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Written by Jody
It is a fearsome thing to find oneself living outside the camp. As the sickness of Chronic Fatigue Syndrome causes the circle of life to shrink, as the chronic element reduces our contacts with other people, we find ourselves moving (or being moved) further and further away from the campfire.
And as we lose more and more of our ability to take care of ourselves, the need for help from other people in our lives becomes more stark. The less we have of it, the more we are aware of how much we need it, and the more helpless we become … and the more aware of our helplessness.
Terror inducing. Rage inducing. Grief inducing.
And all the while, the illness has rendered us unable to fill our days with positive satisfactions or even mindless activity. Activity … just isn’t on.
Lie in bed staring at the ceiling. Sit in a chair staring out the window. Stare at a TV screen. Though many of the most seriously ill can’t do that, it stirs up neurological symptoms.
Hobbies? Can’t do them. Reading? You’ve gotta be kidding. Call someone? Not during times of extreme crashes or maintenance lows. Conversation becomes impossible to partake or to follow.
So … meditate or, too often, brood and fester about the losses.
The lacks. The glaring absences.
The gaping holes.
And hope to blazes you don’t fall through one of them and plummet …. to a place of no return and complete ruination.
I have lived there, in that place outside the safety of the camp, for some years. Underlying all was a bedrock of terror and anger. I was terrified of what might happen to me because, outside of my family and later my naturopath, Dr. Upcott … I was alone. And I was furious to find myself this alone.
I was stymied to realize that if I were to simply … disappear … I would make scarcely a ripple as I went under, and hardly anyone would even notice that I was gone.
I’d like to say that I perservered and overcame this terror and anger by sheer virtue of my character. But that didn’t happen. The only reason I am no longer distraught, obsessed and devastated about my distance from the campfire, is because I’m not as far away from it as I was.
I know I’m very lucky, as I survey the world of the chronically ill. I have a family that loves me. I have a naturopath who is healing me and believes in me.
And, I have a computer.
Because I have a computer, I have been able to find work freelancing online, for people who I admire and trust. Making some money helps bring me closer to the campfire. You better believe it does.
Because I have a computer, I’ve been able to become part of a couple of online communities, a CFS forums and Facebook.
I once again have a face, a name, a presence. I cast a shadow after all, create tiny ripples that I can see for myself are really there, and have an effect on someone in the world. This has been gradually opening and unfolding over the past year and the novelty of it has not yet begun to wear off for me.
To make a difference. To be known.
To be anticipated and welcomed, and missed when it’s time to go.
There are times I still fear that it might all go away again. I know it can happen. I’ve just come out of an extended exile and I’m not eager to go back.
But this I know. The sicker I got, the further away from the campfire I was dragged. And the further away I found myself, the sicker I got.
My naturopath has helped me to regain a good deal of my health, and we are going for the complete package. As I became healthier — stronger, steadier, better able to make my brain work again — it has become easier to do what was before impossible. Bring myself back into the presence of others.
And I see very clearly that at least for me, at this stage of things — it works both ways. The more ill I am, the more it cuts me off from the world of humanity. And the more I am cut off from humanity the harder it is to recover from being ill.
Fortunately for me, I’m moving in the right direction now. The more I heal, the more of life is accessible for me. And the more I access that Life … the healthier I become.
I’m aiming for a front seat at the campfire. And then I’m going back into the shadows for the ones still outside the camp.