Wednesday, June 22, 2011

Reluctant Mystic

(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”
“Exercise more”
“Eat less”
“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. Yet, 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.

So then, 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 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


  1. Prayers for you reluctant mystic, and I hear what you are saying. It is hard, so very hard, in the middle of the pain to be able to say, "I'm thankful for everything." God is there, always, but why we fight so hard to escape where He has us right now...that I struggle with a lot. Cyber hugs, that won't hurt your skin, and much love. Another Mystic.

  2. I hate that you haven't found help in the medical profession. I know this is not imaginary, and it should be taken seriously. Have you tried an academic medical center. I've oftentimes found greater compassion and understanding (not to mention more time spent with each patient) in university physicians, but I am biased since my husband works for a university.

    I do resonate with your frustration over the lack of understanding you have received from others. I am currently struggling with pregnancy nausea and vomiting, and my grandmother has definitely made comments to suggest this was all in my head, just because she didn't deal with this. I wrote a little post (not yet published) sharing some thoughts yesterday that you have captured much more eloquently here.

  3. My heart goes out to you, my daughter. I wish I could kiss your skinned knee as Mom did when your were a toddler, and it would be all better. But, life is more complex than that, and as you know I cannot fix my own owies much of the time.

    I was cheered by your conclusion, the hope that I sensed is still there even if it becomes buried beneath layers of conscious crap. It reminds me of many of the Psalms, which reiterate the truth that God is still God! (I think I told you that I am in the middle of a project that involves paraphrasing many of the Psalms, omitting the imprecatory stuff and the god-did-it-to-me stuff, and rejoicing in the present reality of God.)

    With the forecast of 109° F in your town today, all I can suggest is that you stay out of that weather as much as is humanly possible. And don’t forget to put your feet up with a cool cloth on your forehead, even if you feel guilty for not doing more!

    One additional thing: It is not your fault! I’m afraid that you learned too much of that kind of crap in my house as you were growing up for it was what I, unfortunately, preached. We both see life and God differently now … hold onto what you experience as you meet God, as you see visions, as you find healing, as you are assured of the certainty of divine reality. Yes, this is the really real, not the physical-material. The physical-material is real, but not as real as the really real. I forget this all too often, too.

    It’s trite, but I say it anyway, God bless you. Love (and kisses), Dad

  4. You are not to blame for feeling like shit. I've got three auto immune disorders, and it took 18 years of going from doctor to doctor in our wonderful health care system to get answers and relief, from three wonderful female doctors. I sense a feeling of inability on your part to take care of yourself and get the much needed rest you should because you are giving up feeling good to drive your kids around to all sorts of things. Should this not be a topic of discussion between partners, and the fact that your wellbeing isn't put first? If your own well is running dry, how much longer can you deal with it like this? And why should the children not sacrifice something occasionally? Seriously, children can learn to vacuum and clean up bathrooms and the kitchen at a surprisingly young age. And it does their brain power good. I remember when I married for the 2nd time, and my children were both in grade school. My husband was appalled at what I was doing for them, and one day I found the three of them in the bathroom having a class on cleaning toilets. It's not abuse. It's excellent life skills. Never feel guilty about designating duties and resting. You are worthy of rest, of peace, of good doctors. Absolutely refuse to discuss your health with toxic individuals who have no compassion, and have never been chronically ill. It's none of their damn business, and if they are contributing to the suffering, they need to be dropped. You are worthy of a good doctor whose empathy outshines anyone else's. You are worthy of good sleep, good pain control if you have pain, and support from your family.

  5. What you are describing is REAL. It is not "all in your head". Have you been tested for Lyme? Lupus?

    IF no one ever can put a name to your suffering, it is no less real. I wish you rest, quiet, dark, peace and acceptance. But most of all I wish you healing!

  6. PS I want to tell you Sandra, that by embracing your gift publicly and telling your story, you are making the world a safer place for other differently-abled people.

    My daughter has a new friend who claims he hears the brain activity of others. Not their thoughts, but a sound that is created by their thoughts. Now I don't know this person enough to know if this has always happened to him, or is a new phenomenon.

    If it is a new thing, I might suspect it as an auditory hallucination that might indicate a medical condition.

    But if he has always had it, then I will accept it for what it is: an evolved sense beyond what is commonly experienced by most of us (and not seemingly a very useful one, but in subsequent generations it may become useful; that's what evolution is all about, eh?),

  7. I just happened on your blog through a comment from another blog. I agree with all the others that are suggesting to keep on trying to find a diagnosis. The first things that came to my mind were just what shadowspring suggested--lyme disease or lupus. My heart goes out to you!

