The Illusion Of Control

Nothing like a sizzling fire in Spring

It’s around 2 p.m., on Saturday, the 28th. I’m dutifully sitting at the counter of a local cafe, writing. Earlier, it was raining copiously. I dreaded leaving the warmth and comfort of my home, but finally got myself up and out.

These days, I feel compelled to hide and protect myself. When I’m feeling even sicker than usual, dealing with other humans becomes extra challenging. An unkind look, unintentional rudeness, or otherwise, cuts into my insides in a way I cannot handle.

I saw my Gastroenterologist on Friday. I guess my testing for parasites came back negative. I was unhappy to heat that he thinks my Crohn’s disease might be flaring. Hopefully, he’s wrong.

I’d rather have numerous roundworms squirming throughout my belly, then have to contend with my recalcitrant autoimmune disease being active. 

Worms are disgusting, but they can be gotten rid of fairly easily.

The same isn’t true of Crohn’s disease-hence the label, ‘chronic illness’. 

The last time I had to deal with the disabling, painful, and exhausting disease was around half a lifetime ago, when I was in my twenties.

I’ve gotten used to being relatively healthy. In fact, I’d arrived at the point where I was pretty much taking for granted that major diarrhea, fevers, intestinal infections, and joint pain, were things of the past.

I know in the 20 plus years that my illness has been quiescent, new medications have been developed, that are potentially more effective than what I was taking in my teens.

Yet, there is still much more that is unknown concerning autoimmune diseases, like Crohn’s, than there is about H.I.V., or even possibly, Cancer. 

Often I’ve met folks who have no concept of how serious Crohn’s disease can be. “Why don’t you change your diet?”, they’ll say, or, “You should go to a natural health doctor.” I imagine these comments are made more out of ignorance, than anything else. But they do not fail to piss me off!

Yes, I’ve spent years playing with dietary changes, and I’ve seen numerous natural health doctors, too.

In my early twenties, I had pre-digested liquids pumped into me, each night as I slept, through a tube in my chest. This went on for around 6-months, with the hope that it would heal my insides. 

Through my early years, I took a multitude of immune-suppressing drugs, and other fun stuff, to attempt to calm the inflammatory process down. I know well how impossible it can be to treat this damned illness.

Diseases like Crohn’s, which are nearly immune to treatment, are hard enough to take on their own. The lovely New Age Movement, along with the idea that, ‘you create your own reality’, can make it unbearable.

“Somewhere over the rainbow…”

Being blamed for what is already burdensome, and out of control, adds self-doubt into the equation, which can be devastating.

Life would be so much easier if people were more understanding, more compassionate, and more able to see that their own good health is not necessarily a deserved gift, but something they’ve been extremely fortunate to be given.

I’ve discovered that the one area where I have control, is not in what happens to me, but in how I respond emotionally to those events. I wish it were different, but it’s not.

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