Falling on My Mind

:: Blog Warning: Conditions Heavy, Proceed With Caution ::  This is the fourth in a series of blogs about falling--two light and two not light.  (Knowing How to Fall, Knowing How to Fall - Part II, Falling Down the Rabbit Hole).  With the next blog, after two blogs that forage around the underworld, the shadow side of human nature, we return to light fare.

My recent falls involve not just my falling and getting back up, my falling into total disability, and my fallen dreams for the future (heck, I haven't even written about that because, well, I still dream), but also involve my falling expectations for my cognitive abilities and people.  Buddha would be proud.


I've lost many of my cognitive abilities to ME/CFS.

For example, I cannot read much.  Aside from the sheer effort, I can't take in long passages, I often can't make sense of writing that combines numbers with words, charts appear to be foreign objects, research articles must be glanced at and information taken in in buck shot form.  Many of us rely on others with our illness--those whose brains have not been quite so affected--to read and keep us up to date on the research, which is why so many of us feel deep gratitude for our advocates, particularly for people who take an interest in this illness not borne of necessity.  Needless-to-say, when you have a lot of time on your hands and no physical energy, being able to read would be nice.  I used to read one to two books a week, and now I am lucky if I read that many in a year.

I find it a marvel that I can sit here and write. And I say that knowing that that ability is tied to the fact that I am just pulling stuff from me and not having to put together information from other sources, a thing I find it nearly impossible to do, save my just having recovered enough cognitive function to be able to figure out how to put a link in a computer document.  Besides, writing has always come easily to me.

(Shhh... Don't listen to any of my teachers who might whisper differently, and thank goodness for my Legal Skills professor, a one-time editor of Stanford's law review, who--despite what other law students thought of my writing ability--bled red ink on everything I wrote for much of the first year.  I will be forever grateful that I had the most demanding Law Partner/Legal Skills professor at William and Mary's Marshall Wythe School of Law EVER.)

However, as devastating as those losses might seem to some, the change in what I believe to be true about people and their general capacity to be, well, human has been even more difficult to cope with.

What I thought separated us from the other species--our general capacity for compassion, our ability to put ourselves in someone else's shoes, to behave as if "there but the grace of God go I"--appears to me missing in action for so many of us ME/CFS sufferers.  Then again, I happen to believe in the part of the Bible that says, "You ARE your brother's keeper."  (Genesis 4:9)  In my life, my deeply held spiritual beliefs have taken that charge a step further.  I believe we are our brothers.  When the delusion of separation is removed, we are one with each other.  I could go on to speak to what we do to the "least of these," but you probably get my drift.

That is, I've lost a belief in humanity when it comes to healthy people in general.  I can't stress the word "general" enough because most everything I write about here is a generalization, though real lives are lived specifically between the generalities.

When push comes to shove it seems that in life (where else would it be?).... But I must digress and admit a fondness for cliche (if you haven't figured that out by now, then you're not paying attention).  :: Cliche Watch Ahead ::  When push comes to shove in life, it--taking care of business--often boils down to people just taking care of their own.  And if you have no "their own," well, "Tough nuggies... no benevolence for you."  However, when it comes to ME/CFS and other relentlessly debilitating illnesses, their own often walk away too.

Oh, don't get me wrong, there are plenty of compassionate people out there, including the people reading this blog, even if some of us with ME/CFS know only a few.  What I mean by that is I am well aware that there are specific people who possess the capacity for true empathy and compassion and there are also specific church communities that seem to be gifted at caring for their own, though I've heard of many more who are not.

The horror stories that ME/CFS folk recount, however, has suggested to me that my experience--the let down I have felt, the mismatch between what I thought was true about people in general (and certain people specifically) and what in fact is true--is more the norm, and also that a general capacity for compassion--that is, true empathy and compassion--is, well, generally (not necessarily specifically) lacking.

The following is one person's account of the experience:

My joie de vivre shuts down very quickly when I find myself alone for years in de desert they call ME and all the people I was a loyal and loving friend to drop as flies one by one until there's no one left. When the last person you trusted your life with betrays you, and you look around and see there is no one left who 'has your back'. That from now on you will have to figure out things or yourself, no one to ask for advice or back up. You have been looked at, used, chewed on, and vomited back up. It's a scary, lonely, isolated place to be.... For me it is looking at the world with a thick plastic window between me and the world.... I can not relate to those people any longer, I can not understand that while they seem to have everything, like health, friends and family, they are not happy. I would give anything to have just a tiny percent of that. I cannot understand how they (the medical establishment, the government, the community) can look at me and see a sick and dying person and just stare and do nothing. So I am doomed to spend my days in the desert, sucked dry, waiting for the vultures to come and set me free.

