CHRONIC HOPE

Publishing even a small book about radical self-care is, evidently, a sure fire way to run headlong into the many ways in which I still fail to take care of myself; sometimes in epic ways.

Despite my recent experience at Montgomery Bell Park (see “Choice Rock” below) I’m still tired. In fact, I’m profoundly tired.

As I’ve said before, I can’t begin to express how tired of being tired I am. And not only am I tired of being tired, I’m tired of hiding the fact that I’m tired from my friends, my family, and even from myself on some level. But the fact of the matter is, I’m not functioning very well – physically, anyway – loath though I am to admit it. (I’m forcing myself to deal with the fact that I have long viewed my fatigue as a monumental, personal failure.)

Being overly tired isn’t anything to crow about in the day of over achieving supermoms, and those of us who suffer from a lack of energy (to put it mildly) aren’t eager to call attention to this glaring flaw in our character. Instead, we suffer silently; sometimes for years. We quietly deal with virus’ and infections that don’t go away; we wait for “up cycles” during which we run ourselves ragged trying to get as much done as possible before the fatigue bears down on us again; and on tired days, we climb into the backseat of our cars between every appointment – for a nap that more closely resembles a coma – while resigning ourselves to the hazards of potential dehydration when temperatures outside climb near 100. I realize that this in no way resembles self-care, but when you’re single and an artist – making a living in whatever way you can – you do what you have to do, right?

My tired days aren’t a complete secret, because the sort of mind numbing, debilitating fatigue I’m describing can’t be hidden entirely. But at this point, there are only a tiny handful of people who know the true extent of my suffering and who bear the brunt of my fear and complaining. But I’m about to expand my circle of friends-in-the-know. It’s time to let you all in on my dirty little secret:

I suffer from Chronic Fatigue Syndrome, or CFS.

There. I said it. This is no small admission. And yet, is it just me or does the pronouncement fall a bit flat? (I mean, who ISN’T chronically tired in this day and age?)

A quick word, if I may, about CFS, denial, and shame. Those of us who have, at some point, dared admit to suffering from Chronic Fatigue are often met with derisive laughter and an assurance that everyone does, indeed, suffer from chronic fatigue in this day and age. Either that or we are silently chastised for not being made of tougher stuff. Or perhaps we imagine it; perhaps the real truth is that we chastise ourselves for not being made of tougher stuff, and project this particular form of self-flagellation onto the people around us. I suspect it’s some of both. In any case, combine toxic amounts of self-doubt with the lack of a definite, medically sound, physiological cause of said condition, and the result is a vicious combination of denial and shame. (Recently, my son came home while I was napping, and I leaped out of bed so as not to be “caught” resting.)

After suffering from this condition for years, I have only recently been willing to put the words “chronic” and “fatigue” in the same sentence. This, I suppose, because in addition to copious amounts of guilt and shame, I still fancy myself a mover and a shaker, as do a lot of other people, I think. And Mover/Shaker types don’t have chronic tired days, you see. We MOVE. We shake things up. We are relentlessly creative and we encourage other people to move and to shake things up and to be relentlessly creative, too. We do NOT spend half the year scraping ourselves out of bed after the third nap of the day. But the hard truth – and it’s time to admit it – is that I haven’t been moving and shaking, effectively anyway, for several years now despite a heroic (if I do say so myself) effort. Instead, I’ve been fighting an uphill battle.

CFS is tricky. According to the Mayo Clinic, the condition “worsens with physical or mental activity, but doesn’t improve with rest.” Great. And despite the fact that a person suffering from CFS has symptoms that are marked and debilitating, treatment – at least modern, medical treatment – is difficult in that CFS is not the result of any clear, physiological abnormality. This is both good and bad news; good in that this is a relief of sorts, bad in that treatment is hard to come by and generally ineffective.

After years of research, I’ve come to believe that the traditional Hindu system of medicine, Ayurveda (popularized in this country by well known physician and writer Deepak Chopra) comes closest to getting it right. According to the Ayurveda, CFS can be directly traced to a nervous system imbalance (generally a result of stress) and toxicity in the body. Ayurveda alone, so far as I can tell, offers an unparalleled and comprehensive approach to CFS. And though for years I have fantasized about a week at The famous Raj Health Spa (in Iowa, of all places) getting personalized and intensive treatment, the $4800 price tag demands that this idea remain, for now, within the realm of fantasy.

I do what I can. I don’t appear to be ill, for the most part. No doubt this has something to do with the veritable smorgasbord of supplements I take, along with an uber healthy diet and fairly regular exercise, when possible. And now, for the first time in years, I have taken a genuine vacation (or “staycation” as they say; meaning that I am vacationing without leaving home.) My original intent was to “get better,” at least to some degree, before fall comes bringing with it a very, very busy schedule. No such luck in that regard; as yet I can’t discern any improvement in my physical condition. This cycle is as bad as they get, and it will last for as long as it lasts. Sigh.

Will I ever heal completely? I believe so, yes; because as chronically tired as I am, I am even more chronically hopeful. And, oh, the things I have learned as a result of this illness – especially, during this very intentional rest period. Such lessons deserve their own column, and I look forward to writing, in the near future, about one dim but dawning realization after another.

In the meantime, the words of spiritual luminary Emmanuel ring true and bring comfort:

“So much can be gathered

in that time of quietness, of introspection,

that illness forces upon you dear souls

who are always outer motivated.

Such times can be used

for the alchemy of taking the clay of physicality

and breathing the spirit into it

that will change that clay into gold.”

Advertisements

One thought on “CHRONIC HOPE

  1. Dear Friend, you are my hero for sharing your plight with the rest of us. Yes, I also still have Chronic Fatigue days when I think I should just be able to buck up and keep going. The pain of fibromyalgia also isn’t helpful. Fortunately, I do find that I can forget about both, for the most part, when I’m teaching and always (so far) when I’m performing – but the price is pain (on a scale of 1-10, sometimes an 11) and time needed to rest and recuperate. All we can do about what other people think is try to educate – gently – and then try to ignore others’ opinions when that doesn’t work. And, yes, you ARE a mover and a shaker – and that has never been more clearly demonstrated than in your post. Thank you so very much for your courage and eloquence.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s