder

A woodpecker hogs the hummingbird feeder

A cardinal hangs out all nice and peaceful

...then catches me taking his photo and gives me the evil eye

A very rare hawk sighting

Cool bird

Same cool bird from a distance (click to enlarge)

That last bird (according to my bird identification book) is called a pyrrhuloxia, which is unfortunate, as it sounds more like a disease. Apparently, they are also referred to as gray cardinals or desert cardinals. I wish my photos of this one had come out better, but he was so far away that it was hard to zoom in clearly enough with my little camera.

Keeping up with the feeders has become a full time job for my parents. They fill them to the brim only to find them empty the next day. I've therefore come to the conclusion that it is quite the inaccuracy to say someone "eats like a bird" to imply that a person is a light eater. As it turns out, birds eat like pigs. :)

Anyway, it's been sort of interesting to watch the dynamics of all the various birds as they interact with one another. Some (like the woodpecker and curve-billed thrasher) are generally completely unwilling to share the feeder, while other birds (such as finches and cardinals) are typically much more willing to make room for everyone.

I've yet to see any coyotes, deer or bobcats this year, and for the rabbit's sake, I'm glad of it. I also have yet to see any scorpions or ridiculously huge spiders lurking around and, for my sake, I'm especially glad about that.

As for life indoors, time passes slowly, and yet, simultaneously whirls by. I am reminded of a quote I jotted down recently:

Mysterious paradox: time, motionless here, gallops out there. In my contracted world, the hours drag on, but the months flash by.
-- Jean-Dominique Bauby, The Diving Bell and the Butterfly
Actually, this quote deserves further comment. For those who don't know the story, the author (the former editor-in-chief of French Elle) had a stroke in his mid 40's that left him with a body entirely paralyzed but a mind fully intact. This condition is referred to as locked-in syndrome. In the author's words, it is "like a mind in a jar."

The one part of his body that Bauby could move was his left eyelid. Remarkably, he was able to use this single movement to communicate. As a special alphabet was dictated to him, Bauby blinked when he heard the letter he wanted to convey. In this way, slowly and patiently, letters became words, then sentences, and ultimately ended in a memoir.
Quite an extraordinary feat.

I of course can't begin to know what this man's struggle and experience was like for him. I feel extremely fortunate to still have some movement of my body, even if most of it is in bed. I cannot imagine not even having that liberty. Still, at least to some small degree, I found myself relating to many aspects of his story. My mind, though significantly slowed and exhausted from illness, is full of ideas, aspirations, motivations and observations. And yet, they remain, for the most part, largely unexpressed. My body lacks the ability to free them, or to free even itself.

I am locked in, and I want out.

In the meantime, life goes on, both in and outside my window. As I lay here persevering, I watch the birds greet each new sunrise in song. They remind me of the beauty around me and of the freedom that lies just within reach. Someday, I will be outside again too, singing my own joyful song along with them.