There are times when I am overwhelmed by the collective suffering, the collective loneliness--my personal suffering pales in comparison.  I am also incredibly grateful that there are people with this illness who have loving friends and family and compassionate doctors.  

If you have never been to a gay pride parade, you will probably not know that when P-FLAG members (Parents & Friends of Lesbians and Gays) march, they are cheered.  People get tears in their eyes.  Why?  Because so many gay people have been rejected by friends and family.  Even if they have lost all of the support that once moored them to this life, they are able to survive and build new lives in pride just knowing there are straight people willing to stand with them and up for them.

This is how I feel about the friends, partners, and church communities that stand beside and get behind ME/CFS sufferers.  I want to break away from the sidelines, like at a gay pride parade, and just run out and hug them... shower them with love for their decency.

My heart has not been turned into stone by this collective experience.  I continue to have compassion for healthy people.  I understand that people do not want to think about being disabled and that transfers into not wanting to see disabled people because we make people feel uncomfortable.  I totally understand.  It's similar to the way I feel about sadness: after my father died I famously said to a grief therapist, "I don't like being sad; it depresses me."  They also don't know what to say in our presence.  Better to not see us than for them to feel awkward.

I was once at a party, one of my few forays out of the house.  And I was sitting among 5 or 6 people I'd considered friends.  A one-time close friend was going on about all of the changes associated with aging, the addition of one symptom after another, and how eventually, if you live long enough, you become disabled.  Then, he said something like, "And if I were disabled, I'd just want to die."  Suddenly, everyone became aware of my presence and there was this long pregnant pause.  I piped up, "Well, you might be surprised about what would cause you to want to stay alive.  Just hearing the birds outside my window in the morning is enough."

I said what I said without acrimony, and I was open to this small handful of people to continue on with the discussion.  But the conversation moved quickly on to another topic, and I got the distinct impression that I had made a social faux pas by even addressing his remark.  That by addressing it, I was calling attention to his insensitivity and was therefore being insensitive myself.  Thing is, I didn't consider him insensitive.  I know people feel this way.  I am now beginning to see that people in general are more thin-skinned than I ever thought, and I've come to understand that people suspect that others think and feel as they do, which explains why I've always thought so highly about people in general... I have thought highly of people in general.  (Think about it... that makes sense.)

Also, life is busy.  I get it.

The physically healthy who possess the capacity for compassion now seem as rare to me as the human interest stories we see in the form of one species of animal coming to the aid of another.  (Perhaps we find it interesting that animals can show more compassion, a willingness to being vulnerable, a willingness to put themselves at risk of personal discomfort, than we seem to be able to do.)

Sometimes I think we are a lot more like other animals than we like to believe ourselves to be.  (We are definitely more murderous than most other mammals.)  Not only might there be something deeply instinctive in people that causes them to turn away from the sick, but it may be that we are a lot more like pack animals than we care to think, pack animals who turn on the weak and sick.  Admittedly, by thinking this way, by relieving people in general of any obligation to care for their own (as in their own species), I cope better with my having become disappointed in humanity in general.

By dropping my expectations about humans, I am less likely to be disappointed by them, including specific humans, and as a result, I don't add to my own suffering while struggling to cope with the loneliness this illness ushers in for so many of us.

All in all, big changes in my world view, a falling out of love with some of my most important deeply held beliefs.  As my ex-X2 said when she left, "It is what it is."

I was rather attached to my love of humans and this belief I had in our humanity.  I have few, if any, expectations now, though I still love people... in general and a few most specifically.  As my ex-X2 always used to say, "People. All you can do is love them."  And she was right.  As I said, the Buddha would be proud.

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A sampling of ME/CFS and other Chronic Illness Related T-shirts and such (more found at ClaireliciousDesigns):

I have ME/CFS & I'm not depressed.

Imaginary illness.  (A ME/CFS and a chronic Lyme version.)

Social Pariah.

My wife has ME/CFS & I care... Won't you?  (Part of a series of T-shirts for the wives, husbands, partners, and friends of people with ME/CFS and for people whose kids have ME/CFS.)

Love is now with this reality.

Love is now with this reality (full saying).

The toughest job I've ever had.

I'd rather be walking.

I don't look sick...