Home » Acceptance » we have what we seek – it is there all the time

we have what we seek – it is there all the time

DSCN3507On Wednesday, I saw a new doctor- another specialist in infectious disease.  Around his office, there were three iron sculptures of humpback whales.  The whales were surging upwards, breaking the line between sea and sky, frozen in their spiral dance together.  Lifting.  This doctor wore a tie printed with Van Gogh’s The Starry Night and he tipped back in his chair, propping his feet up on the desk.  He looked me in the eyes and said, “You have my deepest sympathies.”

We walk through the last fourteen and a half months together.  He reads through my files- blood labs, scans, emergency room visits, biopsies- and listens as I half-heartedly explain the intricacies of this illness.  I tell him the big problems- that I barely have the energy to move through the minimum functions of life (bathing, eating, chores)- and about the pain, which flares and shrinks but never leaves.  I also tell him the little embarrassing details, like how I sometimes accidentally start peeing in the middle of any random activity and my internal muscles are too weak to stop the stream of urine down my leg.  Glamorous, huh?  And I tell him the way my neck hurts when I wake up at night sometimes so I have to take a warm bath before I can go back to sleep but afterwards am too weak to get out of the bath so I lay in the empty tub for a while, while my dog stares at me from the corner of the bathroom.  How to paint the picture of my world for this man?  He examines me in the usual way, shining a bright light across my pupils and pressing his palms across my belly to search for my spleen.

He says we need to find an accurate description of this disease, that CFS/ME is a disorder that may cover my symptoms, but the presence of Epstein-Barr Virus in my DNA for over fourteen months is the primary concern.   He hypothesizes that this virus is still active because I have a rare genetic defect in my B-cells, which are a piece of the immune system.  I don’t know what this means, really.  He says he will sleuth out a specialist in immunology who will be able to do the right sort of delicate blood analysis to see what exactly is wrong with my B-cells, and then brainstorm a way to fix them.  One idea is using a chemotherapy drug called Rituxan, which my grandma received during her treatment for lymphoma; I remember it because it is bright red and looked like Kool-Aid dripping through her IV.  Rituxan kills off B-cells, so it might help, but only if afterwards my B-cells grow back.  This doctor says Rituxan is not a benign treatment and I ask him what the stakes are and he says it could be lethal.  He says that, if he were in my shoes, he would be so unable to live in the condition that I am in that he would probably take the risk.  But before we can consider this, I must see the immunologist.  That way, if something goes wrong, he “will feel bad, but not feel guilty.”

This doctor is compassionate, patient, and seems determined to help.  I am grateful to have him on my team.  And he confirmed my growing suspicion, despite my hopefulness, that this illness will not correct itself spontaneously or get better gradually.  No amount of rest, nutrition, or time, is likely to reverse things.  How bout a miracle?  The overwhelming feeling I am having is that my life is going to continue to be quite difficult for a long time.  We are uncomfortable with mysterious, prolonged suffering, because most things in life have an explanation, a remedy, a forecast, or at least a process by which to improve.  My illness has none of these.

Sometimes, I can see that suffering and prosperity weigh about the same.  It’s just a preference that we have (especially in this culture), towards enjoyment, choices, ambition and self-creation.  Yes, I prefer to feel well and to be autonomous, but at the end of the day (or the years) suffering is just one part of the messy tapestry of life, and what matters most is that I am choosing to participate.  Enter, freedom.  Enter, peace from God, by which I can welcome this long era of difficulty with a spirit of exploration and without resentment.

This illness is proving to be my ultimate wilderness.   It is a foreign land, with valleys and streams, dark canyons, and warm fields of wheat.  There are glaciers on fire and wildflowers hanging from the clouds, cool mossy enclaves and moonless nights, hollow tree-trunks in which to hide and herds of lavender-colored fawn.  Rapid rivers open into placid seas.  Humpback whales leap out of the water and float into the starry sky.

7 thoughts on “we have what we seek – it is there all the time

  1. The ultimate wilderness analogy is perfect. I definitely feel like I’m in a world of wild valleys, dark canyons and moonless nights. Great, inspiring post as always. I look forward to hearing what the doc has to say after the brainstorm. Rituxan seems to be creating a lot of buzz, at times I would try anything but at other times a drug like that scares me.

    • Hey girlie,
      Thanks for your response. Yep, illness is a total wilderness, just as disorienting, challenging and frightening as the natural world can be. Well, way more challenging on every level than any exploration I’ve ever done! I will definitely keep the updates coming, especially if I try a treatment like Rituxan. Do you have a similar situation with EBV pcr? I know Rituxan has also been used in clinical trials for CFS, with some success. Thanks for your feedback and support. I hope you got that sleep you were praying for 🙂

      • I did get some sleep, thank goodness! My docs have never been able to identify what virus is still in my system but tests show there is something. But as EBV can be specifically tested for they don’t think it’s that. Research funds for trials of Rituxan are being pushed by the big UK ME charities at the moment. Fingers crossed the results are life changing for us all.

  2. Beautiful post. I needed that, I needed the inspiration to think of my physical state as my own wilderness. I am a big connector to nature and the wildness f the earth, and have been increasingly feeling a draw to learn more about the wildness and cyclical journey of us women, and have thought of my emotional journey as a journey through the wilderness but had forgotten that recently and hadnt put two and two together! And, I hadn’t thought specifically of my body’s state as being my own wilderness. It makes it feel beautiful and unique, scary and full of unknowns to find and explore, but also adventures and discoveries that I never knew were there – in a good way. And a bad way I guess too!
    I’m in bed with a slipped disc and have been the last six weeks – it unbelievably sucks. My chronic fatigue is having a big fat flare up with it. How’re you doing? X

    • Hey lovely. Thanks, as always, for your encouraging response. I am so sorry to hear about your slipped disc… that sounds really rough. I hope there is someone close by to take care of you and keep you entertained. Being stuck in bed is the pits. Yeah, I am realizing that the kind of “natural forces” I used to crave by climbing mountains or hiking into dense forests… are completely eclipsed by the force of this illness! I mean being sick is way less glamorous than hiking, but… Still, with illness, I never know what the next weeks holds, or how I will adapt to do things with my new physical limitations. But I am NOT thankful for this most of the time, and a lot of the time I am a complete cry-baby who is not musing over wilderness metaphors. Just to be clear on that. Anyway, stay in touch, I am glad you connected with this post.

  3. You should turn this all into a book and become an author the way you write Is so beautiful, and your optimism is truly wonderful. You are very inspiring:)

    • Awwww Ellen you’re so sweet. I am proud that you are my cousin— you are a beautiful and inspiring person, too! Maybe I could write something coherent and interesting… Someday. Maybe someday (there’s a lot of those in my life). Thanks for your kind words!

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