So, this blog post, written late on a Saturday, when no one really reads my posts anyway, is intended to bring the ugliness and confusion of what is going on for me under the overhead lights, where maybe it can be made less frightening by the of scrutiny of others, like the closet zombies of my childhood. (Confession: I am still a little worried about the potential presence of closet zombies, but that's another post.)
Another thing. Maybe–more importantly–I hope that my writing what feels true in my heart right now can strike a needed chord with just one person.
|Photo Credit: Flickr|
I have found that in life, it is useful to know that things happen in a linear way, that the world doesn't just persist the way that it seems now, that it isn't all pain, all the time, forever. Everything begins at a definite and specific point in time.
This time–although my experience of pain seems more or less like a sort of endlessly re-playing fold in the time-space continuum–what actually happened was that a cycle of increasing pain was set off by a sinus infection triggering migraines triggering fibromyalgia flares and leading to jaw clenching, which then caused terrible jaw pain.
I have already been living with pain. Enough, even, to feel like kind of a bad-ass. But this pain is Big-League pain. It is currently kicking sand in my eighty pound former pain's face and humiliating it in front of cheerleaders on the beach.
So, what I want to put down in writing are the thoughts that have me–that make me see monsters when I hear small noises. I do this because it sucks to be alone. Because somebody somewhere feels this way too. Maybe it's you. Or maybe they need you to reach out to them today.
Do with them whatever seems important to you. Call a friend with MS with whom you've fallen out of touch. Don't forget to enjoy that fact that you can run, if you can run. Hug your kids. Pet your cat. Whatever means something to you.
Thoughts That Go Bump in the Night
People Say to Ask for Help-but How?
Practically speaking, am I supposed to call my rheumatologist or my primary care physician? Do I prudently wait it out until my fifty recent lab tests are all in and they know what might be wrong with me or do I miss work (again) to make an appointment now simply to say "I hurt. Please help?"
Do I go lie down, when I know I will feel just as bad after I get up, or instead just get dishes done, so that Mike won't have to? How much help do I ask of family members, and how much is burden unfairly placed?
How much do I tell people? There is so much weighted into the words "How are you?" when how you are is on the knife edge of a scream, holding panic at bay in favor of duty or stubborn will. Any way I answer this question makes me feel crazy.
Do you really want to know, or not? Even if I don't have a brave face to put on it?
How Much Worse Can It Get?
This is a very scary thought, a Zombie Apocalypse-level thought, in fact:
If this pain dwarfs the pain I was in before, how much worse can pain get in the future? And how much can I live with?
When Do I Stop?
Will I know, if and when that time finally comes when the right thing, the sane thing to do is to say:
"I cannot work."
"I cannot drive the carpool."
"I cannot be on the committee."
What will be left after that?
Until then, or until things get better, is the right thing to do to just keep dragging my body through day after pain-ridden day of work and responsibilities, hoping for the best?
Is it Worth It?
Every day, every hour of this last week I have had to remember that my children need me, remember that my husband and parents love me, remember that I actually love my life, because my mind keeps asking
"Is it worth it?"
Is it worth it to go through all these motions day after day when every breath in and out carries an experience of agony with it? When the only salvation from the pain is to distance myself from my experience of everything so that I can survive, but that, in so distancing, I feel farther away from love, from pleasure, from laughter, as well as from pain?
Yes, yes, yes, it is.
It is, because my husband sent me flowers on Friday at work just when I felt I might easily sink into the earth and no one would really notice, and, for those few moments, I felt loved and seen all at once and I knew I had the strength to go on because of it.
It is, because my six year-old's hair smells like sunlight and is warm against my cheek.
It is, because the world still needs me. (Who would put toilet paper on the shopping list for God's sake, if not I?)
Life is like this game of chance. I can place my bet, at higher risk, on the side of getting better, thinking everything will work out soon. Or I can fold, and lose everything I might have gained if I stayed in the game. There is no way to know when is the right time to fold, so I am staring at Time, trying to decide how to place my bet.