(driving to yet another lesson, practice, class, one of my children’s activities, someone made a comment about my hysterical illness, to which I made the following reply. While I sat waiting for said kids to be done with their activities, I continued my rant to myself.)
I don't think you have any idea how much energy it takes to live in my body.
I drive around town with the AC on max. My right side is so cold that the bones in my shoulder and behind my ear ache but my left side is still red, rashy, and burnt from what sun and heat come through my tinted windows. The stark summer glare through my windshield gives me a migraine in about fifteen minutes. If I make more than three in-and-outs of my car (into a store, a meeting, an errand, the house) even using my special SPF clothing and a sun-umbrella, I will be queasy and I can't bear to be touched. Tomorrow my muscles will ache as if I'd worked out too hard. The hotter the weather, the quicker I reach my limit. Today was 115F/46C.
My good days feel like I had the flu last week; most days feel like I had the flu yesterday; bad days feel like I have the flu now. Everyday I over-react to minor variations in heat and cold, drafts like the air conditioner exacerbate the over-reaction but being too hot makes me claustrophobic in my own body.
My ankles swell and feel like overstuffed sausages. The joints in my toes ache. My elbows feel like live electrical wires run through them. My knees crack and pop and feel like dull pins are stabbing from the inside out. Water burns my stomach but I am so thirsty. My face itches from the inside. My eyeballs feel like they are filled with heavy, too-dense jelly.
When I try to do just a little more, maybe pick up some dinner between picking up kids, I exhaust my body and my mind begins to suffer. I inadvertently cut people off in traffic. I miss my freeway exit or drive past my turn. I constantly have to check my calendar because I can't remember what the next stop in my day is—even though I've looked a dozen times already. I can't remember what is planned for tomorrow or if what we did was last week or the week before or last month. I forget between the car and the grocery store what it was I came to get, even if it was only one item.
When I'm tired, which is everyday from the moment I arise to the moment I pass out, I cry too easily. A commercial for allergy medicine chokes me up. A casual criticism from a self-absorbed teen or distracted husband can make me cry so hard I ought to pull out of traffic.
I read a book, listen to a lecture, watch a documentary and often can't put more than the main theme into words. I have a thought, draw some correlation between the new subject and something I've known but before I can pull up my phone or a notepad or my laptop, the connection fades leaving a weird twilight in my mind, a sense of brilliance remembered, the comfort of darkness unreached.
I have moments of clarity after I've crashed on my bed with my feet up and my head supported. I litter my friend's Facebook threads with wit and thought that I can't sustain in a blog post or even an email. I owe so many people responses but can't wrap my brain around what I wanted to tell them.
And then I feel guilty. Because I haven't cooked a meal in so long I don't know when it was. Because my house is overrun by small animals that spring to life from the accumulated dog hair, cat hair, and dust. Because I flinch when someone wants to hug me. Because I can be cogent occasionally for other people but pick fights and speak rudely to my family.
And I am angry that this is as good as I get. That it costs me hundreds of dollars a month in pills and drops and remedies to maintain more-or-less this state of unwellness but medical professionals look at my blood-work and say nothing is wrong, maybe a shrink? That people who agree that I'm unwell tell me it is my fault:
“Just suck it up, get on with things”
“Mind over matter”
“Have more willpower, just do it”
“Follow this diet”
“Read less on the Internet”
“Take this curative I'm pushing”
“Quit thinking so hard, just let it go”
“If there weren't some payoff for you, you'd be well”
“Pray more, confess sin, give it to Jesus”
Okay. the last one hasn't been said to me personally but it has been the fix suggested in get-well articles I've read online.
I'm sick and tired of being sick and tired. But I'm really tired of all the ways I am blamed for my state. We are not entitled to exuberance and vigor. Bigger, faster, louder, brighter is not our birthright. Sometimes abundant life is deep and still and quiet and slow. And often it hurts. A lot. In our New-York-minute, fax-it-yesterday, multi-tasking, texting-while-driving culture, maybe this condition is my divine gift to remember the timeless, the wordless, the boundless. The weaker my body, the more incoherent my nervous system, the more surely I meet God. My visions come easier. My healings are stronger. My assurance of divine reality is more certain.
Why do I continue to fight against this thorn in my flesh? God wrote this destiny into my Being. Why can't I embrace the gift without counting the cost? Why do I disregard the gift to bemoan the price? Why do I listen to the chatter and static instead of God's holy descant in my soul? I long to be one with the Presence yet I fight it with everything I have. Was there ever a more reluctant mystic than I?
Sent from my iPhone