  8. That second to last paragraph... Thank you for writing it. Those words were a gift from God, through you, to me. I am struggling with similar lately, and I appreciate your view. Thank you. Thank you. Thank you.

  9. Just wanted to comment on what you said about counting the cost of the gift. There is nothing wrong with counting the cost - even Jesus did it! That's what Gethsemane was about. When something costs us so much, I think it would be unwise to just leap in without looking - at least a little - first. We do this in the natural. I've never heard of anyone going out and getting a mortgage without first having to think about whether they can meet the repayments, or have the deposit!
    I have lost almost my entire family of origin and my culture to follow God into life, and it took 2yrs of 'counting the cost' before I made the move (and many, many tears after!). I have never, ever regretted it, and have been blessed beyond measure because of it. However, that doesn't mean it didn't/doesn't hurt! The only way I've found to deal with the hurt (or 'cost') is to take it to Jesus, tell Him all about it and sit with it in His presence. Slowly, over time (it's almost been 14yrs now), the pain/cost has gone from a constant, aching, dark nothingness that was almost bigger than I was, to an occasional sharp niggle.
    He gives us the blessing for paying the price, but also helps us to pay it! We are never expected to cope with it on our own... but sometimes it's hard to ask for help.
    And now I have to go look after my 3 boys who are home on a rainy day, all with ear infections! From the sublime to the ridiculous...

  10. I just read your blog. Chiari Malformation. It took me 10 yrs to find the diagnosis for my daughter. We found a Chiari specialist (neurosurgeon) in Aurora CO. He performed surgery on her 2 yrs ago. Though there are always some symptoms that remain - she lives a "normal"life.
    I also thought it was Lyme Disease and lupus. She finally developed over 40 symptoms of Chiari. Dysautonomia is one of the symptoms.

  11. Thank you all so much for your love and support in the face of my ranting. I was able to spend a lot more time this week laying around in bed, and I quit being so squeamish about taking my pain pills. I still hurt and I still overdid in the heat and the sun but the extra feet-up-head-back hours did wonders for my morale.

    I haven't had clinical testing for lupus or lyme but I have done extensive meditational healing work and am convinced that those are not the root of my hysterical illness. The total symptom complex--only touched on in this rant--is more consistent with a total autonomic dysfunction. The main symptoms are a subclinical adrenal dysfunction, fibromyalgia and rheumatic joint inflammation. The symptoms that piss me off the most are decreases in cognitive and executive function--I just can't think/read/write/speak like I used to. Black holes in my brain, we semi-affectionately call it.

    I have seen a lot of symptomatic relief as I uncover and release the demons of my past but the fundamental problem is something structural. The phrase that keeps coming to me as I meditate on my condition is "brain hernia". I've been getting that phrase for months but didn't know what to do with it

    It is amazing that Kathryn tossed Chiari Malformation into the ring here because, as I've looked it up now, a brain hernia is essentially what that is. I am definitely going to be doing some more research on this and looking for professional help as necessary. What I've read so far seems to account for all of my history, something that no other diagnosis has been able to do.

    I love the internet! For the wealth of information at my fingertips and the treasury of friends like you all.


  12. I've been meaning to come over here for days and post a response to this. I'm such a procrastinator. :)

    I guess, in a nutshell, I'll just say "ditto" to the gist of your post. I felt like, when I was reading some of your health challenges, that I was reading my own health biography.

    You are not alone. And I'm here if you ever want an empathetic ear.

    Big hug.

  13. Wow. This post is powerful. "In our weakness He is strong..."

    And forgive me for not being clear on this, but can doctors give you no definite diagnosis? A lot of your symptoms sound very similar to porphyria to me, though of course I am no doctor and I'm sure you must get irritating people self-diagnosing you all the time. My good friend has Chronic Fatigue, something that many doctors still will not recognize - the medical field often seems to really take its time recognizing new disorders. :/

  14. Hypatia,

    wow, never even thought about porphyria! Lots of overlap between its symptoms and those of adrenal dysfunction, according to google. The only thing I've ever been officially diagnosed with is "headaches"--which weren't even a particular symptom when I went in to see that doctor!

    I've undertaken care of my own case since then and haven't killed myself yet. It's been almost four years and, while I'm a long way from normal, I am far and away healthier and stronger than I was.